# Heard from Doc today



## crohnsinct

So I asked them to draw for iron at the infusion yesterday and good thing I did.  The Doc's office called today and said Olivia is quite anemic (I had a feeling).  It is so hard to tell with her because she pushes herself so hard.  Two days before she was admitted to the hospital and received two blood transfusions she swam in a swim meet.  The day she was admitted she carried her 45 pound backpack on her back right into admitting. But given the way she ran the other day,  I knew something was up.  Thank God she has these sports with times otherwise I would have no way of judging.   

They also said her inflammation markers are up (sed rate).  She also hasn't gained any weight in over a month and actually lost a pound over the last two weeks.  I didn't think that was bad given the Prednisone taper but what do I know?  

They asked us to come in Tuesday so he could see her and we can discuss the next step. Doc's must have fun dropping those bombs and watching us obsess over what that step is...higher Remicade dose?  Add Imuran?  Something totally different?  Maybe this is the time to mention EN to support Remi? 

Oh well.  I will be spending the weekend trying not to think about it.  She is a lot better than she was and that is a really good thing.  Nothing I could do anyway.  O is very discouraged but being a good sport anyway.


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## imaboveitall

Girl, do the formula feeds along with the drugs! She'll be getting X amt of cals in a digestible, absorbable form and that cannot be argued against. Even if it does nothing for the inflammation, she'll be nourished regardless of what she's able to eat during the day. Believe me, that peace of mind is so worth it. With all the stress we have over meds, disease itself etc, at least I have not had to stress over V's nutritional state since shortly after dx. I never think about it and her growth is NOT typical for a Crohn's kid. When she was at IBD camp the contrast between her and the wraithlike, scrawny girls in her bunk was blatant.
When you see her weight increase it gives you such a great feeling.
:heart:


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## Catherine

Hi

I am the mother of another swimmer.  It amazing how these kids can train 8 times week while anemia.  How many sessions is olivia back to?  Sarah will doing 4 for the next month and hopes to build up to 6 by july.


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## Tesscorm

I have to agree with Julie...  the feeds have alleviated all my concerns over Stephen's diet for the time being!  I consider his regular diet a 'supplement' to his feeds.


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## Mom2oneboy

That stinks!  I really think doctors shouldn't call with anthing other than positive info on Fridays.  Why tell you that right before the weekend when there's nothing you can do about it?  Grrrrr!  Hopefully, it will be just a little adjustment in the Remi.  How long has she been on it?


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## crohnsinct

Catherine, doc approved her return at 6 sessions plus one dryland a week as of April 1st.  They started their long course training season.  BUT she also runs on her middle school track team so she hasn't really gone back to swimming 100% as some of the days conflict but on some days does both!  She finally waved the white flag today and said she couldn't practice.  I am glad.  I think the docs call gave her permission in her mind to lay low.  She has swam one meet since dx and was on Remi and Pred and got best times in 5 out of 6 events.  She wants the Prednisone back. 

Mom2oneboy - She has been on Remicade since February 2nd (the day after dx).  She did three loading doses then one 7 weeks later then the last one 6 weeks later.  All was great with the Prednisone but then we tapered Prednisone and the fun began.


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## Sascot

It is amazing how much docs can "leave you hanging".  Wonder if they ever realise how much worrying we do until we can speak to them.  My GI just said they think my son should go on Aza then never saw him again.  I had to ask my paediatrician to speak to me and explain everything (and have my little emotional breakdown :yrolleyes.  Hope you get things sorted!
It is definately worth asking about the EN again - it is nice knowing they are getting the nutrition they need.


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## crohnsinct

ERGH!  Have 17 and 8 year old home with some sort of virus with fever...8 year old threw up this a.m..Forget the bubble wrap I am installing a bubble for O to live in!  

Also got a call from my 8 year old's  (the one with the learning disability) school for a PPT meeting tomorrow.  Got a heads up from her teacher that the school wants to cut her services.  These meetings are awful.  

Tomorrow should be fun morning with O at doc and afternoon fighting with the school team.  Hopefully everyone is healthy and back at school otherwise I can add finding someone to stay with the sickies while I am out. 

I know I am preaching to the choir here...just felt like whining.  

Good news though...O's vit d level was perfect so I am guessing that must mean the inflammation can't be too bad as she is absorbing that right or am I delusional?  She is taking 2000 iu of vit d daily.


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## Lilmamma

I hope tomorrow goes well for you, Crohnsinct. 
I remember how difficult it was fighting with the school district when my kids were in school. (They are homeschooled now.) :ghug:


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## Catherine

Sarah's GI did not want her to get back into full training too early as she was worried about weight gain and her body had already begin to eat the muscles..  She has gained back 17 pound so far while on pred, most in the early weeks.  She was also was drinking ensure twice daily to help with weigh gain.  She weight gain has also slowed she now 114 pound.


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## imaboveitall

Cinct, yes, you are delusional to think that O's normal D levels mean her gut is in good shape. Sorry to be a buzzkill. :yfrown:
V's are always well into normal range as is her B12 (highest end of normal and on no supplement) yet her TI is still angry.

I know, I know...trying to make the pieces fit with this is a head bashing experience.
HUGS and :duh: bashing for you


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## crohnsinct

Catherine - yeah, I totally expect the doc to ask her to pull back on training.  I am letting him be the bad guy. 

Imaboveitall aka buzzkill (you kill me) - BOOGERS!   I was hoping something made sense but then the inflammation markers are up and the anemia severe so I guess I may have been grasping at straws. 

Today I picked her up from track with a stomach ache (not usually one of her symptoms) we went shopping for an outfit to wear to her swim banquet tomorrow and she had to run to the bathroom and diarhea...We haven't had a situation like that since she got home from hospital...am I delusional to think that maybe it was just a bug?  Come on buzzkill...live in my dream world with me.


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## Tesscorm

I want to live in the dream world with you! :lol:  Stephen's been having some symptoms and, for now, I'm happily living in a world filled with coincidences!  Just because he had a fever for a few days last week with no cold symptoms, has been falling asleep after school, is having pain when running long distance, having looser BMs, Sed rate up to 22 from 4...  _hmm, could all be coincidental..._  after all, same tests showed his CRP going from 19.5 to 17, HGB finally into the normal range, WBC normal and, overall, is feeling fine.  He's scheduled for an MRE and U/S next week...  so WTH, until then... :cheerss:  :lol:

Crohnsinct - I hope tomorrow runs as smoothly as possible for you! :thumright:  And whining is always a good thing here!


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## DustyKat

Shove over Tess and make some room for me! :lol: 

Hmmm...it never ceases to amaze me at the coincidences I found for symptoms when Matt was unwell! I can laugh about it now but I was sure as hell was :yfrown:ing then! :shifty:

Good luck for tomorrow crohnsinct!  

Dusty. xxx


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## imaboveitall

he heh I have a neighbor who has one of those decorative flaglike things outside that says "wine, not whine" :thumright:

Cinct, that bites, just bites. Of course it all bites here in Suckville.

Tess, wtf and :voodoo: ...but in Stephen's case you can always do another round of exclusive and that may fix him up. I've read of long-term EN users doing that as soon as symptoms worsen and it gets them right back to baseline.

love you girls. :rosette2:


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## crohnsinct

Well, went to doc and  O is much worse off than I thought...Ugh if only her appearance matched level of disease.  :ymad:

Just as I thought,  doc says she is responding to Remi and he is not ready to abandon it but that it has to be supported.  I was expecting Aza as that is what he warned about and I did my thorough dr. mom research on.  Well, he throws me for a loop and says Methotrexate.  Flag on the play!  I wasn't ready for that...didn't do my research! 

Goes on to say 4 days after infusion she should be much better.  We need to weigh risks with QOL and then goes on to explain Methotrexate.  Once a week injections for 12 weeks, then move to oral, could cause nausea, give at night, folate supplement, lots of blood tests to monitor for ill effects of drug, scary risks.  

Then it seems he is getting nurse to teach me to give injections and I call time out and ask about EN.  He says he 100%, enthusiastically supports EN and uses it in the practice.  Feels it would be a viable choice for O.  If it were him he would go EN before moving to Methotrexate but she is teenager (well almost)  and compliance is the big issue but hey why not try if it doesn't work we have a very good plan B (Methotrexate):shifty-t:.  

Goes on to say Boost shakes...8 a day to support her activity.  Says that will probably be hard and that 3 or 4 during the day and the rest at night by NG tube will probably be best.  Absolutely nothing other than Boost and water for the full 6 weeks.  Said it isn't a permanent fix like Metho but rather something she will cycle through.  On 6 weeks, off until symptoms then back on.  He agrees that even though Meth can work if EN works, it is better because of the added benefit of KNOWING they are getting 100% of the necessary nutrition.  

We asked O and she decided to try a trial day with the shakes and decide then.  

I can not tell you all how indebted I am to you all for exposing me to EN, for explaining it, and encouraging me :worthy:  

Oh and lets not forget answering all my future questions and listening to all my whining past, present and future.  :rosette1:

I am manic beyond belief right now changing minute to minute, sad she is so bad, guilty for asking her to try this, hopeful, blessed to have you all and such a flexible doc, whacky for trying this and scared (but does that one ever leave us? 

Hey maybe she will stop looking like one of Violet's summer bunkmates soon 

Given how the morning went I am all fired up and ready for my little one's PPT at school.  They better not make me mad!  No telling what I might say.  
:kissgrits:


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## Tesscorm

Wow, you had quite a morning!  I'm sorry that she requires additional treatment!  _"Ugh if only her appearance matched level of disease"_ is what worries me about Stephen too!

I hope EN is something that she can follow.  Certainly NOT easy to go without food!  I give these kids a huge amount of credit for their strength and perseverence!  In my own experience, considering how picky an eater Stephen is, I very much doubt he would be able to drink a significant amount of the shakes.  Doing the NG at night eliminated that challenge, although then left him feeling some hunger during the day   Stephen was allowed clear fluids - broth, jello, freezies - this helped by giving him 'something' to eat during the day.  The option of clear fluids seems to vary according to the GI???

Just for my own knowledge (Stephen's GI has also suggested that Metho would be his next step), did the GI give you any reasons why the Metho instead of Aza?

I hope your afternoon goes smoothly! :thumleft:


Dusty - yep, those darn coincidences!  Stephen had lots of those before diagnosis :ymad:  But, since diagnosis, he's had a few of these 'coincidences' that then seem to get better  :yrolleyes:   Which is why I'm not quite panicking yet!  As he has the imaging tests scheduled for next week...  I'm only bordering on stress as yet...

Julie - I was thinking exactly that - to redo the EN for a bit.  But, how long are you thinking?  A few days or the whole six weeks again?  Was going to ask him to do a few days, which I know he would but not sure if he would be making the sacrifice for no reason.  And, if I'm going to ask him to do the six weeks again , then I'm going to wait until we have the imaging results.

:runaway: :runaway:


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## crohnsinct

Tesscorm: unfortuantely no he didn't happen to say why the change from aza to meth and I was a deer in the headlights and didn't ask.  When I see him next, I will ask out of curiosity and since we may find ourselves there anyway.   I put that cycling on and off EN in my post for you.  Sounds like if Stephan were our doc's patient  he would be suggesting another round of EN but who know really right? 

Bahaha just thought of something.  Even if EN doesn't work it will at least buy me some time to do my exhaustive, thorough, worried mommy research on Meth!


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## imaboveitall

Cinct, YAY to the doc for being into EN...super. :thumleft:

Now realize Boost isn't a very broken down formula. It is akin to Pediasure which when V was trialed on it made her WORSE as she could not break it down well.
So if dear O  does not respond FAST to Boost, ask your doc about a more broken down version, such as V is on; peptide based or full elemental based such as Peptamen. 
She needs good nutrition and there's no need for her to be skinny and frail and maybe have delayed puberty etc when this is available. When she starts gaining you'll feel such a sense of relief, believe me.
And if she cannot stand the taste, think about the tube. SO EASY and also the delivery of the formula in TINY increments overnight is easier for the gut to handle as well. I bet your doc will verify that.

She's around V's age so if you do go the tube route I know V would Skype with her and show her how she does it.

Tess, I'd do it until his symptoms resolved. Much better than the drug alternative and if he can bring himself back to baseline by going full feeds for periods of time for maybe YEARS and avoid drugs thereby...heck yeah to that.


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## Twiggy930

Hey Crohnsinct,

Don't you hate it when doctors throw you for a loop at an appointment!!!  I swear our last 2 appointments have been like that and then I leave without asking all my questions!!!  :duh:

So glad to hear that your doc was supportive of EN.  My son has been on exclusive EN for 6 weeks (gets to eat noodles on Thursday :ybiggrin and has mostly been ingesting Modulen through an NG tube overnight.  He got a bit tired of the tube the other day and decided that he would drink Boost (doesn't like the taste of Modulen) through the day instead.  He managed 8 Boosts per day for 2 days and then was ready for the tube again.  My son finds inserting the NG tube no problem and can do it in 13 seconds flat, he has even tried to teach his sister how to do it.   

Hope it all goes well.  Also hoping that your meeting at the school was not too infuriating.  Both my kids have dyslexia and I know how maddening it can be if they don't get the help they need/deserve at school.


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## Jenn

"Flag on the play! I wasn't ready for that"

LOL! No matter how hard we try.... 

I too, only realize in hindsight how in denial I live... keep us posted how it goes.


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## Catherine

Good luck with the drinks, my only advice is some people including my daughter find the drinks much easier drink which a straw.

Did your gi suggest any reduction in activities.  Sarah's swimming sessions are linked to weight at the moment.

48kg - one session per week.
49kg - two sessions per week.
50kg - three sessions per week
51kg - four sessions per week.  etc.


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## imaboveitall

Hey Jenn, what a handsome fella you have...I didn't realize until you changed the photo to a bigger one of him :thumleft:


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## Twiggy930

Drinks are definitely better with a straw!!!


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## Tesscorm

Second the 'handsome fella' pic!!!  What a cutie!  :emot-waycool:

And, Twiggy....   HOORAY FOR THE NOODLES! anda:anda:


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## Mom2oneboy

Our doc is also wanting to do Remicade along with the MTX.  Tough decisions we have to make for our kids!  My son has been doing EN for a little over a month now.  It did not put him into remission but it's been a life saver nutrition wise.  He wasn't able to eat much before he started and was losing weight quick.  The EN stopped the weight loss thank goodness.  He does it via NG tube.  He has started to eat some food and we will continue with the EN in hopes of getting his weight up.

I hope your daughter is feeling 100% soon!


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## crohnsinct

Catherine - surprisingly the doc did not restrict her activity.  Probably because the concern is the anemia, bleeding and inflammation more than weight.  She is 12 years old, 5 feet tall and 77 pounds.  While not ideal she has been pretty stable since 3/15 so he isn't concerned about weight and says the activity won't make the other issues worse...she just won't swim or run well. 

Your poor daughter...it is stressful enough to be dealing with this disease and then to have the added pressure to gain weight in order to go back to something she loves...I can't imagine.  

Thanks for the hint on the straws...will add them to the list.  I am off to the store now.  Fingers crossed.


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## Catherine

Sarah's is 16 and 1/2, 5ft 8, and  54 kg (118 pounds), she period has stopped.  My daughter has mild to moderate crohn's but at the time of dx severe anemia, weight 44 kg (96 pounds), severe pain, sleeping 18 hours a day and no iron stores.  We are waiting for next blood test confirm that she is no longer anemia.

How is your daughter feeling?


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## crohnsinct

ERGH!!!!!  Oddly enough feels fine today and poop has looked great the past two days...what is going on? Just like your hair behaving the day you decide to get it cut! 

I was at her track meet today debating whether or not to hold the EN trial and ask if maybe just maybe we could test her blood again and see if he would change his mind and decide the Remicade is working. Then I thought, but really what is the harm in prematurely adding EN if it wasn't needed?  NOTHING!  That is the beauty of it!  Then she ran her events and looked awful.  Like I have been saying all along...her appearance doesn't match level of disease and the only way I know is by watching her performance on the track or in the pool.  

Tomorrow she starts the shakes.  8 a day. She is oddly looking forward to it.  She came up with the schedule and it looks good to me.  

I am just a little nervous because she has her first long course meet this weekend.  Three days.  400 free on Friday night and three events on Sat and Sunday.  I so hope the shakes are enough for her and that she gets a boost (pun totally intended) from them and can come somewhat close to her times....so nervous for her.  It takes a lot to keep getting in that darn pool and not perform like you did 2 years ago!


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## Tesscorm

I hope all goes well for her with the shakes tomorrow!    :thumright:

Stephen had been sick for two months, had lost 20 lbs before diagnosis and, within a week or so of starting EN was back to playing hockey twice a week and, easily, within 3 weeks was back full schedule on two teams (ball and ice hockey).  I won't say he was back to 100% of his ability or endurance right away but it certainly came back quicker than I would have expected.  I hope the shakes do indeed give her the _boost _she needs for her meet this weekend! :goodluck:  And, regardless, I'm sure she soon be back full force! :applause:


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## Catherine

Please wish you daughter all the best for the weekend.  400 Free is a hard event even when the kids are feeling at there best.

We are heading into the winter short course.  Maybe think about going for post Crohn's PB, then the pre ones.

Most of Sarah's PB are over 12 months old.


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## crohnsinct

Post Crohn's PB's!  Duh!  Why didn't I think of that:duh:

The Crohn's came on suddenly in January but I have to assume since she didn't best any times last summer it was probably starting to affect her back then. 

I will see if her coach can change her seed times to last year's times.  Thanks for the suggestion! 

She had her first shake and likes it and seems pretty psyched for the day:dance:


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## Sascot

That's great she's managing the shakes - hope the enthusiasm carries on.  It is definately worth it - my son managed an extra 6 months without any meds and probably would have kept going had he not developed the fistula/abcess.
Hope it works well for her!


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## crohnsinct

*Whining alert*

Just heard from Liv.  10:30 and had 3rd shake.  Says it is going fine but she feels hungry:yfrown:  

I guess it could be just the thought of food and not being able to have it huh?  

I told her to drink her water and I packed an extra shake so told her to go ahead and have an extra if she wants.  Probably against some sort of rules but I am an Italian mamma and I'm hungry are the worst words I could hear.


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## imaboveitall

Cinct, I cannot imagine how an extra shake would hurt.
V was on 10-12 8oz cans at the start, plus food. Around 3000+ cals per 24hrs.
P.S I am Italian too


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## Tesscorm

Yep...  can't see how an extra would hurt???  Portuguese here but Italian husband!  Awful to hear your kids are hungry and you can't feed them!!!  By the way, Stephen was also on 3000 per night.


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## Twiggy930

My son also consumed extra formula in the beginning when he was hungry.  I was told there is no upper limit of formula consumption, but I'm guessing this would change if massive weight gain occurred.  I don't think too many calories are something they tend to worry about in this population.  I found that he self regulated the extra intake, meaning that as his weight went up he became less hungry and wanted fewer extra shakes.  His weight went up to his pre-Crohn's weight and has plateaued there.


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## crohnsinct

Which reminds me of a question I had for doc...each can is 240 calories...times 6 would make a total of 1440 calories.   But when on food they wanted her eating 2400 calories.  Why so few on the shakes?   Is it because the nutrition is more perfectly well rounded with the shakes so you don't need as much? 

I think doc didn't ask for more cans because she has already gained 11 pounds so now weight gain isn't the compelling reason for trying EN as opposed to getting inflammation etc under control.  But really 5 foot tall and 77 pounds,  I still can't bring her to mom mom's house without hanging my head in shame:ylol:


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## Tesscorm

I don't know how they determine how many calories from formula, from food, etc.  I know when Stephen went on maintenance, he continued to have 1500 cal/night (5 nights/wk) from formula plus a regular diet.  They gave us no guidance as to calories, etc. except dietitien did say that most people, after ingesting formula all night, usually skip breakfast and may end up having smaller lunches.  When Stephen gained 15-20 lbs over the first six weeks of maintenance, he was worried that this would continue but the dietitien just said that we'd look at it again in a few more weeks (unless it truly became a problem).  Well, he pretty much stabilized there (which is at 155-160lbs, 5'10") which is a healthy (and still slim) weight.   He doesn't have breakfast, however, I've found that often he ends up having a 'third' meal anyway at 11pm or later, just before beginning the formula.  I don't know how it works but he seems to have found his own balance between food and formula.  (Julie did mention once that Stephen's formula had a lower fat content than that which Violet used - Stephen's is called Tolerex.)


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## imaboveitall

Cinct, I hope this doesn't vibe "wrong", I swear I don't mean to seem Miss Know-It-All. Please know it's meant in a love and concern and PTSD from when V was starving, kind of way. :heart:

O sounds to me like she needs far more calories than she's getting. You aren't trying to maintain her weight, as V and Stephen are now doing, you are trying to advance her weight, growth and development from a place of deficit.
For that to happen a kid needs (this is direct from The Saint) 2500-3000cals/day and pref more.

V's gain on formula was exceptional; so much so that The Saint sent her case to be reviewed by one of the top IBD researchers in the world, an Ernest Seidman in Canada. She gained 40lbs in FOUR MONTHS and grew 2.5in in that same time frame. That was 20lbs of weight she'd lost plus 20 more.
She's now 138lbs and 63.5in.

She was on feeds 24/7 for 30 days and 16hr/day for three months. Gradually lowered to the 1500/night she's on now.

The Saint said she was one of the most dramatic responses he'd ever seen in his practice and attributes it to us doing as he said and making sure she got at least 3000cals/day for 30 days, something he said many will simply not do.

O is active and needs at least 3000cals I would think, if not more, to both gain and reduce inflammation. Also the more broken down formulas are more fully absorbed. She may not absorb all the cals from Boost.


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## Tesscorm

FWIW and just as an add-on to Julie's post and this may apply to Olivia...

During Stephen's initial 6 weeks (formula only), he gained 6 lbs IMMEDIATELY (one week??) then the gain tapered off quickly and by the end of the six weeks, he'd probably only gained another 4-6 lbs.  I asked the GI and dietitien about this but they were happy as long as he was gaining and not losing.  But, they both agreed that the 3000 cal/night did not take into account his activity level (in addition to playing on two hockey teams, he also did 2.5 hours of phys.ed. per day).  Both said they were comfortable as things were progressing but would revisit either the calorie intake or activity output if the gains changed to losses.  Once he added back regular food, he gained the additional 20 lbs in six weeks BUT this also coincided with school ending (and the 2.5 hrs/day of phys.ed.).

So, given Olivia's activities, the 2500-3000 cal that the Saint recommends may not be based on her calorie output.


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## Catherine

In full swimming training Sarah eats like a teenage boy and does not gain weight.

Maybe you need a dietian to work out calorie intake for your daughter average level.  6 shakes doesn't seem enough.


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## crohnsinct

Hi all - thanks so much for the input.  I KNOW that it is all meant with love and NEVER preachy know it all stuff.  That is why I keep coming here.  I respect and admire you all and value your input just as much as the docs.  I love you guys and the fact that you saved my daughter from any more medicine than was necessary. 

That said, I agree on the calorie intake.  I was chatting at practice tonight and everyone agreed that their perfectly normal healthy kids should be eating 3000 a day and that for Liv to catch up and get healthy 1,600 just doesn't seem right. 

I do remember him bringing up the NG tube and saying that some kids can't handle the shakes and that they hook up when they get home from school and unhook in the a.m. O said that wasn't an option as she doesn't get home until 9 most nights and then he said maybe a half and half option might be best for her.  At the time, I was thinking that he meant still 6-8 shakes so 3-4 during the day and the rest of her nutrition at night.  I am now thinking maybe he meant 6-8 shakes during the day and some NG feeds at night. She ended up only being able to get down almost 7 and I don't expect much more after church tonight.  

I sent them an e-mail to let them know how it went and will let you all know what they say.  She is petrified of the tube.  I have had her read everyone's posts about how great their kids have done with it.  Going to look for a video of insertion to show her.  And someone offered a skype session with their daughter (will have to look that up) and may take them up on that.    

Thank-you thank-you thank-you!  You guys are the best!


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## Tesscorm

Just FYI, at full dose, Stephen was ingesting 2000 ml/night at a rate of 200-250 ml/hour - this took 8-10 hours/night.  He usually started at 9-10pm and was done in time to get ready for school.  When it happened that he had a later hockey game, (bad mom:lol2 I let him skip first period class.


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## Twiggy930

When my son first started inserting the NG tube he used a tiny amount of xylocaine gel on the tip of the tube to numb his nostril.  He would dip the tip of the tube in the xylocaine and sort of snort it up is nose to numb the passage way a bit.  He did this for about 1 week and then we ran out of the xylocaine and he realized that he didn't need it anymore.  Given how easy it was for him to switch to doing it without the xylocaine I have wondered if its effect was more psychological than physical, but hey whatever works!

I highly recommend the tube and so does my son!  I can make a video if you need one.


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## my little penguin

Ds drank 1750 cal a day or 7 -8 cans of peptamen jr.
BUt he was only 7 at the time.


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## Twiggy930

With the "extra" shakes that my son drank at the beginning he was getting about 2700 cal a day.  He is now down to about 2200 cal a day.  He is 10.


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## imaboveitall

So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal. :yfrown:

Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.

Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??

If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds? 
I so hope this helps...:soledance: Much love.


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## crohnsinct

Thanks Julie - I had them sedate her for that?! LMAO...I may take you up on your skype offer.  

Tesscorm - did you get Stephan's imaging results yet?  Perhaps you posted elsewhere and I missed it.  Just wondering how things went.


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## Tesscorm

Hi Crohnsinct,

He goes May 10.  I'm kinda in that 'limbo land' that Dusty described on another thread, where one minute I'm thinking there is something wrong and, the next, I'm sure I'm just being paranoid! :yrolleyes:  He's having quite a few of the signs he had before diagnosis...

- on/off fever for a couple days, then gone
- waking up a couple of nights because he feels hot but no fever and no night sweats (but he did feel flushed to my touch and eyes were glassy)
- looser BMs coinciding with the fever
- falling asleep after school a few days last week but not since then
- his March test showed Sed rate up but CRP steady (actually a little lower) and HGB up
- pain near his TI but only when he does long distance runs in phys.ed.
- and then, last night, says he's having an epsom bath because his back hurts!  (but he's still having some issues since he separated his shoulder in November and physio says he's compensating and causing other tightness/pain) 

But, other than a couple of days earlier this week when he cranky, not feeling well and was, himself, a bit worried, he's been fine; appetite is normal, hasn't lost weight, as much energy as usual, not pale (and he always looks pale!)...  :yrolleyes:

So...  I don't know...  he's had times before when he's 'off' for a few days and then just gets better (perhaps not even crohns-related).  But, as he's going to be at the hospital anyway, I spoke with GI nurse and she agreed that we should run bloodwork at the same time...

I just wanna stay in that nice, sunny dream world! :lol:


----------



## crohnsinct

Tesscorm:  O.K. I won't wake you from your nice dream.  Keep us posted next week.

O swam 23 seconds slow and looked like she was swimming in mud!  She was fine with it...I was very sad. Like I have said before, if it weren't for her sports she looks great.  Some days I wish she would just quit them so I can stay in my dream world and not have the effects of the disease stare me down.  

Two days down on shakes only!  I can't wait for the inflammation to go down, her iron, weight and energy to go up.  I am really counting on this.  After tonight,  I almost wanted to go to the doctor and shake him down for a Prednisone fix!  

Oh yeah and heard from the nutritionist at docs office.  She said the nurse forwarded my email.  She is working on pre authorization for the shakes and will handle note to school.  So since I haven't heard from nurse about coming in for tube training etc I am assuming that he is good with the 6-8 shakes a day...gosh I hope that is enough.  Can't believe I have to wait until June 6th for the next blood test.


----------



## Tesscorm

Crohnsinct,

The sports really take a lot out of them...  you really do need to be at peak performance and it certainly shows when you're not.   But, she will get back to her peak!!  We truly went through that last year with Stephen's hockey, just before his diagnosis in May.  If you disregard this year's separated shoulder and injured knee :lol:, without question, he played his best hockey ever this year!

If she responds well to the shakes, perhaps you can keep her on them at a 'maintenance' dosage for as long as she'll drink them???  (With food, of course!! )  Just as a supplement to counteract the energy she burns with swimming.

If she loses any weight, I would get back to the nutritionist or nurse and reconfirm the quantity...  make sure that they are aware of her activities and what impact it has on her calorie intake.

I hope the rest of the weekend goes well for her! :thumleft:


----------



## izzi'smom

imaboveitall said:


> So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal. :yfrown:
> 
> Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
> She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
> The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.
> 
> Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
> It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??
> 
> If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds?
> I so hope this helps...:soledance: Much love.


Interested to see a pic of the tube you are using...we almost reintroduced it while inpatient last time. Ours was an 8FR (If I remember correctly) but it was really tough on her-she cried for a week about her sore throat, plus her nose bled quite a bit following insertion. I am guessing indwelling is different than one you remove nightly (ours was weighted and the tip was fairly large.)


----------



## imaboveitall

Hey Angie!
It is an 8FR. NOT weighted. Same size one we've used all four years even though she is over twice the weight and 8.5in taller in height! 
It's very small compared to her giant nostril 
But Izzi had to have been half the size of V when she tried it so maybe too big for her baby sized nose


----------



## crohnsinct

Tess - Thanks.  I am holding on to your Stephan's story...One week back to hockey two days and three weeks 100% hockey and ball...I don't want to wish time away but I can't wait for the three week mark.   

I will also keep an eye on her weight and call if it starts dropping too much.


----------



## Tesscorm

Angie, Julie - Stephen's is only a 6Fr (assuming 6 is smaller than 8 in this measurement).

Crohnsinct - I so hope it works for Olivia.  I was honestly amazed at how quickly Stephen rebounded!  And this was while he still had 2+ hours of phys.ed. every day!  I did have a meeting with all the teachers so their demands of him may have been lower but still...!  My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game!  :lol:


----------



## crohnsinct

Tesscorm said:


> My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game!  :lol:


Ah good then I am not alone and a freak of nature!


----------



## Tesscorm

:rof:  Not likely!  :lol:


----------



## DustyKat

Now Tess, I know Stephen is your baby but a 6Fr really is used for babies! :ylol: 

Dusty.


----------



## Tesscorm

LMAO!!  :rof:   that's what they gave us at the hospital!?!?  What did I know? Lol. If it were now...  I'd be on here in a second...  Asking what everyone thot, cud the smaller size cause flow errors?, wud it be more difficult to clean inside, cud bacteria build? wud a larger size allow for speedier dlvy reducing the impact on Stephens lifestyle?...  OMG, it wudve taken me 3 days to decide on a 6fr or 8fr!  Lol


----------



## DustyKat

See! Ignorance really is bliss! :lol:

When Sarah was first diagnosed I was so bloody happy that she didn't die that I was the number one resident in your sunny dream world Tess! Would I go back to those days? Nah but it's bloody tempting at times! :ybiggrin: 

Dusty in sunny dream world...


----------



## crohnsinct

So O continues with 6-7 shakes a day with no complaints.  

Yesterday I was sick with fever and dad and other two girls were going to softball games.  The dear heart desperately didn't want to miss church and got herself a ride to and fro.  I  think church is her safe, happy nurturing place. 

So we got to meet on Friday and her suit didn't fit!!!!!  Not talking around but in length.  She has grown so much she needed a new suit. :facepalm: Borrowed one the next size up but around it was ginormous.. Oh well at least we can celebrate height...gain is next. 

After her horrible Friday night, she swam (technical talk here for Catherine) her 100 free 4 seconds fast, 100 back .5 slow and got dq'd and 200 IM 8 seconds slow.  Coach told her she was getting tired and sloppy but also said don't worry lets get nutritional thing down first.  

Sunday, 100 fly .5 faster, 100 breast 1.5 faster and last event .5 slow.  Coach said she is looking much better. 

Less blood this a.m. and formed stools.  Doc says we can hold on NG tube and that he is VERY proud of Olivia.    

I will continue to monitor weight and call if it starts dropping too much but right now she is maintaining.   

It is a good day in sunny dream world!


----------



## Sascot

Wow that's great she is managing the shakes and is improving!  Hope it continues :ybiggrin:


----------



## DustyKat

So fab to hear all is going well! Long may it continue hun...

Dusty. xxx


----------



## Catherine

Glad hear O swum well.  The short distance times will come back first.

Is she pleased with her results?


----------



## crohnsinct

Catherine - Thanks.  Good point on the shorter swims coming back first...I hadn't thought of that.  She is a distance swimmer so that is kind of a bummer but she is ecstatic with the results.  Prior to this weekend and not counting the awesome Prednisone/Blood transfusion swim weekend she hadn't had a weekend with more than one (and many with no) best times in almost two years!


----------



## izzi'smom

So glad to hear she is doing so well!!!

I think the weighted end of the catheter was what bothered her the most, although if/when we do it again I will ask for a 6, unweighted. They deliver the bowel prep via one pre-op...lets see if I can stick my nose in this business


----------



## crohnsinct

When will I learn?!!!!!  I have been all over here touting the virtues of EN...less B.M.'s, no blood for three days..blah di blah blah blah.  

Even went as far as emailing IBD nurse to let her know how great things were going. 

I should have spit, thrown salt over my shoulder, knocked wood...SHUT MY MOUTH!  

Sunday O had an attack of D but one attack isn't anything right?  So back into my sunny dream world.  

Today has gone to the bathroom 4 times.  Was just at the computer working and couldn't control herself...didn't make it to the bathroom.  Blood in the toilet...not a lot but still disappointing.  She said she feels like crap. Headache and feels feverish (but no fever)...actually has had me take her temp a lot lately but never anything...YAY!  Maybe a virus of sorts?!  Sunny dream world here I come!  

Ergh!  I am going to be a basket case until her next blood is taken.

Could D be from the total liquid diet?


----------



## my little penguin

We had nothing but liquid coming out when he was on no foods.
GI explained liquid going in= liquid out in some kiddos.
So we didn't stress.
Also if they are drinking it orally their breathe will smell since the all liquid changes the pH of the stomach etc...


----------



## crohnsinct

YAY!  Logical explanation...thanks! But yikes d for 5 weeks is not going to be fun...especially since she didn't make it to the bathroom 15 feet away.  Did your son go to school during exclusive period?  

I wonder if the diarrhea caused some bleeding further down?  

OK maybe the IBD nurse is off the hook tomorrow.

Breathe smells? How? Bad? Sweet?  Haven't noticed that yet.


----------



## my little penguin

foul like an acidity fruit smell- I thought he had diabetes or something:shifty:
until someone told me.
We did it for 9 weeks. He went to school and just "drank" his lunch from a metal water bottle at school- no one knew what was in it. So no big deal.
He also had a laminated pass from the nurse for unlimited bathroom access so that was not an issue.


----------



## crohnsinct

Just read in EN thread your son was 7 and started right before Thanksgiving!  What a dear heart going through that during all the holidays!  

O brings shakes to school and drinks every two hours.  That doesn't bother her but she is in middle school and the bathrooms are pretty far from the classrooms.  She has an unlimited bathroom access pass as part of her 504 plan but still not sure she will always make it.  Funny because when she was super sick going 12-14 times a day not one accident...hmmm.  Maybe it was just unexpected tonight and now that she knows she will be able to take action.


----------



## Tesscorm

Hi Crohnsinct,

I responded to your concerns in the other EN thread...  but, just a thought...  how many BMs is Olivia having?  I think I remember Stephen having around 6 a day when on exclusive (and diarrhea -ish almost always), if she or you are worried about the distance (at school) to reach the bathroom, maybe she can put herself on a regular schedule (ie. every 90 minutes, etc. while at school) - IDK but might help minimize any urgency building???


----------



## crohnsinct

Up until yesterday it has been 1 or 2 firm and normal bms.  Yesterday was 4.  

Good suggestion about the regular schedule.  I don't know though.  She is already stressed about missing 5-10 minutes of class every 2 hours so she can drink the shakes (state law-no liquids or food in class other than water and even that needs a doctors note) I don't know how she will feel about another few here and there for bathroom trips.  At least it will give her a plan. 

I also replied on other thread but so this one is updated I will put it here also: 

Nurse wrote back to me and said stay the course and to keep them posted.  

So YAY!  No health worries yet...just where is the darn bathroom/porta potty worries:ylol2:


----------



## imaboveitall

MLP, foul breath sounds like bacterial overgrowth or ketosis to me.
V's breath was foul when she was starving, prior to being put on formula.
Never while on it. Nor have I read anything to support that liquid feeds alter gastric ph.
I really sound like a know it all and I don't mean to. :eek2:

Re:liquid stools, V never had any, even when on 12 cans formula /day and very little food.
Her scope prep every year is five days formula only, no food, and last 24hrs Pedialyte only. Never a laxative nor clean out per se.
Last year I skipped the 24hr Pedialyte...The Saint emerged from procedure room to say, "It was like Skippy peanut butter in there, you didn't do the clear liquid, did you?" (mortification).
He said as long as formula has amino acids in it feces will be formed.
Diarrhea is indicative of colonic disease and this may be the case with O.
Diarrhea is far less common with small bowel involvement.


----------



## Tesscorm

It's so frustrating (and hard to understand the disease) when everyone seems to respond differently to similar treatments, products, etc.

Stephen had very loose stools throughout the exclusive period.  As soon as he added back regular food, regular stools came back.  His crohns was primarily in his TI and small intestine but there were some patches of inflammation in his colon and duodenum; yet, diarrhea was a regular symptom before he was diagnosed!

I don't remember all of Stephen's inflammation levels but think I do remember his initial CRP levels:

When admitted- 90
After a week on IV Flagyl and two days of EN - 6
2-3 weeks after exclusive EN ended (but maintenance continued) - 12.  

I guess these levels would indicate some active disease, however, the loose stools ended immediately when food was added.

:ybatty::ybatty:


----------



## Sascot

Hope things improve with the toilet issues!  Never had that problem with my son.  It was a bit more liquid (ah the lovely conversations) and went 2/3 times a day.  I don't remember him having smelly breath.


----------



## crohnsinct

OK so more good days than bad (but bad are real yucky) and some great indicators she is getting better with sports performance, puberty indicators etc.  

Thinking about e-mailing doc to say things going great and she comes to me tonight with this hard marble sized lump in her neck.

Any ideas? She has been asking me to take her temp everyday...says feels feverish but no fever...probably nothing but our ped has walk in hours from 8-9...do I bring her in or stay in sunny dream world for awhile?


----------



## Clash

I would take her to the doc in the morning. I know when C's was tender the GI nurse told me to take him in and make sure there was no infection. Of course, I have no idea how they determine there is no infection when his WBC is elevated due to steroids??? I worry about a small infection being a really big deal because of the Remi so I would probably just check to make sure! Hope she gets to feeling better! Glad performance and puberty indicators looking up!! Yay!


----------



## Catherine

I take her to the doctors.  Good luck.


----------



## Tesscorm

I would get it checked too. :ghug:


----------



## izzi'smom

I would take her too...and keep us posted! :ghug:


----------



## Suzysu

Good luck at the Dr's - I hope she startes to feel better soon xx


----------



## Sascot

I would take to the doctors, otherwise you would probably be sitting worrying.  Hope she feels better!  
 As for feeling feverish, Andrew is really prone to feeling very hot without his skin being warm to touch.  Even before diagnosis I remember thinking it was kind of odd and it did happen quite often, but just went away on it's own.


----------



## crohnsinct

Bahaha Parenting by committee I love it!  Thanks for weighing in.  You guys are the best.  

Funny but BC (before Crohns) I would have sat on this for days but now every little thing makes you say hmmm.  

So turns out it was a lymph node that drains the scalp.  She has this awful rash behind that ear in her scalp.  She had it BC and there is little we can do about it.  The Prednisone cleared it up nicely but it came back with a vengance and is now seeping goo and blood etc.  So the rash apparently is draining into the node overloading the node it swelled up.  No problem at all.  

                                             BUT 

**warning long** 

While in the ped's office she is slouched in the chair with her head laying on the back and looking like anemic day before infusion Olivia.  I tell the ped how great everything has been going.  Ped says she looks tired but oh that is probably the disgusting muggy, rainy weather we are having.  I buy it.  

Drop her off at school and half hour later guidance counselor calls me to say she is complaining of headache and very weepy.  She is NEVER weepy and certainly never bothered by a headache.  I go over, she is slouched in chair, give her tylenol and ask her if she wants to come home.  Tears, "I can't miss school" no, no, no.  We bargain that she can stay and guidance counselor will watch her every two hours when she goes down to drink her shakes and call.  Guidance counselor also says she was in Monday complaining of headache and weepy.  

Nurse just called me to say she was in her office a bit ago.  Some kid passing in the hall hit her in the head with their elbow.  She was crying told the nurse she was just surprised.  Laid down for ten minutes and asked to go back to class.  Nurse doesn't really know her but says to me she is so small and looked so tired, circled under her eyes etc.  

Last night she was barking at me and weepy...almost irrational...again never this way except weekend before diagnosis.

So what can I make of this?  Maybe this is her delayed puberty finally coming on and contributing to the weepiness or her I am ready for my infusion girl (next date is 6/6)...UGH!


----------



## Tesscorm

Am glad lymph node is nothing important! :banana:

Not sure about her behaviour...  I guess I would just watch her for a bit.  Could certainly be puberty???


----------



## crohnsinct

Aaah!  Got a call from youngest daughter's nurse.  She threw up at school...had to pick her up.  Maybe just a bug among us and Liv is feeling the affects of that.  Although, young one has had 3 or 4 of these one vomit and I am perfectly fine episodes over the past few months...hmmm


----------



## Sascot

I saw that hmmmm!  I know that feeling - keep watching my daughter for any signs now that Andrew is diagnosed .  At least it's not long until the next infusion, maybe it's normal for her to be feeling peaky as she starts needing the next infusion?  Hard to tell with hormones, etc.  Who knew kids were so complicated - never imagined this when I decided I wanted a baby 13 years ago!!


----------



## Tesscorm

Yeah, they certainly don't tell you about _these _sleepless nights! :ghug:


----------



## crohnsinct

Well as luck would have it Ped called this evening (same one who saw her this a.m.).  She just wanted to follow up.  Said Liv looked pale in the office.  I told her the story.  She said now she is kicking herself for having the kid in front of her and not doing a thorough exam and doing a finger prick.  Don't you love a doc who is human!  

She said she thinks she has been so strong through it all that maybe 4 months of being sick has taken its toll and she just needs to talk to someone.  I called our youth pastor and since he has accepted another call down south, he is getting one of her favorite youth leaders to talk with her.

Then after swim practice her coach comes to me and says he is concerned she looks sluggish in water...maybe not enough calories...maybe anemic? 

Haha her swim coach wants to know if we can give her Prednisone again...she looked awesome then...I laughed and said I know...I am like a druggie looking for a fix!  

Then we get home and stomach pain and blood.  ERGH!  Ped agrees I can sit and wait until 5/31 and that she is on EN and Remicade and won't plummet but yikes what a long week this will be.  

Sascot - yes normal to feel this way before next infusion but her cycle is short...6 weeks so she is already feeling bad after only 4 and we have 2 weeks to go double ERGH!  

Thanks so much for listening um reading.  Don't know what I would do without you all  :rosette2:


----------



## crohnsinct

Haha!  When I told someone 18 years ago I wanted to have a baby they said you better want to have a teenager cuz they are teenagers a helluva lot longer than they are babies!


----------



## Tesscorm

That is so true!  :rof:  Before we had kids, I used to joke with my husband that maybe we could just adopt a couple of 30 year old lawyers! :ytongue:

But, I hope Olivia's and your week turns better! :ghug:


----------



## Catherine

Sorry hear O not doing so well.

Hopefully the GI visit goes well.   Maybe a call to the GI office to ask whether any blood tests can be done in preparation for the visit.


----------



## Suzysu

It sounds like you have a good Dr (a seemingly rare find!). I hope this week passes quickly and she doesn't get any worse. Thining of you all xx


----------



## DustyKat

Sorry I missed this hun...:hug:

Just reading through your posts I was going to say that it sounds like a combination of the pre treatment fall off, the end of school year hit the wall and perhaps she is feeling at the end of her tether.

When does your school year finish? Does she have exams coming up? 

My Sarah, even in remission, struggles at exam times, I hate it! :voodoo: 

Some of you wrote about the emotional aspect reminded me of Matt. I saw the frustration and snappiness start to creep in with him prior to his surgery. At that point he had had a drain in for about three months and his treatment was keeping him on an even keel but that was about it. He too had stayed strong, as I think all our fab kiddo's do, but at some point they do become fed up. Bloody hard to stand on the sideline and watch it all. I agree with having her talk to someone. Matt didn't see anyone but then we had surgery just around the corner as a lifeline. Sarah did see a psychologist though, she was in remission at the time but her diagnosis came hard and fast, on the operating table, so she never did have time to adjust to what was going on. She said it didn't do anything but I'm not so sure...I saw an improvement and guess what she enrolled in at university...yep psychology! :lol: 

Good luck hun, I hope more than anything that O is soon feeling on top of the world again!

Dusty. xxx


----------



## crohnsinct

Ha!  When life gives you lemons make lemonade!  Good for Sarah!  

O is only 12 so no big time exams and stress for her. School ends 6/21.   Maybe lingering stress from her friend's suicide...maybe stress from youth leader leaving?  

O's coach's comments really got me thinking.  Maybe all her anemic looking actions is really not from Crohns  but just from not getting enough nutrition!  So I emailed the goings on to the doc and asked if I should push a few more shakes and was secretly hoping (although O would be mad) he would say ng tube with gobs of formula.  But I got a worse answer...cut out the extra sports for a week.  OMG!  She will absolutely die!  She seriously will become clinically depressed if she can't swim!  I can take track away but not swimming.  And she has a meet next weekend.  But doctors orders so I guess I have to:ymad:. 

Oh and remember we had to drop out of the mission  trip to Ecuador because she couldn't get the yellow fever vaccine...well they promised her a spot on next year's trip...they announced today it is Tanzania.  We get the itinerary next week but already checked the CDC site and non urban areas require the yellow fever vaccine.  Well gee aren't those the areas where we usually do mission work?!  Ugh...she will be so disappointed.  Have an appointment next week to go over itinerary with infectious disease/travel doc.  

Oh and she lost another pound (2 total).  Glad I didn't tell him that. :whistleinnocently: 

Oh well wish me luck telling O no sports.  It was great knowing you!  utahere:


----------



## DustyKat

Oh lordy...I don't envy you that job! I will be sending you all the luck I can muster! 

:goodluck::goodluck::goodluck: 

Can you up the shakes anyway? 

Well I am very :redface: ashamed to say that the suicide and youth leader slipped my mind...I wouldn't be a bit surprised if that is also playing on her mind. When you are already not feeling brill it's when just those sort of things come to the fore. 

And now the trip! Good heavens, it doesn't rain but it pours, poor love. Dare I say it but do you have any sweeteners in the background to maybe help her through this tough time? That was my way of coping with it! :eek2: :lol: 

Dusty. xxx


----------



## Sascot

Poor thing, it is frustrating enough going through everything without them not being able to do what they love.  Poor Andrew has not been able to play football since Easter and he is really missing it.  It was nice tonight though - they had football awards and he got a trophy for Player's player of the season. What a happy boy!  I hope it's just the one week she has to miss out!


----------



## DustyKat

Oh wow! Good on Andrew, so happy for him! anda:anda:anda: 

Matt missed most of the football season last year and it was a real bummer.  Now I am going to cry when I write this......but after his op he was so determined to get back to it that he started training ASAP, about 5 weeks post op. He had lost so much condition in the previous 6 months that when got on the pitch if he fell once he fell a dozen times. I howled!!! 

Dusty.


----------



## Catherine

Can she still do comp with no training.  At least then she will have social part with her swimming friends.


----------



## crohnsinct

Sascot:  OMG!  your post made me cry!  Good for him!  

Dusty:  Tears again.  It is so hard watching.  I am dealing with some health crap also and so not interested.  Doc wants to know why am not worried or asking more questions...so easy when it is us but so hard when it is them 

Catherine:  I guess that might be an option.  Doc appointment is Thursday and meet starts Friday.  She went tonight before I got the message.  Monday is Memorial Day here and no swimming, never swim on Sunday so I guess really just three days and hopefully doc will O.K. return on Thursday...am I moving into delusional land here?


----------



## DustyKat

Nah just sunny dreamland with a dose of Mt Sanity. 

Dusty.


----------



## Clash

Oh that is so reminiscent of C's adventures before diagnosis. And for awhile I blamed the latest xbox game, he played constantly so I decided he wasn't resting well.LOL Didn't help that the GP just kept saying virus,(Seriously? same virus 5 times over 3 months, does my kid have an immune system?!?)
So sorry she is feeling icky, I really hope you all can hit on something that will keep her on the up and up! I know it is hard, sending good thoughts your way!! 
Steroids and puberty...now that has been an interesting adventure at our house! Yikes. 3 weeks left on taper!


----------



## my little penguin

:ghug: Sorry she is still having such a bad time.

Even when DS was at his worst GI still told us to try and keep things as normal as possible and to keep him swimming.
Ds would only swim one length rest then one more length. His coach knew why so she was ok with it.

:goodluck: with the appt and possible the next swim meet.


----------



## crohnsinct

So Olivia got home from practice tonight and I explained the doc's request to her and she said and I quote, "well I gave up food for 6 weeks so I guess I can give up swimming and track for one".  Where do these kids get their strength?  Never taking the poor me attitude.  I am so proud of all of them!  

Next time tell me to shut up, take a deep breath and stop under estimating my child.  

That said, if Thursday he tells us to stay out I will fight for her return!


----------



## my little penguin

rder: you are really looking out for her


----------



## crohnsinct

Dusty:  Yes,  plan to up the shakes anyway but she is already drinking 7-9...one every two hours so not sure how much more I can get in her.  As for sweeteners I have promised her a mani/pedi for each week on EN...bought her a new outfit from her favorite way over priced boutique in our village, and just today bought her a pair of TOMS that she has been wanting forever (even before I found out about the sports).  I told a good friend of mine that I feel a little guilty for spoiling her.  I loved her response, "there is a difference between spoiling a child and knowing when your child is facing a rough time and choosing to brighten their day"


----------



## Mom2oneboy

That brings tears to my eyes.  What a girl you have!!  



crohnsinct said:


> So Olivia got home from practice tonight and I explained the doc's request to her and she said and I quote, "well I gave up food for 6 weeks so I guess I can give up swimming and track for one".  Where do these kids get their strength?  Never taking the poor me attitude.  I am so proud of all of them!
> 
> Next time tell me to shut up, take a deep breath and stop under estimating my child.
> 
> That said, if Thursday he tells us to stay out I will fight for her return!


----------



## DustyKat

Oh man, what a champion!!! I bet you are fit to burst with pride and rightly so! :medal1:

Dusty. xxx


----------



## Farmwife

:cheers:Way to go Mom. Your raising a great kid!:award2:

Farmwife


----------



## izzi'smom

Crohnsinc, You're doing a fantastic job...and what a sweetie Olivia is!! Hoping this does the trick for her. LOL @ parenting by committee! and Tess, 30 year olds? bahaha! Do you still have a baby shower with briefcases and law textbooks? SUnny dreamland with a dose of Mt. Sanity...SO stealing that, Dusty!


----------



## Tesscorm

Sorry I'm a bit late here...  haven't had much time the last couple of days!  

But read on another post that Olivia's weekend is going well!!  Woohoo! :banana:   And, truly, what a champion - I think having to sit out their favourite activities must be the hardest thing they face!  I hope her doctor approves her getting back to track and swimming on Thursday!  And, I LOVE your friends comment about spoiling - she is so right! :ghug:


----------



## Tesscorm

Angie - re the baby shower...  Heck, YES!  But, it's a catered affair, the mom doesn't look like a balloon and can wear high heels and, since the 'babies' earn more than I do, they pay for it!  LOL


----------



## crohnsinct

^^^LMAO:rof:


----------



## Sascot

Love this forum, a good laugh amongst the stress/tears!  Olivia sounds like she's coping just great! I am also trying to find little "treats" for Andrew when I feel he is having a rough time.  He got a fantastic report from school last week so we are going to buy him the new football strip which comes out on Friday.  It's nice to bring a smile to their face!  Hope the doc approves going back to swimming.


----------



## crohnsinct

Just back from O's appointment and wouldn't you know it big, messy, loose, bloody stool in the waiting room bathroom:ymad:

Anyway, she had a great weekend.  Filled her time with social activities and even found time to help me with a ministry I am running to feed the hungry.  It was an awesome weekend.  She has looked great all week so we were assuming her energy dip and overall feeling bad is not enough nutrition. 

Doc started out defending his no sports decision.  Said he always supports staying involved but when you are feeling bad you have to know when to take a break and if she won't do it he will do it for her. 

Said problems were "probably" due to not enough going in.  She burns a gazillion calories and he would really like to see 5 more pounds on her. Gee the committee decided that long ago.  He said he just got back from a conference where they debated EN and food he said he is willing to try 10% from food 90% from formula.  O was over the moon as she was afraid of adding the tube.  So she is allowed one small meal a day of pasta and boiled chicken and a little red sauce or chicken broth. Keep up 8 shakes a day.  

We bargained to dropping track..we didn't tell him it is over next week anyway:whistleinnocently:  Swim ends in end of July and then she has a month long break. 

He moved her Remi infusion up to Monday.  Just two days sooner so not sure why he did it other than he is anxious for blood results or didn't love what he saw in front of him? 

He OK'd mission trip last week of June cuz at least that will keep her out of the pool.  Just can't do certain assignments because wants her away from possible TB exposure with the Remi. 

All in all a good day.  Can't wait to see what the blood shows.


----------



## Tesscorm

Glad it went well!!  I'm sure she's ecstatic to be able to eat 'something', 'anything'! 

Hopefully, with that extra bit of food and the end of track, that will help her gain a few pounds!

Hope you start to see more improvement soon!!!  :ghug:


----------



## Sascot

Sounds like things are going quite well.  Hopefully the Remi infusion will help extra too.  Hope it keeps going ok and blood tests come back good


----------



## DustyKat

Thanks for the update hun.  

So fab to hear the weekend went well! :thumleft: 

The appointment sounds like it went well too. I hope the tweaking of her diet and the Summer break helps things along...:goodluck: 

Dusty. xxx


----------



## Clash

Sounds like things went well for O! So happy for you guys and hope the next Remi helps it right along and she can enjoy all those summer activities!


----------



## crohnsinct

Wow had to go to the second page and halfway down to find O's thread.  Almost hate to resurrect it...

Got an email from the nurse today and she said O's basic blood results have all improved!  Yes she used an exclamation point!  The exclamation point and the fact that they made me wait 4 days for the results makes me think that the EN did it's thing!:dance: Even with colonic involvement and the prior use of Prednisone!    

I asked her how we are proceeding..when next follow up, transitioning off EN, Remi cycle etc.  She said she will advise tomorrow after speaking with doc and they still need the Remi levels but that won't come back till next week.  Even if we transition off EN, I am still planning to have her drink a couple shakes a day to help with weight gain.  

Oh and finally got weepy rash checked out by a derm.  Infected eczema. She has only been walking around like this for a month or so :ybatty: Gave us an antibiotic, and wants her to use Zyrtec at night for rash around eyes. 

We are so excited and walking on air tonight. Still have to get that energy up, weight on and swimming to pre crohns level but happy, happy girls here in CT.  Thank you all you EN Queens and little princesses and princes:worthy:  You inspired us to try and keep at it and we both thank-you! :hug:

Going to post on EN thread and maybe even success stories now.


----------



## Farmwife

:dance::dance::dance::grr1d::grr1d::dance::dance:
Well isn't that just the best news!
 I'm so happy for you both. 
What a blessing the day has brought!


Farmwife


----------



## Tesscorm

anda: Super news! anda:  Such a great feeling when you get good results! :dog:


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## kimmidwife

ALways nice to hear great news! Yay!!!


----------



## Mom2oneboy

:congratualtions:  Awesome news!!  May the good times keep on rolling!


----------



## Catherine

Great news.


----------



## jmckinley

Great news! Keep up the good work!


----------



## Sascot

Yay!! :emot-waycool:  That is great news, she has done so well.  Was just thinking about you last night wondering how things were going - glad to see your good update!!!


----------



## DustyKat

What a fab update! May it keep on keeping on hun! Wishing you all the luck in the world! ​
:mademyday:
Dusty. xxx


----------



## Twiggy930

Fantastic news!!!


----------



## crohnsinct

Whining alert!!!!

:voodoo::voodoo:Stupid Crohns:voodoo::voodoo:Stupid Remicade:voodoo::voodoo:

Just got back from the infectious disease doc...the one who nixed Olivia's Ecuador trip...the one Olivia calls the devil doc:devil: Well she also nixed the trip to Tanzania
She says she would NEED the yellow fever vaccine and on Remi they can't get live vaccines...also said risk of TB too high...stay out of developing nations...poor kid.

Then got home only to see the e-mail from docs office re: going foward.  Seems she is metabolizing the Remi too quickly and on the highest dose...this explains why at 3 weeks she starts feeling badly...so we are now down to every 5 weeks hoping that the EN did enough.  Oh yeah and then the nail in the coffin...no further transition to food...Just make the pasta/chicken snack into a meal.  So more boiled chicken and pasta. And he wants to see her next week...feels like we were just there....  

And just when she was really feeling on cloud 9.  Seriously thinking all day how great she looks and how great bathroom results are (the best since she came off prednisone).  

I told her to try to hold on to those thoughts because really this is not all that bad...but mom doesn't know jack!


----------



## Clash

:voodoo::voodoo: Crohns sucks!! :voodoo::voodoo: So sorry to hear this!! It is so hard for the sweeties to try and lead normal kid lives when Crohns tends to snatch things away!! I am so sad for your O!!
I'm on my mobile, and it freaks out with the forum but didn't she just get to start on the food transition recently? So now she will be able to keep the chicken and pasta but not add any other foods? Sending hugs and good thoughts yours and O's way!:heart:


----------



## Farmwife

Poor O, give her a big country hug for me!:kiss:
Ok, I feel so bad for her...
Tell her I will send my rolling pin so she can beat something till she feels better. :ywow:It just can't be a human, animal, personal property of someone else or.....she can beat the rug. Get all the dust out. It will do mom a favor too. Aren't I sweet.

Farmwife


----------



## crohnsinct

Aw thanks!  

Don't you just love stabbie...he really makes me feel better. 

Right...she was having a cup of pasta and 3 ounces of chicken.  Now she can have 5 ounces of boiled chicken and a cup of rice, pasta or potatoes...woohoo..paaarty!


----------



## crohnsinct

Farmwife...lmao yeah include some honey cookies and pastry shells in the package and you got a deal!  How's the ride?


----------



## Clash

Stabbies rule!!! I like Farmwife's rolling pin idea!


----------



## Farmwife

Oh that's just great!:thumleft:
I'll send some honey cookies and O will eat them and get even more sick
 and probably beat you with the rolling pin. rder:
Great idea MOM!:thumright:
Farmwife

Some one needs to talk to some one else about making a smiley whacking a rolling pin.:shifty:


----------



## Tesscorm

Aww, I'm sorry that O got all that bad news! :ymad:  How disappointing for her.

I'm sorry about the trip...  I guess nothing will change the vaccine problem (simply due to Crohns and even without medications, we were told Stephen can't have any live vaccines).

But, I hope having the remicade more frequently will get her going with her diet!  How long has she been on EN now? 

:ghug:


----------



## my little penguin

:ghug: so sorry to hear about O


----------



## jmckinley

So sorry about the mega-whammy of news! Tell O we are thinking about her and you too! Crohn's DEFINITELY sucks! Things are crappy here too (no pun intended)!  You tell her to keep her chin up...Dr's won't admit how much attitude and stress have to do with this, but it means alot. She needs to keep the faith! 

Might be a good time to find a mission close to home. Ryan's favorite is walking dogs at the animal shelter. Our shelter has been overflowing since last year's tornado. We also cook dinner for the fire station and eat with them sometimes!


----------



## crohnsinct

Farmwife: honey cookies=beating mom lmao...rollling pin smiley...well if there is one Dusty will find it! 

Tesscorm: she has been on 6 weeks now.  I kept telling her not to count on coming off but after the doc added cup of pasta and 3 ounces of chicken a week or so ago and basic bloods came back so positive she was confident there was going to be more.  Hard with all the end of year school parties and bas and bar mirzvahs...she also has her cousins wedding coming up. 

jmk: sorry to hear things are crappy.  O does do mission work in the city near us.  Also she is going to York PA the last week of June for a Week of Hope mission trip. It was just that she had to apply, be interviewed etc for these trips and got accepted...it was a huge deal.  She became good friends with the other kids over the months preparing and now they go and she stays home..just hard.   Funny thing is our youth director resigned and that opened a chaperone spot on the York PA trip.  They asked me to fill in.  I asked her if she minded she said no...now with the extended EN and the special meals she may need I guess it was in God's plan all along that I be on that trip!  Plus she will be in her last week before Remi so I get the added bonus of watching her like a hawk...do ya think she will let me follow her into bathroom for poop inspections:shifty:

Any of our Crohnie friends near York PA? Holla!


----------



## crohnsinct

jmk: oh yeah and about attitude...our doc totally agrees that O's sheer determination and will has definitely made a difference so I am glad about that.  By 6:30 she was cheered up and perusing the net trying to find another trip the family can take at the same time as the mission trip...ITALY!  Yeah probably cost as much as Farmwifes new ride...before insurance!


----------



## Farmwife

My SUV couldn't pay for Italy...:emot-nyd:
Maybe Long Island but not Italy!:queen:

Farmwife


----------



## crohnsinct

How funny...Did you know I am originally from Lon Gisland?


----------



## Catherine

How is far is Connecticut to York?

My daughter has a swimming trip to Canberra, and I am having a hard enough time let her go on she own.

It only 2 hours by plane.


----------



## kimmidwife

I am so sorry the doc nixed her trips! If you can afford Italy it is fantastic. I got to go with my Father years ago in 11th grade. He went on a business trip and took me with him. We went to Rome I will never forget it and hope to get back there someday. Have you thought about LDN for her? Caitlyn also metabolized the remicade super fast and it never lasted more then 3-4 weeks. I hope you guys have a good time in York PA meanwhile.


----------



## jmckinley

That's heart breaking about the trips! It is very hard to watch them excluded from things because of crohn's. I a so sorry. I hope that another trip presents itself. You are right...God's plan!

We are anticipating some problems with activities too. R plays saxophone and wants to march in the high school band. Not sure he can handle 2 weeks of 5 hour days of band camp, bus trips, monkey suit in the heat........ He can still play in concert and jazz/blues band, but he is so looking forward to jammin' in the stands at the football games!


----------



## crohnsinct

Catherine: York is about a 4 hour car ride.  I was fine with letting her go since we could get to her pretty quickly but now that the youth director resigned so I get to go! Sleeping bag on hard floor with 50 girls in church hall with no a/c eating crap food.  Showers every other day..5 hours of sleep lots of manual labor..don't be jealous!  Watch out Farmwife will be on here any minute telling me sounds like a vacation to farm people!

Kim:  I mentioned LDN once to our doc and it didn't get a warm reception.  If he decides we need to change course I am bringing it up again!  And no I don't think we can afford Italy...not with mu oldest going off to the most expensive college she could find and no scholarships:ymad: But really I am happy for her.  It was her dream school and a reach and she got in...I am happy, I am happy, I am happy

JMK:  Oh marching band is so fun!  I hope things settle down for him so he can do it.  But really like I just told O this morning...you are so blessed to do the things you are doing revel in that!


----------



## Farmwife

No that's not a vacation!!!!!!!!:ymad:
Do you know where farmers go on vacation???????????:shifty:
Anywhere but their farms!!!!!!:ytongue:
HA! You think you know me but you don't.
I'm glad you get to go. It will make memories for years to come. 
Take a journal and write everyday. 
:ylol:I want to read about it and laugh me head off!!!


:soledance:Farmwife


----------



## crohnsinct

No electronics on the trip either...I will hyperventilate not knowing how all my little crohnies are doing and wanna laugh...they assigned me to the kitchen!  I get to do all meals and snacks..poor poor kids.  I would love to try to make things healthier but the budget is like a dollar a meal per kid...they get super crap food but I am sure ALL low residue so if O is eating by then at least she will begood...so much for my only adding in the best foods...


----------



## Farmwife

Farmwife
That's all I'm saying. I swear no jokes about you cooking at the camp. I swear. 
I promise not to even comment on the possible emotional scarring to  you or the campers because of the food, I promise.
 You have my word that I will not utter the possible ways food born illness can effect poeple, You have my word.


----------



## Sascot

Gee - a dollar a day, sure can make a banquet with that!  Can't say I'm jealous of your trip with all those kids!!  I help out at a mother & toddler group at the church (a fact that amuses my friends since I don't particulary like little kids - but I hide in the kitchen and make snack and tidy up at the end. The one time I ventured out of the kitchen I tried to stop a toddler from running into the minister's office and fell flat onto my face - broke my nose :ywow:
That's a shame she can't go on her trip, think I would rather Andrew avoided any place that needed lots of vaccines whether he was on meds or not. My daughter started a 6 weeks episode of screaming with pain in her bottom 12 hours after having one of her pre-school vaccines.  Never again!
Sorry O is having to decrease the time between Remi infusions and is not able to eat anything more exciting!!  Thinking of you both.
Pity you can't make it to Italy - we end up there as part of our cruise this July - we could have met up!!


----------



## crohnsinct

Haha yeah give me the teens anyday.  Broken nose yikes!  

CRUISE!  Why didnt I think of that?  Back when Ecuador was nixed the infectious disease doc said no cruise because of germs and her suppressed immune system.  But she was a lot sicker then.  I think I will check out cruises because they are usually more economical!  THANKS!


----------



## Sascot

Worth asking about it!  I have been going on about the cruise to all the nurses/GI/paediatrician  and no one has ever even suggested that Andrew couldn't go even with the Aza.


----------



## DustyKat

crohnsinct wielding the rolling pin of destruction! At the ready to beat the crap out Crohn's!...

	
	
		
		
	


	




...and not forgetting her trusty side kick!

	
	
		
		
	


	





Dusty. xxx


----------



## Farmwife

I love them!!!


Farmwife


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## crohnsinct

LMAO!  :rof:

OMGOSH!  I LOVE them!  I knew you were the ruler of all smileys.


----------



## my little penguin

:rof::rof::rof::rof::rof::rof:

Too funny- I really needed those smiley's


----------



## crohnsinct

Just got back from Doc and seems my paranois over having to drag in so soon after last bisit and after infusion was a big fat nothing.  He had nothing up his sleeve.  

O gained 2 pounds since adding back that bit of food and stopping track! We can add another meal next week. 

Doc also said that this is the best he has seen her since dx and said we can extend out our monthly visits to 6 weeks!  

Still doing our happy dance here in CT:banana: would send a pic but probably not half as attractive as Tesscorm's dance.  

Hey Dusty..how come my rolling pin smiley is the one acting all crazy, ranting and raving like a lunatic and Farmwife is all sweet and pink with a bow in her hair?  Typecasting?! Ah hell, I don't care we ARE beating the crap out of crohns today and it feels great!


----------



## Tesscorm

Just catching up on this thread!!  :rof:  You all certainly put a smile on my face! 

So glad O is doing better!  Woohoo!!!!!!  Another meal!    Glad the weight is coming on!

Happy dance...  well, I have until October to meet the new GI...  time enough to make sure my 'belly' dance doesn't resemble a 'jelly' dance! :ylol:

We're thinking of a cruise too!   Just after Christmas...


----------



## Mom2oneboy

Great news about O!!  Isn't it great to see them put on some weight?  I've become obsessed with S's weight.  I weigh him nightly! I hope it keeps on keeping on for your girl


----------



## my little penguin

:yoshijumpjoy::yoshijumpjoy::mario2::mario2::mario2:

On the weight gain and the bump out on appt's
ALways a good thing


----------



## Sascot

Great news!!  Happy dancing for you and O :dance:


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## Suzysu

Yay!! that is fantastic! well done you and well done O!! xxxx


----------



## Clash

Yay that is so awesome! Happy dance!!! Happy dance!!!


----------



## DustyKat

What an absolutely fab update! Soooooo happy for you and O that I am fair grinning like a Cheshire cat! :biggrin::biggrin::biggrin:

Dusty. :heart:

PS...Farmwife got the sweet, pink one with a bow in her hair 'cause she is a nice country girl!...utahere:​


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## crohnsinct

Hi all!  We are back from our mission trip.  The week was amazing but exhausting. 

I didn't poison one child with my culinary delights so there:hallo3: 

yOh yeah and some guy riding a stolen motor bike ran into my car doing thousands of dollars of damage and drove off hitting yet another car:ymad:

I posted elsewhere that O got a "crohns" stomach ache Friday before we left and Saturday looser stools and bit of blood started.  I brought the Prednisone with us to ward off evil and it seemed to work.  O felt fine and reported that bm's were fine.  BUT even though we added even more food, she had a week off from swimming and had a physically easy assignment (she was in a/c office collating and putting together kits for a non profit organization that helps inner city kids) she still lost 3 pounds last week.  WTH? If it isn't Crohns related I want the secret! 

I have to admit I was too busy to watch her like a hawk so I am not 100% certain she kept up her shakes but with all the food we added and no swim practice I wouldn't expect that kind of loss.  I am now wondering if her version of "fine" really is fine and anxiously waiting a visit to the bathroom.  

No big deal given what eveyone else is dealing with these days just frustrating.  Next infusion is 7/9 guess results from blood tests will tell. 

Oh yeah and my 18 year old got her license while I was gone...now she really doesn't need me for anything but tuition bills!


----------



## Clash

Glad the trip went great! Sorry about crazy stolen motorcycle guy...ooh that might be a great comic book villian..Out of nowhere to damage and defile cars everywhere comes crazy stolen motorcycle guy!
Hmmm....we could make O and all the other ibd kids the team of super heroes...waiting to swoop in and save the day!
I hope I's weight loss is some kind of off schedule/mission trip fluke and evens out now that you guys are back home! I know what you mean about their idea of fine! Hopefully this works itself out!
Yay on the older one's licence!! I do miss the talks from driving my oldest everywhere and C gets his in....oh my goodness 3 more months!!!


----------



## Sascot

Glad to have you back!!  Sounds like you had a good week.  Sorry to hear O has lost more weight - maybe she has just done some growing!!  Or if she didn't swim for a week maybe she lost a bit of muscle tone, I'm sure that would be worth a couple of pounds.  See plenty of normal reasons to help you along!


----------



## crohnsinct

Ah yes Sascot...must return to sunny dreamworld!  Thanks for the directions!  

Didn't think of muscle tone...hmmm. But really I am quite sure she just eased up on the shakes too much.  Last chance swim meet to qualify for state championships is this weekend.  I will spend the week fattening her up. She went to bathroom and all looked good...just a lot of mucus and a very little bit of blood.

Oh and here is more fuel for all you city haters..there was a shooting a block away from where we were staying and we had to pass that spot on our way to the showers at the local high school! But really we were in the poorest part of the city.


----------



## crohnsinct

And hey Dusty...I missed your butt while I was away!!!!!


----------



## DustyKat

> I didn't poison one child with my culinary delights so there


Ha! That you know of! :lol: 

So fab to hear that all went well hun......sorry to hear about the continued weight loss though, that's a bummer. :thumbdown: Yeah I always wondered about the whole 'fine' thing too and I know full well with Sarah that pain became such a constant in her life that it became normal, man it breaks my heart to think about it. How is O now? 

Ah hell we shoot all the time, only difference is we don't shoot people! :biggrin:

Oh wow! Congrats to daughter on getting her licence! Deep breaths Mama! :ytongue:

Awww ya missed my arse... :kissgrits::kissgrits::kissgrits::kissgrits:...now don't say I don't do anything for ya! You best put ya sunnies on though cause ya might be blinded by the light! 

Dusty. :headbang:


----------



## Tesscorm

Glad you had a good week (with the exception of the motorcycle!:ymad.  Great to have you back! 

Hoping O's weight loss was just a combination of different schedule, fewer shakes and just a bit of muscle loss.  Hope it all settles this week!  I'm sure mom's 'culinary delights' will fatten her up quickly!  :lol:

Congrats on the new driver!!  eek: one more worry for a bit! :lol


----------



## crohnsinct

LMAO Dusty!  

O is feeling fine and the bathroom doesn't look bad so I think we are fine.  Poor kid though.  She begged me for a bikini.  We shopped for weeks and NOTHING fit her...not even kids size 8.  We finally found one.  She has a friend over and they are swimming.  I am looking at her and if I weren't her mom or knew her story I would be thinking anorexic for sure.  Her ribs are still sticking out! 

I think she was a bit freaked at the weight loss also as yesterday she was half hour late for her shake and she came running into the kitchen.  Poor kids...they shouldn't have to worry about these things.  

Bahaha surprised none of you blamed her weight loss on my horrible cooking....or did you?:shifty:


----------



## Tesscorm

crohnsinct said:


> Bahaha surprised none of you blamed her weight loss on my horrible cooking....or did you?:shifty:


Awww Crohnsinct, what more can be said!  utahere:  Thank God for those shakes! :worthy:

:Karl:


(May not be on much this week - crazy week at work, Stephen's GI apptmt tmrw and Emily's rheumi on Thursday! )


----------



## crohnsinct

Oh no...Stephens last pediatric GI appointment  Will be nice to check in and here what he has to say at least.  Finally getting in to that Rheumy!


----------



## Tesscorm

Yes, will update on Stephen's apptmt but am not expecting much... (gosh, think I'd go nuts if I couldn't recount what was said and get everyone's feedback!  :lol Hopefully, I'll get some clarity on why his inflammation seemed to be 'okay' to them???  Perhaps they are happy to keep him on EN only as long as the inflammation stays under control???  And perhaps this is why he's had ultrasounds and MREs every six months???  (Funny, because when the clinic desk told me the doctor had ordered the second ultrasound and MRE, I did wonder why but, we were rushing to leave and I thought it must be 'routine'.)  We shall see... 

And, yes, FINALLY, Emily's rheumi apptmt!  OMG, this has been on hold since Feb/March!!!  Not worried as rheumi was very confident that results wouldn't show any problem (OMG, would totally throw me if we're told that 'oops, results DO show something!) but would like to move on with knowing her iron levels, still low?, why?, etc.   We've had to cancel twice because of Emily's job and she wanted to cancel AGAIN!  Told her I was washing my hands of it if she cancelled again!  :lol:


----------



## Suzysu

we did secretly blame your cooking - we just didn't want to be mean to you as soon as you came back


----------



## Suzysu

Tess - good luck with all the appointments this week - hope all goes well xx


----------



## crohnsinct

Can I get pissy for a minute?:yrolleyes:

I know it is no where near what poor Mary and Rowan are dealing with but I did our weekly check in Monday a.m. via e-mail to both the nutritionist and nurse and asked what the next food is we could add and didn't hear back yesterday.  So this a.m. I am thinking nutritionist is on vacation even though I didn't get an out of office message but still I called this a.m. on nutrition line and left a message asking if she was on vacation for person covering to call us.  5:10 p.m.  the day before a holiday and still nothing.  What gives?  I would like to see them go without food for six weeks and then slowly get one or two things a week added and see how they feel.  The poor kid is so sick of boiled chicken, pasta, sweet potatoes and melon she is going to puke.  We have a huge party to go to tomorrow with tons of awesome food (yes that's right I didn't cook any of it) and all I can give her is the same old. At this rate if she has to do this again in the future I am not so sure she will want to.


----------



## Clash

Awww...that is awful and go right ahead and get pissy. I think it is so awesome that O has commited to the EN and remained compliant. I can't imagine how hard it must become to stick to only a few foods and mainly liquids!! That just makes me so upset for her. Doctors are so quick to rule out EN due to compliancy in the US and here she is giving it her all and they won't return a phone call.:ymad: I would have a few choice words for them when they did get back to me! Tell her we all think she is awesome for the determination and commitment she has had with this treatment!!:ghug:


----------



## Tesscorm

I don't ever want anyone to go against their GI's instructions but...  as you're not getting any response from the GI, here's Stephen's reintro diet and, perhaps, without going too far beyond the instructions you've received, you can add just one or two things for O.  I've posted Stephen's reintro diet in more detail on other threads (couldn't find it anywhere!) but, here it is in a condensed version (sorry, it's midnight already here!! :blush

Each step was to take 3-4 days (everything was low fibre, low fat at the beginning)...

1. 'white' foods - white bread, pasta, rice, plain crackers, plain muffins, rice krispies or plain cereal (no milk).  He was allowed a little bit of sauce or flavouring like butter, low fat cream cheese, etc. but just a BIT.

2.  proteins/meat - any type but I stuck mainly to chicken, fish, eggs

3.  soft fruits/veggies - no skins, seeds or membranes (skin around orange segments)

4.  low fat dairy

...  all else as tolerated.

Hope that helps a bit... :ghug:


----------



## Sascot

There is nothing worse that sitting waiting around for people to phone back :voodoo:.  I still believe with alot of these docs, etc, it is out of sight out of mind!  They forget there's a child at home desperately waiting for the answers - so you may rant as much as you want!
I can't remember much about the reintro of the diet but sounds like Tess has it covered.  I remember tomato soup being one purely because I thought it would have been too acid for the stomach!  Other than that definately white bread and rice, cooked veggies, bananas, potatoes.  I always think sliced banana on toast is a nice treat.  Keep nagging them!


----------



## Suzysu

:voodoo::voodoo::voodoo::voodoo:
I think these healthcare professionals do this day in day out and they forget that actually the things they do and say (or don't do and say) have an enormous effect on peoples lives - I really hope you hear soon - how frustrating.:ghug:


----------



## Twiggy930

Our re-introduction was just as Tess has laid out.  When it was time to introduce fruits and veggies we did canned pears (canned in pear juice), canned peaches (canned in less healthy syrup) and cooked apples (think chunky apple sauce with a touch of sugar).  My son doesn't like bananas so we didn't do them.  

I was always dismayed at the lack of guidance when it came to re-introducing foods.


----------



## S mom

It really sucks when people don't return your phone calls/emails!  I agree, when it's time to start eating again, you shouldn't have to wait around to find out what's ok!
When we reintroduced food we were instructed pretty much the same as Tess has laid out.  At the time, however, both the dietician and the GI mentioned that they really don't know the best way to reintroduce food yet... that there are lots of different theories from just starting back eating a full menu to doing elimination diets so they were just suggesting something in between.  Lots of soft food, low residue.  I don't think there is a lot of research out there saying one way is the best.  But, my son said that first piece of white bread was the best ever!

Oh ya, a speaking of appointments - we just got a letter with a date for my son's first adult GI appointment - it's in August already, a month before his next scheduled appointment with the pediatric GI... I was amazed and a little surprised that it was happening so fast.  He doesn't turn 18 until March.  Here's hoping we like her and it goes ok!!


----------



## Tesscorm

S mom - Good luck with your apptmt!!!


----------



## Farmwife

I read about your trip. Before the joke comes let me say  that I'm glad you had a good time. Doing the Lord's work is the most important thing you can do.

Sorry to here about the damage to your car and the gun shoots. 
Beleive it or not the same thing can happen on the farm. 
Like a tactor backing up and crashing into your car then the tractor back fires. I guess that's the difference between the city and country. 

Farmwife


----------



## Tesscorm

:rof:  LMAO!!!!!!!


----------



## crohnsinct

Do you hear that loud drumming noise?  It is the sound of my fingers tapping on my desk waiting for a call back:mad2:


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## DustyKat

Oh man, that sucks.  

Waiting right along with you hun!...

	
	
		
		
	


	






Dusty. xxx


----------



## Tesscorm

Hope you hear something today! :ymad:


----------



## Sascot

Was wondering what that noise was!  Hope they phone soon.


----------



## crohnsinct

Oh Yeah they called on my cell phone at 3:30 while I was lost in the countryside trying to find the pool for the swim meet and stressed to no end that we were going to miss the check in.  We didn't!  We should have.  She had a very rough meet.  It was disgustingly hot though so here is hoping that is the answer.  She has now gone three times today with a lot of mucus, a good deal of blood and d is starting...could be the heat? Could be infusion is due?  Who knows. 

Anyway, good news is the nutritionist added 4 more foods and O is very excited about that but then she says she is VERY concerned about the loss and wants to see her up a good deal by next Wednesday (infusion).  

We are staying over in a hotel at the meet.  Just O and I...a treat after the mission trip.  But she was chowing down like a hound... I told her to slow down she said, "I HAVE to gain 5 pounds"  Poor pumpkin.


----------



## Clash

Yay on the four new foods!!!! Booo on mucus, blood and D!!! I am so glad the nutritionist finally called did she mention what took so long? It's good that she has an appetite!! We are just going to think really good thoughts about the poo issues and they will hopefully find their way out the door!! Good luck with the swim meet, O!!!


----------



## DustyKat

What at absolute trooper she is hun! :hug: She must make your heart sing.  

So good to hear they finally got back to you and she has new foods! Now for the other to settle down and stay away...:voodoo: 

Sending loads of love, luck and well wishes your way! 

Dusty. :heart:


----------



## crohnsinct

More slow swims today.  6 seconds slow on the event she was only 1 second away from qualifying on.  She said she is very tired but not Crohns tired...whatever that means...guess she should know.  

One of the new foods they said we could add was lettuce  She LOVES salad.  She had her first one after the meet for lunch.  Two hours later D and at the risk of getting too graphic (is that possible here) there was undigested food (couldn't distinguish what but O said it takes two days for food to move through so probably what she ate Thursday - how cute is she).  What does undigested food in poop mean for Crohns?  Does that mean just normal diarhea like maybe the salad just didn't agree with her or is the D getting worse? Maybe I am getting too paranoid...definitely bored..Nothing to do here in the country.  Back at hotel now resting for a few hours before dinner so thought I would bother you  guys with my mundane questions...you can thank me later!


----------



## Sascot

Well, thank you!  Not sure what undigested food means for Crohns' itself - in a "normal" tummy, I would just assume that the food wasn't chewed enough. 
Hope the food isn't causing any issues.  These kids are cute - who would think they were old enought to know about different types of tiredness :lol:


----------



## jmckinley

Uh! So sorry O is having problems. It could be that the undigested food just means she wasn't ready for lettuce. Sometimes when Ryan eats something he can't tolerate, it will push everything else out whether it's digested or not just to get rid of the bad thing he ate. I hope that she puts on a few pounds before wednesday. Ryan started losing when we added some food, so we have backtracked to more EN. He is really only absorbing the calories from the boost. Maybe her tiredness is from not absorbing nutrients from the food as well, like Ryan is doing? Those boost have a lot of vitamins in them.


Tell O to slow down and chew that food! Keep the faith and go get those docs if you need to! Need me to come with you?


----------



## happy

Not to butt in, but....lettuce? Really. Raw greens are one of the last foods that I am adding  on my elimination diet after EN. If you think about how you would begin to feed a baby when starting food, it is kind of the same idea after being on EN for awhile. If you really want to add greens, try them cooked first...and small amounts at a time. Any fruit and veg added for the first few times should be cooked, so it is easier to digest them. 

Hope she feels better soon.


----------



## crohnsinct

Happy: I know right?!  That is why I was shocked.  She did ask us to limit it to iceberg as it is mostly water but still...I am limiting it until Wednesday.  

JMK: Thanks..pushing everything else out..interesting...hmmm


----------



## Tesscorm

I hope the mucus and D symptoms go away quickly - hopefully, just a result of the heat, swim meet, new foods, etc.

How many calories is she still getting from shakes?  Since Stephen's been on maintenance EN, he has taken in 1500 cal/night x 5 nights/week TOGETHER WITH a very typically-sized diet for a teen boy (i.e. usually skips breakfast as he's full when he wakes but makes up for it with a late night snack).  The first three months (6 weeks exclusive EN and next 6 weeks) took him right back to his pre-sickness healthy weight (plus some) and he has stayed there.  I've often meant to ask why the extra 1500 cal aren't causing him to gain extra weight, but then I've always forgotten to ask. :redface:

Also, you know exercise definitely plays a part...  Stephen's gained approx 5-7 pounds in the last 3 months - pretty much since his hockey seasons have ended.  I don't know 'swimming' but it seems that you've mention lots of 'meets', is this 'competition season'?  Did extra trainings or higher intensity trainings coincide with pred tapering, etc. (...  kind of responding to your other 'pred' thread too...)


----------



## crohnsinct

Thanks Tess.  I really do think the d is a result of food reintroduction.  Can't much explain the mucus and blood but it has been minimal compared to in the past so I am not too concerned.  

As for calories from formula...at exclusive she got max 1,500 from formula and that was all she had!!!  Now with food and reduced formula she gets about 1,200 from formula and the rest food but "the committee" has always suspected she wasn't getting enough calories. 

I still think she is not getting enough calories.  Swimming is a very calorie burning workout and they are just now beginning their taper to get ready for championships so she is definitely not getting enough. With all the added food she is choking down the shakes the best she can.  I don't want to make her so sick of them in case we have to do exclusive again in the future but....guess this is where the ng tube would come in handy but our doc hasn't mentioned it since the first discussion of EN back in April.  

I can't judge based on pre dx weight as she was woefully underweight pre dx also and is now 10 pounds up but still they want another at least another 5 pounds on her.  Swimming ends in two weeks (later if she makes states but not likely  She has the whole month of August off so here's hoping we bulk her up so she has some cushion for loss once the fall season starts up.


----------



## AZMOM

Not to throw cold water on improvements but undifrsted food means its flying through due to inflammation. When Claire was at her vey worst she could poop out food within an hour of eating. I remember vividly milk going in and coming out white. 

Hopefully she just wasn't quite ready for the roughage. I agree chew chew chew chew when she tries it again. 

Hugs -

J


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## Tesscorm

Crohnsinct,

I could be wrong but I think some of the formulas have 'concentrated' versions which _may _have a higher calorie count...  ie, I know there is a Peptamen and Peptamen 1.5 - perhaps you can try replacing one or two of her shakes with the concentrated versions???  She won't have to drink more but might help a bit with the weight gain.


----------



## jmckinley

Tess,

You are right. There are different formulations. Ryan drinks Boost Kid Essentials. The 1.0 has 240 calories and the 1.5 has 360 calories. He drinks a combination of the two each day because the 1.5 is very thick. He got sick when he was drinking only 1.5s.


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## DustyKat

It certainly can get thicker the higher the calorie count. Is Two Cal used much over there?







http://abbottnutrition.com/Products/twocal-hn

Dusty. xxx


----------



## crohnsinct

Wow made it to second page and here I am dredging it up again.  

O continued to bleed all the way up to infusion and had looser and weirder bm's.  BUT GOOD NEWS...her labs are back and everything looks good, even her Remicade levels are a.o.k. (5 week schedule) and after infusion results in the bathroom are back on track...I guess she will just be a bit of a bleeder from time to time.  

We are going to relax and enjoy the summer and next time things get bad again hop back on to EN because it definitely seems to have done the trick. 

Oh and she is on full food now with a shake or two a day to help keep her weight on. 

Oh and she has her final swim meet this weekend and it is the first one all season that is at the beginning end of the Remicade cycle so here's hoping....


----------



## Tesscorm

Woohoo to the regular diet!!! :banana:  And, good luck at the meet! Hoping its her best time ever! anda:


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## Clash

:thumright: Loving the blood work results!!! Tell O good luck at the swim meet and enjoy this sweet summer time!!:banana::banana:


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## izzi'smom

Yay for full food, swim meets, and ENJOYING your summer!!!


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## Catherine

Wishing O all the best for the weekend of swimming.


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## DustyKat

I hope O has a fab Summer hun and is able to enjoy a full diet one! 

	
	
		
		
	


	





Good luck with the swimming! 

	
	
		
		
	


	





Dusty. :sun:


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## Farmwife

That's GREAT for your girl. I hope you all have a wonderful summer.


Farmwife


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## Farmwife

I'm not going to lie.....................................:shifty:
I'm nervus.................................................:shifty:
Real nervus................................................:shifty:
Where did our crihnsinct go.........................
I keep checking the news to see if some horrible lady in Florida freak out on her family:voodoo: and now she's on the run!
That must be it........ you got caught.................your in prision.................but their's hope.:dance:
You just have to buddy up to the guard and he'll let you e-mail us.

I don't know what else could it be??????????????:wink:


I hope you having a wonderful time on your vacation!


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## Tesscorm

I was wondering too... 

Where are you Crohnsinct?


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## crohnsinct

Aw Farmwife You like me...you really like me!  

Just got caught up enjoying my family, the sun and apparantly the food!  Gained almost 8 pounds:ywow:  

I am back now and will get caught up on threads tomorrow so consider yourself forewarned:hallo3:


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## Catherine

Welcome back


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## Sascot

Woo hoo, glad to have you back!  Sounds like you had a great time :ybiggrin:


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## crohnsinct

O had her appointment today and thought I would hop on and update her diary...oops I mean thread:shifty-t:

She had a great summer with only one blip. She hasn't run all summer and stopped swimming for the month of August.  Blood counts are all O.K. and she gained 1.5 pounds since mid June.  

Doc was pleased and cut her Prevacid in half.  We are continuing on Remicade every 5 weeks at max dosage and if a flare occurs jumping back on EN. 

He did a bit of hmm'ing around growth and development.  She turns 13 in September and still little signs of puberty.  There was a sharp increase in her weight curve since dx but less movement in height and still lower on the general curve given her parents and sisters' heights but he doesn't think it is due to Crohns and says he is anxious to see what puberty will bring.  

Big pat on the back and see you in 3 months!  That is now the longest we have gone.  I am curious to see how things go once she is back to her full track and swim training but we are still happy dancing here :dance::dance::dance:


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## Farmwife

:thumleft:I'm glad to hear the good news!:thumleft:


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## Clash

haha I was just pm'ing you about the appt!! I am happy dancing right along with you:dance::dance::dance: She has been through so much I am so glad O seems to be on even keel now! Hopefully when track and swim starts she will be rested up and ready to go and we will all be warding off any ickies:voodoo::voodoo::voodoo:!!!

Yay O!


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## Tesscorm

:banana:  Great news!!!!  :banana:

I'm sure puberty will kick in soon with a VENGEANCE!  Look out mama!! :lol:  You'll soon have your hands full! :facepalm:

When do her track and swimming begin again?  Is she going to stay on her shakes as 'maintenance'?


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## Sascot

That's great news :sheep:.  Never used a jumping sheep before - but it looked happy so there you go!  Glad things are going well.


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## crohnsinct

Swim starts next Tuesday but she has oral surgery to remove two baby molars that never fell out and the adult ones are growing in out the side of her gums...come to think of it I wonder if the baby teeth not coming out has anything to do with Crohns...but then again don't we wonder that about every little thing? 

Anyway, if oral surgeon says it is O.K. she will be back to swimming next Wednesday..she can't wait.  Nervous as she is moving into the seniors category and practice group.  New group, new coach, new distances, events etc and she looks sooo small compared to the others.  As you know she adored her old coach but I am sure these new coaches will be great for her as well.  

Cross country starts mid September. 

Yes maintenance shakes!!!!


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## Clash

So are there any precautions, procedures etc. when it was decided she would need to have those baby teeth removed? I'm just asking because I remember something about dental work, CD, remicade but not the specifics and C needs some work done wonder if it something I need to mention to GI or will he just look at me like I'm insane because I dreamed the connection between dental work and CD/Remicade?

Yes, crohnsinct....I know I am insane but I haven't completely let that cat out of the bag with the GI....yet!


----------



## crohnsinct

LMAO!  Remember I PM'd you when this all came up at dentist back in July...You aren't insance just suffering from dementia. 

Yes!  The oral surgeon said we had to check with GI because of risk of infection because of immune suppressing properties of Remicade.  He said that some oral infections can (very rarely) go to the heart and that I needed to clear scheduling with GI.  GI said as long as it is two weeks after infusion the drug would be at a low enough level her wouldn't be concerned and that the risk of "that" terrible infection is very, very low...where have I heard that before??????


----------



## Clash

Ok Ok I knew I had heard that but July was so long ago and bits of my brain have been falling out for years!!!
Thanks, ohhh this next GI visit is just going to be chock full of fun...he may ask just the Hubby to come next time:shifty-t:


----------



## jmckinley

Great news! Go O! So glad things are going well! Once she starts swimming and running, her appetite should pick up and she will take off! I am impressed and so happy that she stays so active! Funny about the teeth. Ryan has teeth issues too. He is missing some adult teeth. They just didn't develop. Now we have to go through this whole implant thing to fill the gaps.

Clash, I know Ryan has to have some ear surgery. His GI and ENT decided that Ryan needed to be 3-4 weeks past remicade infusion and at least a month off prednisone before surgery. Every doc's gonna be different, I am learning!


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## crohnsinct

Thanks.  Yes every doc, every surgery, every patient, every drug and so on is different.  For some more serious surgeries I have heard stop Remicade all together :eek2:


----------



## kimmidwife

Firstly, glad to hear the good news about her doing so well! There is a connection between issues with teeth and crohns. There is a thread about it somewhere. About the puberty issue crohns can cause delayed puberty and delayed growth. Look at when other girls in the family hit puberty to know when she should have normally hit it and assume she will be at least six months to one year behind. Caitlyn lost about three inches of height that she probably would have had if not sick according to her doctor. Her crohns hit right around the beginning of puberty at age eleven. Remember also that puberty is a process that occurs In phases over about a three year time period.


----------



## Twiggy930

So glad to hear O is doing well!


----------



## crohnsinct

kimmidwife:  Well her younger sister (just turning 9) has precoscious puberty and is already wearing a bigger bra, has more hair, weighs more and is almost as tall and I am told will get her first period any day now so O is about 4 years behind her.  Older sister got it at 11 so only 2 years behind her...poor pumpkin...all her friends moan about it and she can't wait...can't wait to get a "real" bra either...I am still waiting....

I am sure all her athletics doesn't help.


----------



## Suzysu

So glad the appointment went well!! xxxx


----------



## kimmidwife

Crohns instinct,
When did you get your period? Since your other daughter had precocious puberty base it on when you started.


----------



## crohnsinct

Yeah that is what I was thinking but senility has set in and I can't remember if I was 12 or 13...either way not too far off from where she is now so I am not panicking.  Also my mother was very small and got hers late.


----------



## DustyKat

Thanks for the update crohnsinct! And what a fab one it is! 

	
	
		
		
	


	





Now roll on puberty! :eek2: 

Dusty. xxx


----------



## upsetmom

crohnsinct  my daughter turns 15 next week and still no sign of puberty .
I'm not too worried at the moment.


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## kimmidwife

I would say to expect her to be at least one year behind you due to the crohns so figure about fourteen.
To upsetmom, if she does not get her cycle by sixteen it should be checked out with an OB/GYN doctor. Sixteen is considered the latest age and still with in the normal range, even though we know there are other variables at play here if she doesn't get it by then I would have it investigated.


----------



## DustyKat

Sarah didn't go through puberty until she was 15, it was the post surgery remission that kicked it off. Prior to that she didn't even look like anything was going to happen. She was two years behind me. 

Dusty. xxx


----------



## crohnsinct

ERGH!  O mad at me today. First day of school.  I filled out the intramural participation form and there was a question: 

"Any illness or injury that might prevent your child from participating" 

I debated listing Crohns.  Afterall, it hasn't interfered really yet.  Worse case she misses a practice or meet because she doesn't feel well but heck that can happen to anyone on the team who gets the darn flu.  But then the honest me took over and I listed Crohns.  She was soooo mad.  She sees things my way but I said God forbid something happen to you out there they should know or what if they find out and I didn't list it they can bounce you for dishonesty.   She is afraid they won't take her on the team now as they are cutting kids because there are too many.  New coach...she doesn't have track record with him AND she hasn't run so won't get her old times.  I know they can't discriminate but come on....

So I added...dx 1/31/11, wasn't a problem in spring (haha unless you count slow times) closely watched by doc. 

Dang!  I hope I didn't screw things up for her but really what a stupid question to ask.  You want to know if kids can handle a sport ask for a physical by a doc...stupid, stupid, stupid!  And it is only the first day of school...can't wait for T's IEP meeting when they tell me they are dropping her services.:kissgrits:


----------



## Tesscorm

Sometimes you just can't win!  I would have done the same thing, with the same misgivings.  

But, I wonder if crohn's is really something that needs to be noted on these types of forms *when it's under control*???  I can see how having high blood pressure, arthritis, perhaps diabetes (with sugar/insulin levels) could be directly affected by participating in strenuous activities but I wonder if Crohn's falls into the same 'category'.  When crohn's is under control (not even necessarily in full remission), it won't be directly affected because of an activity; crohn's may cause you to miss a practice or event but anyone may miss a practice or so due to 'typical' illnesses like the flu. :confused2:

IDK...  but, as I said, I have done the same as you and responded that Stephen has Crohns whenever it's been asked.

In any case, I hope she makes the team!!!!


----------



## jmckinley

I would have done the same also. I have always listed Ryan's condition on forms.I hate announcing it to everyone, but I want others to watch out for him. Teachers/coaches are often our first report that something doesn't seem right with our kids. They see them much more than we do during the school year! 

If it helps, have the GI send a letter that states that her condition doesn't affect her ability to participate. Can't hurt....


----------



## DustyKat

Hey crohnsinct,

In the past, kids no longer at school, I have gone both ways with this. Each time it has presented itself i have weighed up what the request was for and decided that way. For example, a school excursion that lasts for one day and involving activities that would present no problem to my child then I say no. However, if the question also asks for a list of medications then I will always answer that my child has Crohn's and list the meds. 

I don't know what intramural is but I assume it is an ongoing thing? If so I would disclose that they have Crohn's and also explain their current status and medications. 

I so hear where you are coming from hun and I would hope more than anything that the team is chosen on their performance and dedication and nothing else. On the other side of the coin though, as a coach or teacher I would want to know if one of my students had an underlying medical condition. Not as a way of influencing my decisions but just in case anything untoward was to happen medically/physically. I have certainly been where you are now, at the receiving end of the wrath and the only thing I could do or say was to explain that they had a right to know because they have a duty of care towards you as a student. 

Dusty. xxx


----------



## my little penguin

We list is so - a the coach knows why he is not up to his usual and b does not think he is "faking" it if he says he needs to rest since his stomach hurts.


----------



## Catherine

Is O ok?  Is just swimming parents?


----------



## crohnsinct

You are sweet to ask.  O is great.  She has been moved up to the senior group.  Not because she has the times but because she is 13.  Practices are harder and longer but she is loving it.  She loves the coaches and coaches love her.  The water is cold though.  The bubble goes up this weekend. 

Yes, it is the parents...you know all the stories I am sure :yrolleyes:


----------



## Catherine

I forget some club base groups on age.  Sarah group ranges in age from 20 to 11 and based on time only.

800 free under 12 mins
400 IM under 6:40

Some parents are a pain.


----------



## Tesscorm

I guess you get those parents EVERYWHERE!  :ymad:  We've had our share in soccer and hockey!

Just gotta try to ignore them (rather than strangle them!  :lol


----------



## crohnsinct

Catherine:  We do times also.  Within seniors there are 3 practice groups...plain old seniors, then pre national squad then national squad (which is where the Olympic trial swimmers practice).  But even though O is 13 and has to move to seniors and is in the lowest  group her times are still far behind everyone else's and believe you me parents make sure I know it.  This is why I usually don't go in...it is a lions den in that lobby. 
Can you believe one parent actually asked how long we were going to milk the Crohns excuse...well lets see probably for life because it ain't going nowhere!!!!! 

Tess: FUNNY!


----------



## Tesscorm

OMG, I can't believe a parent said that!!!  That ONE I hope you strangled!  :lol:  

Last year, S was diagnosed in May and, while he got back to hockey really quickly, it took months for him to really rebuild his muscular strength and endurance.   He started off the season a bit slow and we heard comments as well that S wasn't playing 'like last year' (granted, some may not have known about the crohns). :ymad:  Thankfully, his coaches didn't care and played him as they always did and he ended up having a great year!  But, OMG, we've had some really, really pathetic parents on the kids' teams!


----------



## Suzysu

Seriously - I just can't believe that another parent could be so mean and ignorant.  I guess I have all the fun of dealing with these people as my kids get older!! - you guys must have thick skin - I'm not sure I could take it!!


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## crohnsinct

Bahaha thick skin and a well stocked wine fridge!


----------



## Suzysu

of course - the wine........................................


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## jmckinley

Oh, I can't believe a parent said that! :kissgrits:

I might be sitting in a cell awaiting assault charges!


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## kimmidwife

That is crazy! People are so horrible. Argh! It makes me want to go punch her!


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## Sascot

Have to agree - never quite know what to put on medical forms for school trips, clubs etc.  You must know our role as parents is to never quite get it right in the eyes of our children? 
Thankfully we've never had negative comments from any other parents on Andrew's football team.  However I think seeing him carry on playing with the NG tube in made them think well of him!


----------



## crohnsinct

Well it was a dad who said it and the way he said it you would think I was in there crying all the time about Crohns...so not the case.  Like I said, I avoid the lobby like the plague.  I sit in the car and read with my little one or go market shopping, to the library, to Dunkin Donuts to check on the forum etc.  It was just that he made some snide remark about her being slow and I said, "well we are just glad she can swim" he wouldn't leave it alone and I quoted Catherine's doc saying, "well I have heard that it can take up to 12 months to get your conditioning back" and Bam he hit me with that comment.  I really wanted to let him have it but instead just abruptly ended the conversation, turned on my heels and left. Some people aren't worth the effort.  

There is a coaches meeting with all the parents tonight.  I sent my husband because I don't think I am ready to face that guy again.

But have to say while there are a fair amount of competitive psycho parents most have been kind about O's Crohns.


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## Sascot

Don't blame you!  Doesn't sound like the kind of guy who would ever change his point of view.
I like that going to Dunkin Donuts to check the forum!  Put on a pound for every thread??


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## crohnsinct

Haha yeah except now that I am clean all I get is tea.

That actually doesn't sound the way I meant it.......


----------



## Clash

Crohninct, you're my hero! You showed so much restraint, I don't know that I would've been able to walk away even though I'm well aware that with those types you are only stoking the fire to fire back at them! You go girl!


----------



## Tesscorm

Some of these parents are absolutely crazy - I don't know what happens to them at the rink/field/pool/etc.  I actually thought my husband was going to hit a *mother *on the opposite team a few years ago!    Stephen had gotten hit, he'd been hit many times before but very rarely stayed down but, this one time, he just wasn't getting up.  The coach and trainer were with him and he was still not moving, and this other mother was still cheering the hit and yelling 'great hit', 'let's do it again', 'that's how to play' !!!    And then, when my husband told her 'a kid was down and she should shut up', she came over to our side, up to his face and challenged him to make her shut up!!!  OMG, I seriously thought he was going to take her up on it!   I think that was probably the worst parent but..  there were some other close runners up! :facepalm:


----------



## Catherine

We actually get those type of comments regarding middle daughter, who is a very slow swimmer compare to other swimmer her age at club but the kids at her school believe her a very goods swimmer.

Very long time ago before crohn ever come in my life.  We had a coach tell us that they like the slower maturing girls as the would make the better swimmers in the long run.

Parents like this dad give children sport a bad name.  Swimming is about doing your best and beating your own times.

Only the crohn's family know what the children/teenagers have gone through just to back swimming, it is an achievement in itself.

Are O post crohn's times improving?  Is she happy?

For a bit a fun your can check my rosacea & ibs & colonscopy thread under the my story section and give your opinion.  Add your advice, currently going at me no for colonscopy and 4 saying yes.


----------



## DustyKat

Ah hell! Now I am shamefaced! :redface:

Where the hell did you all get your restraint from! Or is it good manners?!?! Now I am even more shamefaced!!! :redface::redface::redface:

I usually say F*&^ off and then walk away! :rof: 

Embarrassed Dusty.


----------



## crohnsinct

Just updating the diary...

O is up over the 80 pounds the doc wanted to see her at before he would leave her alone...she is 82!  

She had a swim meet the day before the hurricane and bested 3 out of 3 times and a few by a lot. 

She recently bleed for a day and had a few other small things that made me say hmmm (clearly a blip though...read on).  

This weekend she had a three day meet with an extremely tough line up of events.  The dear heart bested 7 out of 7 times and some events took gobs of time off managing to qualify for the first level of championships in a very long time.  In some events, her best times date back to 2009!!!!  Better than the times was how she looked.  She finally looked like she wasn't struggling.  She had fire in her eyes trying to catch (and often passing) the leaders in her heats. We haven't seen that in a long time. We are so proud that during the tough times she still plugged away at practice and meets with very little payoff.  She now understands that it was that hard work that put her in this position now. She told us at lunch that Crohns took so much from her for so long that she is taking it back bit by bit.  

I know only you guys can understand this but I finally feel like I can exhale!


----------



## Suzysu

:dance::dance::dance::dance::rosette1:

YAY!!!!!!!!!!!!!!

What a fantastic post!! well done o and well done mum!! - I really am so pleased for all of you!! xxxx


----------



## my little penguin

Woohoo!!!!
Something to aspire to...


----------



## DustyKat

YEEHAW!!! What a fab update crohnsinct!!! :mademyday:

I so hope things keep heading in this direction for O, bless her...:hug:

You need to exhale hun before you burst with pride! ...and why wouldn't you, what a champion! :medal1: 

Dusty. xxx


----------



## Farmwife

So good to hear some good news.:thumright:
O should be very proud and .......:medal1:
you should feel proud you did a good job raising a fine young lady.:heart:


----------



## Sascot

Fantastic news!!:banana::mario2:  So glad to read such a happy post - long may it continue!


----------



## upsetmom

Great news ........:mario2::mario2::mario2:


----------



## momoftwinboys

Great News!
O gets the Perseverance Award :medal1::medal1:
Way to go!


----------



## Twiggy930

:dance::dance::dance::dance::dance:

Fabulous news!!!!  These kids are amazing!


----------



## Tesscorm

What a GREAT post!!! :banana:  I loved reading it!!!

She's not only going to take back, bit by bit, what Crohns took...  I have no doubt she'll far surpass even her own expectations!!  YOU GO GIRL!!!  :thumright:  :thumleft:


----------



## crohnsinct

So back to doc today for our regular follow up and he is thrilled.  O is up 5 pounds since 8/28 and he says grew an inch and a half (not really they made a mistake at the last appointment as ped measured her two weeks later an inch taller but still a gain in height so I am good). 

Her blood work from two weeks ago is fantastic. 

I mentioned the bit of bleeding and fatigue that has been happening and basically said blood not concerning him and fatigue absent declining blood results or other symptoms is not concerning.  He will however add some extra testing to her 12/31 infusion but doesn't expect to find anything.  He  says her body is using a lot of energy to catch up on growth and given her athletic pursuits she isn't giving it enough rest. 

Staying on 5 week Remi schedule at max dose and going back in April. 

Today is a very good IBD day!!!!! :ycool:


----------



## Clash

:dance::dance::dance:Woohoo to good IBD days:dance::dance::dance:
Way to go O!!!


----------



## Patricia56

Celebrating with you.


----------



## muppet

Well, I think he may be onto something with all the athleticism competing with healing in her body. I think I proposed that quack theory to you before.

I'm not too thrilled, as you have already imagined, with his comfort level regarding her bleeding and lethargy while on Remicade, BUT if she's only two weeks out from an infusion it stands to reason that her symptoms might get a little louder about now. Did he say anything about modulating her dose?


----------



## crohnsinct

She is at the max dose and shortest schedule he is comfortable with.  She just metabolizes the Remicade too quickly (most kids do).  She is at the max adult dose and 5 weeks.  If this didn't work we would probably be adding another med or hitting a flare with EN.


----------



## muppet

Wow. EN would probably sock her in the athletic sense, too. I can't imagine it's exactly triathlete fuel.

What about adding 6MP to the Remi to get her over the gaps? It's kind of a scary option, maybe that's why he's avoiding it as long as her inflammation is low? Is she due for a scope anytime soon?


----------



## crohnsinct

She did EN back in spring into summer and it was great.  Got her to where she is now.  

He actually doesn't believe there is inflammation and she really does seem to be doing very well.  Just those few bits of blood and fatigue but fatigue could be a thousand different things.  

Ya know I fully expected him to say, we are coming up on a year post dx and she is doing so great...let's scope to confirm remission but he didn't.  I think he probably wants to wait for a year from when she really started turning the corner which would be June/July...fine by me no need to miss school then.  Either way, I am watching her and her swimming like a hawk and will call if anything seems off but for now she is good...just tired.


----------



## Patricia56

I know of more than one adult that is on triple remicade every 4 weeks.

I think she needs to cut back on her training schedule if possible to see if it makes a difference.

Sometimes we have to find a middle ground between what our bodies will do and what we want them to do. If doing her athletics is going to wreck her intestines obviously that's not ideal. I realize giving up sports isn't ideal either.

It seems to me that if you don't want to go up on meds then you have to look at what else you can manipulate. 

Biggest thing is the training/sport intensity. And she may find that being able to do things without fighting fatigue all the time is a worthwhile tradeoff. But she is unlikely to see it that way herself and you may have to get parental about declaring a short term break or reduction in training. 

And based on our experience, blood means there is some inflammation. May not be much but there is some. Some is not the same as NONE. and None is what we are aiming for.

As for good labs, that's great that you have them. Are they meaningful? For my son they would not tell you whether he had low to moderate inflammation. Don't know about your kiddo.

Life is just the pits sometimes.


----------



## muppet

It really does sound like she's doing fine. With Sarah I used to not sweat the occasional bit of bleeding, but in more recent years it's almost always been a hallmark of a broken remission for her. Still, for practically a decade, it was not.

While I'm no fan of your GI, it does sound like you can relax a little on this issue and focus on other stuff for a bit.


----------



## my little penguin

Yippee!! For a good appt.
Cautiously optimistic since she does have fatigue even with normal bloods .
For DS it means the remicade is wearing off.
Did they draw trough levels?
To see where she is at when the symptoms start and prior to the infusion.
That is our next step .
Good luck


----------



## Catherine

Glad to hear O doing well.


----------



## crohnsinct

Patricia: Gulp...she already stopped running right after the hurricane and that is when the fatigue started:shifty:.  Haha..her 13 year old rationale...I am not doing enough...my body needs more exercise:redface:  Like I said she is doing well and not tanking and blood drawn every 5 weeks so like MLP said cautiously optimistic (read as watching her like a hawk).  

MLP: are trough levels the Remi level tests?  If so, yes, they did them at every infusion until they finally got it right...They kept finding no Remi in her system.  We finally got good Remi levels in July and August and stopped testing and decided to go on symptoms. 

He said he is adding an iron panel to the next testing and some other tests to see if she had some sort of illness that hasn't taken her totally down that maybe she was fighting.


----------



## my little penguin

Yep - remi levels but since she is having fatigue 
Our Gi plan is once we see symptoms start to check the level and then at the infusion so we can see what level cause symptoms and what level he is at before the next infusion.
Since the fatigue I assume is new -
Then knowing the levels could tell you if things had changed with her system since August .
It could also be an early warning whether things need to change in the future kwim .
Hope that makes sense.


----------



## Jmrogers4

Glad she is feeling well, besides the fatigue.  Hope things keep improving.


----------



## Suzysu

:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:
YAY!! glad all is well!! xxxx


----------



## Tesscorm

Woohoo on the good news!!!!!!!! :banana:  :banana:  Loved to hear it!!!!


----------



## Farmwife

Ya!!!


----------



## upsetmom

Glad to hear some good news


----------



## Catherine

I would also try and have b12, folate, vitamin d along with iron tested


----------



## Sascot

Yay for O doing so well.  Long may it continue.  I'm sure it's probably just hormones causing the tiredness - keep that bubble!


----------



## imaboveitall

Hey paisana,
I suspect her fatigue is from nutritional deficit.
Please don't take this wrong, but I have never thought that active girl was getting enough ABSORBABLE cals.
Recall V needed 3000+ cals when she was as skinny as O was, to gain and grow. She gained 40lbs in 3mos, not 5 in as many. That was the 20 she'd lost plus 20 more. And 2.5in in height. In THREE MONTHS and WITH active inflammation. She is now 64.5in, she was 55in at dx in Sept 2008. 

When O was on EN she was getting far less cals than I felt she needed to come back from such a malnourished, underdeveloped state.
I also feel Boost isn't as well absorbed as the peptide formulas or amino acid based. The Saint agrees. 
You have nothing at all to lose by giving her 1500cals of broken down, bioavailable nutrition via formula daily.
I'd do that and see what happens.

Much love, I have never been able to read about O on here without wanting to up her cals. :heart:


----------



## my little penguin

Tend to agree about the formula.
DS gained 20 lbs . As of now grew 2.5 inches since August .
He still drinks two peptamen jr a day - 3 when he was swimming plus food.
They may help and worth a try .


----------



## crohnsinct

Julie - now you sound like my MIL:ywow:  Yeah I know what you are saying.  We tried to keep the shakes in but that only lasted so long.  I have begged and pleaded her to drink at least one as her post workout recovery snack but she won't touch them anymore. Maybe I will try ovaltine or CIB.    

She has gained a total of almost 20 pounds since dx though (gosh coming up aon a year)...does that make you feel any better? And finally on the charts!


----------



## muppet

Have you ever tried cutting dairy? Dairy gives Sarah "breakthrough" bleeding.


----------



## crohnsinct

She was dx'd with milk allergy as an infant so we cut dairy out.  Then when she was three they told us to add it back in and she hated it.  She eats very little of it but has started to try to eat more at the urging of the nutritionist for bone health.  Interesting.  I will have to keep an eye on that.


----------



## my little penguin

Ok not to be that mom- but if it was her remicade or other meds that she refused to touch.
DS knows his Gi prescribed the peptamen as foul as they taste . He aslo knows they are meds period. We do not negotiate meds.
Doc prescribes end of story.

Is she allowed ice cream for dinner or allowed to stay out at a party all night or ride without a seatbelt ?
You get the idea .
Something's we let out kids chose and control a drink when prescribed by a doc proven to help their Ibd is a med.
It took  DS hours for the first 8 oz and a week or more of tears for the rest but ...
If I say drink 10 minutes later the 8 foul Oz are gone no tube required .

Ovaltine or cib are not broken down enough .
For as hard as she is training age needs the good stuff .
DS is almost back to his original weight % and hopefully will have his height catch up soon .
One study said Ibd kids need a higher bmi close to 18 so when they flare it causes them less issues nutritionally
I think dusty posted it in a booklet from her Gi .

Ok I am off my soapbox now- don't hate me


----------



## crohnsinct

Could never hate you!  

That is how we treated it when it was EEN.  But now Doc said right in front of her she didn't need to drink them anymore so I have a hard time convincing her.  She will do whatever he says but he actually is quite pleased with the weighht so I don't even think he would ask for shakes to up weight.  And that is another thing.....oh now you have me good and annoyed...remember when we were doing EN how I obsessed over not enough calories and not the right formula.  He stood by his 6 shakes a day (BTW she actually had closer to 10 a day) and never once mentioned the more broken down formulas AND when I asked he said it wasn't necessary for her.  Oh and saw your post about scans, imaging right after scopes...yeah we didn't get those either so who knows if this disease is even in her small bowel. 

O.K. I am calm now.  I will email his nurse tomorrow and ask if they think uping intake (food and/or shakes) would help with fatigue. I just don't get it.  She dropped biking over the summer, stopped running after hurricane...so if activity is so reduced why tired?  But still it isn't awful...just not herself.    

Go ahead Muppet...have at it!


----------



## crohnsinct

P.S. her BMI is 14.9.  Sounds close to 18 to me but I really have no clue what it takes to add a few points to BMI.  They did tell me 2nd percentile.


----------



## muppet

I've got nothing to say that I haven't said emphatically already.


----------



## my little penguin

What???
They never did any scans --- at all???
No ct or mre ..
DS has had three since last year and two scopes.
Granted he was a mystery but still 
He had the first scope dx and then boom ct right away.

Both formulas can work but if she is tired then maybe small bowel and peptide takes less energy for the body to use it and works even if there is damage so a win win.
Most US Gi are not up to date on the formula differences or even uses in crohn's 
Our suggested boost since he doesn't like to have parents come back complaining little Suzy won't drink it and he would rather something get in even if its not the best thing kwim .
Hope it picks up for her soon


----------



## muppet

It might be a protocol thing at that particular GI clinic. Sarah has never had any scans of her GI tract either. Scopes only. Of course, her diagnosis is still officially UC, I just don't buy it.


----------



## my little penguin

https://itunes.apple.com/us/app/child-bmi-growth-percentiles/id345677022?mt=8

App for bmi

DS is back to 60th percentile 
From 25% for weight .
2% would scare me...
But he was mostly off the charts for weight and height before so..,
Never small


----------



## crohnsinct

Well this is the same doc who told me he wasn't terribly concerned about wheter it was UC or Crohns because he would treat them the same...unless of course further down the line surfery was being discussed.  Anyway, I am sure he took biopsies but never asked him if they confirmed Crohns as he was pretty definite based on appearance that it was Crohns.  

Anyway, given his above approach I pretty much figure that is why no scans.  It is Crohns and I am jumping to Remicade...no need to put her through more testing because it won't change course of treatment.  

When he mentions scopes to confirm remission I will ask about small bowel imaging.  In April I will ask about biopsies and why they never looked at small bowel.  I was pretty much thrown into this inpatient so wasn't smart enough to question hom when he said the small boel looked good...yeah he was only talking the first little bit.  

She is looking rather good today.  Woke up without a fight and pretty energetic.  She skipped swim last night so maybe that did it...or the last day of school before vacation.


----------



## Catherine

Its good she is gaining some weight.  How much heigh has O added?  As this may have also slowed the weight gain.

This maybe silly question but how much food is O eating?  Is she eating 3 meals and 3 snackes a day?

Also note our sports dietian doesnot believe fruit on its own can be considered a snack as it too low in calories for a low weight swimmer.

Sample: snack, apple and small yohurt.

The formula we have given for calories, is to work out required number calories for a normal swimmer of same age, height, weight (you need to use her goal weigh which would be bmi of 17-18?) plus up to 30% for active crohn's.

You would up the calories over a number of weeks.


----------



## imaboveitall

cinct, 
I feel like crying, sorry, PTSD from V being cachectic. :heart:

What MLP said. And more:
she needs more cals.
The doc is an idiot.
He had her on EEN SIX Boost per day?!? SIX?!?
She was being barely kept alive on that amt of cals, sorry. Let alone being given enough to MAKE UP for extreme deficit/underdevelopment/delayed puberty.
If it were my kid:
NG tube/pump feeds at night of at least 1500 but more like 2500 cals of peptide or amino acid based formula for 30 days and then reassess.
She would be given no choice. 
Main point here: IT CANNOT HURT. CANNOT HURT and MAY (and I suspect shall) HELP. 
Giving her serious drugs is one thing and I too am about to do that; we do that and give them no choice.
But you are hesitant to force her to do a tx that has ZERO DANGER?
Makes no sense to me.

Her sm bowel may look like Beirut as V's does. remission? You have no idea without imaging sm bowel WHAT is going on in there. She may have malabsorption due to sm bowel inflammation.

Please read my tone behind this as: worried, sad, PTSD and firm in belief that I am right about this, NOT mean, OK? :kiss:


----------



## muppet

Hmm I missed the part where she's in the 2nd percentile for body weight. That, I wouldn't sit idle on. 

Sorry cinct, I was hoping you could get a rest from this stuff to deal with your other stuff, but you've gotta be on top of this one.


----------



## crohnsinct

Catherine:  Thanks.  I did look up on USA swimming once  and plugged in her workout and the necessary calories etc.  She does need a lot and I know when we were eating clean she wasn't necessarily get what is needed because fruit and veggies just don't cut it.  Enter bagels and pasta.  Funny...she just had a travel meet and we pay for the bus, hotel, meals and snacks.  The team has a person who buys all the snacks.  After the weekend the coach told me next year they are charging extra for O because she eats like a line backer!  And before dx when I was concerned about her and talking to her old coach he said, "believe me no one is aying you starve this girl....she eats enough to feed an army"  

I haven't entered her new workouts in USA Swimming.  Thanks for the reminder.  I will do that tonight. 

Imaboveitall:  I lnow you are speaking from a place of concern not judgement.  But how do I get the doc to say ng tube when he won't even say shakes.  Also, he said 6 shakes a day she actually had about 10!  As for small bowel imaging...well either I will have to get second opinion for that or just ask him about that next appointment. 

Everyone: But she is gaining weight and a lot of height.  So she is making progress.  20 pounds and over 4 inches.  And I am watching her like a hawk.


----------



## Sascot

That's good that she is gaining height and weight!  Pity she can't shake the tiredness.  I have to say, there is no way Andrew would ever drink Modulen ever, ever again :wink:, so I don't blame her for not wanting to.


----------



## Farmwife

Hey, you know your O the best!!!
She's blessed to have a mom like you! (I'm heavily medicated which is why the nice words)

:dance:If your happy with it all and she is growing and eating like a linebacker, good for her.:dance:
Tell her to enjoy it because the older you get the more it's like, "I eat like a rabbit and still weigh to much.":voodoo:


----------



## imaboveitall

Intake and absorption are two different things.
She may be eating a ton and absorbing just a fraction of macro- and micronutrients.
The doc is an imbecile if he has a kid that skinny and now fatigued despite her scaling back on activites and he isn't thinking nutritional deficit.
Most pedi GI docs are so USED to IBD kids being skinny and having delayed puberty that unless a kid is actively LOSING weight they are OK with the presentation as they see it as to be expected with IBD.

She may not be starving, I am not suggesting she is; but she does NOT sound like she is at the best nutritionally sound place as evidenced by her size and delayed puberty.

That the doc isn't suggesting imaging and wondering if her sm bowel mayn't be involved reinforces my belief that he is an imbecile.


----------



## crohnsinct

Yeah you have a point Julie and I know someone who would agree with you bout our doc.  The imaging of the small bowel is the thing I am most tinterested in.  Going to let some things settle here over the next week and see about maybe a second opinion in Boston or Philly (but Philly would mean more frequent visits to the outlaws so Boston it is).


----------



## Catherine

Is O bmi increasing at all?  Sarah has gone from 14.4 to 20 in a 12 month period.  But she has stopped growing.  She still eats a lot but not as much as 2 year ago when we were tryng to get her to gain weight.

A second opinion is great idea.  Remember muscle is heavy than fat.  So times reduce exercise results in weighloss as they not as hungry so they eat less.

Maybe O disease is sill active?


----------



## my little penguin

Agree with the second opinion-
Just a little background why.
DS was eating close to 2400 calories a day pre dx
Yet not gaining and sometimes losing 
Very tired .
He even was on boost 3 times a day in the beginning would start to gain but the minute we moved to 2 a day he would lose it slowly all over again .
By the time of dx in sept the three boost a day would let him even gain any more .
He was at the 25% for weight. Dropping from the 75% the year before .

His toe nails on his feet have clubbing ( not fingers) from excessive malnutrition .
His nutritional labs were fine and he was still above FTT levels ( which is below the 7% percentile BTW.)

My point being according to the numbers he should have been fine but the fatigue and toe nails told a different story for DS .


If she has always been on the low curve than that may be her curve .


----------



## crohnsinct

Yes.  O was never even on the charts and now she is 2nd percentile.  She went into the hospital weighing 65 pounds at 12 years old and now weighs 83 pounds at 13.  She gained almost 20% of her body weight in the last year. 

Also, I don't  buy BMI as a strict standard.  My husband is very big boned and was very muscular.  At a certain weight everyone was thinking he was seriously ill because he looked emaciated yet his BMI was still in the borderline overweight to obese category.  I think you have to look at bone structure, muscle and all.  

But yes, no matter how you look at it she is thin I will give you that.  

I am such a dork!  It just occured to me.  I am seeing fatigue with the drop of track and worrying BUT she also moved up a practice group in September and is now doing more yardage and longer practices tougher coach etc...maybe her fatigue is simply  that the coach has upped the anty!  

Her doc didn't seem to think inflammation was at play.  

Will still stay on top of nutrition and rest!


----------



## muppet

BMI isn't a great metric but 83 pounds at 13 still sounds absolutely tiny.

I have a pretty hard time believing bleeding without inflammation *somewhere*.


----------



## crohnsinct

MLP: really? FTT is below 7th percentile?  Why then do they say 5% - 85% is healthy on the govt website.  Also, darn ped never saw anything wrong.  I cling to that whenever I feel guilty for not catching this sooner...well ped didn't think anything was wrong either.


----------



## my little penguin

Let me find it later when I have a full keyboard .
One of my irl friends kid goes to an endo and they stated the below 7.
Will update


----------



## Clash

CIC it looks like from your pic you don't weight much more than O!! Genetics do play a role too, C has father that was barely over 120(6"0") at graduation and even now all his weight is in his gut, a mom that graduated weighing 103 and barely makes 120 now at 5'7" and a sister that is 5'7" 3/4 inches and hasn't hit 120 yet. So C is never going to be a bruiser.


----------



## Farmwife

When my mom married my dad at 23 she was 113lbs and is 5'11.
When she divorced him years latter she was at a 160 and is still mad at him!:yfaint:


----------



## my little penguin

What clash said- if she is following her curve which becomes apparent at age 2 then she is fine but if her weight flat lined due to Ibd or dropped over 2 lines ( ie 75 to 25th) and has not gone back to her pre diagnosis curve ( her norm) then is when you have to watch.
Getting to the big computer soon for the below 7 bit


----------



## Catherine

My previous post on Sarah is missing leading on her weight gain.

After reading MLP Sarah only had a nett weight gain of 3kgs.

Jan 2011 approx 56-57 kg
Jan 2012 43 kg
Dec 2012 approx 60kg

O weight is moving in the right direction.


----------



## my little penguin

> Although specific anthropometric criteria to define failure to thrive vary, all describe children with inadequate or worsening growth over time. The most common definition is weight less than the third to fifth percentile for age on more than one occasion or weight measurements that fall 2 major percentile lines using the standard growth charts of the National Center for Health Statistics (NCHS).


from:

http://emedicine.medscape.com/article/985007-overview

aslo read pages 25 - 34 Nutritional growth retardation and when they really get concerned.
 especially page 33 
http://books.google.com/books?id=l7...&q=children percentile weight crohn's&f=false

read pages 30 -34regarding weight and IBD and BMI etc.

It won't let me quote it,:ymad:

https://docs.google.com/viewer?a=v&...&sig=AHIEtbQax8F8A4JdXATNDJ2xZG5afV_UKg&pli=1


----------



## my little penguin

> Am J Gastroenterol. 2010 Aug;105(8):1893-900. doi: 10.1038/ajg.2010.20. Epub 2010 Feb 9.
> Nutritional status and growth in pediatric Crohn's disease: a population-based study.
> Vasseur F, Gower-Rousseau C, Vernier-Massouille G, Dupas JL, Merle V, Merlin B, Lerebours E, Savoye G, Salomez JL, Cortot A, Colombel JF, Turck D.
> Source
> Pôle de Santé Publique, Parc Eurasanté, University Hospital, Université de Lille 2 EA2694, Lille Cedex, France.
> Abstract
> OBJECTIVES:
> Growth retardation and malnutrition are major features of pediatric Crohn's disease (CD). We examined nutritional and growth parameters from diagnosis to maximal follow-up in a population-based pediatric cohort, and we determined predictive factors.
> METHODS:
> A total of 261 patients (156 boys, 105 girls) with onset of CD before the age of 17 were identified from 1988 to 2004 through the EPIMAD registry (Registre des Maladies Inflammatoires Chroniques de l'Intestin) in northern France. Median age at diagnosis was 13 years (11.2-15.4) and median follow-up was 73 months (46-114). Z-scores of height/age, weight/age, and body mass index (BMI)/age were determined. Multivariate stepwise regression analysis identified predictive factors for malnutrition and growth retardation at maximal follow-up.
> RESULTS:
> At diagnosis, 25 children (9.5%) showed height less than -2 s.d., 70 (27%) weight less than -2 s.d., and 84 (32%) BMI less than -2 s.d. At maximal follow-up, growth retardation was present in 18 children (6.9%), whereas 40 (15%) had malnutrition. Nutritional status was more severely impaired in children with stricturing disease. Growth and nutritional retardation at diagnosis, young age, male gender, and extraintestinal manifestations at diagnosis were indicators of poor prognosis. A significant compensation was observed for weight and BMI in both genders and for height in girls. No treatment was associated with height, weight, or BMI at maximal follow-up.
> CONCLUSIONS:
> In our pediatric population-based study, growth retardation and severe malnutrition were still present at maximal follow-up in 6.9 and 15% of CD children, respectively. Young boys with substantial inflammatory manifestations of CD have a higher risk of subsequent growth failure, especially when growth retardation is present at diagnosis.


from:
http://www.ncbi.nlm.nih.gov/pubmed/20145606


why they see underweight poor growth as the norm:ybatty:


----------



## my little penguin

of course can't fine the 7%- I know I read it somewhere- just can't remember where-
ALso know it was associated with crohn's.

maybe another day.


----------



## Farmwife

First off mlp that fact the your brain can store that much info is aw-inspiring!
Trust me if you read 7% somewhere I believe it!


----------



## crohnsinct

my little penguin;557145
It won't let me quote it said:
			
		

> They're on to you MLP!
> 
> Don't worry we won't let them shut you down.  We NEED you.  Mary get the vice! FW get the rolling pin!
> 
> Thanks for all the info.  Will read it as soon as I get my family out of the house.


----------



## DustyKat

Sorry I am late to this crohnsinct. :ghug: And I have to admit I have skimmed a little over the posts to catch up. :redface: So if I am repeating what has already been said...sorry! 

I can well understand the sentiment of treatment being essentially the same regardless of  the disease but I do think it is imperative to establish if there is small bowel disease present and to what extent as it plays such a critical role in the absorption of nutrients. 

Along with the Iron studies have B12, Folate, Vit D, Magnesium, POH4, Calcium and Zinc. I hope all is AOK with them but if not it will give you ammunition to pursue further testing. 

Dusty. xxx


----------



## izzi'smom

At one point I agreed with the sentiment to delay imaging the small bowel if the result wouldn't directly affect treatment plans. I have since changed my tune, as my OCD has taken over and I want to know everything. 
FWIW, Izz's GI has one child on Remicade every two weeks, citing a new study that shows moderate efficiacy. He has two refractory kids that he is having a hard time getting under control.


----------



## crohnsinct

Hi everyone...boat docked so I jumped on the computer...Tesscorm says Hi and don't worry I am taking good care of Stephen:ycool::ycool:

O had her infusion yesterday and are you ready?  She has gained almost 2 1/2 pounds in two weeks! She is now at 15 something BMI and has moved into the 4th percentile...all in two weeks! 

The fatigue seems a lot better also.  I am guessing it could be because I think I figured out a rational explaination for it and I just feel better or she is adjusting to the harder group and getting more rest this holiday or the new veggie/fruit smoothies and hemp seeds I am giving her are really helping with her nutrition (maybe they even helped with weight gain...couldn't be all the holiday eating could it?). 

No blood since last infusion.  

Now the yucky part...I wasn't in the room when they pulled her blood....daddy was and well you know our deal there...anyway when I got back I asked if they pulled the extra tests and they said no just the usual.  So I won't have the extra tests we were hoping to get but she is looking great and not complaining so I am good.   

Life is getting in the way of my forum obsession again so excuse my absences but know that not a day goes by that I am not thinking of you all and praying for you all. 

Oh they are boarding the boat again...gotta go!


----------



## Farmwife

I'm so happy to hear the great update.:hug:

As far as the boat.....
It time to wake up and take your medicine!:rof:


----------



## DustyKat

So fab to hear all is going well with O!!! I am so happy for you all and I hope more than anything that it keeps on keeping on.  

Onwards and Upwards! :heart:
Dusty. xxx


----------



## Sascot

So glad things are going well - enjoy! Not been on here as much either, I had a cough so hubbie was sleeping in the office - no late nights on the forum for me :shifty:.  Wishing I was on that ship too!!


----------



## Suzysu

Hurrah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Crohn's Mom

So very happy to hear that good news about O ! 

Now get off my boat, and stop drinking MY wine ! LOL


----------



## Jmrogers4

Glad things are going well and go enjoy your wine!!


----------



## Clash

So good to hear things are going great!! Way to go O!!!:thumleft:


----------



## my little penguin

Yippee good news


----------



## kimmidwife

Happy to hear good news!!!! Glad to hear she is doing so well.
:dance: :dance: :dance:


----------



## crohnsinct

So my update from July is on success stories but it is more of the same.  

Had O's check up with GI today and he is over the moon with how well she is doing. She grew since July and gained 5 pounds (I didn't tell him the old weights were based on first thing a.m. and this one after a full day of eating...I don't think that mattered much). She is 50th percentile for height and almost 10th for weight.  He is officially not bothering her about her weight anymore.  Her inflammation markers are perfect as are her iron and vit d levels. 

She has now done two infusions at 6 weeks and I asked if we could move to 7.  He said not without checking Remi levels.  Well since she is adding two hours of track 5 days a week to her 6 day a week swim schedule I thought it would be pointless because she will probably come up low with all that exercise helping to burn through the Remi.  He agreed.  

He wants a dexa scan as her last one at dx was borderline.  So Jan/Feb when we go in for infusion she will kill two birds with one stone.

Oh yeah and the IBD center we go to has a symposium in the beginning of November,  for parents and patients.  He asked O and I to be on a panel of patients and parents to speak and field questions.  She did great.  

Scopes will be scheduled for summer so she doesn't miss school.  

I think that covers it!  Really hoping and praying that this forum is chuck full of updates like this real soon!  

Oh we dropped Prevacid!  YAY!  

Psoriasis still pissing me off and she has a new trick...blacking out.  She had an EKG and all was perfect so they are telling us just normal syncope and just keep hydrated.


----------



## Jmrogers4

Fabulous news CIC, Praying that it continues for a long time, like forever!


----------



## Mehita

Woohoo!


----------



## Sascot

Thanks for the fab update! Great news.


----------



## my little penguin

Yippeee!!
great news!


----------



## Clash

Woohoo that all sounds awesome! WTG O!


----------



## upsetmom

Glad things are going well :dusty: 

l hope it lasts forever.


----------



## momoftwinboys

Great news. How awesome you guys did the panel to help others!
Hope we hear about her psoriasis improvement soon too


----------



## Farmwife

Well that's just wonderful news CIC (*C*rohnsinct* I*s *C*razy)

Long may it last.:hug:


----------



## Suzysu

Hurrah!!!!!! I am so pleased for you guys xxxx


----------



## crohnsinct

Just wanted to share our latest update.  Been waiting for awhile because we had scopes scheduled but for some reason they kept getting postponed...oh yeah...because they kept getting n the way of O's busy athletic life.  

Finally had scopes today (first since dx 3 years ago)  and no sign of inflammation anywhere.  Yes, we still have to wait for the biopsies to come back but I fully expect those to be fine also.  

O has been very well.  She continues to run on the track team every day, never misses school because of Crohn's issues, is on the Headmaster's List, and is now down to swimming 3-4 days a week.  Mostly to preserve her running times but also for weight and menstrual issues.  

She has gained 39 pounds and 7 1/2".  BMI is 16.7 which puts her in the 6th percentile so we will keep working on that but since she is doing so well the GI isn't really concerned and I was even worse than her as a kid and didn't have Crohn's so it looks like it is just in the genes. 

We have extended Remicade out to every 7 weeks and she is down to 6mg/kg.  Still taking the mtx for her psoriatic arthritis and the psoriasis which to look at her you wouldn't be able to tell.  She is a flaking mess but will take that any day to have the GI success she is having. 

We pray every day that all of the families here will soon blow up the site with the same kind of good news. Hugs to you all!  Thanks for always being there! :ghug:

P.S. going to cross post on success stories because I think it is important that people checking there see lots of good news so you can ignore it there:thumleft:


----------



## Suzysu

Totally wonderful news! Long may it last! I am so pleased for you guys!:dusty:


----------



## Sascot

Wonderful news! Long may it continue


----------



## my little penguin

Such great news !!!!


----------



## Clash

Voodoo! Awesome news!


----------



## crohnsinct

O had her regularly scheduled follow up with the GI today.  During the appointment the GI mentioned wanting to get a Remi levels test.  I asked why and he said there was some inflammation at her last scope.  

Flag on the play!  No one told me about inflammation!  Must have been pretty minor for them to wait three months to even discuss it but still!  

So he wants to pull a levels test to see where she is and if she is low and that is the reason for the inflammation.  At some point, he decided to pull a fecal calprotectin first and then make adjustments to her dose and schedule for the next infusion and then pull a levels test at the next one. 

Not worried.  This is one of the nice things about Remicade...we can adjust away!  More than likely our aggressive move up to 7 weeks and down to 6mg/kg was just a bit much.  She is still asymptomatic so that is good.


----------



## kimmidwife

Hoping it is just a small bump and the remicade is still doing its thing!


----------



## Maya142

Glad she's still feeling well. Hope Remicade can be adjusted and keeps working like magic!


----------



## Mr chicken

I personally hate "just a little inflamed" yes the docs have seen worse but complete mucosal healing is the new goal

Hope tweaking remicade gives you good answers


----------



## Sascot

Good to hear she is doing well. Hopefully a little tweak in schedule will take care of the mild inflammation


----------



## DanceMom

MLP you are so right.  "Just a little" inflammation has caused big problems in my girl!


----------



## CarolinAlaska

Your girl has some inflammation, yet is asymptomatic.  My girl has no inflammation, but is bent over in pain at least once a week...  I hope the tweaking helps.


----------



## Mr chicken

Carol I can say we were in your position from dec last year till April
Finally pulled all food and have bern adding things back slowly 
It was surprising the foods that caused abdominal cramping with DS
But without those foids in his diet and staying on formula while we trial one food at a time has made it much easier to figure out .


----------



## Clash

yep I hate the whole "a little inflammation" statement too! I hope the tweaks put her on the right track!


----------



## Farmwife

I pray the tweaking works and that inflammation goes away!


----------



## crohnsinct

O.K.  Pretty sure the committee isn't going to be happy with this.  

O's fcp came back 147 but nurse said that is great considering our lab's normal is 162.9 (Quest).  Now I get that for Quest that is their normal but in my opinion fcp is fcp.  It isn't like they are testing something different or using different units etc.  So if all the studies say less than 50 is normal and all the other labs say less than 50 then I want less than 50! I am greedy that way. 

So while it is not very high (the benefit of having another daughter with an fcp of 700) I am left wondering if this 147 is the reason for the microscopic colonic inflammation.   I am also wondering if this might be new inflammation elsewhere.  She has never had small bowel imaging so does this 147 mean inflammation might be showing elsewhere in the small bowel? 

Oh wait!  Silly me!  147 is normal!

She has infusion tomorrow so I will be curious to see if her dose is adjusted or if they want o pull a levels test.


----------



## Clash

Yeah by Quest mine was 152 or 157, which I didn't like either. But my scopes were clear so I was sent on my way because "hey 152(or 7) is normal.

I am a firm believer in some fcp but that is because it is a great indicator for C. So I specifically ask for labcorp for C just because I refuse to have the 167 NRR debate! Ha!

I'm not sure about possible inflammation further up. And even though I say how great it is for C we did have that fc that was 48 a year before his surgery but the surgeon stated emphatically that C surgically removed area had in his opinion been there since dx)or technically before). And a month before biopsies came back showing inflammatio(scopes looked pristine) he had an fcp of 59.

If it was C(and because of his age) I would tell him the number, give him the info about fcp, then my opinion but tell him further testing was up to him. I might possibly refuse also to cook supper until he decided on further testing but hey that's just me! LOL!

Honestly, I'd do as you suggested and be looking for how things may change at next infusion and ponder a levels test.


----------



## Maya142

I would ask for a Remicade levels test. I think it's perfectly reasonable - inflammation is inflammation and you're right, most studies go by the 50 bench mark. If you can adjust her dose and get rid of the microscopic inflammation, then why not? 

Fwiw I have started to do what Clash does - just use the labcorp test so we don't run into this problem!


----------



## pdx

I would also be concerned with a number over 50, especially in light of the microscopic inflammation.  Good luck tomorrow!


----------



## Pilgrim

Are they going to move back to her previous dosing? 

Do you still think you can control this disease?:hug:


----------



## crohnsinct

Haha. I love this committee! 

 I used quest because they are on my insurance plan but if my insurance doesn't cover the test screw it!  I will go lab iep from now on!  

Pilgrim:  absolutely feel like we can control it. Just need to know what we are dealing with and adjust accordingly. My big worry would be the constant inflammation healing cycle and risk of scar tissue. However since her scopes visually looked pristine I am not concerned about the colon. Would like some small bowel imaging so I could rest at night though.


----------



## Mr chicken

Here is the issue
Mre are pricey 
So if she isn't having symptoms
Her scopes look good visually 
Lab work looks good and fcp is "normal " per the lab it was run at 
Then it would be harder for the doc to justify the test to the insurance 

Not saying that I wouldn't push ( I am a pushy person -ask all of Ds docs  )
Just saying things get trickier when everything is normal


----------



## crohnsinct

Aaaah  The wise chickie (notice I didn't say old) weighs in.  That makes sense given the schpeel I got about using steroids before moving to biologics for T.  

If he pulls a Remicade level and/or makes dosing adjustments I am good with waiting and pulling another fcp in 8-12 weeks, which btw hasn't been mentioned.  Let's see what they say  and do tomorrow.

I really am quite calm about it all but just want to make sure we aren't resting on our laurels.  It took us quite a while to get here and I want to stay.


----------



## Catherine

I don't think it actually the number on the faecal calprotectin as such that matters but the trend.

Our Gi would like the fc to be normal which is under 50.


----------



## crohnsinct

Thanks Catherine.  They haven't mentioned pulling another test because I guess they are fine with the number.  Even if they did pull another test, I wouldn't expect it to be trending up.  With the microscopic inflammation found in biopsies in March and now this 147 in late June, I am starting to suspect this is where she sits.  I don't think it goes much higher because she feels well, continues to gain and is on Remicade and methotrexate.  I more suspect that we are controlling 95% of the disease which is really great but we all know full mucosal healing with no microscopic inflammation is the goal.  I know it is possible because many of us here have gotten there.  

Can't wait to see what happens at infusion.


----------



## crohnsinct

No levels test, no increase in dose, no tightening of schedule....no wine! :ytongue:

Guess I will just wait until we see him in September.  Anyone have the ball vice?


----------



## Jmrogers4

Hmmm, we've always used Quest for FC, never had one below 50.  First one was 90, with scopes at the time showing healthy pink tissue.  Next were 295 and then 397 a couple months later which coincided with symptoms and MRE showing inflammation.  Last one done a couple of weeks ago was 68 which we did because of recent weight loss, so since it's not under 50 should I be worried that maybe there is microscopic inflammation and that is why the weight loss? 
Now I need a glass of wine...


----------



## crohnsinct

hmm. Well since it is close to 50 but there is weight loss I would be inclined to wait and retest in 8-12 weeks. O has microscopic inflammation but is gaining loads of weight. Funny thing is I am actually a tad concerned about how much and how fast. Go figure!  

So yeah with the weight gain and lack of any symptoms I can wait until we see him in September.


----------



## Pilgrim

Can you take FCal sample in then?


----------



## crohnsinct

Pilgrim said:


> Can you take FCal sample in then?


Teehee!  You have been hanging around us too long!  Learning our impatient tactics. 
Yeah I can. I can probably get him to order one earlier if I want also.  Easy to wait as I have bigger fish to fry with t and o is feeling well. Will also see if anything changes with the next infusion. I guess it is totally possible her microscopic inflammation subsided and quest knows what they are talking about.


----------



## Pilgrim

I think aggressive, impatient advocate is a large sub-type in Crohn's mothers.


----------



## Mr chicken

Yeah that^^^^
But I learned to chose battles wisely


----------



## crohnsinct

That's funny!  I was talking to nurse at infusion center today about this same topic.  She works in a few different departments and she lovingly said that IBD parents are the craziest.  So I explained why: 

- symptoms could be in joints, eyes, skin, head...you pick...anywhere and everywhere not just intestines so we never quite know what is IBD and what is some other miscellaneous thing
- asymptomatic kids end up deathly ill in a matter of weeks 
- all symptoms could be explained by many other things so am I being paranoid or observant 
- no clear cut treatment plan 
-no cure stuck with the disease 
-long road to dx and often many misdx's 
- lots of waiting and watching with no answers
- drugs stop working with no warning  

Tell me you wouldn't be a tad bit insane.  She was floored.  She said, Wow!  Next symposium we have a presentation entitled, "this is what it is like to be an IBD parent" 

So yeah...I am impatient and crazy and I wear it proud!


----------



## Maya142

You could wait and watch VERY carefully. And then maybe get FC repeated before you see her doctor next.
Of course, to be able to do that you deserve LOTS of wine!


----------



## Pilgrim

CIC - I hope I have permission to reproduce your list at my next craziest (this mother having already started a crazy letter campaign at hospital - personal reputation not so good)

I hope she was serious about the symposium!


----------



## crohnsinct

Pilgrim:  reproduce away! 

So for all my mtx friends.... I guess it's no surprise t ended up on steroids then eh? 
http://www.ncbi.nlm.nih.gov/m/pubmed/25723614/


----------



## Mr chicken

Ummm
Cic
Not an Mtx paper
Too much :drink::drink:


----------



## crohnsinct

Lmao!  In car hubby driving. I should be drinking!  Going to get mtx paper now!


----------



## crohnsinct

And I posted it here on o's thread and it was for t!!!  Anyone looking for the paper can look on t's thread. Anyone looking for my sanity I think I left it an hour back on the highway!


----------



## crohnsinct

Update:  Seems microscopic inflammation in March scope and a fecal cal of 150 in June means 2 1/2 months later things go down hill.  

O had had loose bm's (not D but teetering on the edge), blood, loss of weight, loss of appetite and extreme fatigue. 

Doc thought it was run of the mill exhaustion but pull FC just in case.  FC didn't come back in time for her last infusion on Monday so no levels test.  FC is 460.  

Doc's plan...up her mtx to 12.5 once a week. He hasn't mentioned changing Remi schedule or dose. 

Don't ask me his reasoning.  

Her appointment is next Tuesday so I can add this to the list of questions I have on both girls.


----------



## Jmrogers4

Hope it's just a tweak of something and she is back on track


----------



## Sascot

Sorry to hear that! Hope the increase in dose does the trick


----------



## pdx

Glad that she has an appt soon, so you can talk more to her doctor.  Has she been feeling better since her infusion, or is she still having symptoms?


----------



## crohnsinct

Still fatigued, still mush, still not eating, continues to lose weight.  IDK about blood.  I haven't looked and she won't report.  

As luck would have it she took her mtx on Wednesday night and we got the increase instructions on Thursday so we have to wait until next week to increase her dose. 

Plus without the levels test we have to wait until her next infusion (she is on 7 week schedule) to run that. 

I think we just got too aggressive with moving out the interval and decreasing the dose.


----------



## Jmrogers4

Can you do levels test at 4 weeks? Jack's GI was talking about that.


----------



## CarolinAlaska

Shoot.  I hope the tweaking works for her.


----------



## my little penguin

They actually recommends DS get his tested at four weeks out since all the papers had numbers for that specific time frame 
Good luck


----------



## crohnsinct

Had o's appointment today. She is only down 2 pounds now. All blood work normal. Gi says a 460 fc wouldn't cause crohns fatigue without anemia. He is not concerned. Says likely some inflammation but not much. 

Maybe normal teen fatigue. 

Not testing levels. Not tweaking dose or schedule. Just the increase to 12.5 mtx weekly. 

Pull fc in a few more months. 

He did agree to run thyroid and b12 at next infusion in 6 weeks.

Have at it.


----------



## CarolinAlaska

I disagree.  Jae never showed any abnormal blood work when she was at her worst.  She could hardly function with fatigue an FC was only around 690...  Hope the MTX tweaking does the trick!


----------



## Sascot

Difficult. For us as well, bloods always normal. I would think that FC is fairly high, hope the increase dose takes care of that. As for fatigue, it's really hard to tell. This is Andrews one remaining symptom that comes and goes. Other than having some liquid iron, they just say it's a combination of normal teenage fatigue added to having Crohns


----------



## Jmrogers4

crohnsinct said:


> Had o's appointment today. She is only down 2 pounds now. All blood work normal. Gi says a 460 fc wouldn't cause crohns fatigue without anemia. He is not concerned. Says likely some inflammation but not much.
> 
> Maybe normal teen fatigue.
> 
> Not testing levels. Not tweaking dose or schedule. Just the increase to 12.5 mtx weekly.
> 
> Pull fc in a few more months.
> 
> He did agree to run thyroid and b12 at next infusion in 6 weeks.
> 
> Have at it.


Have to disagree here as well at least in our case this was close to Jack's 
FC when we switched to Remicade.  MRE showed all kinds of inflammation in the small intestine.  All other labs were normal.
Fatigue was a major symptom at that time.  Could be something else but hope the increase in Mtx takes care of the inflammation.


----------



## Maya142

M had an FC of 480 and her GI thought it was way too high. Fatigue and BMs at night were her symptoms at that time. Some abdominal pain. We added Imuran to bring it down since she was already on the maximum dose of Remicade.

I think at least Remicade levels are warranted -- 460 is not a normal FC!!


----------



## pdx

Yeah, I agree that it seems like more action is warranted with those FC numbers.  

Sorry that you're dealing with so much inertia from your GI with both of your kids right now.


----------



## Toni68

Hi well after fc came back at 370 I was told to up my 3mg of entocort (that I've been on since resection 2 years ago,also on 50mg simponi once a month which was going to be increased to twice a month but then had spontaneous bruising which is being investigated)to 9mg for a month and now I'm on 6 mg for 2nd month....had mri done a couple of days ago and ibd nurse rang to say mild chronic distal disease(I thought it strange mild and chronic could be used in the same sentence ha) also 2feet was removed in resection and only diagnosed late 2012..... Anyway..results are going to be discussed with the radiologists and comparisons done with previous imagings (I take it to include the 6 pilcams I've had in the last 2 years which ALWAYS showed active inflammation) to see what they're going to do with me.... Seriously hope another resection isn't looming


----------



## crohnsinct

Golly Toni I seriously hope you don't have to have another resection!  

Were you having any symptoms at the 370 FC level?


----------



## Toni68

Hi yeah strangely ALL on the left,I know could be deferred pain but I do have AS as well so maybe my hip?asked doc a couple of weeks previous would small bowel mri show the decending  colon and he said yeah, but nurse said it wouldn't?usual fatigue ,discomfort, but no overwhelming pain my bloods which were done last week as usual all came back normal but then even when I needed emergency resection inflammatory markers never rose sooooo in the meantime getting a hip X-ray done for rhemotology which I haven't an appointment for Til next MAY. Funnily I feel worse after mri strange stabbing pains in the upper stomach and on lower left also had bad pain last week between shoulder blades thought it might've been gallbladder but I'm sure that would've showed in mri? I already have bile malabsorption from resection and take cholestrymine for that and just to add I did the FC in July and only got results in September really annoying and another thing RELLY annoyed that on at least 3 times when I've gone on hospital appointment my file wasn't there and they didn't know where it was? God give me strength


----------



## crohnsinct

YIKES!  What a debacle:voodoo:


----------



## CarolinAlaska

Toni, that's terrible!


----------



## crohnsinct

Just a quick update: 

O continued to have "things" going on here and there.  Not the least of which was a toilet full of blood on one occasion and considerable blood and mushy BM's here and there.  Fatigue and slow times with running continued as did urgent BM's and accidents when on runs.  

B12 and thyroid tests came back fine. 

Bleeding and mushy BM's come and go...currently gone.  fatigue seems to do the same. 

She has not lost any weight and her most recent FC is 260.  GI is pleased with the reduction in FC and has agreed to let her go back to her 10mg dose of Mtx.  She will be moving to injections because the 12.5mg dose made her sick and now she has a problem swallowing the pills.  

GI is putting the bleeding and mushy BM's down to mini flares that are stress induced.  This despite the fact that she is not stressed what so ever. 

She still has never had any small bowel imaging done.  

Most recent sed rate was 28...normal up to 20 so not terrible but she usually sits around 9.   

So long story short seems we have one of those GI's who is comfortable with "some" inflammation an believes in blips.  

Thinking about seeking out another doc but just tired right now.  O also has a hip issue we have been dealing with since September and her sister is still not in remission and dealing with rheumy issues so maybe when the dust settles I will start looking.


----------



## pdx

So sorry.  And yeah, I agree that a second opinion would be a good idea, but I also totally understand the amount of time and energy that takes. Good luck, and I hope that both of your girls are feeling better soon.  :ghug:


----------



## Sascot

Sorry to hear that. Definitely worth a second opinion once you have the mental energy to deal with all that. Hopefully the added methotrexate will do the trick though.


----------



## Tesscorm

Sometimes there are just too many balls to juggle!  I certainly don't know what's right or wrong but, you might remember, when S was with his ped GI, his office told me they often see 'some' inflammation in kids??  Maybe, when all else is under control, ped GIs prefer to see if initial symptoms resolve themselves before moving to change treatment plans??

In any case, totally understand that you sometimes need to let the dust settle and regroup before taking on a new challenge. :ghug:


----------



## kimmidwife

Sorry to hear. It really sounds like it is time for another opinion but I know what you mean about being exhausted.


----------



## Optimistic

Sorry. I hate that Crohn's is beating on your so much right now.


----------



## crohnsinct

Hi guys!  Sorry we disappeared.  Lots going on.  

For starters, O continued her mush, bleeding and accidents nonsense.  At one point GI said proctosigmoiditis as she has always had inflammation in her rectum.  We tried topical foam and that made things worse so stopped.  Doc wasn't to concerned and O had to have surgery on her hip in January so that was the primary concern.  Got her through surgery and her nonsense continued.  Pulled FC and it was 1130.  Had scopes and there was inflammation and it spread to her TI and a little in her duodenum.  This was pretty disappointing because all her inflammation was stomach/colon/rectum up to that point. Her Remi levels were just 5 so we upped her Remicade a bit.  Her nonsense continued and in August her FC was 137... normal. So even though there is no pain with her accidents and frequent (we are talking could be 20 times a day) bathroom trips, and extreme fatigue, she hasn't lost weight, has pretty much stopped bleeding and has a normal FC so she now has an IBS dx.  

In other news, we have moved.  We are no longer in CT. However,  we are in California so I guess I can keep my nickname CIC! 

T is doing well.  Her rheumy has ruled out any issues there with her pain and we saw pain management who told us she has amplified pain.  We were having her seen to learn various coping mechanisms, got a gel and a tens unit.  She still has joint type pain but feels less stressed about it knowing that it is nothing.  She is on Remicade...I think you guys knew that and for the first time ever got a 50 fecal cal without the use of EEN so we are super happy. 

O is at college clear across the country in the southeast.  Just broke her wrist and tore some ligaments.  But otherwise doing o.k..    

Both girls are getting home infusions which O thinks is just the greatest thing ever because it interrupts her life the least.  T is about to have her first one next week.  

We didn't like the GI we saw here so are in the process of switching docs again.  

I think that's about it.  Off to change my profile to reflect the correct state/area.


----------



## kimmidwife

Glad to hear the update! Congrats on your move. I hope both of them continue to do well!


----------



## pdx

Thanks for the update, CIC. I'm sorry that O had such a rough year. Hip surgery (and a broken wrist!) is a lot, but adding all the Crohn's issues sounds like a hard senior year. Do you think the IBS diagnosis is correct? Are there any plans for scopes in the next year to make sure that it's not really just Crohn's?  

So glad that T is doing well on Remicade, and hope that you find a GI that you like in your new town.


----------



## crohnsinct

PDX - I don't know what to think. 

We moved to California a week before college started and tried to tour but she couldn't manage more than two half days out of the house. She spent the remaining days having lazy days at home.  

We flew out to her school's town a couple of days before school started so we could buy all her dorm stuff.  The poor kid couldn't get through a store without going to the bathroom at least 6 times. It continued all day.  I actually picked everything for her.  Then she was so fatigued she asked if we could just sit in the car and then asked to go back to hotel.  At a time when she was supposed to be having fun and be so excited she just couldn't manage it.  

I was sure her fecal cal would come out high but nope.  Normal.  

Absent elevated FC, abnormal blood labs or weight loss I have to accept the IBS dx but would be lying if I said I would be surprised if down the road we find out her Crohn's wasn't totally controlled.  

She doesn't call home much and we never text about health.  I figure there is nothing I can do from here so best not to know too much.  She will figure it all out.  I will see her over thanksgiving so will hopefully have a better read on things.


----------



## pdx

:ghug:  Man, the college years have got to be hard (for parents, I mean!). You know that your kids have to start taking control of their health and health care, but they're still young too... Glad that you'll get to see her over Thanksgiving!


----------



## Pilgrim

Thanks for the update. You sound so calm, I'm not sure how you do it.


----------



## Lady Organic

I recently got a 66 FC and have 5cm inflamed in rectum. I was much faster than calpro to detect my flare. The sample I sent was with mucus and microscopic pieces of blood inside mucus, imagine... I know now FC is not of much use for me unfortunately. It has no predictive value for me, as my clinical symptoms alert me faster than FC.
Endoscopic factors influencing FC:
https://www.ncbi.nlm.nih.gov/pubmed/26351383

I'd try to repeat FC as soon as possible especially during a difficult day.


----------



## Jmrogers4

What about an MRE? or did they do with scopes, pill cam?  Certainly sounds like there is more going on besides IBS.  I'm with you on the can't do much about it so try and let them handle it.  It's so much easier to do that on things other than health.  I just have to hope that like so many others on here that have kids who have already passed this stage that they were listening all those years and really do know more than what I think they know.


----------



## Farmwife

:ybiggrin:Welcome HOME!

I've decided to take the "Mother Gothel" approach and tell  Repenzel it's not safe outside these walls. 
That way I don't have to worry about her going to college. Lol 

Same thing for Grace as lady organic.  Normal FC count but scopes showed different. 

So do you like your new state?


----------



## crohnsinct

Lady: Interesting.  My daughter's problem area is the rectum.  I have read and heard that this is the hardest area to get under control and am now wondering if maybe it doesn't she as much calprotectin as say the colon? 

Pilgrim:  have I been gone that long that you have forgotten my favorite coping mechanism?  :drink:

Farmwife:  Good luck with that strategy but don't be surprised if you abandon it once she hits that terrible senior year!:ack:  You might be begging her to go. 

We like our new state but it is VERY different.  Who would have thought same country and all but I guess going from one coast to another does have differences.  Moved to a major city though so at least there is that!  :ytongue:


----------



## crohnsinct

We went to a new, new GI.  We like this one.  We went for T but I will brain dump his thoughts here.

He says FC limit for small bowel disease for him is 100.  Over 100 he starts thinking about changing therapy.  He takes FC at every infusion.  He is a huge proponent of TIGHT control.  He also takes Remi levels at every infusion.  Likes to see 6 or 7 at least.  

I told him about O and her goings on.  He doesn't agree with the IBS dx.  He absolutely thinks she is dealing with disease.  He is going to see her when she comes home for Thanksgiving.  He says her Remi levels should be at least 10. He is afraid that leaving her so low for so long may have caused her to start to lose  response.  Rectal disease is the hardest to control.  Says when Cortafoam doesn't work Rowasa does and vice versa.  So he will trial her on Rowasa and increase her Remi.  

O happened to have her infusion that same day and her labs came back with high CRP and ESR.  Old GI (her current one right now) asked about symptoms and sure enough, 10-20 times a day, mush, mucus and accidents.  No blood.  He has her on a short burst of Prednisone to try to reign things in.  

Really?!  Don't you just hate it when forum parents know more than docs?!  

Looking forward to moving her care to new doc who btw agreed to overbook day before Thanksgiving to see her when she comes home.


----------



## Jmrogers4

Glad she is seeing new doc he sounds great and hope she gets things under control.  College is hard enough to deal with on its own.
I sometimes think we actually have more collective experience than some GI's.
I'm busy scheduling doctors, dentist, flu shot for Thanksgiving and Christmas break.  Have an email into his GI as he has not had labs done since Aug. 7th.


----------



## crohnsinct

Jmrogers4 said:


> I'm busy scheduling doctors, dentist, flu shot for Thanksgiving and Christmas break.  Have an email into his GI as he has not had labs done since Aug. 7th.


Same here.  All three of the four days she is home she has an appointment or two. :ybatty: O got her flu shot on campus.  Did they not offer that at his school? 

O's GI also skipped labs for her September infusion due to the fact that there are no in network labs near school.  We did OON lab work at the school medical center this last infusion and thank goodness we did.  I wonder if we did them in September if we would have caught this earlier.:confused2: Of course it might have helped if she reported her symptoms to someone. 
 #learningtoletgosucks


----------



## Jmrogers4

Oh they offer flu shots I've been nagging and the health center is steps from his dorm, he walks right by it several times a day! learning to let go sucks is right!
He is sick now and didn't go to class yesterday, he called me from the store to ask what kind of meds he could have (silly boy I packed some cold meds in your first aid kit and I told you that).  I know he must be feeling really bad because he had to be pretty bad here before he would miss school and I always kind of left it up to him - you know only you know how bad you feel and whether or not you can make it through school.  Told him to take his temp with the thermometer that was in his first aid kit when he got back to dorm (No fever yeah!).  Maybe now he actually knows what he has in there although he was standing in the kitchen with me when I packed it and telling him what was in there.
Was thinking we are going to have to do the same and have labs at the health center, his last infusion was Oct. 30th next is December 11th so I don't know if having labs over Thanksgiving break will give us good info.


----------



## crohnsinct

They are hysterical aren't they.  They can study and ace college bio, philosophy etc but when it comes to basic life skills?! :yfrown:

I always prefer labs at infusion this way you have the most accurate info at their lowest Remicade point.  So much so that I am willing to pay the OON costs to do it:shifty-t:  Does his campus med center have a lab?  They tend to be  really reasonably priced...that is if he could remember to turn his body 90 degrees and actually walk in.


----------



## Maya142

:lol: Jacqui, tell him that if he gets the flu, he will be missing a LOT more than one day of classes. My nephew, who is also in college, skipped the flu shot last year because he "never gets the flu." Famous last words! He got the flu and was so sick that he missed 3 weeks of classes.

College classes move very quickly and as Jack will find out, missing even one day is tough to catch up from. 2-3 weeks and it becomes VERY difficult - my nephew had a horrible time catching up and actually had to withdraw from a class, because he just couldn't get caught up.

Remember, this was a healthy kiddo - not one on Remicade. With Jack, he's likely to get sicker and could develop complications like pneumonia. And it may mean a Crohn's flare.

College students are definitely tough - they know everything, until something goes wrong! Then they want Mom to magically fix it .


----------



## Jmrogers4

They do, He goes to school at the "med school" for the state it's where they have PA program, pharmaceutical etc. so yes full lab. It is literally the next building to his dorm.
He just registered for classes next semester and I had to laugh at what he signed up for and told him just maybe he should ease back a little. He signed up for Bio 202, Chem, Applied Calculus and Mandarin Chinese (I talked him into dropping the Mandarin Chinese at least for this semester since he doesn't need that for his degree and taking a "fun" class- B.S in Biology with a concentration in biomedical science- What?! :yfaint: Stresses me out just thinking about it.


----------



## pdx

Your new GI doc sounds great, CIC, and it's wonderful that he was willing to fit O in over Thanksgiving.  What's her Remi dose right now?


----------



## crohnsinct

You would think I would know!  But alas I don't have access to her portal anymore because in the eyes of the law she is all grown up.  I am in the process now of coaxing her to fill out the necessary paperwork to get me access or at least get her to look up the info I want.  

But I think she was around 6mg/kg so there is lots of room to go up but the issue is more that she has symptoms all the way through the interval so that points more toward losing response.  If it was a dose issue, she would feel good for at least a few days after infusion then start to slide.  Unless the dose is so pathetically low that it never works. Which if new GI is right and she needs a remi level of 10, could be the case.  

She also stopped mtx back in late spring so maybe that has something to do with it? 

OR SHE HAS IBS:ylol2:


----------



## Jmrogers4

So she is fairly near base dosage but I guess I would think there would be less symptoms if not complete relief at least around infusion time. 
Jack just gave me his password cause it was easier that way,  he knows I'll keep pestering him with questions. 
Hope you get answers and I’m glad she is coming home for thanksgiving do you don't have to wait longer or have to fly out and take charge. 
Sample some of that California wine in the meantime to make the time pass


----------



## crohnsinct

LOL JM!  Don't you know I moved to Northern CA near Napa and Sonoma and then the wild fires hit.  What a cruel, cruel twist of fate.  But there are still plenty to see.  It is my civic duty to spend my money supporting that devastated region.  Is there no end to my giving? 

True text convo: 

O: Mom can you deposit money on my dining card
Me: what's in it for me?
O: I will make you dinner when I come home 
Me: nah
O: Unpack boxes, paint? 
Me: nah
O: then what? 
Me: user name and password 
O: I will get a job


----------



## my little penguin

That's funny cic
Way too funny


----------



## Maya142

:lol: CIC she is really going to drive you nuts over these next 4 years. It's a good thing you moved to wine country!


----------



## pdx

My daughter went off mtx last year and flared a few months afterwards. When we tested her levels during her flare, her Remi levels were low, and she also had low but detectable levels of antibodies. Her doctor put her back on mtx and upped her Remi dose, and now she's back in remission, with good Remicade levels and no detectable antibodies. Hope that it works for your daughter too!


----------



## kimmidwife

This new doctor sounds amazing! I hope you get some time to tour around. That part of California is gorgeous.
Keep us posted on how it goes.


----------



## Jmrogers4

:rof:
Love that area I have a cousin in Santa Rosa (he was about a mile from evacuation zone) and my younger son goes down there every spring break for a rugby trip.
Jack's reasoning if I'm looking he doesn't have to thus making his life easier.


----------



## crohnsinct

Happy Thanksgiving to all our friends in the USA!  

O came home from school.  She started her prednisone taper.  Down 5mg per week.  She looked great.  Energetic.  Chatty etc.  A few days into her first taper down she started having to run to the bathroom urgently but we chalked it up to a one off.  

She had an appointment with new GI yesterday, who said she looks anemic.  He palpated her abdomen and he said she guarded and winced when he got to her ileum.  He said he thinks she has pretty active ileal disease. Ileal involvement is relatively new for her.  Previously just entire colon and rectum and stomach.   

His initial plan was to let old GI handle steroid taper and add Uceris and try to tighten up her Remicade schedule.  No Rowasa because of the dorm issues.  However, after the exam and further detective work, O admits still going frequently and urgent about half the time and painful TI area. 

So new plan is his handles everything.  She is to report how taper goes and we will probably increase her back up to get her through the end of finals.  Remicade every 4 weeks for the next threee months until she is well healed.  Then we slowly try to move it out.  

It is possible that she is losing response but he wants to give it every shot we can before we switch therapies.  Interestingly enough, he also really wants her on monotherapy so no adding an immunomodulator. 

O woke up this morning bleeding.  So she will let him know tomorrow and I fully expect she will go back up on steroid level.  Bummer that she couldn't get past the first taper.  Bummer that this is all happening within 4 weeks of last infusion.  Bummer she goes back to school tomorrow.  

Have to say it is awkward switching GI's in the middle of a flare.


----------



## Maya142

What was the reason for monotherapy?? Just curious, since combination therapy seems pretty common now.

Really hope he can get O feeling better ASAP :ghug:. It is so hard to send them away to school flaring - I hate doing it and my daughter is only an hour away.


----------



## kimmidwife

I second Maya. Why didn’t he want to try adding methotrexate or something?
I hope he can get her flare under control quickly. It is hard when her school is so far away.


----------



## crohnsinct

Put O on the plane back to school last Friday.  Leaving her on that TSA line was quite possibly the hardest thing I have ever done.  How does a mom walk away from their flaring kid? 

But she is back at school now and reportedly doing pretty o.k..  

New GI has decided to move her to 10mg/kg every 4 weeks (far cry from the 6mg/kg every 8 weeks eh) and reassess in 3 months.  Based on her "all good" reports, he is letting the steroid taper continue.  We will be pulling blood and stool labs every 4 weeks. 

I am curious to see if this is a levels issue or a loss of response.  If levels I would think that at least the first few days after infusion she would see symptoms improve.  But maybe not if there is that much less Remicade.   

Come on Remicade!  

I didn't get a chance to ask why the monotherapy. I do know he is big on minimizing drug burden and she was having these symptoms even on MTX last fall and winter so maybe those two things had something to do with it.  But I will definitely ask when I see him next with T.  

Will keep y'all posted.


----------



## Jmrogers4

So tough letting them go in the best of circumstances much less when they are not 100%.  Hoping the increased dosage and frequency does the trick for her. (and feeling good before finals).
Keeping my fingers and toes crossed for her XXXX


----------



## Tesscorm

Have you considered a round of EEN?  It's what kickstarted her remission last time with remicade...  but, of course, EEN would be much tougher being away at school...


----------



## crohnsinct

Oh* I* considered it alright!  Even went so far as to suggest it.  She balked.  First it was the logistics.  No car on campus.  Going to the market to buy cans of formula and get them back to dorm.  I offered to buy them on Amazon and have them shipped and then there was the "how will I get them from mail room to dorm room.  In the end I think the bigger issue is the stress of finals, long hours etc...she is just going to want to eat her comfort foods etc.  I sort of don't blame her.  

I wish she had a longer break but her break is only 4 weeks long.  Three of those weeks she is back east visiting friends and family and the other week travelling to CA and then back to school.  So I am afraid it would even be difficult then.  

She got down to 10mg of prednisone and symptoms kicked up a bit.  GI asked her to go back to 15mg for another week and try to taper after that.  

He also said maintenance therapy will take some time to get momentum. Bummer.


----------



## crohnsinct

Hey y'all.  As promised, I got that monotherapy (Remicade only no Methotrexate) answer. 

He said it all comes down to pharmacogenetics. This simply means the way people process and respond to a drug. He said years ago they only dosed standard doses of Remicade. 5 mg/kg. But what they learned was people metabolized it differently. So there were sharp peaks and valleys of drug in their systems. The goal is to keep the drug somewhat steady and lasting the whole interval. The peaks and valleys are bad and the valleys will cause antibodies to form. They found that adding methotrexate helped increase the amount of time that Remicade stayed in the body, keeping things more even. So yes, methotrexate helps with antibodies but not because of anything in Methotrexate as much as what it does for the Remicade. 

Now they know so much more about drug level monitoring and optimal dosing etc. There are wide ranges of doses and various intervals. They also know that colonic disease usually requires more drug and that active inflammation sops of the drug more quickly. High dose and short intervals doesn't necessarily mean that your disease is worse it just means your body is processing the drug very quickly. 

Now the theory and it has been proven in many studies (which btw he is sending me), is if you maintain drug level properly you will prevent antibodies. So if you are doing this well, you do not need the Methotrexate and with pediatric patients why burden the body with more drug. With teen girls why take the added risk with possible pregnancy and with teens in general why take the risk with alcohol? 

I told him about a boy I know who months after dropping mtx started building antibodies.  He asked drug level and I told him zero.  He said that's the problem.  The GI dropped Remicade but then didn't properly dose and monitor the Remicade.

I am quite pleased with this GI's vigilance.  I do have a good amount of guilt over O's case.  Her old GI was clearly not dosing her enough.  We had been telling him about issues for two years.  Who knew there were docs like this out there who would listen. Oh well.  The past is in the past.  Onward and upward.   

O is now in her last week of prednisone at 5 mg a day. I imagine next week will be every other day or at least that is what she has done in the past.  

She got her first infusion at 10mg and it actually worked out to more like 6 weeks with insurance, scheduling issues.  So now it is just a waiting game.  

She is currently travelling and I will see her on Christmas and travel with her for two weeks then back to school she goes.  She had a great semester even with the IBD, fractured wrist etc.


----------



## pdx

That is very interesting and makes sense to me. When we added mtx back into my daughter's treatment, we measured Remicade levels soon after, and the mtx did cause the Remicade levels to go up.  

I think it is still not known what is better for long-term health: higher dose Remicade alone or lower dose Remicade + mtx. Certainly the second choice is cheaper, given the high cost of biologics. But as you said, the first choice is better if there is a chance of pregnancy or alcohol use.


----------



## kimmidwife

That is really interesting and I can totally understand about the risks of methotrexate thanks for sharing his answer!


----------



## Maya142

I think it also depends on what EIMs your kiddo has. For example, if you have a child with arthritis as well as IBD, then keeping them on MTX would make a lot of sense since it will help control the arthritis as well as the IBD.

My older daughter had good Humira levels when they were last tested - some time in the summer I think (she was on weekly Humira then). But every time she tried to wean MTX, her joints flared.

Same with my younger one - whenever we tried to take her off an immunomodulator in the past, her arthritis flared. She really does need both.

I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.

That said, my older daughter tries to wean herself off MTX pretty much yearly - especially in college when  "everyone drinks!" (according to her anyway).


----------



## Farmwife

crohnsinct said:


> But what they learned was people metabolized it differently. So there were sharp peaks and valleys of drug in their systems. The goal is to keep the drug somewhat steady and lasting the whole interval.


This was the reason for the every 2 weeks of Remicade for Grace. This is what the rheumatologist believes. I was sceptical at first if the ever two weeks would work but Grace seems to be improving slowly.


----------



## Jmrogers4

Don't have much to add on the mtx since it wasn't an option for Jack when he started remicade but we have certainly played with interval and dosage with Jack, we seemed to have hit on a good regime for him right now although he was just saying he would love to move out to every 8 weeks but I think he is in such a good spot I'm reluctant to rock any boats.
Enjoy your time with O.  Merry Christmas, Happy Hannakah and all :


----------



## pdx

Maya142 said:


> I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.


Great point. My daughter developed Remicade-induced psoriasis after she dropped mtx, and it's mostly gone now that she's back on mtx.


----------



## crohnsinct

Forgot to mention (that's to the pm'er for reminding me). O's FCP came back normal.  Lab didn't report an actual number but normal works for me...for now.  Also labs from infusion all normal.  So looks like steroids did their thing and hopefully Remicade keeps her there.


----------



## kimmidwife

That is great news!!!!!


----------



## crohnsinct

Oops!  Sorry.  Fecal calprotectin was NOT normal.  It was actually closer to 1500.  This was after 5 weeks of steroids and 6 weeks out from last infusion.  O must have read the portal wrong. Blood labs were normal though and you all know how much I love those. 

She was only home for 2 days.  Traveling visiting family and friends the rest of the time.  But we caught up with her out east for some of it. 

She went back to school on Monday with lots of weird goings on.  GI thinks she may have steroid induced adrenal insufficiency.  Put her back on steroids.  She also is going to the bathroom a lot and has some bleeding.  Second higher dose and 4 week infusion is this Friday.  Hoping it kicks in soon.  

I think the plan is to wait another infusion cycle to determine if she is losing response or not.  GI mentioned possible scopes.  No clue when those might be unless he has an extra long scope that will reach across the country not likely anytime soon:ylol2:


----------



## Pilgrim

Well.....darn. How is she even going to be able to study like that?


----------



## crohnsinct

You got me!  She went to the bathroom 18 times on Monday.  She's stubborn...takes after her father


----------



## Farmwife

I'm so sorry she's still going thru hardship. :ghug:




crohnsinct said:


> You got me!  She went to the bathroom 18 times on Monday.  She's stubborn...takes after her father


And because I can't let a comment like that go by....... 

Ya, :shifty: her father:yfrown:


----------



## Maya142

Poor O!! 18 times!! That's insane . Really hope her infusion puts a stop to that.


----------



## Jmrogers4

18 times! had she already started class? I don't know how they do it.


----------



## crohnsinct

Started class yesterday.  According to her she is fine!  

I have gotten way more texts about a sorority rush event tonight and what she should wear and how she looks and accessories than I ever have about her Crohn's.  The kid actually woke up early, finished a 6 minute video project and ran downtown to shop for a skirt because the one she ordered didn't arrive in time.  She showered, saved her legs (sorry boys), did her nails and is ready to go to class.  Gets out of class at 4:45, event is at 5!  

But she can't seem to find time to walk "clear across campus" to get her hat and poop jars from the lab.  PRIORITIES MOM! :ybatty:

Fecal ca supplies weren't the only casualty of the day...she also put off buying her books:ylol:


----------



## Jmrogers4

Total priorities!  Have I told you about the flu shot he was supposed to get at school from the place he literally walks by 5-6 times a day!  I did bring him when he was home on break took a total of 10 minutes which I commented to him about how quickly they can do them.  His comment "yeah, but to be honest it wouldn't of happened"  Not because he didn't know it was important just not a priority for him UGH!!!
Does she text you pictures of outfits?  Jack will send me a snapchat asking if "this goes together"


----------



## kimmidwife

Wow! That is amazing that she is still functioning and living despite going through all this.


----------



## crohnsinct

Jmrogers4: that is so flippin adorable!  I expect it from girls but too cute when a boy asks his mom! 

Farmwife: yeah I knew you would appreciate that.  I slipped another one into a different thread just for you. 

Tomorrow is C diff test, FCP, blood labs and infusion....hopefully O worked her way over to that terribly inconvenient medical center to pick up her Remicade! But LOL, jokes on her.  The school lab only processes FCP samples Mon - Wed and she missed the Wed cut off so now she has to wake up super early to catch an uber to drop off her sample clear across town so she could get back in time for her 9 a.m. class.  No time to do it after as she has infusion.  Hopefully she has learned her lesson!


----------



## CarolinAlaska

Wow!  Sshe is one strong, determined girl!!  Is she having much pain?


----------



## crohnsinct

So O got her second infusion on the new plan last Monday.  

Her fecal calprotectin came back at >2500.  Some labs are falling and the velocity has picked up. 

Still on steroids.  Now at 10 mg.  GI says his priority is to get her off steroids but he is going to do that very slowly. 

He also says we need to give the new dosing about 3-4 months to take affect and until her levels are optimized he would expect cal pro values greater than 1000.  

He did say that in cases like this he likes to see the kids monthly but her distance is complicating that. 

She was in med center Monday watching her for possible pneumonia or flu.


----------



## Pilgrim

Is there such thing as collaborative care or a GI who could provide proxy care, or telemedicine with current GI?


----------



## crohnsinct

There is but there really are no doctors near her school.  Nearest decent GI is 2 hours away and that wouldn't be a problem IF she had a way to get there....guess who is getting a car for her birthday....that or a transfer to a west coast school!


----------



## Jmrogers4

Oh I hope flu/pneumonia doesn't rear its ugly head and further complicate matters and that new schedule works wonders and it's just a matter of allowing more time.


----------



## Pilgrim

I vote transfer. She is way too far away from her GI and family support. She sounds too stubborn to do that though!


----------



## crohnsinct

Haha she says I should transfer there!


----------



## my little penguin

Transfer to the doc 
Much easier 
Even. If it’s working th a few hours 
Then she can get seen like the doc wants 
Hugs


----------



## Maya142

I vote transfer closer to home . I'm pretty sure she won't listen but you can tell her the committee has voted!

And maybe tell T that when the time comes, she should choose a college that is driving distance from her GI!


----------



## crohnsinct

Good news! Looks like O just had some weird virus thing as she got better throughout the week. 

Don't ask me how her Crohn's is, I have sworn off asking since GI is set on waiting another few months.  Ignorance is bliss! 

T has a four day weekend coming up so we are going to fly out there to see O. Otherwise, we wouldn't see her until mid May because she is going away for spring break.  

O actually asked us to come down.  She has even asked if she could stay with us in the hotel for the three nights we are there. Nice how she saved me the trouble of asking her!:thumright:

I will let her know the forum consensus on the transfer! :shifty-t:


----------



## crohnsinct

Well, we saw O last week.  She looks good.  Tired but good.  She was going to the bathroom about 10 times when she was with us so I imagine a bit more than that over an entire day.  But no blood so we are making progress.  Tapering to next level of steroids starts tonight.  

She was supposed to have her infusion tomorrow but once again her flaky home infusion nurse can't make it.  They had to reschedule to Thursday.  I texted her that I was miffed at him and that I recently read that a delay of as little as four days for infusions could risk falling out of remission.  

Her response? 

"well then, good thing I am not in remission". 

LMAO!  The kid has an answer for everything!  Oh yeah and she vetoed the committee vote to have her transfer. She wants to stay another year.  But we did get her to concede that she would miss some of her her spring break trip to come home and have scopes IF the GI asks her nicely AND IF he agrees to do it on a Monday to Friday so she could either fly home later in the week OR come home and then meet her friends after scopes.  This was actually a committee members suggestion! I let her think she came up with it. :shifty:


----------



## pdx

Glad you got to see her, and I hope the steroid taper goes well.


----------



## crohnsinct

Hey y'all!  Just wanted to let you know it looks like we have recaptured response to Remicade!  

O's latest FCP is <16!  We have never seen anything this low ever!  As a matter of fact, T accused her of using someone else's poop!  

The GI said this could be due to steroids and the increase in IFX.  He said the situation is still tenuous and we will continue to get calpro every 4 weeks. 

I am good with this and in the spirit of all we always say, we are enjoying the good for now!


----------



## Jmrogers4

oh fantastic! hoping it continues on through many more fcp


----------



## Pilgrim

That is the best news!


----------



## pdx

That's a great number! And I always like hearing stories of recapturing Remicade.


----------



## crohnsinct

O's next cal pro result just in. 38!  We are one step further away from cautiously optimistic and one step closer to remission!


----------



## my little penguin

:dance: 

Love  it !!!!


----------



## pdx

That is so great!


----------



## Maya142

Wonderful news :dance:!!!


----------



## Jelly loves Peanut butter

Great news!  Hope your daughter continues to do well!


----------



## Pilgrim

I didn't think those numbers were even really possible for kids with Crohn's! You must be relieved!


----------



## my little penguin

Pilgrim 
My kiddo has been less than 15 more than a few times
Once in remission very possible


----------



## Maya142

Mine has been down to 26 or so. I don't think she has gone down to <16 but that's the goal. But she has mild Crohn's. 

But crohnsinct's daughter has severe Crohn's and she has gone down all the way to <16 so it is possible!!

Pilgrim, VEO IBD does tend to be aggressive, but the goal should be as low as possible. Especially now that there are treatments like biologics.

Our GI said she used to want kids with IBD to have FCP under 300-350 when they were just beginning to use biologics. That used to be considered excellent. 

Now she aims for <50 because there are much better treatments, tests to optimize them (levels and antibody tests) and more treatment options (different kinds of biologics for example).


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## crohnsinct

Pilgrim...us to!  O has had disease for 6 years and T for three and we have never been below 160's and often over 1,000.  

Maya is correct on all counts.  A couple of other things to remember.  Young children naturally have higher fecal cal pro.  Older people to...like 65 and older I think.  But not as high as H can get.  I think they just mean a little higher like in the hundreds.  

It is amazing how changing to this doc got O to this point.  We dealt with cal pro in the 500's for two years.  T also.  IDK if it is the change in docs or that they just know more now.  Either way I am a fan.


----------



## crohnsinct

Well in the category of it was good while it lasted...O's next FCP just came in and it is 786.  The funny thing is I feel bad for the GI.  Poor little guy thought he licked this thing.  Was planning to discuss de escalation at the next infusion.  I feel like I am going to have to console him.  

Don't ask me what the plan is.  She is already at a little more than 10 mg/kg.  Maybe add back in Methotrexate?  She hates it.  Maybe switch to Humira or Stelara?  

Her appointment and infusion is 5/14.  I will let you all know what he says.  I go to get her next week!


----------



## my little penguin

Humira takes 3-5 months to work 
Using steroids as bridge 
Painful shots as least for a bit 

Stelara takes 6 months to work 
Steriods as a bridge 
Shot every 8 weeks 
90 mg 
But Ds needed every 4 weeks 
Shot does not hurt


----------



## Maya142

Humira shots might be painful for a while...as far as I know, they are only releasing the new formulation for pediatric patients first and O is over 18, right? She may get the new formulation since she's with a pediatric GI but also might not.

Plus, besides the initial press release, I haven't heard any more about it, though I REALLY hope AbbVie is releasing it, because it's been out in Europe for a couple years now I think. 

I think MTX is worth trying if she is willing to do it. It will mean no drinking - not sure she does drink, but if she does, then her doc should have a serious talk with her about it before putting her on MTX.

That said, my older one, S, drank in college on MTX. In fact, still does drink though much less now that she has grown up (thank goodness!). Always had perfect liver enzymes.

I know she hated the pills, but what about the shot? It is basically painless. Just a quick poke - the medication does not hurt. 

Humira - the health center could do it for her if she wanted. They could also do Stelara. We considered setting that up for my older daughter because there was a time she hated doing her own shots because they burned so much. But when she got to college, she decided it was much less work to just do it herself.

With the loading dose, my daughter took 2 months to respond, the second time she was on it. But she also started with weekly Humira (since we knew she'd need it, based on her first trial of Humira) and with an immunomodulator.

The first time it took 6 whole months to work after we had added MTX and made it weekly.

I'm so sorry to hear her FCP has gone up .


----------



## pdx

So sorry. Glad that the school year is over soon. Will she be home for the summer? 

My vote would be for adding mtx before changing meds entirely. My daughter responded quickly when we added it back. (She might end up being on it anyway, even if she does switch biologics.)


----------



## crohnsinct

I am sure she drinks on occasion.  Not a lot because she is a self proclaimed swim and study nerd but I know she goes to parties and she has drank.  If mtx is brought up I will let the GI hammer that point home.  

Mtx will also mean birth control.  This GI is a stickler about that and doesn't take abstinence for an answer (with the college age girls). 

She HATED mtx and honestly it didn't do much for her IBD in the past but she also was at a lower dose of IFX so maybe it will be just the boost she needs. 

I am not sure suggesting EEN is even an option because she was on steroids and they got her to remission and then she went right back up.  

She is coming home for the summer so we have 14 weeks to get this sorted out.


----------



## Maya142

Oh yes, both my girls got the speech about birth control. Younger one was put on it because of menstrual issues when she was quite young, but my older one's rheumatologist suggested it when she went to college.

We had no issues at all with birth control. It really helped my younger daughter's cramps, which were debilitating and it made her period more regular (until she became severely underweight). It also made her period lighter which was good because she is always anemic anyway.

For my older daughter has also said it helped her cramps, which were pretty bad too.

For the Pill, she will have to take it at the same time every day...speaking of compliance . No issue for my girls because they already take meds several times a day so it was just added on.

But the app mentioned on another thread, Pillboxie, might help if she is put on it.

I am surprised this GI mandates it - I know all docs talk about it when girls are put on drugs like MTX and some suggest it, but I have never heard of a doctor insisting on it. What if a family is opposed for religious reasons? No MTX?

There is also a risk of blood clots with the pill and there is a risk of blood clot with Crohn's....for us it was worth it because both my girls had such bad cramps, but if they did not, I don't know if we would have agreed to it. I would expect the doctor to trust my daughters...


----------



## crohnsinct

Well he mentioned it in general discussion so I imagine there is some room for discussion.  But yeah, he had a college aged boy on mtx who was pledging a fraternity and there was quite the discussion about "are you drinking?  tell the truth".  It ended with, "you know what?  You only have one liver and I can't take that chance.  We are dropping mtx. o.k.?"  The kid agreed happily. 

No app will help O take her meds.  She is a ridiculously smart and responsible kid with everything but taking meds. That alert would go off, she would be in the middle of something and silence it with every intention of taking it.  Then go about her day forgetting all about her pill.  I think it is like you mentioned in the other thread.  If the consequences are immediate then they are more apt to take them.  But with Crohn's the consequences aren't always immediate.  Plus with mtx she is actually rewarded for forgetting because then she doesn't feel like crap. 

Well, I will have her home for 14 weeks so maybe we can get her into a good habit and find a good time to take the mtx.  

The thing to remember is our family has bad livers and O had chronically low abc on mtx so not sure he would opt for it again.  

What a cliff hanger!


----------



## Maya142

So maybe Humira or Stelara is a better option then. Especially since she would have be compliant with many things while on MTX - the birth control, not drinking and actually taking the MTX!!

Maybe Stelara would be best for compliance since it would clear up her psoriasis! I'm sure being less itchy and uncomfortable will somewhat of an incentive.

We were very tough on compliance. My older daughter had a brief period of "I'm not taking my meds." It was MTX she was objecting to, since it made her nauseous and tired the next day. We checked with her doctor, but she had tried dropping MTX earlier and flared immediately, so her rheumatologist was really quite concerned about permanent joint damage.

So we said, if you're not old enough to be trusted to take your meds, you can't be away from home. You'll have to come home from college next semester. 

That led to some spectacular fights, but we could not compromise on her joints. However, we did work with her and with her rheumatologist to come up with some compromise to make her feel better - her rheumatologist lowered the dose of MTX a bit and allowed her more Zofran. She also said if it was only a few drinks each week, S could drink as long as her liver numbers stayed within the normal range.

It is so difficult once they are over 18. They are technically adults, but really they're still kids in many ways. And as my daughters like to say, the prefrontal cortex (the decision making center) is developing till about age 26 - that is why they make bad decisions.

It was a hard situation and we really did debate letting her figure out the hard way that she really needed MTX. But we already had one child whose disease had become extremely aggressive when she was under-treated for just a few months. And permanent joint damage would have meant permanent pain. We just could not risk all that...

I am still not sure what would have been the right decision - to force her to take MTX or to let her make her own decisions and then deal with the consequences. I'm not sure there is a single "right" decision...


----------



## crohnsinct

She was on Mtx for over a year with little issue.  She always said that a day or two after she felt like she was hit by a truck, nauseous and got migraines. But she always went to school, track practice etc so we never did anything about it.  Then at about the two year mark she really started complaining.  Then just the thought of taking the meds made her sick because of the anticipation of being sick.  The GI gave her Zofran.  She took it three different times and vomitted violently.  We think there was something in Zofran that didn't sit well with her.  Maybe an artificial sweetener because she also drank Diet Coke once and had the same reaction.  Sugarless gum = same reaction.  So we just stay away from artificial sweeteners. 

She kept trying to take the mtx but would always vomit afterward.  Soon this extended to all pills.  And she was taking pills with no problem for years before this. 

She had to stop Mtx for her hip surgery and loved it.  Then when it was time to go back on the GI said she didn't have to.  He didn't even have to be convinced.  Just said, "yeah you have been on it long enough and it causes problems with WBC so let's just stop".  I personally think it would be better if he referred her to psychologist for some coping skills but we were leaving soon anyway so I dropped it.  

Even on the Mtx her Crohn's was flaring so I had little reason to push the issue as it clearly wasn't helping.  Although it did help the psoriasis a bit. Maybe now with a higher dose of IFX the MTX will help.  It will be interesting to hear the new GI's take on things. Maybe he will just wait to see what her next FCP is.  She will be handing one in at the 5/14 appointment/infusion. Maybe it will magically come down like her sisters. 

We had that same chat about being responsible with meds or come home from college but honestly her only med right now it Remicade and that is easy compliance wise for her.  She actually would even do suppositories and enemas over pills with no push back.  It is simply the remembering and stopping her busy exiting life that is the issue....but I am also awful at remembering so I guess she got that gene from me. 

I am hoping before he suggests Mtx that he will pull a level and antibody test.  Depending on those results it might be a moot point.


----------



## Jelly loves Peanut butter

Hope your daughter is feeling better soon.


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## Maya142

Maybe if she goes back on MTX, she could do the shots or take the pills while on FaceTime?? Then you know she's done it and that way she can't possibly forget!!!


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## crohnsinct

LOL Maya!  Great idea!  She is going to love you:thumright:

Now I just have to remember to face time here


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## Jmrogers4

UGH!! So much easier when they are under our own roofs and you can see and monitor  While I know Jack has had an occasional sip here and there he actually hates the taste of alcohol.  I know he goes to parties and I get to hear the stories of how he beats everyone at beer pong because he drinks water while they get progressively more drunk and easier to beat.  Friends love it because he is always the DD.
I would be for changing over the summer while she is home so at least you can monitor for a while and while it might not be fully working by the time she goes back to school hopefully she would be on the upswing.
1 more week until Jack comes home!  Can't wait. (we'll see how I feel when he is home, I may want to send him right back to school)


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## crohnsinct

O had infusion today.  Dose was brought down to 7.5mg/kg because of an outbreak of EBV in our area.  

GI wasn't very worried about her status.  Said she is a B+ but we need to get her to A.  In November she was a C.  

New plan is to increase Ifx to 15mg/kg every 4 weeks.  As soon as we get normal calpro two times, move out to every 6 weeks.  Also trying a two week course of Cipro/Flagyl to treat SIBO but he said it also balanced the micro biome and is helpful with colonic inflammation.  He is hoping this will be the bump she needs to get Ifx to work. 

He will not add a thiopurine and doesn't want to add Mtx because her WBC's go chronically low on that.  

No labs done today.  IDK why. I also didn't ask about scopes.  I hang my head in shame for I have failed the forum.


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## crohnsinct

Leave it to O! 

She got a last minute offer to work for an organization that runs mission trips for middle and high schoolers.  It is an 11 week assignment.  No clue where she will be placed but somewhere in the US.  Her and two other college kids will host 100-150 teens per week and lead them in worship and work around the areas they serve.  She will work 24/6. Leaves Memorial Day and will work all the way up until she goes back to school.  

We were all concerned about her health status and if this was a good idea and decided she needed to discuss with GI first.  

GI approved it.  However, she will now be on prednisone for about a month (with a taper schedule) and then switch over to Uceris.  She will start to taper Uceris once she is back at school. She is stopping the flagyl/cipro combo as it wasn't really helping anyway. 

Yeah, I know, using steroids so she can go off on this adventure is a band aid but this is what happens when your kid is legally an adult and the GI comes up with a plan that lets them do what they want. :voodoo: The big plus in O's book is that the prednisone will make her feel a lot better. 

They keep her location a secret until they are done with their two week training.  They are assigned their groups the last day of training and only find out their location when they turn on the pre loaded GPS!  BUT she is due for her first infusion the day she gets there!  So I will find out location ahead and I get to scour the area for an infusion center and set up the logistics!  The fun never stops! :ytongue:


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## Jmrogers4

How exciting for her, but man the stress on Momma.

At least she discussed with GI first I don't know that Jack would have done that.  He's an I'll figure it out and make it work kind of guy.  Which stresses me out to no end.  Did I mention he is due for infusion next week?  Has he switched it back here?  What I get from him - "Don't worry about it, I'll take care of it."

Hope it's smooth sailing for her and she has a fantastic summer.  Excited to hear where she gets to go.


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## pdx

This story stresses me out but totally inspires me too. You have one tough kid, and she never seems to let her Crohn's hold her back.


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## crohnsinct

I debated letting you think that O was actually mature enough to call the doc on her own but alas NOPE!  She subscribes to Jack's theory as well.  Her dada and I told her the only way we could support this was if the GI approved.  

S for Jack and switching infusion....IDK about your insurance but ours will only authorize one infusion provider at a time.  So when switching the old provider has to release their auth and the new provider has to request a new auth.  It always makes me nervous because with each new auth request we run the risk of them questioning things but so far it has worked out.  

I mention this only because all of this takes time and if Jack hasn't started the process yet, it could delay his infusion.  

Good thing they are adults and we don't have to worry about them anymore


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## Pilgrim

What an adventure! Go O! She's inspiring us as well as the mission kids.


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## Jmrogers4

Luckily enough same provider (OptionCare) and be still my beating mom heart he actually did call yesterday! and is set for 30th.  Should be the 29th but with labor day and all.... He will be back at the infusion center for the summer instead of home health.

Starts his full time 40 hour a week job for the summer today!  As he said this morning when he had to get up after 2 weeks of sleeping all hours.  Adulting is hard!  I just laughed as I was making his lunch for him thinking just you wait.


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## Farmwife

OMW.......
I feel for ya, CIC.
We had an Evangelist mentioned a few years from now my son would be able to travel and help him during the summers. 
I thought that was great until I pictured the offer made to Grace. 
Don't think this mama could handle that right now. Lol
(of course if she could I would let her but...... I'd follow them thru out  the US ).


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## Lynda Lynda

After reading this I am gonna quit my whining.


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## kimmidwife

Been offline for a bit so just catching up on things. That is exciting news about her mission trip. Hope all goes smoothly for her. Keep us posted!


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## Lynda Lynda

These kids are amazing.


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## Tesscorm

Very exciting for O!  It's amazing that she doesn't hold back at all!  Maybe she'll be posted nearby and it'll be a bit of a relief for you knowing she's not too far away???


Jacqui -_ "Don't worry about it, I'll take care of it."_....  that made me smile!  OMG, I hear that from S all the time!  :ack:  I bite my tongue, pray and hope for the best!  :lol:


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## crohnsinct

Hey y'all!  

After training in Colorado, O was assigned to Texas.  She has been there about three weeks now and has had one infusion.  She is extremely happy with the work she is doing.  Her last labs came back and blood looked good and fecal cal is 24!  I know, she is on prednisone but nice to see anyway.  Insurance denied Uceris so not quite sure what we will do with prednisone taper (she is down to 10mg this week)  Peg it and pray maybe?  

She is still going to the bathroom A LOT with lots of mucus.  Given the good fcp, GI is thinking either the taper is causing issues OR she has IBS with the lack of sleep, physical work and loads of stress.


----------



## crohnsinct

Hey y'all (yes, O has rubbed off on me), 

Well four weeks after the last cal-pro and about a week off steroids, O's cal-pro returned at 154.  We didn't change anything. 

Four weeks after that in August, her cal-pro was back down to 24.  Weird but we will take it. 

The problem now is she is going to the bathroom at least 18 times a day.  All relatively formed, lots of mucus and lots of urgency.  

I moved her into college and it was a nightmare watching her go so much and so urgently so I wrote to the GI. 

Basically here is what he said, paraphrased of course: 

- 40-50% patients who have IBD have co-occurring IBS. This is because their microbiota changes, and they are more prone to external stressors to cause diarrhea (e.g., sleep, stress, diet change, etc). Or their neurological connection between the gut and brain has re-wired (this is reversible) to make them more sensitive to signals that make them think it’s time to go. 

- O's disease has a history during the past years of not being in perfect control. So if she is dealing with IBS it is likely worse than if she had a year or so of deep remission.  

- While the 24 is really encouraging, we don’t want to assume something didn’t change because a flare can be an immediate switch and could have started after the last cal-pro was taken. 

- given the good cal-pro results O had started taking a probiotic (Florastor) thinking her issue was IBS but things got worse.  He said, that in the most recent literature they are saying probiotics can make things worse because in some patients with IBS there can be an over growth of bacteria in the small bowel.  So in these cases they recommend taking Florastor because it is a fungus/probiotic rather than the traditional bacterial probiotic. Good fungus can modulate gut bacteria.   

- LOW FODMAP diet can help with symptoms because it slows intestinal transit time allowing the intestines and colon to absorb more water leading to less diarrhea and bloating. 

After discussing everything we all decided that since she is not bleeding (a hallmark symptom for O) and she hasn't lost weight to let her keep taking the Florastor with the thinking that she had inflammation for so long that it was probably going to take a very long time to rebalance her gut.  

We are also going to wait and see what her next cal-pro (being taken next week) results are.  If it is elevated then we will lean toward IBD disease activity and reassess.  If it returns normal again, then we will have more evidence that what she is dealing with is IBS.  If her symptoms are still bothersome, she will give the low FODMAP diet a go. 

I know we are loathe to accept an IBS dx around here and I totally agree that at initial dx we have to push and push to make absolutely sure that the kids are dealing with IBS but in this case I think we are being careful and all signs sorta lead to IBS.  

Can I also just say that IBS is just as frustrating as IBD.  Actually it has been way more bothersome to O than any IBD flare.  But the great news is as frustrating as IBS is, it does not cause damage so all least there is that. 

I hope this synopsis helps someone out there.  Stay tuned for the next cal-pro results. She has been normal two months in a row in the spring and then she went up to 800 so.....


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## Jmrogers4

Is it wrong to hope for IBS and new probiotic works and she has a fantastic year. Crossing fingers and toes  for O.


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## my little penguin

Can you change to a different probiotic?
I know your doc likes florestar but since she is still going 18 times a day 
If your on the ibs train 
Maybe try vsl#3
You only need a prescription if your taking one packet At 900 billon
OTC packets are 450 billons 
Just saying 
Makes a huge difference for ds 
Drastically reduced diarrhea


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## crohnsinct

Thanks MLP!  DS takes it for Crohn's though right?  I know VSL was studied for proctosigmoiditis (which O does have) and crohn's and UC in general and some people swear by it.  But, it seems since we are treating IBS for now that our doc likes Florastor because of the fungal issues.  I will ask him about VSL for IBS though...I am interested.  

She has only been on it a little over a week.  She reported today that bathroom trips are down a bit so maybe it is helping.  Maybe the stress of all the travel and the start of school etc had subsided.  Maybe she is telling me what I want to hear.  

Quite honestly, I have only bought a one way ticket on the IBS train.  It is going to take a few more normal cal pro's before I buy the round trip ticket.


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## my little penguin

He takes his for Crohns 
But BIg BUT his GI doesn’t call it ibs even with normal fecal cal or scopes 
His thoughts are ibs has no organic cause 

Crohns has an organic cause and they are learning new things daily on it 
Even in the very recent past 
Pull up John F Kennedy Jr and colitis 

It’s amazing what they “thought “ was true at that time 
And how they “ treated “
The equipment alone used for sigmoid “scope”
Crazy but not that long ago 

Vsl #3 hasn’t been useful in Crohns studies 
But has worked for ds 
We stopped it thinking it was doing nothing 
Yep diarrhea started and slowly increased 
Restarted it and wow diarrhea stopped except around biologics injection days 
So for ds it’s doing something 

https://www.theatlantic.com/magazine/archive/2002/12/the-medical-ordeals-of-jfk/305572/


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## Maya142

M is in a very similar situation to your daughter CIC - pretty clean scopes but has continued to have diarrhea on and off. Her GI believes it is IBS and you can have IBS with IBD. She also talked about the brain gut connection and nerves getting re-wired as well as studies that have shown that kids with IBD have different gut bacteria, even when they are in remission, and some research suggests that this dysbiosis can cause symptoms.

I have also found that after reading studies on adult IBD patients, that many IBD patients continue to have symptoms even after they are in remission (confirmed by scopes, biopsies and imaging). You can call this IBS or consider it part of IBD...I think the fact is that many people continue to have symptoms once the inflammation is gone. Whether this is due to nerves re-wiring or dysbiosis or something else (stress, lack of sleep, certain foods), it seems to be fairly common.

M is going to have an MRE to rule out small bowel disease, but I'm pretty sure it's going to be clean. 

So we are trying VSL #3 right now. She has been on VSL #3 for about two weeks now and thinks it is making her Gastroparesis worse - it is causing bloating and nausea and some cramping. She is going to see if it improves, but she currently still has diarrhea on and off (had about 7 BMs today - all diarrhea, but yesterday she had 2 BMs that were normal :ybatty. I will ask about Floraster if VSL #3 does not work for her.

Our GI only insists on VSL#3 after CDiff but otherwise she says other probiotics are fine.


----------



## crohnsinct

O's last calpro taken on 8/31 just returned and it is 129.  Not high enough to definitely put her symptoms down to IBD but not low enough to definitivly put her symptoms down to IBS. She also says she is "fine" but I think we all know that O's version of fine and ours are two different things. 

So for now, we are treading in muddy waters until the next Calpro which will be next Friday and ironically I will be there for parents weekend so I will have a better idea on symptoms.


----------



## crohnsinct

Next calpro posted and it is 246.  Still not terribly high given her history and her colonic disease (although never had MRE, pill cam etc).  Plus it has almost doubled from the last time.  

I saw her last weekend.  She looked o.k..  Maybe a little thin but she swears her clothes fit her fine.  Down to going to the bathroom maybe 12 times a day. Tired but it was homecoming weekend.  

GI released the result to the portal with no message to her so I am assuming he is good with it.  Maybe given the high degree of variability he feels it is best to wait another 4 weeks to get another value.


----------



## my little penguin

Never an MRE 
Or pill cam seriously ???
Regardless of numbers
She needs monitored 
Crohns inflammation patterns change and shift in kids 
That’s


----------



## pdx

Glad you got to see her! I think you should push for a scope and MRE when she next comes home (at Christmas?)


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## crohnsinct

Thanks guys.  I think I will ask.  Yes,  she comes home for Christmas but is only home for three weeks.  This GI just took a position in research so is only in clinic once a week.  He barely scoped as it was I bet getting one now would be even harder. But he doesn't have to do MRE so maybe.....


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## pdx

I bet he wouldn't need to do the scope himself. E's doctor has never been the one to do hers...


----------



## my little penguin

Yeah that 
8scopes plus
Ds GI only has done 3 
Get a scope and MRE 
Crohns requires diligent monitoring 
Fecal cal is not enough


----------



## crohnsinct

I am not sure about that.  We are new here and it seems like the IBD center is a one man show.  It is a little freaky if you as me.  For such a well respected major teaching hospital.  ALL IBD cases/suspected IBD cases go to him.  There are other GI's but they deal with other issues.  I imagine they can scope but will they know what to look for etc?  I have read over and over that the endoscopy is only as good as the person doing them.  So you really want someone who does them for your condition.  Worth asking though.  I am actually thinking about transitioning her to an adult doc at the adult hospital.


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## pdx

The good thing is that there's a long time until December, so I would think that your doctor's calendar should be pretty open right now, even if he's only in clinic one day a week. Or the office may have other options, given how infrequently he's available.

At the time that E was diagnosed, our entire health system (Kaiser) had only one part-time pediatric GI in Portland. (Now they have two full-time, which is much better.) When E needed an urgent scope back when she was first being diagnosed, Kaiser contracted it out to have it done at the local children's hospital, by a pediatric GI there. So maybe you will have options like that.

Switching to an adult GI might not be a bad idea either, if you can find someone you like.


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## crohnsinct

Hmmm interesting about Kaiser.  Thanks for the info.  We are new to the west coast and my oldest daughter will be falling off our insurance soon and her job doesn't provide a health plan but rather a stipend and Kaiser is the most affordable for a young college grad.  The smaller network concerned me but glad to here they are reasonable. 

She has an appointment in clinic and she has two more cal pro's so I think with the next one if still elevated I will start rattling the cage.


----------



## my little penguin

Crohnsinct even if the fecal cal isn’t elevated she needs a scope and MRE
These are standard monitoring 
And all Crohns patients need to have an MRE 
Especially those dx as kids 
Over 10 years from dx the patterns of inflammation change in kids 

Add in they never bothered to even look in her small intestine by MRE is baffling 
It’s not like she has a contrast allergy (Ds does abd GI still insisted on it which meant hospitalization)
She needs proper monitoring 
Scope and MRE


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## Maya142

I definitely agree - it's bizarre that they never looked at her small bowel. M had a SBFT before being diagnosed and then an MRE after being diagnosed. Since then, she has had 2 more SBFTs (our GI is old school), 2 more MREs and 1 pillcam.

I would definitely push for scopes and an MRE. Our GI likes to scope every 2 years, though if the kiddo is doing REALLY well, she is willing to push it to 3 years. I think M has had 4 colonoscopies in 5 years and the longest we have gone in between scopes was 2 years.

Given she has been flaring for so long, I would also want a scope to check how her colon in doing and whether there is scar tissue - especially since the disease recently spread to her small bowel.

It does also bother me that it's a 1 man GI practice for IBD and the one GI is only in clinic one day a week. You don't want O's care compromised because the doctor does not have time to do a scope. Switching to adult care is definitely worth thinking about.


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## crohnsinct

I think I might have been a little misleading.  O had a scope in March of her senior year.  So it has only been a year and a half so far.  Maybe new guy just wanted to the new treatment a chance? 

But not misleading you on the small bowel look see. Nada, nothing, zip.  Nothing by her original doc, not the second opinion doc, not the CA guru and not this new guy.  :shifty-t:


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## Tesscorm

CIC, I’m with the others on scopes and MRE. S is hvg his third scope w his adult GI next month, third in 6 years. Plus the one he had at ped hospital, a year bfr being transferred to adult GI. Adult GI did first scopewhen S started w him, another scope after being on remi for approx one year and, at last apptmt (aug 2017), GI said it was time to schedule a NonUrgent MRE (which has 1+ year wait) - this one coming up.  Plus he’s had at least 2 MREs in between. And this is all while being in remission!

She needs some imaging/scope...  GI needs a baseline, if for no other reason, to see how treatment is progressing.  Come on...  get out those vice grips and push for this. 

Btw, at our hospital, it’s S’s GI who has done his scopes thus far...


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## pdx

crohnsinct said:


> Hmmm interesting about Kaiser.  Thanks for the info.  We are new to the west coast and my oldest daughter will be falling off our insurance soon and her job doesn't provide a health plan but rather a stipend and Kaiser is the most affordable for a young college grad.  The smaller network concerned me but glad to here they are reasonable.


I've got nothing but good things to say about Kaiser, both the Northwest group and the Northern California group. I grew up with Kaiser coverage in Oregon, and then had Norcal Kaiser coverage for several years when I lived in Sacramento, including during the years when both my kids were born. We've been back with Northwest Kaiser for the past 13 years, and--full disclosure--my husband has been a Kaiser physician for the last 9 years. 

Feel free to PM me if you have specific questions, but I'll say that we've found Kaiser great for both everyday preventative care and for E's IBD care.


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## my little penguin

So here is the other thing 
Have you ever ASKED for an MRE for her ???
Some doctors don’t do
MRE unless the patients ask 
Or since your Dd is an Adult 
If she expressed she didn’t ever want an MRE 
To any of her GI even as a kid ?
They sometimes won’t unless absolutely necessary if the adult patient or older teen is against IT


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## Maya142

Oh yes - this is true. O would need to be on-board for the MRE. And honestly, I would just ask about both things - a scope and an MRE. I think often doctors forget - they don't carry all the pieces of someone's history in their head. I bet your GI has just forgotten she has never had an MRE/pillcam/SBFT and there is no harm in reminding him that she hasn't had a scope that recently either.

Asking him is the best way to remind him -If he's the only IBD physician at Stanford, then he is sure to be overworked!!! We do that all the time - simply ask whether an MRI/MRE would be appropriate given M's symptoms, whatever they are. I always tell my daughters that asking is the only way to make sure you don't fall through the cracks and that they absolutely have to advocate for themselves.

Perhaps we over-test, but I figure it's better to over-test than under-test...


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## crohnsinct

Yep!  Asked dx'ing doc over and over again about small bowel imaging and was told not needed which is weird because at dx he did an MRE with T.  She was dx'd three years after O so I figured he finally got with the program.  I asked about O and was told not needed.  At dx, no inflammation in TI.  Three years later disease found in TI.  I asked...should we look further and nope! 

Then second opinion doc at BCH said, "nah, not necessary".  

Ca Guru didn't even think her symptoms and elevated cal pro (500's at the time) were even IBD much less agree with scoping or MRE.  Three months after she saw him she was put on steroids to control her flare.  

She has been with new guy for a year.  He is the first doc who even agreed her IBD wasn't controlled. I asked when we first met him.  At the time, she was obviously flaring so he said, "not necessary we know what we will find".   Because she is in college and rarely home, almost every time she does come home she lets him know way ahead of time in case he wants to schedule any testing and he never bites.  She has even offered to miss a spring break trip to come home and have testing.  

To say I am frustrated is an under statement.  Especially given the only time she has perfectly normal cal pro is on steroids or within a month or two of coming off them.  Think I will get out that vice!  Already researching adult GI's but given we have been fluffed off by three pediatric GI's only to have her end up chasing a flare her entire freshman year of college and finally found one who is trying to help her, I am hesitant to change.   I would move her care to where she goes to school but the only "GI docs" are two primary care docs who treat GI disorders and a GI surgeon who also does scopes.  Not one dedicated GI specialist!  How is it that whole area doesn't have one GI?  She could drive two hours to nearest city if we are desperate.  

Don't get me wrong though.  We really like our doc and he is pretty brilliant and well respected.  Just don't get the lack of imaging/scopes.


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## crohnsinct

Well would you look at that!  O pulled the same trick her sister did.  Her most recent calpro just returned at 58. Ohs almost never this low without steroids. Down from 2-3 consecutive climbing results the most recent being 246....and with no medical intervention what so ever.  

So IF she is still going to the bathroom as urgently as she was when I saw her parents weekend then I am going to accept the IBS diagnosis and encourage her to try the low FODMAP diet.


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## Maya142

It's so odd - I sort of understand that rationale when she only had colonic disease. But now she definitely has some small bowel involvement. So why doesn't the doc want to know WHERE all she has disease, how bad it is and how much (if any!) scar tissue there is??

I feel like I have lost even more faith in FCP. If it is SO variable, what's the point? What's to say that you (and by you, I mean O) won't get a 300 next month :ybatty:?


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## crohnsinct

Yeah I hear ya Maya...I am guessing that's why we pul it so frequently...watching for trends and consistency?  He still isn't claiming she is in deep, solid remission.  He is more in the cautiously optimistic camp right now I think.  

I will be asking him about imaging when she see's him in December:/


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## Maya142

Fingers and toes crossed. I hope by the time scopes come around, she is in deep remission!!! I would expect to see consistently low FCPs for several months before that happens.


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## kimmidwife

I really hope he agrees th imaging fingers crossed for her!!!!!


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## pdx

Yes, definitely ask for imaging. As you know, E has also had 2 calprotectin results in the 200's over the past few months, but no other symptoms at all, and also a clear MRE last spring and consistently low ESR and CRP. Scopes were scheduled for two weeks from now. She was up all night last night with pain and vomiting; took her to the ED today thinking maybe appendicitis, but nope, it's just stupid Crohn's. CT scan showed inflamed intestines and lots of free fluid, just like she had 4 years ago right after diagnosis. She's being admitted to the hospital right now. I'll update later when we know more...


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## crohnsinct

Oh no!  Your poor girl!  Yes!  Please keep us posted.  We will be praying for her. 

Yikes!  I guess with her known small bowel disease 200's is just too high for her.  Ugh!  Live and learn I guess. 

I hope they fid the culprit and it is easily taken care of.   

With O though, as far as we know, most of her disease is colonic and now her calpro is 58 and perfectly normal so highly doubt anyone will go looking for anything.  Although, I guess an argument could be made to scope to make sure treatment is working but it has only been 1 1/2 years since her last scopes.


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## Maya142

Oh pdx, I'm so sorry to hear that. She sounds like my daughter - 200 means active disease for her too (but hers isn't as bad as poor E's). It seems like small bowel disease is a whole different ballgame from colonic disease...And GIs don't seem to pay enough attention to that :ybatty:.


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## my little penguin

Crohnsinct unless you have had imaging /pillcam 
You have no idea what in the many FEET of small bowel for O 
No matter how you look at it 
Imaging is a required test and standard at dx for children 
Once that imaging is done 
Then you have a reference point and can truly say her disease is colonic only in nature 

Pdx wishing your Dd the best 
Hoping things improve quickly and you have short stay


----------



## Maya142

Yes - it is absolutely standard to do an MRE or some sort of small bowel imaging at dx. We did an MRE and a SBFT at dx. Then about a year after dx. we did a pillcam because M had pain.

I can understand that at dx, she was so, so sick that you couldn't do those tests. But I'm really shocked that her GI didn't do an MRE after her TI became involved.

Even if you do not do scopes this winter, I would really push for small bowel imaging. Though I think scopes at 1.5 years are not unreasonable, in a kid whose FC has gone up and down so much and who is known to have severe disease.


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## crohnsinct

Maya142 said:


> It's so odd - I feel like I have lost even more faith in FCP. If it is SO variable, what's the point? What's to say that you (and by you, I mean O) won't get a 300 next month :ybatty:?


Maya you are a witch!  O's last calpro taken last week is 296! 

She came home for Thanksgiving and had some bathroom issues (accident and sometimes going 6 times in 90 minutes) but other times was rather o.k..  No blood or diarrhea (her hallmark symptoms) so I was still buying the IBS/SIBO/Candida theories.  She also had a very bad skin infection which I am thinking is fungus because she had been dx'd with a fungal infection on her legs that has never cleared and now it is all over her body and looks very similar.  

Sent GI a note about skin hoping he could get her in to derm when she is home next and about her bathroom issues and asking if he could definitively test her for SIBO and if we could see nutritionist for guidelines on low FODMAP for IBS etc.  

He responded that it might be time to switch drug class.  But I think it was more because of her skin than anything else.  

His suggestion is Entyvio.  I am not totally on board with that.  I feel like we should definitely have small bowel imaging before accepting Entyvio (more success with UC and Crohn's confined to colon).  Also, not thrilled switching drug class for cosmetic skin issues....that is IF we are SURE Remicade is working. 

Just frustrated with calpro...after what happened with PDX's girl and now O's up and down results...just ugh!  

Next appointment end of December.


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## pdx

Hugs--that's a lot to have going on, especially when everything's happening long distance.

I know I sound like a broken record, but I would want small bowel imaging and scopes at this point. Yes, maybe she's dealing with IBS or SIBO or food intolerances, but the more obvious answer is a Crohn's flare, so I would want to rule out inflammation before the other things. 

I'm glad you got to see her at Thanksgiving!


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## Maya142

I guess I jinxed it!! That's crazy - I completely forgot that I wrote that. Maybe I'll tell my daughters, so they'll think I'm cool for a nanosecond .

This is very frustrating. FCP really seems to be unreliable. I wish he would just go in and scope her and figure out what the heck is going on :ybatty:.


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## Maya142

I agree with pdx - I would definitely want imaging done at this point - both an MRE and scopes!! And a pillcam (if we're lucky  ).

I feel like I'm writing my Christmas list :lol:!! 

Dear Santa, I would like scopes, an MRE and a pillcam done on O, no bill from insurance and perhaps a couple bottles of wine. Thanks:thumright:


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## my little penguin

Add me to the list 
She needs scopes /MRE /pillcam 
Switching is scary 
But she is having such a hard time for so long 
Meds can work and not be running to the bathroom

Can be an added bonus


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## Maya142

Yes, this poor kid has been at this for years!! She deserves a break!!!


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## crohnsinct

Update: 

O Continues to go at least a dozen times a day.  Needs to go in the most inconvenient places and at the most inconvenient times. Urgent. Accidents. 

Met new derm who isn't sure her psoriasis is Remicade induced and says she is afraid we are looking at psoriasis that IS controlled with Remicade.  She has 70% of her body affected and it is bad.  Dermatology wants her to switch to Humira or Stelara. 

Gi is not 100% convinced psoriasis is not Remicade induced.  

Feels it could be getting worse because Remicade is "wearing off" so maybe we have a good check engine indicator light? 

He did tell me that sometimes it isn't that Remicade is wearing off as much as Remicade is changing.  He said because it is a large molecule drug it will change from time to time and sometimes these subtle changes will cause it not to work as well for some patients. 

He is going back and forth on what to do with her and perplexed.  

At first he wanted to move to Entyvio for her IBD and give her Humira for her psoriasis.  Apparently with Entyvio it is o.k.. to be on two biologics. Stelara isn't an option for her IBD because he said it doesn't work well for colonic disease and especially not successful with rectal disease and her rectal disease is tough.   

However, he still feels that there is a chance the skin is Remicade induced AND that her symptoms are IBS or rectal inflammation.  So he feels better to try to keep Remicade at current dose and treat the rectal inflammation with Uceris and rectal steroid suppositories.  She told him she tried foam before and it was a bust.  He said foam has a tendency to cause spasmodic colon.  If this doesn't work then we move to the antibiotics to try to rebalance her gut flora.  

He didn't want to load her with more Remicade.  Instead he said let the engine keep doing it's job and we can support it.  He is hoping the with the little bit of Uceris that gets systemically absorbed maybe the psoriasis will calm down.  

Yes, I am bummed that he is still throwing around IBS. More like I was looking in my purse for the vice! (Sorry newbies...old term around here...you can guess what we put in the vice).  

Yes, I am bummed that we aren't getting rid of her psoriasis. 

No, I didn't fight the imaging or scope fight.  Trying to let O do the talking but also just beaten down as he is the 4th doc to say IBS and at times her cal pro is normal so I have to accept IBS at times plays a roll and at least he is trying to treat the rectum. Plus I am just getting over the flu and didn't have it in me.  

O has to get better at taking her vit D and fish oil. Vit D is low at 28.  GI says it is good for skin.  That's funny, derm didn't say anything.   

Hoping the rectal suppositories do the trick.  Insurance already denied Uceris so they have to file an appeal. Suppositories on back order.  

Plenty of people with proctosigmoiditis have to use rectal therapies in addition to their maintenance meds so I am not surprised.  Just frustrated because for 4 years Remicade handled it all. 

Oh yeah and when he palpated her abdomen she had pain in one area and he said, "yeah...that's your rectum"...so tell me how is that IBS?! :yrolleyes: 

OH!  One last pearl for you all.  I mentioned not wanting to drop Remicade unless we were 100% sure because of difficulty going back on.  He said that now they show that if you stay off it for a year, you can usually restart it without allergic reactions.  Thought that was interesting.


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## my little penguin

Seriously  
Poor poor O
That’s ridiculous to keep her on remicade 
Humira can and DOES work for Crohns 
Plus skin 

Stelara also work for CROHNS AND PSORIASIS 
Including the rectal inflammation 

Ds uses both for skin/crohns /rectum issues 

Now has been on Stelara for over a year 

That whole thing stinks
She needs a scope and MRE /pill cam


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## crohnsinct

Yeah, as I typed that update I thought, "why didn't I think to ask, why Humira AND Entyvio...if Humira works for both diseases couldn't we just use that?".  

IDK about his reluctance to use Stelara with her IBD but this is the second time he quickly shot me down with it.  Maybe just his experiences haven't been good. 

Of course the best thing would be if the suppositories work for the rectal inflammation.  Then maybe they will stop saying IBS and she can keep Remicade which seems to be working everywhere else and just use the suppositories to supplement.  But this doesn't address the skin which is on fire right now.  She got stronger topicals so maybe that will help.


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## Maya142

We were told the same thing about Entyvio - they are actually even doing trials with it plus an anti-TNF. And there is at least one member on the forum (who posts in the adult section) whom I think is on that exact combination...can't remember her name now but I'll look.

M was put on Entyvio while on Cosentyx. It did seem to address her GI symptoms - actually, fairly fast though her GI had warned us it is a slow drug. But it caused bad joint pain for her.

M's GI was not a huge fan of Entyvio - says it works well in UC, but not Crohn's, especially ileal Crohn's. But M had mild enough ileocolonic Crohn's that she was willing to try it.


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## my little penguin

Our GI says the same on entivyio 
Won’t use it for Crohns kids only UC

Has had a few questionable results on Stelara for Crohns kids
Juvenile Arthritis even less Data 

That said Ds was on 90 mg every 8 weeks scoped 
Mild inflammation in TI
Increased to every 4 weeks 
And symptoms went away 
Both GI and joint issues 

We were told since Ds had been on anti tnf  for so long 
When it stops working in his case remicade /humira 
They like to give the body from anti tnf for a while since the body cross are used to it by then 

Ds aslo takes two biologics 
Currently 
Stelara for ibd and jia 
Other for Sweets Syndrome 

What I do know 
Is Stelara takes much longer to work than any other med Ds has been on 
Think close to a year 
And much higher dose /frequency to be effective for both Crohns and jia 

Fecal cal last week was 23.3 so everyone is happy 

Good luck


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## crohnsinct

I have heard the same about Entyvio.  But O has (or at least we think) all colonic disease that behaves exactly like UC.  I sweat if it weren't for the granulomas and the stomach ulcers and then much later the little bit of TI inflammation...she would have been dx'd with U.C..  My nephew has the exact same disease as O.  He got so, so ill.  Tried everything.  His last step was to be removing the coon but then Entyvio came out.  Same caveats were given to him...better for UC...takes a long time.  It has worked great for him.  Knock wood he has been in remission for years now, is happy and healthy.  So I guess it really just depends on each presentation and GI's experience etc.  Heck!  I really don't care what is next as long as something works!  

I really thought it was interesting that when O asked him what if we try Entyvio and/or Stelara and they fail that the GI said as long as you have had a one year break you can go back on Remicade.  She asked him what she would do for he year and said they have lots of tricks up their sleeves...tacro, tofacitinib, and rattled off a bunch more.  So seems like there are a lot more options than there used to be...drugs and ways of approaching the disease.  

Interesting that I read a lot on the adults section about the use of suppositories,enemas and foams for rectal disease but not many in the parents section use it.  Wonder why?  Maybe because if rectum is flaring usually everything else in the kids is to leading to more of a drug change rather than an add on? 

Would be interested to hear from any other parents of kids who just had a rebellious rectum.....although I know we can't be SURE that is all O has going on but her blood labs look great (no anemia), her weight is fine and she isn't bleeding so hopefully the suppositories do the trick.


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## Maya142

> Interesting that I read a lot on the adults section about the use of suppositories,enemas and foams for rectal disease but not many in the parents section use it. Wonder why? Maybe because if rectum is flaring usually everything else in the kids is to leading to more of a drug change rather than an add on?


My guess is that it's hard for kids to tolerate. At least, that is what we were told - some kids can handle it and other kids get REALLY upset if they have to use "bottom medicine" as our GI called it. She said teens in particular tend to be embarrassed about it and some little kids can get upset and really fight it. And if the child has fissures or perianal disease, using a suppository can be painful, so that's an additional factor.

As for Remicade, M was on it 3 times, as you know. First time was just for 3 months at a very low dose - so it did nothing. Then she was put on Enbrel for 5 months or so and that's when her Crohn's flared up. 

So 6 months after her first time using Remicade, we re-started it. No reaction and since she was finally put on a higher dose of Remicade both her gut and joints responded well. But that only worked for 8 months for her joints.

We had a break of 3-4 months (re-tried Humira in that time). Then M switched pediatric rheumatologists and the new one put her on "high dose Remicade" - up to 20 mg/kg every 4 weeks. That was her third time on Remicade and while it helped some, definitely not enough for either her gut or joints.

M was lucky enough not to react, that even though we didn't wait a year. The third time, we took extra precautions though - she got a pretty big dose of Solumedrol with every infusion for quite a while. And IV Benadryl.

Her antibody tests were always negative though.


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## Maya142

I want to add - my daughter has fissures that are considered related to Crohn's (vs. simply related to constipation). She was only on Entyvio a month to 6 weeks (not sure how long it lasts in the body), but in that time her fissures healed. They had not healed on Imuran - it had been months.

I can understand the doctor wanting to use Entyvio considering the UC-like disease. I'm surprised he does not want to try Stelara given the psoriasis, but it makes sense if it does not work well for colonic disease. Though I still wonder if it's worth a try.

In the worst case, if Entyvio doesn't work or Humira does not work, you could try Stelara in that year while you're waiting to re-introduce Remicade.


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## my little penguin

You can’t know colonic only disease if she has never had a pillcam or MRE 
That’s impossible to know
If you could just “know” by colonoscopy 
Then no one would ever need one
It’s part of the standard evaluation for Crohns at dx
Then used as needed later 
Without imaging you really don’t know anything


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## crohnsinct

Preach!  

Problem is we have now been to three GURU's.  Their original doc who is world renown, wrote the textbook they use for Pediatric IBD in med schools or fellowships or whatever.  Went to Boston and saw guru there, he concurred with original doc.  Then guru in San Fran said Crohn's is well controlled, she has IBS and he wouldn't even take her case. Yeah, 2 months later she was in a full on flare!   

I think the problem is original doc slapped an IBS dx on her and all his buddies won't go against it.  None of them even thought she needed to be scoped much less MRE!  This even though she had cal pro consistently 500's and was on occasion filling a toilet with blood. 

New guy was the only one who would listen.  Sed rate 42 and cal pro 1500.  He said, "No way it is IBS".  But when he gets her cal pro low and she still is going often he chalks it up to IBS and I sort of have to agree given she doesn't have any pain, nausea, not bleeding, not losing weight etc.  It is just when we are in this gray area that irks me.

I understand his aversion to scopes (he has sent me papers and such) but MRE's don't have near the risks of scopes. Just don't get him.  But she is o.k. so I will go along with it.  He is also at least trying something at this point.  

I bought the low FODMAP books from Monash U and Kate Scarlata's book.  I am waiting to start trying it though because I want to see if the suppositories work.  Can't change too much at once because then we won't know which one fixed it and my bets are on rectal meds.


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## Maya142

Yeah, it's like once you have an IBS label, that's the default explanation for any symptom ever...they only consider IBD if there's blood :ybatty:.

We have not had any serious issues due the IBS dx my daughter has - but we have had LOTS of issues with the amplified pain/functional pain/chronic pain/AMPS label. That means that any and all pain is considered to be "just" pain, and not pain that *could be* inflammation. It's like they forget that the child had an inflammatory disease in the first place!

We were told recently that my daughter's jaw pain was pain amplification. Well, she went steroids and 3 days later? No pain :yrolleyes::ymad:


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## crohnsinct

HA!  O started the steroid suppositories Friday night and is doing them twice a day and guess what...THEY WORK!  Brought her frequency down to 5-9 (the higher end is on days when she only gets one in).  Today was the best day at 3 times total!  The kid actually asked me if this is what normal people are like.  She had gotten so used to going numerous times a day that she had forgotten what normal is like.  Unreal!  

Her most recent cal pro (day after Christmas - before suppositories) came back and it is at 500 now.  I am really hoping that combined with the suppositories working is enough to convince the GI that her issues are not IBS!  

Not 100% sure of what the plan is going forward.  Long term suppositories?  Uceris? 

The GI sent me a screen shot of the appointment notes and he mentioned due to her being at college that we were going to cautiously use Remicade so as not to rock the boat.  I think he is reluctant to switch meds because "what if they don't work"?  She is far from home and at school and can't risk a full on flare with college.  She has been on prednisone too much this past year.  So if the decision is to switch meds, hopefully I can talk her into coming home for the summer and she can try then.


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## pdx

Glad that they are helping! And yes, that seems like a good sign that she is dealing with an IBD flare rather than just IBS--hope the doctor sees it the same way.


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## my little penguin

That pooor poor kiddo 
The steroids working proves A it’s nit IBS 
Which we knew 
And B she needs another med 
I get not wanting to rock the college boat 
But leaving her miserable with who knows what damage isn’t right either 
Add in dragging ones feet and staying on steroids till summer 
Puts her at higher risk of developing adrenal insufficiency 
Ask me how I know that one 
Btdt only with Arthritis meds and just kept adding steroids as a temporary fix
Now 1.5 years later after adrenal insufficiency do
We still hope his adrenal glands may wake up one day 
That whole “it can kill you “ thing without cortisol when you need it 
Big wake up call on steroid use and docs dragging their feeet for us 


Hope she gets scopes /imaging at the least soon 
And possible maintenance med change sooner than summer 
Ugh


----------



## crohnsinct

Well, she skipped her a.m. suppository today (early flight) and had a rubbish day.  Got home at 3pm and dose one right away....so I guess they really do work! 

Heard back from GI. Plan is: 

- keep up suppositories at twice daily check in in two weeks
- start Uceris as soon as approved - he is not concerned about steroids issues because so little is absorbed....yeah I know but hard to fight with a doc 
- reduce Remade to 7.5 every 4 weeks to see if it helps psoriasis - I questioned him up one side and down the other about this but he really feels that adding the Uceris and the suppositories will compensate for the reduced Remicade. 

If after some time of both Uceris and suppositories and a reduction of Remicade things aren't normal then add in antibiotics (Flagyl and Cipro) depending on f we are seeing symptoms without or with inflammation.  

Just tired. 

Really, really hoping she will come home in March and he will scope her but not looking good.  I think she is going on a service trip for one of her majors...Ugh!


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## my little penguin

So sorry CIC
Given She is an adult and not pushing the doc
Or taking time out to actually get checked (scoped)
Wow  
That’s all I can say is wow


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## happy

CIC
I so get how hard it is to get adult children to be assertive with their physicians and making sure they get timely care. My son had scopes in early October and at that time the doc game him several things to do including the full elimination phase of the FODMAPs diet. (He has been garlic and onion-free for over a year now.) 
Well as he has been feeling so awful the past few months, every test requires major energy to complete, plus coordinate the time off work. As he is also having lots of trouble with his tendons and his teeth he has also had to fit in many dental and physio appointments. So he would not return to the doc for follow-up until he had completed everything, including the diet. Meanwhile he continued to lose more weight, felt more fatigued, found it more difficult to get to his appointments, etc.  
After three weeks on the diet (and what a challenge it is to research, shop for and cook for) he is actually feeling a little better, but despite increasing his food intake, the weight loss continues. 
However, of course I am seen as 'nagging' when I explain it will take awhile to get in anyway and try to get him to call the doc. Of course I am the one he calls on the truly awful days when he doesn't think he can cope any longer.
They so desperately want to be 'normal' that they will put up with so much GI misery before seeking help. 
I hope the med situation gets sorted really soon for O, CIC. If only the docs could see how much our adult kids suffer in their daily lives.


----------



## pdx

CIC--I just was reading back through some of this thread, and I wanted to make one more suggestion about O's psoriasis. When E dropped mtx a few years ago, her psoriasis really flared, and then as soon as we added back the mtx, it went away completely. I know you mentioned that your doctor likes monotherapy, but I think it might be worth a try for the psoriasis. The mtx might also help with her IBD symptoms.


----------



## crohnsinct

Awwww PDX, you are so sweet!

We had added MTX for O's psoriasis.  She was on it for two years and unfortunately it didn't touch the psoriasis.  

Thanks for thinking of us though.  I actually think that might be a next step in her IBD treatment anyway before leaving Remicade.


----------



## pdx

crohnsinct said:


> We had added MTX for O's psoriasis.  She was on it for two years and unfortunately it didn't touch the psoriasis.


Oh, that's too bad.


----------



## Maya142

Wasn't O's psoriasis not as bad, back when she was on MTX? The worsening rash that she has on her legs, the one you thought was fungal but the derm thought was psoriasis - that's new, isn't it? 

And you said her scalp was really bad right now too. So maybe MTX was helping a little? Or is that wishful thinking?

I don't think there is any harm in trying it. If she doesn't like the pills, she could do the injections. It would have two purposes - to help with the psoriasis and hopefully, to help with the IBD by increasing Remicade trough levels etc.


----------



## Mountaineer01

As someone who was put on steroid medications for too long, I can say that they should only be used as a short-term fix. I was on hydrocortisone enemas and entocort for a few months. Worked great for a while, but over time they became less effective and I started having multiple side effects.


If the steroid meds are bringing her some relief, that's great, but you all need to be discussing a more long-term solution with her doctor. If she starts experiencing increased night sweats, restlessness, feelings of burning up inside, an unquenchable thirst, migranes, and/or trouble concentrating, she needs to be weaned off the steroids and put onto something else.


----------



## Tesscorm

No advice to add...  Sometimes, even if you have doubts, it's hard to battle the dr.  At least there's a plan but, and maybe I missed it??, is there an 'end date' when you/GI determine the remi and steroids just aren't doing it?

And so much harder when she's away... :hug:


----------



## crohnsinct

Hey y'all.  Been preoccupied with a project here but popping on to send a quick update. 

O's cal pro is now 670.  This was only a week or two after stopping suppositories and only 4 weeks after her last dose at 10mg/kg. She has since had her reduced dose of 7.5mg (at the same time as the cal pro test) so no clue what affect that will have.  She started her Budesonide after the cal pro was taken so also no clue what affect that will have but it kind of doesn't matter because she can't keep that up long tern.   

She isn't saying how she feels because she is now a foster mom to a puppy and on top of the world. 

GI is now saying his hunch is secondary loss of response due to a few factors (college life, stress, the drug just losing effectiveness over time, the body now upregulating other inflammatory pathways when TNF is blocked). 

She will not be going on her mission trip for spring break but will come home and see GI.  No mention of scopes but he did say we should discuss a switch to Entyvio or adding formal combo therapy.  I am guessing this means adding back in Mtx.  She HATED mtx so that isn't likely plus when all this started she was on Mtx already and it didn't make a difference. Her and I discussed possibly doing a course of EEN and she said she would do it if we thought it would make a difference but she has been on and off steroids so much the past year and it hasn't helped the Remicade kick in so she is feeling that EEN won't be worth the effort either and that what is going on is really more related to Remicade losing it's effectiveness.   

Will let you know what we all decide in mid March


----------



## my little penguin

Hard switching meds when they are no longer working
Btdt with humira
Especially when it worked for so long 
But staying in the same place isn’t really an option either 

Remember she has options

Cimizia
Simponi
Humira 
Stelara 
And 
Entivyio 

Lots compared to a few years ago where there was remicade 
And maybe humira

Good luck


----------



## pdx

Thanks for the update, and glad to hear that she's able to see her doctor soon. Hope that whatever changes you all decide on work well for her!


----------



## Maya142

I'm sorry to hear O is officially failing Remicade. It's good to know but I'm sure hard to hear. Losing a med is always scary . I agree with MLP though - there are many more options now. And according to M's GI, there are many in trials. She said there are IL23 p19 inhibitors that look really good. And JAK inhibitors (which are oral!!) are also looking pretty good. Xeljanz is already approved for UC. I know it didn't work in Crohn's but apparently there are others that do.

I REALLY hope her GI does scope her and also looks at her small bowel. I would definitely bring up both things when you see him. 

Really sorry she had to give up a trip. But she will feel a whole lot better once she's on a medication that actually works. Perhaps you can promise her a spring break trip in the future .


----------



## Jmrogers4

Wow CIC, I have been away for a while and thought I would pop in to see how everyone was doing.  Sorry to hear about remicade and spring break trip.  Here's to hoping the next med works better and longer than remicade!
9 more days till Spring break here and Jack will be home for the week, Yeah!


----------



## crohnsinct

O came home for spring break and doc appointments.  She is a mess.  Going to the bathroom every half hour if not more.  Bleeding, dehydrated, passed out on a train, lost 9 pounds.  

Saw GI today and she went to the bathroom 4 times in the hour and 15 minutes we were there.  He said she looks the most frail that he has seen her.  He thinks it is time we pull the plug on Remicade. At this point she is on Budesonide and still doing poorly so he doesn't even want to entertain adding in mtx.  He just wants to switch.  

Next step (assuming insurance approves it) will be Entyvio.  This doesn't help her psoriasis (if it is indeed not Remicade induced as the derm suspects).  We are to try Entyvio as mono therapy for a while.  If the psoriasis doesn't get better or worsens then we will add Stelara.  

GI chose Entyvio because her Crohn's really mimics UC and it is much more successful at colonic disease than Stelara.  Also, Entyvio has the best safety profiles and therefore is the easiest to combine with other biologics should we need to.  

It will take about 2-3 months to become effective so she needs to be on something else as bridge therapy.  She has been on steroids to much this past year so he wants her to go on Tacrolimus for a few months.  Lots of blood tests.  

She will do her last Remicade infusion Tuesday, drop Budesonide immediately and start Tacro tomorrow.  

That about does it for now.  She is to check in with him every 2 weeks. She leaves for school tomorrow...I hope she doesn't have to go to the bathroom when the "fasten seatbelt" light is on


----------



## crohnsinct

...and I want to scream.  Just got an email from the GI saying that as often as O goes during the day that it is weird that she isn't waking at night to go to the bathroom so he still thinks that there is some psychological/IBD component to her frequency.  I really want to scream.  Now I totally believe in IBS absent any other indication of inflammation BUT the kid has NO abdominal pain which is a hallmark symptom of IBS.  As a matter of fact, I think according to the ROME criteria it is hard to get an IBS dx without pain.  But also, she has cal pro of 670 and has gone over 2500, is bleeding and losing weight.  How the heck can he put any of this down to IBS?!  Oh well...at least he is changing her meds.  That is all I can ask for right?


----------



## Maya142

Well, I am REALLY REALLY glad he is changing her meds. I'm so relieved - your poor girl!!

I'm guessing he chose Tacro because it is used in UC sometimes, often just as a bridge until surgery. Given her colitis, that makes sense.

Did he not mention scopes though, to see how bad she is? I just don't understand how we will ever know how bad things look in there. What if she is close to a perforation or an obstruction or something very serious? He'll never know if it's "just bad" (which is bad enough) or "REALLY need surgery ASAP bad" and that could be serious. 

Personally, I think doctors put too much stock in the "waking up at night = IBD'' rule. There are exceptions to every rule, but I honestly think this is a silly rule in the first place. 
If you look at IBS forums, there are LOTS of patients who say they wake up at night to go to the bathroom. 

My own kiddo has often woken up at night to go to the bathroom -- even when her scopes have been clean. She does wake up more often if her IBD is flaring though. 

Really hope O feels better soon. We were told MUCH longer for Entyvio to work - our GI said it is a slow-acting medication. We were told 6 months, and our GI said they almost always had to use steroids with it as a bridge. 

M had two infusions of Entyvio. VERY easy infusions - really short compared to Remicade! I think the first one was given over 1 hour and the second one was 30 minutes!

As you know, M had a very rare reaction to it - drug induced lupus but apparently that is quite rare.

Fingers and toes crossed that Entyvio works for her!!


----------



## Porterck

I hope it all works out


----------



## pdx

crohnsinct said:


> ...and I want to scream.  Just got an email from the GI saying that as often as O goes during the day that it is weird that she isn't waking at night to go to the bathroom so he still thinks that there is some psychological/IBD component to her frequency.  I really want to scream.  Now I totally believe in IBS absent any other indication of inflammation BUT the kid has NO abdominal pain which is a hallmark symptom of IBS.  As a matter of fact, I think according to the ROME criteria it is hard to get an IBS dx without pain.  But also, she has cal pro of 670 and has gone over 2500, is bleeding and losing weight.  How the heck can he put any of this down to IBS?!


That is just crazy that he would say that. E has had flares where she has frequent bloody diarrhea during the day without waking up at night. Just because some kids wake at night during their flares doesn't mean that all do. I know that you've changed doctors in California once already, and that your current doctor is well-known, but have you considered another change? This current doctor has let O flare for more than a year with pretty band-aid level fixes. I'm guessing that you might not want to change now just as you're changing meds, but I agree with Maya that you should at least get some imaging/scopes done right now so that you know how bad things are internally. 

Really hope that Entyvio works well for her! :ghug:


----------



## my little penguin

Wow  
Glad she is getting med changes 
But without scopes /imaging 
Then when /if she switches 
No evidence of a true flare and others are left to read the docs comments on psychological ibs garbage 
Makes it harder to prove it was needed later
Scopes /imaging let you know where she is at now 
Abd not left wondering if the new meds are working enough
Later 
Never heard of not scoping with. Med changes. 
Wow


----------



## happy

Well, I bet if that doc had IBD he would have some psychological component to his bowel symptoms if he was suffering through what O has, especially if he were a university student living away from home as well!! What a stupid thing to say. Does he think he should not bother with investigating her IBD until O has figured out to make her psychological effects 'go away'! 

All of these young adults suffer terribly when their disease is active--so how can it not affect them in psychological ways. When my disease was active and extremely limiting my life, of course I had anxiety that made the symptoms worse--but the anxiety was not the cause--it was an effect of the IBD!

No wonder the kids don't want to go see the docs.


----------



## Maya142

> No evidence of a true flare and others are left to read the docs comments on psychological ibs garbage
> Makes it harder to prove it was needed later
> Scopes /imaging let you know where she is at now


That is actually a very good point - if you want to counter the IBS/psychological link, which is most certainly in her file, it would really help if you had scopes to see where the inflammation is, how bad it is etc.

Since she will be switching to an adult GI in a couple of years (if not sooner), you definitely want the whole IBS thing to go away. I really think once some GIs see the word "IBS," they automatically assume half the kiddo's symptoms are psychological.

It's absolutely ridiculous. Even if kids have some psychological component to their symptoms, so what??! That doesn't mean the IBD isn't there. It doesn't mean the IBD isn't flaring. It just means that the poor child is stressed out, perhaps because he/she is dealing with pain, diarrhea, dehydration, fatigue and is trying to manage college at the same time, often away from home...I mean, of course they're stressed out!! Their doctors aren't listening to them - that adds to stress too. 

My daughter gets so afraid that the doctor won't believe her when she reports pain that she dreads certain appointments . She goes, but she is so anxious before the appointment. She had NO mental health issues till she started having to live with debilitating pain . 

Thankfully now we have a good team of doctors in her case that BELIEVE her and that has reduced stress considerably. But what helped convince them that her issue was inflammation and not pain was imaging and blood work - the more hard evidence, the better.

Also helped to have her psychologist to talk to the doctors to help make them understand that the mental health symptoms are secondary to the pain and the diseases she lives with. I don't know if there is someone equivalent who could talk to O's GI??

Just a very frustrating situation :ybatty:. Poor O - she deserves better.


----------



## crohnsinct

Well this guy isn't biting on the scope/imaging idea one bit.  

It just cracks me up.  If this was any bit due to IBS then why when she is on steroids does she do so well?  Steroids don't treat IBS.  Also, remember when she was on those suppositories she was doing great.  Down to 4 or 5 BM's a day.  No urgency etc.  Pretty sure suppositories don't treat IBS.  

This is all just plain bull crap! And you are right Maya....the symptoms and accidents while having to deal with college really do cause stress so yeah, if there is any psychological component then it is caused by the disease.  Get the disease under control and the kid will be fine.  Just infuriating.


----------



## Maya142

> if there is any psychological component then it is caused by the disease. Get the disease under control and the kid will be fine. Just infuriating.


Exactly! Of course my kid is anxious - either she is in pain or afraid the pain will come back. But if we controlled the inflammation and then pain, she'd be fine!


----------



## crohnsinct

Well ask and you shall receive.....O woke up twice last night for diarrhea.  

She texted me today that she really doesn't feel well.  I asked her if it was Crohn's or nausea or what and she said she can't explain it just really feels bad.  

In addition to waking up twice for a BM she woke up at 3 and couldn't get back to sleep and had a major headache in the lower back other head.  Possibly the Tacro is affecting her?  Maybe she is just really anemic due to the flare or just feels rotten because of the flare?  I told her to write to GI and see what he says.  But she has only had two doses of the tacro so far...I wonder if it would affect her so fast?


----------



## crohnsinct

GI said 5% of patients metabolize Tacrolimus differently and has problems with it.  Thinks maybe O falls into this 5%.  He wants her to come off it for 48hours.  If she doesn't feel better in 24 hours let him know.  If she does feel better then keep the drug holiday another day and start back at 1 mg once a day and test levels at 3 days.  If she tolerates the once a day o.k. for a few days add in a nighttime dose and so on.  

He said there is some gene testing they could do to determine if she is not a candidate for Tacro but that has to be done at Stanford and he couldn't order it from any old regular lab.  

She feels awful. She doesn't want to go back on prednisone.  She is considering EEN but at college with the stress of finals coming up she doesn't think she could do it.  

I am waiting to hear from her tomorrow.  If she hasn't improved I think I will fly out to see her.


----------



## crohnsinct

O says she feels good.  Slept through the night.  No more headache or stomach pain.  Looks like the Tacro just didn't sit well with her.  She is skipping today and then tomorrow will slowly try to reintroduce it.  

She still has her regular Crohn's issues.  Last Remicade infusion is tomorrow but that does very little to help her anyway so I kind of feel like what's the point?  

Crisis averted, I'll be staying home.


----------



## my little penguin

Glad she is improving 
Hopefully she can handle the tacro slowly 
If not there is een and pred 
Less than ideal but ...


----------



## Jo-mom

Ditto - glad she is feeling better, one less thing to worry about, but we never stop worrying, do we?


----------



## Maya142

I'm so glad she's feeling better. I hope trying a lower dose of Tacro helps.

What part of EEN is difficult for her? Is it that she will have to drink shakes in front of her friends? Is it the idea of giving up food? 

Or is it that it's too much stress to force herself to drink them, while feeling unwell? I'm wondering that if we know what part of EEN stresses her out, then maybe we could come  up with some sort of solution.

Would she consider doing 80% EN and 20% food? It's better than no EN at all and often, it's just as successful.


----------



## crohnsinct

That's a good question Maya.  I will ask her tomorrow.  I think it is the no food thing because O doesn't typically care what she "looks" like to others.  She turns to food in times of stress (Like mother like daughter I guess) and with finals coming up I am thinking she feels like she needs her comfort foods.  

I just don't understand why she won't try.  She said she doesn't think she could do it.  So I used the same approach we used way back when she and her sister first did EEN...don't think of the 12 to 26 weeks...just see if you could do a day, then a week etc and at any time you want to pull the plug we will. I think if she were home with the support of her family encouraging her it would be different. man I wish she was coming home for the summer.  

Her Gi did ask her if she could do partial.  When she asked what that meant he said formula all day except she would get to eat dinner.  She crinkled her nose and opted for the Tacro. 

The thing is this "bridge" therapy has to be for 12-26 weeks and if she can't tolerate Tacro, another 26 weeks of prednisone isn't that appealing either.  She would be on a higher dose for 12 weeks and then a very slow taper.  

She is going to try the 1mg Tacro tomorrow.  If that goes well she will do two 1mg doses Friday and through the weekend then test levels Monday.  Fingers crossed.


----------



## my little penguin

If it’s snacking an Gi permits “dinner”
Calc what those amount of calories would be 
And make them snack/comfort food instead just for finals or as needed 
Finals are only 1-2 weeks tops 
Everything else formula 
Since nutrition is already occurring 
Ds still drinks 50% formula and rest food 
It’s how he feels best 
When he does een with a small percentage of food 
For him it’s not eating junk food (chips or tasting potatoes etc..)
So we used the your allowed x calories of solid food 
Since formula is complete nutrition 
We let him pick whatever 
Need not be healthy 
Fingers crossed she tolerates tacro


----------



## Pangolin

If drinking the shakes is just intolerable (and I can totally understand that), what about an NG tube? Might be worth it to give EEN a good shot to see if it helps.


----------



## crohnsinct

Thanks Pangolin but I tried that.  I think the issue is she just doesn't have the confidence in herself that she can give up the food or place the tube.  Pretty silly considering she has been flaring since she started college a year and half ago, has a 3.9 GPA and is going to swim nationals for the second time in a week or so.  Of course she can do anything she sets her mind to!  But I get that it is a lot longer than the last time.  Last time she only had to do 8 weeks and the thing that I think is killing it for her was the ridiculously slow intro of food.  

Took her 1mg Tacro for the day and so far so good.


----------



## Jo-mom

Wow!  Your daughter sounds like an amazing young woman and very strong.  Glad to hear the Tacro is going well so far.


----------



## crohnsinct

**WARNING CURVE AHEAD YOU MAY WANT TO EXIT NOW**

O started back on Tacro 1 mg once a day yesterday and today.  She feels good.  

Infusion yesterday.  She had labs and GI called her so waiting to hear what that is all about. 

But here is my rant....she went to a chiropractor for some muscular skeletal issue.  She had a great chiropractor in CT who really helped her when she was running.  Anyway, this a.m. she tells me that the chiropractic office said that they have multiple Crohn's patients and they say that it really helps their Crohn's.  

Now, I believe in chiropractic care and you know I am a crunchy granola natural type BUT come on people!  First, I don't not believe that they have a lot of Crohn's patients as I couldn't find a GI within 50 miles of that town so not buying it.  Second, Chiro helping with Crohn's....whatever!  

First appointment was just a lot of testing and such.  No adjustments.  She goes back next week for a consultation...dear lord I hope they don't rip her off.  

Any chiropractors out there who know what she should be looking for from a reputable provider?  

OK you can go back to your regularly scheduled lives.


----------



## Jo-mom

First off, I am happy to hear that your daughter is doing better.  I am also a crunchy granola person but I don't think chiro care helps crohn's and I am very open minded to alternative medicine/care.  Maybe it helps enteropathic arthritis which is from crohn's but not crohn's itself.  I just don't see it.


:thumleft:


----------



## Mountaineer01

The only way I can see chiropractic care helping is possibly with joint pain, which is a secondary effect of Crohn's. Was this the chiropractor him/herself or a staff member who told her this?

Just like gastroenterologists, all chiropractors aren't created equal. I suggest she look for another one.


----------



## crohnsinct

O's labs have posted.  

Her CRP is 45.5 reference range .5-4.9.  She is usually around .1 or .2.  Even last year when her calpro was >2500 she was only .5.  

HGb, RBC, Hematocrit and albumin all barely in normal and falling like a lead balloon.

Waiting for calpro....taking over under wagers.    

All this reinforces the decision to leave Remicade and I am hoping will stop the GI's talk of IBS.


----------



## Pangolin

Oh no! Sounds like some investigation needs to be done asap to figure out what's going on.


----------



## crohnsinct

Well this guy isn't big on scoping.  Last time I asked his response was, "well we know there is inflammation".  So now with declaring Remade a fail I am pretty sure his response will be the same. 

Calpro is back and it is now 800.  Not to much of a climb from 4 weeks ago when it was 690 but on Remicade it shouldn't have been climbing like that so yeah...I am totally bought in on Remicade being a fail. 

Repeat labs done yesterday and in the 4 days since her last labs her Hematocrit has dropped from 34.5 to 32.8 (ref range 34-46.6).  

HGB only dropped .1 to 11.2 and 11.1 is normal.  RBC's also only down .1 to 3.83 normal is 3.77.  

Platelets up 150 since last Thursday to 477 and normal is up to 379 so not to bad. 

Albumin holding steady at 3.7...normal is 3.5.  

Waiting to hear if her kidney function is good and she can go up on the Tacro. Really hoping she can because we have to do something to turn this trend around while we wait for insurance to approve Entyvio.


----------



## Tesscorm

I hope you get approval soon!!  

Maybe it's just as well that her GI doesn't scope now...  is there anything he can find that will change the course of action?  If not, might be more valuable to have a follow-up scope later to confirm Entyvio is working??


----------



## crohnsinct

Trudat Tesscorm.  I think you hit the nail on the head...he won't see anything that will change his mind so why take on the. risks.  But I actually don't think he will scope to know it is working either.  He really relies on calpro. 

The argument has been made here that even if he does scope later, how will he know if it is improved or what if he doesn't know what he started with?  Another argument is that Entyvio works better with colonic disease so that is why he picked it but she has never had imaging of the small bowel so we have no clue if she has disease there in which case Stelara would be better.  

I am just glad that we are making the switch.  It is time for this kid to start feeling better.


----------



## Tesscorm

I am surprised she's never had any imaging...  an MRE is certainly easier and less invasive than a scope and would still provide some info.  Unfortunately, we are stuck working with what the drs give us. :ymad:|

I can't say for certain (I've probably forgotten??) but, while a scope later on won't give you a comparison, perhaps it'll give a 'cleaner' result...  in that any inflammation won't obscure any scarring??  Just trying to find the silver lining!  :ack:

And, yes, she's been struggling for a long time...  time for things to change for the better!


----------



## Pangolin

This might be worth a try as a low risk option while you're waiting: https://www.crohnsforum.com/showthread.php?t=84261

I think it had a positive effect on my son's Crohn's.


----------



## crohnsinct

Thanks for the suggestion Pangolin...keep em coming! 

She tried metronidazole and something else last summer and it didn't help her at all.  I don't think it was azithromycin but now thatch is on Tacro she can't take Azithromycin.  

But I like your out of the box thinking! 

Waiting for Taco levels to come back before increasing dose.  Meanwhile she just keeps bleeding. Gi said kidney function is good so even if we don't get the levels they will probably increase dose Friday. This weekend is swim nationals so hopefully the little increase won't cause the same problems she had last week.


----------



## crohnsinct

Entyvio approved!  Am I the only person who loves dancing poop?  

Now just need insurance to find an infusion provider which given our experience will be even harder than getting the drug approved.


----------



## Jo-mom

Yay!  :dance::dance::dance:I love the dancing poop too!


----------



## my little penguin

Yipppeee!!!!


----------



## pdx

so glad the approval came through!


----------



## crohnsinct

Thanks guys!  Her trough levels of Tacro came back low at 1.9.  They need to be 6-8 so raising dose tonight to 2mg twice daily.  Fingers crossed she doesn't get sick again and that Tacro works it's magic!


----------



## my little penguin

Lots of well your way
:hang:


----------



## Jo-mom

Since she has been on low dose of Tacro and her body has adjusted, let's hope she doesn't react to the higher dose. It should be better than the first time, I think.  My fingers are also crossed.


----------



## Jelly loves Peanut butter

So happy to hear Entyvio was approved!  It’s so hard to wait and wonder.  Praying this brings healing for your daughter


----------



## crohnsinct

Hey y'all.  Just a quick update. 

O's last labs posted and it looks like even the 2mg twice daily of Tacro was able to stop the descent and actually turned things around a very little bit.  Kidney numbers are spot on.  Only thing happening is liver numbers are increasing rapidly but still barely in normal.  WBC is falling rapidly and blow normal.  

Taco levels should be back by next Monday.  Still waiting for her to tell us how her Crohn's symptoms are.  Entyvio next Tuesday.  Maybe once Entyvio is on board she can stay at this dose of Tacro and not go up?


----------



## Maya142

So no improvement in symptoms at all? 

Keeping my fingers and toes crossed that both Tacro and Entyvio kick in SOON!

How did O like the infusion? Much shorter than Remi - M couldn't believe it when they did  her second infusion in 30 minutes. Still took an hour at the hospital, to get it from the pharmacy and run saline, but it was WAY better than Remicade, which took 4 hours total at our hospital, typically.


----------



## crohnsinct

She hadn't reported back on symptoms yet but she now says that frequency and urgency are down. Also now blood is only on and off.  So all very encouraging....even though I know it is the taco doing it's thing.

LMAO...the GI said the goal is to get her down to 4 BM's daily and O said, "is that even human?"....these kids definitely have a warped sense of normal.    

Her first infusion is next Tuesday.  She is vey much looking forward to the short infusions, especially since we had to change nursing agencies and her "buddy" can no longer do her infusions.


----------



## Maya142

:lol: O is really just hilarious! Always makes me laugh out loud.

But I'm sad that she has had to live with this for so long that 4 BMs (which sounds like a lot to me!) seems completely alien and out of reach to her. Poor kiddo . 

I hope things will change a lot in the next few months - so much so that she thinks 4 BMs is a lot!


----------



## my little penguin

Wow 
O definitely needs some new meds. 
Hope they kick in soon for her


----------



## kimmidwife

Just catching up with things as I haven’t been on the forum in a while. Glad she is starting Entyvio. I hope it works quickly.


----------



## crohnsinct

Taco levels are back and only 3.2.  GI says that a patient like O usually needs a level of 6-8.  However, because 

- WBC's are low 
- liver numbers are up  
- O reacted poorly to the higher dose of 3mg twice daily
- HGB, albumin, hematocrit and symptoms have stabilized
- Entyvio is tomorrow

He is willing to let her stay at the 2mg twice daily and see how things go.  Next labs in a month.


----------



## Jo-mom

It must be a relief knowing that the new treatment will start tomorrow.  Sending positive thoughts that it works well and works quickly and works for many many years!!!!.  Thank you for the update.


----------



## crohnsinct

Wow!  Hate to break the 17 quiet streak on the parents forum but at least the sky isn't falling and it is just an update. 

O had her second loading dose of Entyvio last Tuesday.  Last Remicade was 6 weeks ago.  Last night she emailed the GI that frequency and blood are increasing.  

GI put her on a prednisone burst. 40mg for 7 days.  Then asked her to get home and into clinic to discuss next steps.  

Just so happens she is coming home Thursday night for a week so going into clinic Friday.  

She never really got to the 4 BM's a day that he said he wanted but Tacro was stopping the slide.  I am figuring Remicade was doing at least a little something and now that she is 6 weeks out (her interval was every 4 weeks) the Remicade isn't helping anymore.  

He opted for the Prednisone burst to get her through finals and get her home because she had such a bad reaction to the Tacro at 3mg and didn't want to make her sick for finals and traveling. 

Not really sure what he means by next steps.  Adding mtx would take a while.  Too soon to expect anything from Entyvio so no switch there.  Maybe switch from Tacro to prednisone?  Maybe EEN? 

Ohhhh!  Our favorite game!  Out guess the GI!


----------



## my little penguin

Glad she is coming home to get checked out by Gi


----------



## Pilgrim

Maybe he's going to order a fecal transplant and a radical diet change!

Sorry...no time for joking.

Hope there is a reasonable option. I admire how she keeps on with school in the middle of flaring. She's tough!


----------



## crohnsinct

LOL!  Pilgrim!  This is exactly the time for joking!


----------



## pdx

Sorry that she has to deal with this right now--hope the pred helps, and I'm glad that the timing on the visit home worked for getting in to see her doctor. Will she be home for the summer?


----------



## crohnsinct

Thanks PDX.  Nope!  She is only home for 10 days and then heads back to school.  She is taking a full course load all summer.  Wants to finish her two majors (both of which require a clinical internship each) and one minor in 4 years:shifty:

Ohhhh!  That's another option the GI might go for....no going back to school this summer.  Would I be a bad mommy if a half wished for that?  Would sure like to spend time with my daughter.....but maybe not if she is doing EEN:ytongue:


----------



## Jo-mom

Definitely not a bad mommy!  Your daughter is quite ambitious!  Hope your daughter finds relief soon.  Please keep us posted. We want to see how many points you scored on the GI game.


----------



## Jelly loves Peanut butter

Sorry to hear she isn’t feeling well.  You always seem to have such a good sense of humor about all this but really I hope she finds some answers after getting home and seeing GI.  Send idiotically thoughts your way


----------



## Jelly loves Peanut butter

Sorry spellcheck changed my positive to idiotically


----------



## crohnsinct

AW thanks! 

LOL!  That is my new favorite word...Idiotically!


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## crohnsinct

Oh and P.S. y'all!  O has been to something like 8 or 9 chiropractic appointments and her Crohn's is still getting worse.  So I guess that answers their idiotically purported claim!


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## Maya142

> Oh and P.S. y'all! O has been to something like 8 or 9 chiropractic appointments and her Crohn's is still getting worse. So I guess that answers their idiotically purported claim!


:lol: I didn't even know that was a claim! 

Really glad she will be home for a while at least. I think wanting her home for the summer may be what he's planning, so he can monitor her more carefully. She's been sick for so long - I can't believe everything she has managed to do while flaring. She really is a trooper!


----------



## crohnsinct

O had her appointment yesterday.  

She is stopping prednisone and trying to get Tacro increased to 3 mg twice daily as her level is only 3.2 and the GI really feels it needs to be at 8 especially now that Remicade is washed out.  

Scheduled for a colonoscopy next Friday.  Don't ask me why all of a sudden he is interested in scopes when all along he has said, "why do them if they won't change therapy plan". 

He feels she is in a mild to moderate flare.  Said if it were a severe flare her cal pro would be much higher than the 800 from 6 weeks ago.  I don't understand his rationale as she was on Remicade and Tacro and her cal pro was 800 so by now heck yeah it could be a severe flare.  

He is also not sure how much of what is going on is attributable to Crohn's or IBS.  Ya know...given the stress of finals and all.  Just ugh! 

Also, curious because she has been dx'd with Crohn's but it behaves like UC so interested to hear what the colonoscopy says.  No endoscopy and no small bowel imaging....yeah I know. 

He is not doing the scope.  The director of endoscopy is so in a way we might actually get a second opinion.  

Two day prep.  Ewww.  Not happy about giving up three days of her vacation for this.  The family just started a Move it in May challenge.  $20 buy in and person with most steps at end of May wins all.  O wants a handicap because she is taken down for three days.  :ylol2:


----------



## my little penguin

Seriously after all she has been through 
Upping tacro on one side 
But speaking ibs out the other 
I would be soooo mad 
Glad she is getting a scope 
But no imaging 
You can’t tell UC from crohns if you don’t see the small intestine


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## crohnsinct

More frustrated than mad.  All along I have been fine with the IBS dx but treat it already!


----------



## Maya142

I'm mad!!! This kid goes through SO much without a complaint. For her to be saying that she doesn't feel good and for then the GI to dismiss it...well, it's lucky I live across the country .

I also don't get how an FCP of 800 is a mild flare. Anything above 500 sounds bad to me, especially while on two meds!! Two strong meds - high dose of Remicade and Tacro.

Also with blood in her stools, how can it possibly be IBS?! Wouldn't it make more sense to treat the inflammation and then see?! How can he call it IBS when we know her IBD is flaring?!

This is exactly how my daughter's rheumatologist acted over her jaw pain - her first temporomandibular joint MRI wasn't too bad, so all pain after that was called amplified pain. We believed it because we were told that even though her arthritis was not in remission, amplified pain was causing most of the pain.

So we believed it and stopped monitoring her TMJs with MRIs. She complained of pain, sometimes a LOT and sometimes not very much. Now 3-4 years later, she needs it replaced. 

I'm glad he's scoping her but if he doesn't see TI involvement will that change her diagnosis? I'm confused about this. Crohn's colitis is a thing. Plus didn't she have inflammation in her stomach at diagnosis?

I would honestly get a copy of her first scope records. See what was seen then. At the time, you probably understood much less of the results since she got so sick suddenly. Now they might be very informative - will tell you if the inflammation seemed more like Crohn's than UC.


----------



## crohnsinct

Good point maya!  You made me remember over the summer when she went on the suppositories and she was a new person!  If it was ibs then the suppositories wouldn't treat it right?  

Also great idea about the previous scope records. You are right. She did have stomach involvement. Old GI said her stomach was filled with apthous ulcers. 

I am just trying to remain patient and wait to see what the scope reveals.


----------



## Maya142

If her stomach was filled with ulcers, that sounds like Crohn's to me! As a counter-example, my daughter's stomach inflammation has never been called Crohn's - it's always been called "gastritis" by both her adult and pediatric GI. Her stomach showed redness and biopsies  showed inflammation - initially mild, became moderate for a while and then back to mild.

In her case, her GI has always thought it was NSAID related because it didn't "look like Crohn's inflammation" - whatever that means. But she had NO ulcers, no granulomas.

If O had lots of aphthous ulcers, where else could they come from, besides Crohn's? An 11 or 12 year old isn't likely to have a stomach filled with ulcers for no reason.


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## crohnsinct

Update: 

I got copies of all of O's previous scopes and she has always had some inflammation in TI.  A couple ofttimes had stomach.  Granuloma's were found. 

O stopped prednisone and her symptoms picked back up.  

She was able to tolerate the increase of tacro to 3mg twice daily.  Her latest Tacro level was 9.2, right where the GI wants it but not really doing a lot for symptoms. 

She had her colonoscopy today.  Endoscopy GI was great and talked to me for a while.  

Found a polyp in her rectum.  He removed it.   

Rectum looked bad so they didn't use air for fear of doing damage.  They used water instead, gentler....messier though.  They had to change her in endoscopy suite and she couldn't stop pooping in the bed in recovery.  Went home in a diaper.  O felt bad but nurse said doc told her what to expect. 

Colon looks good. 

TI at first looked good but as he got closer look there were white plaques all over so he biopsied them. Her TI is not causing her symptoms.  

He said he doesn't know O but looking at her rectum he figures she is going about 20 times a day with urgency, tenesmus and blood.  Nailed it!  He said in his opinion ALL of her symptoms are because of her rectum and he would not say IBS.  He told me he was going to tell her GI that. 

He said topical treatment could really help her.  I told him she used suppositories with great success but insurance doesn't cover them nor foam.  He said try to get her to consider enemas because there is no way a kid should have to put up with what she puts up with.  He said if we could fix this she will be like a totally new person.  IDK if I am ready for O 2.0.  He also said with the pictures he took, maybe her doc can appeal insurance. 

So I will see if GI will write a script for enema and if O will actually do it for the next 3 nights at home.  

The big question in my mind now and one I don't think anyone can answer is, "if adding topicals can fix the rectum, did we abandon Remicade too soon?" or is long term use of topicals not a good maintenance strategy? 

As for the GI's calpro comment, rectal inflammation does not raise calpro as dramatically as colonic disease.  Similar to small bowel.  So 800 is actually indicative of pretty severe disease in the rectum, if that is where your disease is.


----------



## Jo-mom

Oh my - poor O!  Unbelievable what she has been through.  Sorry I don't have anything to offer with your question. Sounds like the Endoscopy GI really knew his stuff and confirmed it wasn't IBS...but you already knew that.


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## Pilgrim

O is setting the bar really high for the rest of our kids! 
"What do you mean, you are tired because you pooped 10 times today?! O did a double major with twice the problems!"
She is a legend!
I hope the enemas REALLY help her, honestly the rectal damage sounds scary.
I second the applause for the scope doc!


----------



## my little penguin

My mommy 2 cents - not a doc 
If remicade was working properly 
Then you wouldn’t need topicals 
Remember topicals only cover the surface inflammation and NOT THE FULL THICK ESS 
Crohns affects the full thickness 
So.....
Topicals will do the emergency reduction inflammation (systemic treatments always fix the rectum last btdt)
Entiyvio is great for UC (so probably good for rectum ) 
The topicals May be short term
6-12 months 
But should give o relief 

Also hear ya on fecal and rectum inflammation 
Gi tens to “forget “ that rectum doesn’t tend to show and small bowel only a tiny bit 

Glad she can get help


----------



## crohnsinct

Oh wow!  Thanks for that explanation MLP.  It definitely makes sense and makes me feel better.


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## Maya142

That's a good point that MLP made - Remicade clearly wasn't enough even at 10 mg/kg every 4 weeks, or her rectum wouldn't have been so bad.

Poor kiddo. I hope the suppositories/enemas work well. I know suppositories were pretty miraculous for M, but we only used them for a bad fissure that was bleeding -but I think that would be  considered perianal disease and not rectal disease.

And actually, when M stopped using the suppositories and the fissure came back and started bleeding again, it took only 2 infusions of Entyvio to heal it. Our GI said the same - works well for UC and rectal/perianal disease.

M has mild disease, so not a real comparison, but I'm hoping O will be lucky and Entyvio will heal her rectum.


----------



## Tesscorm

I just saw this update...  I'm so sorry that O has been dealing with so much!!!  But, am glad the GI recognized the extent of the disease and the impact on O!!  

I have no advice to give...  I really wish I had something useful to offer!

But, O really is incredible to have dealt with all this!  You raised a superstar!!    But, enough, she deserves a break now...  I really hope her GI gets her on track with a long term (successful!) treatment for her disease. :ghug:


----------



## crohnsinct

O got worse over the weekend. Foam and suppositories are not covered and GI says enemas would likely not work for her.  

GI wants her to get a blood transfusion and he would like to admit her for IV Tacrolimus because some patients need a level of 12 for their disease to respond and he isn't comfortable raising her levels that high on an outpatient basis. 

He asked if O would consider staying home this summer.  

She said O.K. to blood transfusion and no to staying home. The thing reason is she thinks we can turn this around quickly and then she would give up the entire summer just for a week of treatment.  She says this is all his fault for not taking care of it sooner. 

So GI says, "IF" she goes back he will put her on 20mg prednisone with Tacro bridge and Septra 3x daily to prevent opportunistic infections.  

She is supposed to leave tomorrow night.  Classes start Thursday.  We may change her flight to Wednesday.


----------



## my little penguin

Have you had a heart to heart woth O 
On how serious this is ?
I get she has had to muddle through for a long time woth no one believing her 
But it isn’t a matter of giving up her summer 
It’s a matter of getting her healthy 
Since she is tanking so quickly 

So not looking forward to the “pre adult” years (18-25)


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## my little penguin

If they are admitting her for a blood transfusion she may not be going home any time soon


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## Maya142

Sending big hugs to O. M has missed 4 semesters, as you know. It is heart-breaking each time. And yes, it has sometimes been due to a bad doctor, which makes it feel even more unfair.

But that's life, unfortunately . Poor, poor O. 

Why does she think everything will turn around in a week or two? It took quite a while for her rectum/colon to get this bad, and it will take quite a while to heal too...I think the hospital is the safest place for her to be. She is probably dehydrated as well as anemic and IV fluids might help. 

Another option to discuss with her might be EEN. Does that work for the rectum? I'm just wondering if the Tacro would be enough if she was on EEN, and if she could then avoid Pred and the antibiotic?

M has been on prophylactic antibiotics before and they honestly always make her miserable - they cause diarrhea, nausea, heartburn etc. Plus Pred itself is hard on the stomach and I'm sure Tacro is too...

That said, young adults are the absolute hardest to parent, because they technically can make their own decisions, but they don't always make the best decisions. Especially between 18-24...

Can her GI talk to her and explain why he is so concerned? And explain why he wants her to stay home?

The other thing we have done, to a get a VERY stubborn young adult to agree to an NJ tube? Bribe ...M says with a kitten (but she says a puppy is an acceptable option too).

The other thing that actually did work was having her psychologist explain the seriousness of the situation. Once she finally understood that they were genuinely concerned about her organs starting to shut down, she complied.

But the kitten helped .


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## Jo-mom

I agree with MLP - O being home would be the best thing for her - she really needs to get to a healthier place and a few days won't cut it.  I also agree with Maya - young adults are at a place where they can make their own decisions but they aren't always the wisests or most practical.  O has been through so much - she is one tough and resilient young woman.  I don't have much to offer in terms of medical advice because of my lack of experience,however, I am sending warm thoughts and hope that O stays the summer and things get better for her.


----------



## crohnsinct

Puppy?!  NO WAY! We have two already and one is epileptic so that is a hard no.  

You are all preaching to the choir but it doesn't help when you have a GI who isn't in the building and in her face saying, "don't be stupid, stay home".  He is actually saying, "o.k. let's figure out how to make this happen".  I guess his theory is, "if she feels bad enough she will stay home" but he doesn't really know O...sure her determination is admirable MOST of the time but sometimes she is just being plan old stupid. 

Even the GI Fellow who came in told her she will feel so much better once she gets the blood.  Wanna laugh...when fellow asked O if she was o.k. with the risks of the transfusion she said, "yes, right mom?"  I laughed and said, "oh now all of a sudden my opinion matters". 

She thinks that all she needs is the rectal meds because they helped so much and fast in the past.  

Going with her isn't a bad idea.


----------



## Maya142

> Puppy?! NO WAY! We have two already and one is epileptic so that is a hard no.


M says "So a kitten then?"

She is willing to foster it for you and make it puppy-like. She has trained one of her cats to walk on a leash and how to "sit" and "roll over"! That said, the cat is a cat and listens only about 50% of the time . About as often as my young adult listens, now that I think about it ..maybe that's why my daughter gets along so well with cats!


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## crohnsinct

:rof::rof::rof:That kid is hilarious! Takes after her mother.


----------



## crohnsinct

O went to infusion center and got two bags of blood. No labs. Her blood pressure was low. We all figured of course cuz she needed blood!  

Transfusion complete and BP still low. Fellow said Bolus fluids and recheck. Better but still low. Call fellow who callas attending. They send her to ER because infusion center closes at 7:30 and it is in another building. 

So off to ER at adult hospital.  GI on call wants her admitted. Waiting for the room at children's hospital.

As far as I can tell plan is more fluids, blood if necessary and there is some talk of IV meds to control inflammation. 

O is concerned she will miss her flight at 11pm tomorrow and thinks maybe we should change it to Wednesday morning. 

I have to call infusion company and tell them not to ship Entyvio cuz no one will be there to receive it.


----------



## my little penguin

Hope you got a room and they get some iv meds in her to calm things down


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## crohnsinct

Got a room. Iv fluids through the night. Recital suppositories. No iv meds. Her tacro level was 35. Way too high. Skipped oral dose last night to. Waiting to see what her tacro level is this morning. Labs were all fine last night but they took them after transfusion so duh?  BP has been good through the night. I think we will go home this morning. They aren't doing anything here I can't do st home


----------



## Jo-mom

:frown:You must be exhausted.  A mom's job is never done no matter how old their kids are.  Thanks for the update.  Big hugs.


----------



## my little penguin

Poor kiddo 
They admit her and do nothing but transfusion 
Ugh
Definitely not good her tacro levels are so high and she still is flaring badly 
That’s not good 
Hope her Gi gets a plan quickly


----------



## crohnsinct

She looks a little better.  Attending says we can go home.  She isn't changing anything because our GI has a plan.  Can't wait to hear it. 

We are going to let her go back to school with lots of conditions the first being I will go back with her for the first 4-7 days.  To watch her, get her settled with new med regime etc.  

Thanks forum for keeping me company all day/night and supporting us!


----------



## my little penguin

Love when they have a “PLAN”
But don’t bother to share it 
Yikes 
Glad your going with her 
But shouldn’t you find out what the plan is exactly before you leave 
Since it may involve stuff here


----------



## crohnsinct

LOL! 

Doesn't involve stuff here.  He said go for it.  Attending GI came in saying, "I hear you have a fight to catch". 

So it is just what meds she will be taking and I can get those scripts filled out there.


----------



## Tesscorm

Glad there's a plan...  and glad she didn't lose out on the summer semester!  

But, just hope she feels better soon...  that the plan works quickly and solidly!!!

And, also glad you're going with her for a few days! :ghug:


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## Maya142

Glad you will be with her. I can't believe how tough and determined this kid is!! She's incredible!! 

But really glad you'll be keeping an eye on her for a few days. Can't imagine sending her alone in this condition .


----------



## Pilgrim

Ooooh! A vacation!

On the upside, you don't have to figure out how to travel with a trained cat!

I hope O turns it all into roses in no time. She can will her body into submission.

Good mama for being right there with her.


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## crohnsinct

Haha Pilgrim!  

What I Did On My Summer Vacation


Went to school with O.  Status quo (15-20 BM's day, 1-4 throughout the night, bleeding, no appetite and losing almost a pound a day).  

The day before I was supposed to leave she comes down with mouth ulcers.  I was just going to take her doc and then fly out. 

Last day she wakes up.  Shaking, cold, vomits a lot of green/yellow bile fluid  and then high fever.  Email GI and told to hold Tacro, wait and watch.  Rest of the day is fine.  Fine through the night. 

Wednesday give GI update.  Told O.K, to restart Tacro.  Eating breakfast, take Tacro and immediately shaking and freezing.  Go home.  She vomits same as day before and temp of 104.7.  GI instructs us to hold taco (drug reaction?), stay home wait and watch.  Fevers throughout the day.  Still told not to go to ER unless certain conditions are met.  Dose with Tylenol, fever breaks.  Up 6 times through the night to go to bathroom. 

Thursday 5 a.m.  Shaking, freezing, vomits (same as before), fever 103.  6 a.m. Shaking, freezing vomits (same as before) fever 104+.  Call the on call and instructed to go to local ER we can transport if necessary.  Remember she is in rural area.  No GI in town or at this hospital.  

ER gives iv fluids and zofran. Tests for everything known to man.  CRP 198.  They work with home GI and home on call GI.  All cultures coming up negative.  They figure bacterial translocation (basically colon so inflamed that bacteria gets through the walls and into blood stream and other organs).  Started on round the clock IV broad spectrum antibiotics.  There for 15 hours with lots of back and forth on whether to transfer to major university hospital 2 hours away.  Decision is made to admit at local hospital.  

Friday a.m., shaking, freezing, vomit, high fever.  Lousy day.  Home GI wants CT scan to rule out perforation, abscess, or fistula.  On IV antibiotics she should be getting better. CT done last night.  Terrible night...high fevers, vomiting, regular Crohn's stuff etc.  Home GI wants her transferred next day. 

This a.m.  hospitalist reports CT is clear.  Wants more testing. Wants general surgeon who treats IBD (remember I told you RURAL) to see O and maybe do scopes.  Decision made not to scope since we just did them and have CT.  He says "Just a REALLY bad Crohn's flare" and orders iv steroids for a few days.  Get her to a point where she can take oral steroids.  They consult with home GI.  Home GI says clear CT is encouraging and he thinks we could keep her local and approves iv steroids for a few days.  Waiting for some cultures and more labs to come back.  Can you believe they send out labs?! 

So she will remain inpatient locally (locally to school that is) for 2-3 more days.  

Withdrawing from her semester.  Coming home when discharged. 

My Lesson learned: when going to E.R. if you can (i.e.: not anaphylactic shock or life or death) drive the extra distance to a major/university hospital.  They are nice people here and most are trying but....... 

Also, pay attention to inflammation y'all.  This is what happens when it goes unchecked. She honestly is a very sick girl.  I have confidence that the steroids will turn this around but they are steroids.  Need an exit strategy.  

GI's lesson learned: O always looks better than how she presents.  Should not have let her be discharged last week.  Should not have let her go to school. Bet he will never say IBS to me again.  

I AM NOT BUYING A PUPPY OR A LEASH TRAINED CAT!


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## Jo-mom

OMG - what a series of bad events!  Seems like you learned a lot of lessons, did O?  Being home for the summer is exactly what she needs. What torture this time has been for both of you.  Thank you so much for sharing all of this with us.  My mouth was agape as I read it.  I really hope it turns around.  Your daughter really needs a break from all this crap....literally.


----------



## my little penguin

Sending lots of hugs your way 
Definitely drive to university hospital when possible (safe to do so )
Poor kiddo 
Poor you 
Hope steroids kick in quickly 
Wow


----------



## crohnsinct

Thanks Jo-Mom.  

Yeah...I just learned that O is septic.  Not in septic shock (organs still working) but has sepsis.  

One dose of IV steroids and she already seems to be turning around a little.  

O seems to turn septic fast...maybe her disease just moves rapidly once it is given the chance.  At scopes her colon was declared clean but rectum was a mess.  Surgeon said CT shows inflammation throughout the whole right side of colon.  This happened in a two weeks!


----------



## my little penguin

Yikes


----------



## Maya142

Oh my god. This poor, poor kid. But also, this stubborn, crazy, insane kid!! I can't believe she was going to class in this shape. She is just like my daughter  and not in a good way :ybatty:!! She's so tough she literally keeps going till collapses. With sepsis . I am SO GLAD you went with her. 

I really hope you are able to get her transferred to Emory or home. Sepsis is so scary. 
And inflammation progressed fast! We will be thinking of O and hoping she starts feeling better and stabilizes.


----------



## Pilgrim

Oh my goodness, this is so terrible. There are so many things wrong. Thank God you were there.

She is not near "out of the woods". You and O will be on my heart and in prayers. 

Good lesson on the rural hospital. Better to drive for many hours when damage can be done from ignorance. 

Please keep us posted here and thank you for the details because they are a good reminder of the dark side of "toughing it out."


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## Maya142

> Please keep us posted here and thank you for the details because they are a good reminder of the dark side of "toughing it out."


YES! I talked to my daughter about O's case - reminded her that while kids with severe disease have to push through a lot to function - to go to school, to go out with friends, to play a sport -  they have to be careful that they're not pushing too hard. 

I think there is a fine line between pushing enough, through symptoms like pain or fatigue, and pushing too hard. Unfortunately, sometimes our kids have to figure out where that line is for themselves. Which means trial and error...lots of errors as they grow up and become young adults !

Really hope O is feeling better now.


----------



## pdx

Wow--sounds like an intense few weeks. I'm so glad that you were there, and really glad that she'll be home this summer.

I know I'm a broken record, but I still think you (or I guess O, at this point) should think about looking for a different doctor. I'm not trying to be critical--I know that none of this decision-making is easy. But I see how proactive my daughter's doctor is--she reacts quickly to every symptom that could possibly be Crohn's related. I just want that for all our kids!

Hope that O improves quickly and you're able to get home with her soon.


----------



## crohnsinct

No you are right PDX!  And MLP and Maya!.  It isn't an easy decision and we have had a bad run with pediatric GI's.  They have all been really smart physicians but not the best at case management.  At this point, we have been burned so many times that I think we are gun shy.  I think this guy could work.  He just doesn't "know" O and I well enough to have a good handle on things.  Well that and the fact that he has another job so his focus is split.  I just don't know where else to go.  We have been to the two top centers in our area.  Only other place is a small center.  Not necessarily bad but once you are at a big center with all the resources it is hard to leave.  

Ironically, the night before O was sent to ER I sent him a page long email talking about O, me, her health and history.  It was written to improve the way we work together.  This is what you are getting, this is what we need and this is how we can work better together.  I think he has it in him.  He is young and now a bit all over the place.  

Some think O had a partial obstruction.  She has classic symptoms.  CT said clear.  I asked GI if he wanted me to order the images so his department could read them and he said not now.  Let's wait 48 hours and see if we need them.  I wish he would.  IDK, maybe he doesn't want this hospital to feel like we are overseeing  EVERYTHING.  As it is, they are being very cooperative calling him and the on call every step of the way and letting them suggest which tests they want etc.  I can't tell you how many times they have heard "well our GI at home said".  So they are being very patient with us and they have a good working relationship. Maybe he knows something about hospital to hospital relationships and doesn't want to rock the boat by asking for the images so soon.  Maybe I am giving him too much credit. 

I guess another way to look at it would be, "would it change our therapy decision".  Probably not.  If she had a partial obstruction they would.....add steroids to knock back the inflammation. 

Maybe by "clear" they just meant none of the bad stuff they were checking for...abscess, fistula or perforation.  I have to get my hands on that report.   

Anyway, one dose of IV steroids in and happy to report heart rate is half what it was!  Normal!  BP is normal as is temp!  She had a BM with very little blood and there were solid flecks in it!  She is resting comfortably and having very nice conversation and is super cheerful.  I think we are on our way! WE say his all the time around here but gosh I didn't know how very sick she was until I saw her getting better.  

Thanks for listening guys.  You are the best!


----------



## my little penguin

No way
All specialists want to see the imaging for themselves 
And we have seen quite a few for lp at many major hospitals
None have gotten offended by asking for imaging sent 
They expect it 
That’s beyond weird to have a patient as sick as she is with sepsis and not want that imaging as part of her permanent record 
Ugh 

Have you seen the big adult centers in your area since she is over 18..???


----------



## Jo-mom

I am glad O is showing some improvement.  How are you doing through all of this?  This is a pretty stressful situation.  Things do have a way of falling into place.  I think for the most part, doctors do have the patient's best interest in mind, but they are human, and will and can make the wrong decision.  It is really difficult when you aren't driving and have to put your faith into getting there.  The main thing is that O is slowly improving which is the right direction. 


Once she is better, perhaps you might want to take a real vacation.  This one really doesn't count.


----------



## Maya142

I think that another doctor, perhaps in the same practice, could work. Is there anyone with more time? Who knows IBD?

At the same time, as Jo-Mom said, you have both been through a LOT. I would take the time to rest and recover and then consider whether a second opinion may help. Focus on getting O better for now and be kind to yourself. Watch bad tv. Read a book. Go for a walk. 

You've been running on adrenaline for quite a while and you will need time to recover. So will O.


----------



## crohnsinct

Thanks guys.  The hospital is recruiting another IBD director so maybe soon.  Otherwise there are other GI's but not as focus on IBD.  

I do think O's toughness and under reporting doesn't help.  Also the fact that she is 3000 miles away really doesn't help.  He has said on more than one occasion, I wish she were closer I would pull her in, hard to assess from so far away.  He has only seen her in his office probably 4 times in a year and half and with flares. 

Also, O has especially aggressive disease that changes rapidly.  Her scope was 5/10 and they only saw a chop meat rectum.  Rest of the colon looked good.  A week later the CT is saying inflammation from the splenic flexure down.  One week!  

I tried switching her to adult doc but no one will see her when she is only home for maybe 6 weeks a year and they aren't even consecutive.  The say get a doc close to school and you all know that story.


----------



## crohnsinct

CRP is going up. 

Hospitalist checked with GI and surgeon and they both say they usually give it 48 hours so we will recheck again in the morning and if still high talk some more.  

BUT!  She slept through the night.  Vitals are all normal and she is her usual perky self. Mouth sores are better and symptoms are improving a little.


----------



## crohnsinct

Sorry to be a forum hog but I feel like I haven't been completely fair to O.  

She has grown up a lot over the past year and has been reporting her symptoms more reliably.  Most recently right before finals when she wrote to the GI and was put on steroids to get her through finals and home.  

The problem is she has an incredibly high tolerance for inconvenience and she has been ignored by previous physicians and so has learned not to complain.  

Recently when she came home from school on steroids she had an appointment with GI and she looked very good and her symptoms didn't seem to bother her one bit.  But when he finally got her to boil down to # of times in a day and amount of blood, he realized things weren't that great and ordered scopes.  

Last week when she was inpatient after the transfusion 7 Gi's and GI fellows all said, "well you look great" and discharged her.  Her GI had nothing to do with that. 

Thursday in the E.R.one of the E.R.  docs said he was going to have a hard time convinced the hospitalist to admit her because she looked great. 

Only last week did she under report her quality of life but I think that is because she really didn't quite understand the concept.  She does now!


----------



## Jo-mom

No such thing as a forum hog.  Certainly this is not an easy situation.  In my books, you and O are tough cookies.  Please keep us posted.


----------



## Maya142

O is just a kid...young adults are learning how to take charge of their own care. All kids grow up at their own pace - I have one daughter who a nightmare during college when it came to her care. 

With my second one, she's been better but that's partially because I know more as a mom to help her transition, but also because she watched her older sister make mistakes and she has severe disease, so she knows she can't afford to make the same ones (i.e. discontinuing meds...for my older one it was Methotrexate). 

So basically, the first kid is the guinea pig . O will learn. In fact, she's probably learned a lot from this hospitalization. 

It is really sad to me that kids learn not to complain because their doctors don't listen . It will be a hard habit for O to un-learn but I'm sure she will do it after this experience (or at least I hope she will!!).


----------



## crohnsinct

Yeah well the hospitalist came in and the exam was going well.  CRP is down to 130.  She looks o.k.  Stopped fluids and she seems to be holding her own.  Then he asked her how her BM's were and she told him she went 4 times through the night and there was blood.  He said, "darn, I was about to discharge you until you said that". She said, "Oh man!" and he said, "that doesn't mean you are going to lie to me tomorrow are you?" :ybatty:

Since she is cutting over from IV steroids to a much lower dose of 40mg oral, he would like to keep her another night or two.  He is concerned that the drop will cause the flare to uptick and jeopardize her blood and organs again.  He is checking with home GI to see if he is o.k. with that plan.  

If home GI says, no she is o.k. to travel send her home she has a very long travel day.  Two hour shuttle bus ride to the airport, wait at airport and two flights totaling 9 hours (no directs available anymore).  Might be a lot for a kid just released with a CRP of 130 and just tapering steroids with active bleeding and many urgent bathroom trips but it would be nice to get home and close to our GO and hospital.


----------



## crohnsinct

Hey guys.  Well she was kept last night.  She didn't go at all last night.  She has only been 5 times so far today and all times bleeding but what else is new.  

CRP is down to 79.  

She is safe to travel back home and we will let her GI and hospital manage her from here on out. 

No flights out tonight so we will fly home tomorrow!  

SO EXCITED!


----------



## my little penguin

Have a safe trip ...
Hope Gi has a good follow up plan
All blood x5 today (before noon)
Is not a good thing ....


----------



## Jo-mom

It will be great for both of you to be on home turf.  Good luck with the trip back.  Hopefully you are seated near the bathroom.


----------



## crohnsinct

^:rof: Oh no you didn't Jo-Mom! 

We left the hospital and were eating discussing our travel home and the goings on.  I swear as weak and frail as she is, O literally said, "I know I have to go home but I could totally go to classes and I know I missed all the classes for that one class but I could still take the mid term".  

Are you kidding me?  I gave her what I thought the rules should be. 

1) no going back to school until you are having 4 or less BM's a day without the aid of steroids..her response "Great!  then I am never going to finish!".
2) Gain at least 8 pounds back 
3) get a symptom tracker AND USE IT! ( she has one on her iPhone but never uses it even though the phone is attached to her hand. 
4) update us weekly as to your symptoms/health status 
5) make an appointment with a GI at one of the major centers near (2-3 hours away) school. 

I am open to any other suggestions from the committee.  Fire away!


----------



## Jo-mom

Wow, O is unbelievable!  Here I am thinking, how is she going to make it on the flight with all those bathroom trips and she is thinking of actually going back to school?  Holy Canolli!  I hope she runs for president one day because with all her determination and will power, she can really be one strong leader.

I think your rules are very reasonable.  I can't think of anything more but I'm sure you will get some great suggestions from the others.  If I think of anything, I will certainly fire away.


----------



## my little penguin

> 1) no going back to school until you are having 4 or less BM's a day without the aid of steroids..her response "Great! then I am never going to finish!".
> 2) Gain at least 8 pounds back
> 3) get a symptom tracker AND USE IT! ( she has one on her iPhone but never uses it even though the phone is attached to her hand.
> 4) update us weekly as to your symptoms/health status
> 5) make an appointment with a GI at one of the major centers near (2-3 hours away) school.



So I don’t agree with number 1
Since entviyo can take 6-12 months to be effective 
CRp near normal yes
Be off Oral steroids no 
Bm to 4 or less per day yes 
No middle of the night bm for now until (4 or less /no blood )
Ds had to stay on steroids for 6 months when he started Stelara 
And then wean for a long while .....

Number 2 agree (add een and age will gain weight faster )
3.-5 completely agree 

Add 6 -8
Rules once at school 
If she has blood for mire than two days -local Gi and you are called 
Night sweats /chills fever -local Gi and you are called on the way to ER (pocked before hand by local Gi )
Printout /email a list of symptoms from symptom tracker  to local Gi prior to follow up visit 
Bring copy of list with her on day of visit 
Bring copy of any questions she /you may have to visit 
(She will provide to you 25 hours in advance ) 

Explain once she is stable (not stable now )
And better at reporting /self advocating when docs aren’t listening 
Less rules since she will already be doing those herself


----------



## crohnsinct

> So I don’t agree with number 1
> Since entviyo can take 6-12 months to be effective
> CRp near normal yes
> Be off Oral steroids no


Good point MLP...but argh!  A summer with a 19 year old who was just forced to withdraw from school on steroids #notenoughwine

I like the adds!


----------



## Maya142

O is going to murder me , but I have more:

6) No going to school unless you are well enough to: cook for yourself, clean yourself and your apartment and MOST IMPORTANTLY: are able to consume enough calories by mouth (food or Ensure) or by tube (if she cannot drink formula) to be GAINING weight (when she is up to her normal, then this rule can change to "maintaining weight"). This is going to be about 2000 calories, and if she's eating about 700 now, then she has to supplement with formula

7) No going to school unless you promise to us that you will put your health before school - as my daughter put it "You can replace joints, but you can't replace colons"

8) No downplaying symptoms/lying about symptoms EVER

9) Fever above 100.4 means an email to the GI and a call to Mom. A high fever (above whatever her doctor decides, for ex: 103 F) means contact her GI and Mom + go to the ER. Fainting may mean an ER trip and at the very least, warrants calls to GI + Mom

10) She will do whatever is needed medically (such as blood work, stool tests, picking up a prescription OR going to the ER when told to) promptly and MUST prioritize her health over school and no arguing with the doctor/Mom

11) The words "I am fine" are banned! Instead symptoms will described (number of BMs, whether blood is present, any kind of pain, mouth sore, nausea, appetite, headaches/feeling faint etc.) 

I know I've mentioned prioritizing her health over school twice but I think that cannot be stressed enough, especially with O!


----------



## crohnsinct

Thanks Maya!  I think all of these will come in handy for all kids going off to college.  They may be intermission when they leave but as you see things can always change.  

I forgot to mention the calories...we had talked about that. 

#11 is a good one.  WE discussed lunch that she may not be thinking she is downplaying and may in her head be "fine" because the frequency etc are not bothering her.  We discussed that from no on when talking about her health she is to use very objective terms...# of BM's, # of BM's with blood, fatigue (going to bed at X time, lack of appetite, skipped # of meals etc.  

I think or rather hope she is getting it.  We will spend the next few weeks practicing at home and I will see if I can get the GI to give her guidelines of when to call/notify etc. But judging froths actions of late the guideline is, call when you are heading toward sepsis and go to ER when you are septic. :mad2:

Yeah...still mad.


----------



## Maya142

> But judging [from the] actions of late the guideline is, call when you are heading toward sepsis and go to ER when you are septic.


Yeah, that is something to clarify with her GI...I'm still mad at him too!!

That's a great idea for her to report it in terms of number of BMs, amount of blood, any instances of pain or nausea and so on etc.  That makes a lot of sense considering she is able to function even when she's having bloody diarrhea 20x per day, so she may consider herself "fine" that day but her symptoms illustrate that clearly she isn't "fine" and her disease is not controlled at all.


----------



## crohnsinct

Well we fly home late last night. Got home at 2am. 

Started spiking 104.2 fever at 5 pm.  GI sent her to ER. Admitted. Iv Fluids and antibiotics. 

MRE in the morning. 

Not bad. An admit a week for the past three weeks.


----------



## my little penguin

Poor kiddo
Hope they get to the bottom of things


----------



## Jo-mom

It's really good that you are home now.  Sending good thoughts.  I can only imagine how exhausted you must feel.


----------



## pdx

So sorry to hear this--hope she recovers quickly.


----------



## Pilgrim

Oh no. Poor O. 
What were the mre results?


----------



## Maya142

Really hoping they can get O feeling better ASAP!! Thinking of her, poor kiddo. She's had such an awful time , it breaks my heart.


----------



## crohnsinct

Hi everyone.  I apologize ahead for this bomb I am about to drop.  I debated sitting with it for awhile but writing about it helps me and you all are s worried about O I feel like I owe it to you.  I don't have a lot of answers right now but here is what I do have.

O is very, very sick. I will spare you the details but it isn't pretty.     

- MRE Showed no evidence of abscess, perforation, fistula etc. Nothing that would be contributing to these fevers. It DID show inflammation from the transverse colon through the rectum. The GI said radiologists never comment on mild, moderate severe but when he read Os images he said to the GI that she was VERY SEVERE. So A) it is very severe and B) it has spread a little more since the CT scan even and remember CT scan showed a spread from the scope. So in three short weeks we went from a severely inflames rectum and nice pink color to half a colon that is basically chop meat and letting bacteris leak into her bloodstream.  

- We met with a new GI, A woman. She is smart and kind and listens and all around wonderful. The team was on the floor today to talk to us. There were about 8 of them. We never did get to talk to them because O had MRE and they moved on and only the kind GI came back. 

She says they should have never let us go last week and it was over ambitious. 

She is amazed at how fast things are moving and how severe O is. 

The fact is that she has been on Entyvio, Tacro and IV steroids and 40 g steroids and the disease has still aggressively spread and has left her with high fevers, vomiting and malnourished. There is little to no chance any other med would succeed where these others have failed. 

They will be putting her on TPN to improve her status and give our next steps a chance to work. 

They want to make 1000% sure they are not missing another infection so Infectious Disease will be taking a look. 

They are wondering about CMV as it mimics Crohns. They biopsied for that at scope on 5/10. They were going to discuss if they thought there was a chance she came down with it over the last two weeks. It means a scope to grab a quick biopsy and they don't want to scope her because of the condition of her colon. 

They would like to try vancomycin as it has some success at healing. If that doesn't work next step is a combo of 4 different antibiotics (Vanco and the IV atx she is already on+ two new ones). 

She wil remain o 40mg daily of prednisone.  Entyvio still scheduled. 

If antibiotics don't work surgery will be our only option (another reason for TPN - to improve nutritional status for surgery). We will be looking at a permanent ostomy. She definitely has Crohn's so maintenance meds for the rest of her tract.  

A GI from the team and I will meet with the surgeon to start information gathering. They are setting up a meet and greet for the surgeon to swing by O's room to say hi and explain how he could be a resource for her SHOULD we need him. 

Her GI is stressing the IF we need him. He is taking it VERY slowly and telling us not to get ahead of ourselves. TPN and antibiotics might get her to a point where steroids can maintain her until Entyvio is therapeutic.  Our GI is away next week but will be in touch with the team every step of the way.   

We are very much day at a time.

She will be in for about another week but that estimate changes depending on who you talk to.  I have heard at least till Monday and at least a week. I guess we will know when we know.   

O is being told a step at a time.  TPN and antibiotics for now.  WE will jump off the other bridges when we come to them.


----------



## Jo-mom

So sorry to hear this.  We appreciate you sharing this with us.  Praying for a change for the better.  We are all here for you.


----------



## my little penguin

Many many hugs to you and to her 
Healing thoughts your way


----------



## pdx

:ghug:


----------



## crohnsinct

> Background: The results of previous studies on the effectiveness of antibiotics in ulcerative colitis (UC) seem more effective when used orally. In this retrospective, multicenter study, we aimed to report our experience of using a combination of 3–4 antibiotics in children with moderate-severe refractory UC and IBD-unclassified including metronidazole, amoxicillin, doxycycline, and if during hospital admission, also vancomycin (MADoV).
> 
> Methods: All children treated during 2013 with the antibiotic cocktail for 2–3 weeks in an attempt to alleviate inflammation in refractory colitis were included. Doxycycline was substituted with oral gentamycin or ciprofloxacin in children younger than 8 years or when an allergy was known to one of the drugs. Children were assessed using the PUCAI and CRP weekly for 3 weeks. Results: All 15 included children had moderate to severe disease with refractory disease course to multiple immunosuppressants (mean age 13.6 ± 5.1 years, median disease duration 2 (IQR 0.8–3.2) years, 11 females (73%), and 13 (87%) extensive disease; 14 (93%) were corticosteroid-dependent or resistant, and 12 (80%) refractory to anti-TNF therapy). The cocktail was definitely effective in 7 of the 15 included children (47%) who entered complete clinical remission (PUCAI < 10) without additional interventions. Questionable or partial short-term response was noted in another 3 (20%), totaling 67% of patients.
> 
> Conclusion: The use of oral wide-spectrum antibiotic cocktail in pediatric UC seems promising in half of patients, refractory to other salvage therapy. A pediatric randomized controlled trial to assess this intervention is underway.


https://academic.oup.com/ecco-jcc/article/8/11/1464/356654


----------



## crohnsinct

IDK if I mentioned it here but O got mouth sores for the first time last week and over the last day or so has now developed Erythema nodosum .  Just more evidence that her disease is really kicking it up a notch. 

The team just told her that she is at the top with the big guns as far a pharma therapy and that she is starting to get close to running out of options and mentioned that the next step would be surgery.  They assured her it is not the next step but that it might be good to meet the surgeon and have a chat so if it does become the next step she won't find herself in unfamiliar territory during a stressful period.  Her response, "yeah sure.  I am fine with that".  

She really likes this GI and the fellow who was in the room.  I think we are going to transfer care to her.


----------



## my little penguin

So glad O found someone who listens to her 
And makes her feel comfortable during this Difficult time


----------



## Pilgrim

Hoping for the best with the antibiotics trial. 
I hope under that nonchalant exterior O is coping. Crohn's isn't giving her a lot of time to adjust to worst-case scenarios.


----------



## crohnsinct

Great day yesterday.  No fevers, few BM's, ate a good amount, no vomiting, got her PICC line placed.  It is probably still to early to tell but looks like vancomycin has made a difference.  Either that or the prednisone has finally kicked in. Weighed her this morning and she is up a pound. 

Had a rough night.  Up 5 times.


----------



## crohnsinct

Infectious disease came and they don't think she has anything that would fall into their realm. 

She ate breakfast and went right back to liquid and blood.  TPN is usually given with orders for no food but the team is o.k. with her eating because she isn't absorbing much anyway. 

Docs came by and looked at her output.  They said not great but not the worst they have seen.  Said it sounds like vancomycin is starting to work a bit.  They are stopping the broad spectrum iv antibiotic.  They would like her to start a taper of prednisone because they don't like kids to be on such a high dose for more than 10 days.  Today is day 9 so maybe Tuesday she will step down.  I am a little nervous about that but I guess it is the only way to know if vancomycin is doing it's thing and will work long term.  

They will also give her steroid suppositories to use while she is here because those seemed to really help her back in January and the enemas did nothing.  

They are considering tacrolimus again because she has been on steroids too much over the last 18 months.  It really hadn't worked over the last month but her levels were all over the place so hard to know.  May give her IV tacro to get her levels up to 12 and see how that goes.  They will talk with her GI and come up with a plan. 

That's it for now.


----------



## crohnsinct

Rounds completed for the day.  Going to be a quiet day here for us.  

Surgeon can not meet with us today because he isn't coming to the hospital.  We will meet with us tomorrow. 

Because of ongoing bleeding and night time waking for BM's they are going to put her back on IV steroids.  Not sure if this means a dose increase or they are doing same dose just different method of delivery so she absorbs more.  I will check when it gets delivered.  

Pulling iron studies.  

O had a great day yesterday and was out in the gardens with her dad, one of her sisters and I for 4 hours playing scrabble etc.  She had to go up and down to her floor for various IV pump issues a coupe of times.  Today she asked if we could just lay low in her room.  She is exhausted and has been sleeping all morning.  Good thing it is a quiet day I guess.  I'm bored! 

That's it for now folks.


----------



## Jo-mom

Sometimes quiet and bored is a lot better than the alternative.  Who won scrabble?


----------



## crohnsinct

Trudat Jo-Mom! 

LOL! Her dad...he had no mercy for the sick kid.  He buried us.  But she came in second!


----------



## Maya142

If your recently septic, bleeding O can come second...Dad better watch out !! Who knows what she will do when well?!

I'm glad she improved a bit but also sad that it was short-lived enough that they're putting her back on IV steroids . Our hospital stays have often been like this - two steps forward one back. It's hard to be patient - I always just want to get out of there ASAP and my daughter is even worse!

Sending her big hugs and hoping the meds will kick in. Hoping the surgery consult is only that - just a consult and nothing more.

We will keep O in our thoughts :ghug:.


----------



## crohnsinct

Haha...O took "quiet day" literally and spent the entire day in bed!  

The nurse clarified for us that her steroid dose is still 40mg just changing to iv so easier to absorb.  

Not a bad day at all.  Frequency and blood are down and things are less diarrhea. We were feeling super positive.  

Tonight has a fever of 101.3 and nurse said instructions are at 101 to dose with Tylenol so we won't know what it would have climbed to and I am rather happy not to find out.  

Needless to say, we probably won't be going anywhere tomorrow.


----------



## crohnsinct

Hmmm.  O is really learning how to be a good patient!  She reminds me...this is exactly what happened last week.  They stopped iv antibiotics at the hospital by school on Tuesday at noon and by Thursday afternoon she spiked fever.  This time they stopped iv antibiotics yesterday morning and 36 hours later fever.  

They had ruled out all infectious causes and so assumed they were inflammatory fevers but her inflammation is going down so what on earth is this? 

Stay tuned.


----------



## Sascot

Sorry to hear all she is going through. Hope you get answers


----------



## crohnsinct

Met with surgeon.  He reviewed the MRE images.  He is sure she has Crohn's because he sees inflammation in her T.I.  

He would remove the entire colon.  It is in pretty bad shape.  So total Colectomy.  Possibly most of the T.I. and give her an ileostomy.  He will also take some of the rectum but he would like to save some so that maybe after a year or so she may be able to have a second surgery to extend the small bowel down to the rectum and not have to use the ostomy.  He said he is having a lot of luck with this approach. It does leave you with diarrhea but only like 4 times a day instead of the 15-20 you have now.   I mentioned that O's bad disease is mostly rectum and he said even still after a year he finds enough healing occurs and he is able to do the take down.  If he does and it doesn't work she would just go back to using the ileostomy. He said at that point you aren't as scared because you know what life with the bag is like already.  

He also had some encouraging words.  He said even if he has to take the entire rectum and the ostomy is considered "permanent", in kids as young as O he doesn't like to call the bags permanent.  He said she has a long life ahead of her and medicine advances at a fast pace and he firmly believes that they would come up with options for her to get rid of the "permanent" bag.  

He told her she doesn't have to decide right now and that he is here for her if/when she needs.  

We are just processing the info.  I know she has already started talking about it with some of her friends. 

She is very conflicted but I reminded her that we are not yet ready to abandon Entyvio and we haven't exhausted the antibiotic approach.  These discussions were just in preparation for IF the meds fail.  I think we also have to wait until we get a chance to really talk things out with her GI to find out if there are any other medical possibilities.  I also told her that if the decision is too hard, her body might make it for her.  The important thing he did mention is that it is much better to elect to do the surgery than wait until it is emergency surgery.  So we will monitor the situation closely. 

Meanwhile fever free all day.  Off and on BM's and blood.  No clue what the plan is.  More on that after rounds tomorrow.


----------



## Jo-mom

The site was down all day.  This is very big news and definitely taking time to process it is a good idea.  Sounds like O is being very mature about it - this would be really tough for anyone let alone a young adult.  At least you are aware of the options now.   Take time to digest it all - it's always so daunting taking news like this in.  Big hug.


----------



## crohnsinct

No fever since Monday night. 

She only gained .2kg from yesterday to today...better than yesterday but not great. 

Iron is low so going to get 2 iron infusions today.  TPN has to stopping order to do iron.  So they will taper TPN down and then start iron.  

Still having about 8 BM's a day.  Less volume but most with blood and some all blood.  

They are declaring the vancomycin a fail.  Will move on to quadruple antibiotic therapy and add doxycycline, flagyl and amoxicillin to the mix.  Continue 40mg prednisone.  

She is stable.  Aside from the TPN they are not doing anything here that I can't do at home.  Heck we could even do TPN at home but they don't do that here.  

So if she promises to eat or drink a few Boost a day, they are looking to discharge her tomorrow or Friday.  

Old GI offered to give some guidance so sent records off to him.  Current GI on vacation till next week so don't expect a lot to happen until next week maybe even Friday.


----------



## my little penguin

Hugs


----------



## pdx

You all are in my thoughts. Really hope the new antibiotics help.


----------



## SoccerMom47

Prayers for O


----------



## Pilgrim

Praying. I'm also worried about you taking her home.


----------



## Tesscorm

I've been away for a couple of weeks and just saw all this!

OMG, poor you and O.  My heart breaks for her...  for having to manage all that she has the last couple of weeks and having to deal with the possibility of surgery.   She really is such a strong young woman, being able to take it head on.  She's so headstrong and determined to take on life and will do so much, it's seems even more unfair that she's derailed by health obstacles!  Ugh, makes me so mad and sad for her.

And, hugs to you too...  no matter how much wine, these are still our babies and it's always heartbreaking to see them struggle.  It's clear where she gets her strength!   Lots of hugs to you too!  :ghug: :ghug: :ghug:


----------



## crohnsinct

O gained .4 kg!  Her CRP is was down to 5.5mg/dl on 6/3.  Her volume of stool and blood is down.  Frequency is down to about 8 a day and 1 at night.  Still passing all blood at least once a day.  

She is stable and not much more they can do for her here.  She is getting discharged today and can go home right after her iron infusion!  Going home just in time for T's infusion this afternoon!  

She is being released off TPN, on 30mg oral prednisone and her antibiotic cocktail.  She will have her first maintenance dose of Entyvio next next week.  

So now we wait and watch.


----------



## my little penguin

Thought they were switch from Tpn to een ?


----------



## crohnsinct

That was how the fellow explained the plan to me a few days ago but on discharge they said nothing to O.  I wasn't in the room.  That all teach me to go to the bathroom!  I had to page the Fellow for him to fax discharge instructions to home infusion agency because they won't set up infusion without him saying it is o.k..  I will ask him if.when he comes by.


----------



## my little penguin

No more bathroom trips 
Have the nurse page the fellow —- otherwise you won’t see them ever till next week


----------



## Maya142

Will she be drinking some shakes, at least to keep her weight up? I know she was eating while on TPN. Ensure and Boost really do have more flavors now...And I think Boost Simply Complete does not contain carrageenan and my older daughter liked both flavors (I think they have vanilla and dark chocolate). It helped her gain weight she had lost due to a flare.


----------



## my little penguin

My vote een -elemental 
Simply based on what she is doing 
She isn’t absorbing much right now and not healed at all 
Polymeric formula won’t cut it 
She will still lose weight if she isn’t absorbing 
The whole thing stinks


----------



## Maya142

Elemental would be ideal but hard to drink. She'd probably need a tube then. She's a pretty determined kid though but it's definitely hard with a teenager or young adult (who is technically an adult and can choose).
My kiddo thought Peptamen Jr was tolerable could drink 2-3 cartons but elemental formulas -  no way.


----------



## Tesscorm

CIC, did O ever use an NG tube?  I can't remember...

FWIW, S always said, if given th choice, he would rather use the tube than be forced to drink a minimum number of shakes...  if she's open to it, might be an easier way to get elemental formula done.


----------



## crohnsinct

I had to have them page the fellow anyway because the home infusion agency will not schedule her infusion without discharge instruction from the fellow.  So I will bombard him with EEN/EN questions as well.  

Just spoke with pharmacy.  They are discontinuing vancomycin.  Couple of reasons, she hasn't responded yet AND the evidence for antibiotic therapy is just for triple therapy (doxycycline, amoxicillin and Flagyl) so no sense in confessing matters an she is on enough drugs.  

I asked about probiotics and they asked me not to start them because that might confuse matters as to what is helping or not helping etc.  

She hasn't taken her suppository yet today and already frequency is WAY up.  Suppositories are not covered on our insurance.  Enema's didn't work (theory being it shot past the real problem area) So the pharmacist researched it and found a cream they WILL cover and they will file an appeal in the meanwhile.


----------



## crohnsinct

No.  She drank Ensure andBoost but with the inflammation she has she may need a formula she can't/won't drink.  I think facing colectomy she might love an NG tube instead.


----------



## crohnsinct

Forgot to add...the triple antibiotic therapy is scheduled to end around 6/26.  Pharmacist said that is what the literature says.


----------



## my little penguin

Pull map theory stuff 
That has the triple antibiotic protocol 
I thought it was longer ...
Maybe not


----------



## my little penguin

Check goodrx 
Sometimes drugs not covered by insurance are reasonable with goodrx 
Sometimes not so much 
But worth the look


----------



## crohnsinct

my little penguin said:


> Pull map theory stuff
> That has the triple antibiotic protocol
> I thought it was longer ...
> Maybe not


I am one step ahead of you!  You are right!  Some are 4 months.  And they don't use the same antibiotics that they put her on here.  I actually haven't found a study using the same ones she is on.  Have no fear!  My obsessive IBD mommy search skills are in overdrive!  For now I have to fight Silicon Valley traffic home.  They offered to keep us here for another hour or so to miss the traffic but O wants to get outta here before they change their minds


----------



## Maya142

An NG tube looks intimidating but it's surprisingly easy, once you get the hang of it. Was she bothered by her PICC line? Because if not, I'd seriously, seriously doubt that an NG tube would be uncomfortable. M hated the first 2 days, but every day it got easier. She was inserting the tube in less than 10 seconds a week or two later.

My daughter also agrees on the tube vs. drinking formula. Says drinking is too hard and too much of a hassle. She thinks a tube is way more convenient. This way all of the formula goes in overnight and the kid is free to do whatever during the day -  go to class, go to the gym - she can even eat, depending of what's allowed. 

No nagging her about trying to eat or drink more. If she has a lot of diarrhea, you have a way to make sure she isn't dehydrated - you can always pump Pedialyte. She can insert it in the evening and take it out in the morning - no one really even has to know she has it. I know she doesn't like pills much, but M says if you take a few sips and swallow the tube down with water, you barely feel it. It didn't even make her gag the first time. And plus, if you switch her meds to liquids, she won't have to take any pills!

The Feeding Tube Awareness site has lots of great info.


----------



## my little penguin

How is she doing now ??


----------



## Clash

I've been away so very long that when I signed in I didnt recognize the forum at first. But, when I saw this thread I immediately clicked on it. CIC, so very sorry for all that O has been through! Prayers that things are improving and the disease gets it's butt kicked by the antibiotic cocktail. Hugs!


----------



## Jo-mom

I've been thinking of you and O much lately and have been hoping that things have improved.  More hugs.


----------



## crohnsinct

Hey guys!  Sorry I haven't written in a bit.  Thanks for keeping us all in your thoughts!  

After we got home, it was a little bumpy there for a bit (fevers, vomiting etc) but looks like frequency is way down as is the blood!  She was in the E.R. the other night for low blood pressure and they figured it was just dehydration so IV fluids and she was good to go. She seems to be steadily progressing now.  Could it be that this antibiotic cocktail really works? 

Her stomach is really bothering her but we are putting that down to antibiotics.  

She is up 2 pounds! 

She has new ulcers in her throat/mouth. Not sure if that is viral or Crohn's or what.  

Entyvio infusion tomorrow.  

I am having a hard time relaxing and enjoying the good.  I think I was in crisis mode for too long and waiting for the other shoe to drop.  Been here before.  It will go away a little each day.


----------



## Jo-mom

Thanks for the update.  Glad it is better news.  It's easier said than done but try to relax and do something for youself.  Maybe a massage?


----------



## Tesscorm

Really happy things are beginning to improve for O!  Sending wishes and prayers that there are no more bumps and she just continues getting better!!

And, yes, for you, it's hard to go from "all out red alert" to nothing...  will take a bit to let that adrenalin subside.  Dilute it with wine!


----------



## Pilgrim

It's probably wise to work up to taking it day by day (after you work up to hour by hour!)

Will they be doing labs during infusion?

So relieved that you get a tiny bit of breathing room!


----------



## crohnsinct

LOL!  Well that was a nice break wasn't it? 

I didn't tell you guys this BUT O has been complaining of stomach aches.  I put it down to the antibiotics.  She ran a fever one day and then another was vomitting green, thick bile.  

Monday she woke with a read sore upper palate in her mouth and throat.  All around there were white ulcers.  We sent a pic to GI and GI said, could be viral but get a mono screen.  

O doesn't have a PCP here in Cali so off to urgent care attached to my docs office and local hospital.  Urgent care doc says not strep and highly doubts mono BUT her BP is too low to let her go and she looks jaundice.  They wheel her to E.R.  E.R. says not mono and low BP is likely due to dehydration.  So two bags of fluids and labs and she is let go.  They tell us labs look good and they will call only if mono test is positive.  

Today lab results posted to portal and SHE HAS MONO!  Oh yeah and her Albumin has gone down to it's lowest and HGB and HCT are not improving from a week ago but at least they are holding steady.  

Sent labs to GI.  Basically, don't share a glass with her, no running a marathon, o.k. to get Entyvio tomorrow because it is gut specific and get her weight up.  

She has a friend visiting from CT and they are sharing a bed!  YIKES!  Not anymore.  They are trekking all over nor cal sightseeing but nothing too strenuous I think.  

O.K. I am going to take Tesscorm's suggest and drink some wine.  Did I say drink?  I meant guzzle.


----------



## Jo-mom

Oh no, mono too!  Go girl - go guzzle that wine.  I still think a nice massage, spa visit would be good for you with a gallon of wine.


----------



## my little penguin

It’s all you


----------



## Pilgrim

How can she even get out of bed? O is incredible.


----------



## crohnsinct

Hey y'all!  New game....where in the world is CIC?! 

You guessed it!  

O has been admitted again. 

Seems she is still up to her tricks!  I was away Thursday through today and she was at home with her visiting friend yucking it up and sightseeing all over Northern California.  Today she called me unable to eat or take her meds.  She had vomitted yellow/green thick stuff.  When I got home she had a fever of 102.2 and she had a pure liquid BM. 

Her labs from the day of infusion last Thursday aren't great.  HGB and Hematocrit are down again and CRP is up.  

She admits the last few days her friend was here she was just sucking it up because her friend was here.  

I let GI know and he doesn't think any of this is because of mono.  He feels she is too malnourished to fight the inflammation in her body.  He wants her admitted for complete bowel rest and TPN.  One she gets healthy then we can discuss medical vs surgical management going forward. 

They weighed her as soon as she got here and she is down to 109.5 pounds (a new low).  She was 117 at discharge 10 days ago.  

Will keep you all posted!


----------



## pdx

So sorry to hear this. I really hope that TPN (or maybe elemental EEN via NG tube?) will give her body the nutrients it needs so that she can start healing. Hang in there.


----------



## my little penguin

Sending lots of hugs  your way 
And healing vibes


----------



## crohnsinct

Switching back to iv steroids.


----------



## Jo-mom

More hugs and healing vibes from me as well.


----------



## my little penguin

Good iv steroids don’t rely on a healed intestine


----------



## Tesscorm

Sorry that's she's had another setback!   I really hope she rebounds quickly!!


----------



## crohnsinct

OK so the theory of the day is that when they cut her over from IV steroids to oral, she wasn't absorbing the oral steroids well enough and went into adrenal crisis.  There are apparently some markers in her electrolytes that are leading then to think this.  So they gave her a boost of IV steroids last night and will keep her on IV steroids for a bit.  Then when they cut her over to oral they will keep her an extra day just to make sure she does o.k. with the switch and doesn't start vomitting and spiking fevers ad losing weight again.  

Her weight today was 110.2 so she gained 3/4 of a pound.  Not bad.  She has a bit to go before they will take her off TPN.  

Met with PT because she is getting weak.  

Possibly meeting with psych because 4 admits in a month could be rough on a kid.  Especially a college kid who had to drop out and who is just waiting to get back to their regularly scheduled life.


----------



## pdx

Glad that her weight is up! I would encourage you to talk to her doctors about the possibility EEN after she goes home. Elemental or semi-elemental formula might really help her if she's not absorbing much right now. Doing an NG tube at night is really not as hard as it seems; after a couple of days my daughter hardly noticed it, and she's very sensitive to discomfort.


----------



## my little penguin

Definitely elemental
It’s for those woth short gut syndrome
Only requires a few healthy inches
Vs semi elemental requires more healthy intestine


----------



## Pangolin

Good luck to your daughter, crohnsinct. I would definitely give TPN and/or EEN a chance with absolutely no other food to see if that helps. There's a good chance extreme food sensitivities comparable to celiac are playing a role here.


----------



## Tesscorm

Wow, poor O.  She really isn't catching a break here.  May be a dumb question but does the possibility of the adrenal crisis mean it may have appeared as mono and she really doesn't have mono??  I'm sure there are specific tests for mono but just seems to be so much bad luck for her...  to have adrenal crisis ON TOP of the flare and mono.  

Really am feeling badly for her and you.   Sending prayers and wishes she begins to see real improvement soon!


----------



## awmom

Oh my goodness crohnsinct, I am just catching up to what has been going on with you and your daughter....you have been through so much!  She sounds like such a strong young gal, and I know it is so difficult to stay strong (for both of you), not only with feeling lousy, but also though all this uncertainty.  I do hope this bowel rest will allow really good healing to happen, and that an improved nutritional status will help immensely.

Sending you both the very best wishes that she gets back to health and to her life soon!


----------



## crohnsinct

OK so they are not 100% sure about adrenal insufficiency.  The doc tonight feels it is much more her Crohn's flaring.  He did say it is possible there is "some" insufficiency but he isn't hanging his hat on that.  

They decided not to put her on complete bowel rest.  She has been eating the whole time.  Don't ask me why.  I think maybe because they want to know that when they release her she they know she will eat.  The RD came in and told her the more she can eat now the sooner she will get off TPN.  
She is filling out calorie count sheets. 

They are already starting to talk to her about "when she goes home".  We asked the resident what the end game was.  He said gain a few days on TPN and then a day or two on food alone to make sure she is gaining and then she can go home.  He seemed to think going home Thursday might not be out of the question.  I am not counting on it.  They added periactin to her meds today to stimulate appetite.  It is starting to get to be too many different meds for my liking.  I wasn't here when he talked to her about this but I she got terribly dizzy after taking it today.  

Am planning to discuss EEN for when we get home.    

Her CRP is still elevated but way down.  Down 75%!  So that is excellent news!  The IV steroids must be doing their thing! 

MUCH fewer BM's and a lot less blood.   

No talk of tapering steroids anytime soon.  The next big step will be off iv and going oral.  

They are not making any major Crohn's management decisions here.  They are just trying to get her to a stable place where they can discharge her and feel relatively confident that she won't tank again and then let her GI handle the overall disease management decisions.  

It's frustrating not having your GI at the hospital but I get it.  The hospital is for acute management.

As for the mono, the team here says they are not convinced she has it.  Something about antibodies that develop on Remicade and Vedo that cause false positives on the mono spot test.  Just strange because her GI and his ID buddy were convinced that the mono spot test rarely returns a false positive. 

So to answer the obvious question, "yes!  I am dizzy with all the this and that and maybe that".  Just hanging in trying to get her healthy so we can move on.


----------



## my little penguin

Sending hugs your way 
That’s a lot


----------



## Jo-mom

Holy cannoli - I'm dizzy reading all the different things happening here.  I can only imagine how you are feeling. But reading about the weight gain, the CRP drop at least is good.  We are all keeping you and your daughter in our thoughts (speaking for the committee here).


----------



## Maya142

> They decided not to put her on complete bowel rest. She has been eating the whole time. Don't ask me why. I think maybe because they want to know that when they release her she they know she will eat. The RD came in and told her the more she can eat now the sooner she will get off TPN.
> She is filling out calorie count sheets.


This is nuts. Why does the plan keep changing? Are they in touch with your GI? When M is hospitalized, the attending GI always consults her regular GI because her regular doc knows her best obviously.

I also think EEN is a great idea. I would also think that her best bet is elemental or at least semi-elemental, since she is likely not going to absorb enough of polymeric formula and if the idea is gut rest, then really elemental would be best. Using an NG tube is not as hard or as intimidating as it sounds. She could even leave it in for several weeks since she's home. It made a HUGE difference to how M felt. Her BMI was 15 and that's dangerously low apparently, and once she was getting enough calories and nutrients, she couldn't believe how much better she felt.

Obviously in O's case, it won't be that easy since she is hugely inflamed. But it won't hurt and it'll put weight on her. M really resisted the NG tube but  once she had it, it was just such a relief to not have to force herself to eat.

I think before any plan for discharge is made, the attending should talk to your GI, since he wanted complete bowel rest. I would insist on that and point out this is her 4th admission in a month or so and if there is no proper plan, she'll just end up back in the hospital. 

Psych is also a great idea since she's been through so much and such a short time. It's very hard to have your life put on hold...M has been in that position before.


----------



## crohnsinct

haha Maya!  You are reading my mind!  I just sent her GI a love note.  Will keep y'all posted.


----------



## crohnsinct

In addition to asking GI to clarify the bowel rest/TPN/eating confusion I asked him to be more direct with his thoughts about where we are and where we are headed. 

Heard back from GI.  He checked in with attending who said he agrees and it looks like the intern/resident didn't get the message about complete bowel rest.  Attending is full of it because the word Periactin fell from his mouth so he is letting the intern/resident take the fall but I will let his mother worry about him.  Meanwhile attending just lost my respect.  

Also appears that GI still believes in Santa because he is still hoping Entybio kicks in....I guess it is still possible.  It has only been 10 weeks.  Took my nephew 24 weeks.  Wonder if we can request an upper floor room overlooking the gardens for our next admit?


----------



## crohnsinct

We had rounds.  RD wasn't included this time.  Much smaller group today.  actually just attending GI and Fellows/interns/residents.  

Attending apologized for the confusion.  Said the "bowel rest" message never got to him.  They stressed over and over that she is to feel NO PRESSURE to eat.  She CAN eat for comfort if she wants but she is getting everything from TPN.  He said, the problem is that they can't send her home on TPN.  You can bet I questioned that....of course they can...he said they don't.  Don't and can't are two different things.  I asked if they could send her home on EEN and he said no not really.  So I said, "then the choices are here on TPN or home on food".  Pretty much!  We talked about EEN.  The overwhelming problem right now is EEN won't provide the calories she needs to get healthy as fast as they need her to.  Also, he said, EEN will create more bowel movements because it uses the GI system and we don't want her to have that much output.  So for now at least it is TPN.  He said she isn't eating enough food to make a difference in the bowels.  

I pushed him more on the home plan and he feels strongly that A)just like drugs, EEN does not work as well each subsequent time you use it B) her system is not healthy enough to absorb enough calories and she will start to lose weight again even if we drip formula 24/7 C) EEN doesn't work as well for colonic disease as it does for small bowel...Yes, I told him we used it before with great success to treat flares but he was't buying...flares are one thing this is another...In the end he said we could discuss it more next week.... 

SCREEECH!  Did you hear him sneak in that "next week". what happened to the resident's opinion of today maybe Thursday?!  I knew something smelled fishy.


----------



## Tesscorm

I'm a bit confused....  why are they talking about EEN being a treatment?  TPN isn't a treatment, it's simply to provide her with calories and nutrition.  Once she stabilizes, why can't EEN take over that job.

As far as calories, S was taking in 3000 calories per night.  That worked out to 2000 ml of liquid and he was able to ingest it over 8 hours.  If 3000 calories was enough for a 16 year old boy, playing on two hockey teams and still allowed him to gain approx. 10 lbs, it has to be enough for O??  And, granted, I think S was able to ingest quite a bit on an hourly basis without a problem but, even if O had to spread it out over 10 hours, it would be doable.

(Of course, this is assuming there is sufficient improvement in inflammation to allow her to absorb...)

It sounds like TPN is what she needs now but I'm not sure that EEN (at home) needs to be completely ruled out a couple of weeks from now??


----------



## my little penguin

^^^^ yeah that and then some 
Ask specifically about short gut 
Kids on amino acid based only have very little output 
Why because amino acids are as far broken down as you need 
Very little to no waste so constipation is more and issue 
And only a few inches ...
As far as complete nutrition calling bull#### on this one 
You can get all the nutrients you need 
Including Ds 15 anywhere from 2600 to 3000 a day 
I think o would be fine with less 
No tpn at home again bull
That’s stand of care prior to surgery 
Can you get out and transfer for a second opinion 
This doesn’t not seem right on two many levels


----------



## my little penguin

Wait and solid food at home will have less output ????!!!??!?
On what planet
They aren’t saying something
Big hugs


----------



## pdx

^^^ In agreement with the committee. If she did EEN it would be for nutrition, not treatment (although she might get some benefit), and elemental EEN would be easier on her gut than the currently allowed "eating for comfort." I would ask for a trial of elemental EEN while you're already there. You'll be able to see how her body does with it and how she feels. E felt so much better within a day of starting EEN, and like Maya mentioned above, it was such a relief for her and us to no longer need to cajole and stress out over food intake.


----------



## Jo-mom

I think all the wise mothers above have spoken and they all make sense to me.  Holy cow what a dilemma.


----------



## Maya142

Yes, definitely agree that EEN is WAY easier than solid food! And elemental formula tends to cause constipation, not diarrhea. So if you used Neocate or Elecare (we used Neocate Splash, unflavored), then hopefully that should not cause too many BMs. You could also always try it and if she goes from having 4 BMs to having 20 BMs then clearly it isn't a good option.



> She CAN eat for comfort if she wants but she is getting everything from TPN. He said, the problem is that they can't send her home on TPN. You can bet I questioned that....of course they can...he said they don't.Don't and can't are two different things. I asked if they could send her home on EEN and he said no not really. So I said, "then the choices are here on TPN or home on food".


I'm also confused about not going home on TPN - when M was very underweight, that was discussed with us. They either leave in a PICC line or put  in a tunneled central catheter or line (I think that's what it was called). And you do TPN at home, with an IV pump, much like you'd use a formula pump for an NG tube with EEN.

I understand the need for TPN now but going from TPN to solid food seems like a big jump, when there is an in-between, safe option like EEN. You can probably do up to 2500-3000 calories if you run the feed for 18 hours. That's what we did when M needed about 2500 calories to gain weight. She got 6 hours off the pump, which was nice, but we could have also run it over 24 hours. They give you a little backpack and she just carried it around. She did that for 3 months.

I do get that right now she isn't healthy enough to absorb formula. But maybe in a couple weeks? Given her dramatic weight loss, they'd probably want to start it inpatient, to watch for refeeding syndrome.


----------



## crohnsinct

You guys are preaching to the choir!  

Personally I think it is one of two things.... 

A) prep for surgery which is probably sooner rather than later 

or 

more likely 

B) this doc isn't familiar with EEN and/or he doesn't agree with our GI that all she needs is some bowel rest and nutrition for now. He was the guy in charge when all this eating bullying started.  I personally think he just thinks O needs to eat more and that she is being difficult and has eating issues.   It makes sense.  Why else would he start this onslaught of eating discussions, calorie sheets, meetings with Rd's and threats about going home andt then tell her that TPN and EEN aren't options.  Even the nurses are saying things like, "if you go home on TPN" so I know they do it!  I think he is a bully and I am glad I pulled our GI in and plan to keep pulling him in until the nice lady GI comes back on service. 

Since the big issue is the here and now and I agree on the TPN fronting I will play nicely.  I will check in with her GI later or tomorrow and start a conversation with him about EEN.  He was willing to ty it back in March instead of vancomycin or steroids.  It was O who said no because of finals and stress etc.  So I want to know what's sense is.  I do know he does not like to send patients hoe on TPN because of infection risk etc.


----------



## pdx

OK--I'm not a doctor, and I'm not there, but I would be very wary of agreeing to surgery right now. The doctors who have seen O have been all over the map with their diagnoses and treatment suggestions. Heck, until 2 months ago, her own GI called all her symptoms IBS despite obvious flare symptoms for years. These are not people whose opinions I would take as to whether surgery is necessary or not. At minimum, get a second opinion from a different medical group before making such an irreversible decision. EEN seems like such an obvious choice here in terms of giving her colon a chance to actually heal while waiting for Entivio to kick in. IV steroids also seem like a really important thing right now, so I would try to keep her on those as long as possible, rather than switching back to oral too soon. 

Maybe surgery will be necessary, but I guess I would just want to make sure that every other possible treatment was tried first. 

Big hugs to you and O.


----------



## my little penguin

^^^^ yeah that !!!
Very nicely said pdx


----------



## crohnsinct

I agree guys!  Believe me I do!  And I think HER GI wants to wait the full 24 weeks to see if Entyvio will actually kick in.  I think putting her on TPN is an effort to give Entyvio the strongest body and chance to work.  I basically think he has the right idea it is just not being carried out the right way here at the hospital. 

All this said, I did get a second opinion from her old GI.  I sent EVERY record I had for her.  The MRE report and images and everything.  The only thing he didn't get was path slides.  He said in his opinion she is headed for colectomy.  He feels that even though it is reasonable to not see Entyvio handling the full disease burden at 10 weeks we should see some move toward getting better.  Instead she is needing iv steroids to keep bleeding to a minimum and is still actually bleeding a bit even with that.  He says true her body is very mal nourished and this could be contributing to making Entyvio have to swim up stream but again...she got this way on 30 mg's of steroids.  He has been around long enough to say that we should basically be hoping for the best but preparing for the worst.  

I will still get third opinion.  He is too close to the situation having been her doc for 7 years and having seen her septic in ICU fighting for her life.  I think his view is skewed.  Just trying to see if there is a really good adult GI on a tropical island somewhere


----------



## my little penguin

Mayo Clinic 
Minnesota 
#1 ibd program for adults 
They will leave no stone unturned 
Call for an appt now


----------



## Jo-mom

Another professional opinion can't hurt.  Good luck in your search.  If anyone can find another opinion, it will be you.  Big hug and support.


----------



## my little penguin

Inflammatory Bowel Disease Clinic - Overview
					






					www.mayoclinic.org
				




See I googled for you


----------



## Jo-mom

You rock MLP!


----------



## crohnsinct

You crack me up MLP!  OK I will contact them in the a.m..  I already called my favorite adult GI in Chicago and he will review her records and get back to me within three months and then if he takes her case he will see her by December!  LOL!  

I am still going to call Cleveland Clinic also because they supposedly have the #1 color rectal surgeons so IF we move to surgery I want them to weigh in.


----------



## Optimistic

Hi I’ve not been on here in years (password issue) but something pulled me to it now. I am so sorry that O has gone through so much and hope this turns in better direction soon.


----------



## Maya142

Cedars Sinai Medical Center also has a good GI dept. - in the top 3 for adults, I think. And that's in LA, so while it is a trip, it's not a long trip.

Cleveland Clinic is #2 I believe.

In theory, I definitely agree you need a second opinion, but practically speaking, it can't be until she is well and stable enough to travel...and right now, to me it seems that she is not quite stable enough to travel, since you are depending on IV meds.


----------



## crohnsinct

OK Committee!  Here are the goings on today...subject to change thousand times of course

O has gained almost another pound!  Thank-you TPN!

They are switching her to oral steroids.  They switched her from prednisone to prednisolone.  They don't want to assume the oral steroids were not working and are testing a theory that maybe O does not convert prednisone to prednisolone well and maybe that is why she continued to flare even on prednisone.  They are thinking that because she does so well on IV steroids but tanks once moved to oral.  I don't 100% buy that theory because she has done fine on prednisone in the past.  I think it is more likely intestinal inflammation interfering with absorption but I will play nicely.

They are discontinuing the triple antibiotic therapy and considering it a fail. 

Periactin is dc'd. 

They are decreasing her TPN a little bit.  They will let her do 6 hours less for now (adult guideline...pediatric is no more than a 4 hour decrease at a time).

All these changes are being made inpatient so we can watch and see how she does and not risk sending her home and tanking and having another admit. 

New discussion is that she might go home with TPN but we will assess that after the weekend.  YEP!  AFTER the weekend which means I need to do laundry


----------



## my little penguin

Tpn at home I consider that a win
Except discontinuing everything else and changing to oral pred
Could be .....
Well you know 
Hugs


----------



## crohnsinct

my little penguin said:


> Tpn at home I consider that a win


LOL!  Baby steps.  Today TPN.  Tomorrow EEN.  O's GI is in clinic on Fridays.  Hoping he is working tomorrow and hoping he takes a few minutes to stop by. Will work him over on the other stuff. 


Oh and forgot to mention...he also said, "Maybe the entyvio is kicking in and the improvement is really just that and has nothing to do with TPN, Antibiotics or steroids".....Your welcome!  I will be appearing nightly!  Don't forget to tip your server!


----------



## my little penguin




----------



## Maya142

> Oh and forgot to mention...he also said, "Maybe the entyvio is kicking in and the improvement is really just that and has nothing to do with TPN, Antibiotics or steroids".....Your welcome! I will be appearing nightly! Don't forget to tip your server!
> 
> Like Reply


HAH I can see you call him a clown  !!


----------



## crohnsinct

Happy Fri YAY! 

O has gained more weight!  She is now up 6 1/2 pounds.  

CRP has gone down a lot more.  There was some confusion about her levels before.  They were reporting in a different measurement than her level from last Thursday (infusion).  So in actuality when I reported they went down 70%, they actually more than doubled between Thursday and Monday.  BUT the good news is they are down to around the levels they were at last Thursday.  Her GI feels the CRP is unchanged in terms of general trends and wants to see them go down another 2/3's. He is also suspect of the weight gain and wonders how much of that is simply the fluids.  

O had a GREAT day yesterday.  Color back in her face, more energy, no nausea, ate like a horse.  We are thinking that is attributable to the dc of antibiotics.  

However, last night she hit a snag.  Abdo pain, waking up for a BM and the appearance of blood and liquid BM.  

Her GI is not too concerned about the blood.  Says that could be the new lining pushing off the old diseased lining and we should expect some blood if not even a little increase...so we are to watch and wait.  

They are cutting her TPN in half tonight (so only 8 hours) and then tomorrow night will dc TPN and see how she does and hopefully discharge her Monday without any supplemental nutritional support....doesn't mean we can't supplement on our own though


----------



## Pangolin

crohnsinct said:


> ...ate like a horse....
> 
> Abdo pain, waking up for a BM and the appearance of blood and liquid BM.


I don't think she should be having any regular foods while on TPN and in need of gut rest and while you're already thinking about EEN after TPN.


----------



## crohnsinct

Plan hasn't changed much except they are now hoping to discharge her Monday and will send her home with the PICC line and are seriously considering night time feeds.  No I haven't asked about EEN.  There are so many moving parts for now I just have to play nicely and wait to get the heck out of here and then when in clinic with her GI we can discuss EEN. 

Her levels came back for Entyvio.  She is at 11 and her GI says that she needs to be >20.  She is at maximum dose allowed by insurance at 300mg every 4 weeks.  They are going to appeal to insurance and ask for 500mg every 4 weeks.  Hoping that because of ongoing inflammation maybe she is metabolizing the drug faster and just needs more for a bit and then can step down.  Fingers crossed insurance approves.


----------



## crohnsinct

O slid more last night.  Bad abdominal pain and nausea.  Refused dinner.  

BM's are back to bloody liquid.  

She has lost weight.  

There is really nothing more they can do for her here.  The plan is still to discharge her Monday but leave her on TPN.  They said maybe they can squeak out a few hours for the middle of the day where she won't have to be hooked up.  We have to wait to see about that.  

They really don't want to put her back on IV steroids so they are increasing her prednisolone to 40mg which they say is the oral equivalent of the IV dose.  Not sure exactly how much comfort that gives me given she is likely inflamed and won't absorb the whole amount but o.k. we will give it a try.  

Zofran for nausea and they never dc'd periactin for appetite so she is still taking it.  I will ask her GI if we can stop it once we are home because the team told him it was for nausea so pretty sure he will say no need for duplicate meds.


----------



## my little penguin

Here’s a thought 
Liquid 
Liquid is more easily absorbed than pills 
So what about liquid pred (prednisolone )
They give it to little kids 
Might be worth asking 
Hugs


----------



## my little penguin

> Oral
> By far the most common route. The passage of drug from the gut into the blood is influenced by biologic and physicochemical factors (discussed in detail below), and by the dosage form. For most drugs, two- to five-fold differences in the rate or extent of gastrointestinal absorption can occur, depending on the dosage form. These two characteristics, rate and completeness of absorption, comprise bioavailability. Generally, the bioavailability of oral drugs follows the order: solution > suspension > capsule > tablet > coated tablet.



From


			http://www.columbia.edu/itc/gsas/g9600/2004/GrazianoReadings/Drugabs.pdf
		



So they can’t argue with Columbia university 
Can they


----------



## pdx

One thing they could still try while she's inpatient is an NG-tube.  You might as well take advantage of her being there already for the next few days! It really seems like her body can't handle food right now; every time she goes back to food she regresses immediately. I can't figure out why all her doctors are OK with TPN combined with unrestricted eating (and are even giving her medicine to try to make her eat more), but won't even consider EEN. TPN is so much more drastic and risky than EEN. EEN is the only treatment with no risk factors, so why not at least try it?


----------



## Maya142

Liquid meds are a good idea - we actually switched most of M's meds to liquid after she was diagnosed with Gastroparesis. We did this even before she had a tube since her GI thought she would absorb them better. We now know from trial and error that liquid meds make a HUGE difference for M. For example, M's pain med -  same med, same dose, just in the pill form did NOT work for her. Once we got the liquid form, she felt a whole lot better.

Liquid pred tastes nasty...bitter according to my daughter. But at least it works! She used to have it with chocolate syrup. 

As for the NG tube, it does make sense to me but not sure O would agree to it. EEN would definitely be better than eating for her gut...Their reasoning doesn't quite make sense to me. I know they said EEN would increase the number of BMs she's having, but surely eating would too! I would understand the TPN if she was on complete bowel rest and wasn't allowed to eat at all. But since they're letting her eat, I wonder why food over formula? Formula is a lot easier on the gut.

That said, O has been through a LOT in the last month so I can understand if she is reluctant to deal with one more medical thing...


----------



## crohnsinct

You guys rock with all your suggestions and worry.  

She is already on liquid prednisolone and omeprazole.  Thanks though.  

Her abdomen pain is getting worse and worse.  There is basically not any time of day when she is not hurting.  She is not eating food.,,voluntarily.  It makes her sick and hurts.  

I practically lost it today on the resident.  They came in at 11 and did their thing.  I had a terrible headache so laid back down and fell asleep.  O also fell asleep.  The resident came back at about 2 and was REALLY disappointed we were sleeping.  Gave O a HUGE lecture about getting up and out of her room and how laying around all day was making her feel like a sick person and making her worse.  I went off.  The only time the kid isn't in pain or nauseous is when she is sleeping!  Yes!  This hospital is gorgeous with all their fancy patios and gardens and such but there are only so many times a 19 year old can go and sit on a patio.  Plus it is hot outside and then she sweats like crazy.  The teen lounge is geared to video games and such and is closed on the weekend.  AND SHE HAS MONO!  I told him to back off!  Then he was talking about TPN and eating and I lost it again.  I said, "I don't understand your love affair with TPN". He mumbled some nonsense about NG tube and her stomach pain and vomitting etc.  I told him I would prefer EEN because of the TPN/PICCline risks but also because it could heal the mucosa!  He said they are considering a scope for O because they fear her stomach and TI have gotten worse.  I asked if they do a scope if they could place the tube.  O was a little freaked out by it and he said, "look!  She doesn't want. it."...ugh.  

I will discuss it with her GI on Monday.  It is exhausting bouncing between the in patient team and her GI and now to complicate matters we have a new attending!   

P.S. not sure how I feel about scopes.  What's the point? There isn't anything more you could do for the kid....unless we do the colectomy and then switch treatment to Stelara for the small bowel and stomach. 

Sorry for the rant.


----------



## awmom

Ohh crohnsinct! I am so sorry you are having to go through all this hospital ordeal.  It's enough trying to figure out a best course of action, but exhausting having to argue with a team of doctors/residents who are not all on the same page, and probably have limited understanding of how O his feeling and, it seems, about the disease itself!  It seems like all attending doctors should be going though her GI doc for any and all orders, barring emergencies, but I guess that's not how the system works.  Mostly, I am sorry O is feeling so poorly .  I also agree that complete bowel rest, at least until you are able to talk to he GI, would have no down side and might at least make things more comfortable for her.  I guess the longer term plan of EEN will be something O will need to feel more comfortable with.....what choices these kids have to make.   Regarding the scope, perhaps it may be more useful to do it after a given treatment or course of action, if still needed, to see if a colectomy could be avoided?  I now always try, when presented with these suggestion, ask myself "what will I do with the results", but in O's case, they are already doing as much as possible (or should be)as far as treatment, and I don't think anything will change with the new information, unless they are willing to not treat anymore and go strait to surgery.  The idea seems to me, is that they are still trying to see if they can avoid the surgery.....so I would imagine it would be better to treat aggressively and then see if a scope is needed to further assess.  I'm sure you've heard all of this before......Hope she is better today....sending warm thoughts.


----------



## crohnsinct

awmom said:


> I now always try, when presented with these suggestion, ask myself "what will I do with the results", but in O's case, they are already doing as much as possible (or should be)as far as treatment, and I don't think anything will change with the new information,


Thanks awmom!  I honestly don't know what I would do without the committee!  You guys understand in a way that no one else can and are all so giving of your time and support! 

THIS is exactly what I said.  If you scope and find small bowel disease how will you change treatment?  If it won't change the course then why do it?  The only reason I see to do it is in the case of surgery because she needs healthy small bowel to pull through for the ostomy.  So if we are not at the point of surgery and there are no treatment changes to make then why do it.  

She thinks she is going home tomorrow so if they say she has to stay to do scopes she will freak out on them.


----------



## my little penguin

I would prepare O
Odds are good she isn’t going home soon
Oral pred isn’t absorbing 
She is losing weight 
Bleeding 
Not able to eat and in pain
So not stable at all
And that is on tpn plus Entyvio plus oral pred 

Scopes are to decide if surgery is an option
Prior her small bowel was ok not the best but mildly inflamed 
Odds are that is not the case now and they need to know 

That’s why they are scoping 
Similar to periactin 
They are not telling the whole story 

Prepare o for staying longer


----------



## crohnsinct

MLP!  You are clairvoyant!

Going home tomorrow is on hold.  Could still happen but they want to see if they can figure out this lower abdomen pain.  Giving her an antacid type thing to drink to treat possible gastritis.  If that helps then we could go home.  If not......

Also adding suppositories back in to see if that helps with bleeding.


----------



## my little penguin

Probably Carafate coats the belly 
Sounds like scopes in the future soon


----------



## Jo-mom

I was away at a friend's cottage and was hoping to read some positive news posts upon my return....  Soooooooo sorry this is still happening - so many good suggestions given here.  I don't have anything to add in terms of treatment but I am adding my support and  positive thoughts.  I am hoping someone is personally give you some support while you are being a rock for your daughter.  Either way, we are here for you.


----------



## crohnsinct

They wrote the script for Maalox AND Carafate...the nurse says it says as needed and that she doesn't have to take both.  The nurse said in her experience most patients have better luck with he Maalox.  

You don't suppose they meant for her to take both do you?  On top of a PPI?  That sounds a little like over kill to me.


----------



## Jo-mom

These essentially do the same thing so I don't think she should be taking 2 additional drugs - go with the Maalox.  Why would they prescribe two anyway.  This doesn't make sense to me.


----------



## my little penguin

@Maya142 
I forgot which combos are which 
I know Ds has done ppi or Zantac plus Carafate 
For a while 
....


----------



## crohnsinct

Well she ate a bagel and had pain bad enough to stop playing a game downstairs wither sisters and crawl back into bed.  She took Maalox.  Resident checked in before going home.  I wasn't here but she told him it didn't help and he said, "well if that didn't help it is likely not gastritis and you will probably need a scope...maybe no prep because we only need to see top part...maybe since you are getting it done do both...maybe we could just put a camera down your nose...maybe we still let you go home tomorrow and you can come back for scopes....you can lay around at home in pain just as easily as here...

Have you guys ever heard of the camera down the nose thing?  For Crohn's?  I don't think so! 

And I would thank you kindly to stop thinking out loud in front of my daughter!

Luckily she inherited some of my genes and said, "but X (fellow) said discharge tomorrow is tentative" and he admitted that pecking order goes, intern, resident, fellow, attending and that his opinion doesn't count for much.

Guess we will see in the morning.  In my opinion I say just keep her and do it now.  PLUS - I want them to give her an ng tube and prep her with that...can that be done?  I really don't think that feeling the way she does she will be able to prep by drinking.  I get it all still goes to the same spot and that she still might vomit and all but at least we avoid all the pressure to drink.  Just let it drip down there and let the chips fall where they may. 

But I guess if I want the really good head of endoscopy, we may have to leave and come back.


----------



## my little penguin

No drip 
Bolus large amounts through the tube at once 
They still need to get it put in while awake if she is using it for prep 
Vs placing it while under during scopes 
Ent does the nose scope 
While awake -not sure if they go all the way to duodenum though ???
If she goes home 
Your prepping at home 

Ds has learned to ignore residents 
We saw one last week prior to attending coming in
The doc had lots of ideas and thoughts
Ds looked at him like he was crazy 
At the end resident knew Ds wasn’t buying what he was selling 
Resident then said “well it’s not up to me ...
Big boss gets to decide what is what ..”

I would point blank ask who is doing scopes for inpatients 
If that changes and if it’s different than outpatient 
They won’t be too offended


----------



## crohnsinct

LOL!  It is sad how beaten down these residents are that they are even admitting to patients that their opinions don't really drive anything.  Funny, last admit Olivia said, "did you see that" and I said, "what?" she said, "the fellow was talking to us but I didn't see the attending lips move once".  Her reference being that he was obviously given a script of what to say and didn't deviate one bit.  LOL!


----------



## Pangolin

crohnsinct said:


> Well she ate a bagel and had pain


I think I see the problem here. In my opinion on TPN she should be having no food at all until she switches to formula only (elemental or polymeric, depending on absorption), as tolerated.


----------



## Maya142

M takes both Maalox and Carafate. They work well for her gastritis with a PPI. I would say if you’re going to do only one, make sure it is carafate.
Maalox has magnesium in it and can cause diarrhea if you have a lot. M doesn’t usually have diarrhea with it though and but now she takes it only once a day. They are often used together for bad gastritis.
As for prep, yes it can be done with an NG tube. You can ask for low volume prep (not Miralax and Gatorade) since she won’t be tasting it. We have done both the drip method, having the prep drip all day and the bolus method. The bolus method worked better for us BUT M has really poor motility and O is already having diarrhea so dripping it may be feasible. The bolus method did make M nauseous but we were able to control how much we gave her at a time and that helped(for example 4 oz every 15 min, instead of 8 oz every minute). That helps but either way we have to start earlier than normal (partially because it’s slower and partially because M’s motility is poor).
I am wondering if you would get new info from the lower scope? She had one so recently. And making her prep will cause weight loss. The upper scope you can do without prep - just no eating after midnight.


----------



## Maya142

Oh and if she is doing either prep through an NG tube or orally, she should take zofran!! They can give IV Zofran if she needs it. We always use the oral disintegrating kind but IV works better I think.


----------



## crohnsinct

Ahh good point on the zofran!  We are new to this. 

O took the concoction and it didn't help the pain. So they are less suspect of gastritis. 

O feels strongly that if they go in she wants them to look at colon. She wants to know if the steroids are working.  It may not be something they want to do given the looks of things the last time and the concern over perforation. But they did say if her transverse colon is really bad it could also be causing this pain. 

It is 4 am here and so far she hasn't woken up for a BM.  That is one of the boxes they check for discharge. Also pain went away last night. I am thinking if she has gained weight and if I pass my TPN lesson she will probably go home and they will let her GI decide when she sees him on 7/12 how to proceed.


----------



## Jo-mom

Obviously you aren't sleeping.  Fingers and toes crossed for good results.


----------



## Maya142

> O feels strongly that if they go in she wants them to look at colon. She wants to know if the steroids are working. It may not be something they want to do given the looks of things the last time and the concern over perforation. But they did say if her transverse colon is really bad it could also be causing this pain.


As sad as it is, it's great to hear she cares and has an opinion now! I feel like just a few months, whenever the doctor asked her anything she'd say was fine and if he asked if she wanted to change things, she'd say she didn't know. So while I wish she didn't have to deal with all this and that it had never happened, but she has grown up so much and is becoming a great advocate for herself!

So no improvement at all with Carafate? I will say that it doesn't work overnight or immediately for M. She has to take it regularly for a few days at least before seeing a difference.

It could certainly be referred pain from her colon...But I'd be more comfortable if they did an upper endoscopy too so we know how her stomach and duodenum look.

Any luck on the Entyvio appeal?


----------



## Maya142

> No drip
> Bolus large amounts through the tube at once
> They still need to get it put in while awake if she is using it for prep
> Vs placing it while under during scopes


Wanted to add that placing an NG tube is uncomfortable but there is no way it's worse than a PICC line and a lot of the other stuff that she has dealt with. Just make sure it is a 6Fr (6 French is the smallest size) and that she drinks while it's being inserted - it slides right down. She might be uncomfortable at first but it shouldn't be terrible. M was terrified of inserting herself but found it surprisingly easy and actually more comfortable than when the nurse did it the first night she used it. 

It's a very thin tube and she is a real trooper - I think it will honestly be a lot easier than drinking the prep.


----------



## crohnsinct

I don't think we are staying.  I think her GI has had enough of this nonsense and wants her out and back under his control.  I think she will be discharged today and if he deems scopes are needed will schedule them with the endoscopist guy who he says is really great and the guy he hand picked for O back in the beginning of May. 

It is just 10 a.m. here in CA so no word on appeal yet.  I would be surprised if they even filed it yet. 

O gained some good weight.  Up to almost 117 again (there may be a fudge factor in that they weighed her with her tubes and clamps and fluids etc but it is a gain nonetheless). 

She was woken once at 5 a.m. by what she says was passing gas and some stool coming out.  Got up and went to the bathroom and had a liquid and blood BM followed by some mush.  Told me no pain.

Resident came in and she admitted pain.  She said no night time waking for BM and said just that gas with some liquid stool and he said, "Oh!  So night time stooling,  just no waking"...shame he is done today...we are just starting to like him. 

She just went a second time today and all blood.

They ran CBC and CRP today along with the regular renal panel etc to check on TPN.  CBC and CRP are usually only run at admit  to check on therapy at some point and ten again to see if the patients dischargeable. 

So IMHO looks like we will be getting out of here today.


----------



## my little penguin

Fingers crossed and toes and noses


----------



## xmdmom

I have been away from the forum and am just catching up. I am so sorry that she's been so sick and had so much pain.  I just want to send a lot of hugs and my hope that the doctors can get her illness and symptoms under control really soon.


----------



## crohnsinct

NOT GOING HOME!  

Testing for c diff now. 

I get it.  I don't have to like it.


----------



## my little penguin

What the 
They won’t know CDiff for days 
That is bull


----------



## crohnsinct

They say it comes back fast.  Possibly late tonight or tomorrow the latest.  My bets are on tomorrow since it is already 11 a.m. here.


----------



## my little penguin

You can wait that out at home
Not that fast ...
Ever


----------



## my little penguin

It’s not CDiff 
It’s bad crohns period


----------



## crohnsinct

Yeah, I am not feeling the C. Diff vibes but I will play nicely.  The room is quarantined now. As if I wasn't climbing the walls already.


----------



## crohnsinct

and P.S. more than one member of the committee was wondering about c. diff. yesterday so Committee 1 Physicians 0!


----------



## Tesscorm

I have nothing to add that the committee hasn't fully covered! 

But, just want to say again how sorry I am that you and O aren't much further ahead...  if anything, it seems more question and problems keeping hitting you!  Lots and lots of hugs..  I really hope she can get home soon and back to her own GI!


----------



## pdx

Thinking of you guys. Thanks for keeping us updated--I hope the c. diff results come back quickly!


----------



## Maya142

It should come back fast inpatient. I think it took us a day. 

Glad to hear the committee was correct (well, not really glad because I don't want her to have C.Diff!!!). Doxycycline is known to cause C.Diff...I kind of wish they had kept her on Vancomycin.


----------



## Maya142

> Yeah, I am not feeling the C. Diff vibes but I will play nicely. The room is quarantined now. As if I wasn't climbing the walls already.


My kiddo was quarantined for 8 days due to C.Diff! Drove us totally insane. After a while when her tests came back negative, they relaxed quarantine enough to let her walk around in the halls but she still wasn't allowed in the teen lounge or playrooms!

Needless to say, we were thrilled to go home! Hope O will be allowed to go home tomorrow.


----------



## crohnsinct

Well the thing is that C. diff would be an easy answer and fix and would potentially mean that her Crohn's really is under control.  I guess we would have to treat the c. diff and see if everything else (symptoms and labs) calms down.  

Why on earth did they keep her for 8 days?  I was thinking that after she gets a C. Diff dx we would get the meds and be on our way.  M must have had to stay for other reasons also.


----------



## Maya142

> Why on earth did they keep her for 8 days? I was thinking that after she gets a C. Diff dx we would get the meds and be on our way. M must have had to stay for other reasons also.


Oh this was during her recovery from her major jaw surgery...one night she had bad diarrhea and an accident, and then continued to have diarrhea, and because of her past history of  C.Diff, they had to check. But once they checked, they still didn't relax the rules completely for reasons I don't really understand.


----------



## crohnsinct

Oh phew!  You scared me! 

They said something here about a repeat test 24 hours later if the first one came back negative because of a delay in positive results.  But that wouldn't explain 8 days!  

The suspense is absolutely going to kill me!


----------



## crohnsinct

C DIFF TEST IS NEGATIVE. 

Darn. 

Not sure what happens now.  Discharge and come back for imaging or scopes?  Go back on IV steroids?  Increase dose of oral steroids? Stay inpatient and scope/image?

Been to bathroom 5 times today. 

Really doesn't feel well and in so much pain she got off the phone with her best friend who she hasn't spoken to in months. 

She is going to try the Carafate now just in case that will work better than Maalox and see if maybe this is gastritis.


----------



## Maya142

Oh poor O. Is  she on complete gut rest right now? I wonder if that would hurt less than eating? She could drink a couple shakes in the day if she's starving - it's easier on her belly than food.


----------



## my little penguin

Second shakes instead of food woth tpn 
I know I know 
They don’t like een


----------



## crohnsinct

She is on self imposed gut rest.  No interest in food.  Just water.  Not even hungry.  Guess TPN is doing its thing.  At rounds they actually asked the attending if he wanted calorie sheets put up.  I inserted myself and said, "no point...she isn't eating and if she does it s like 300 calories". in other words, don't waste the paper or my time. 

I get it.  They are trying to calculate her TPN for when we go home.  Just tired of ridiculous questions and theories etc. 

Wow I sound cranky...I need a nap....or wine!


----------



## Maya142

Nap and wine by the sound of it!! Poor O. I hope they will figure out a plan. If she's eating that little, she probably needs enough TPN to count as complete nutrition. That's how we did it with formula when M could not eat. We gave her 2000- 2400 calories of formula but let her eat too, since she was eating 400 calories at most and her GI didn't think that was significant.

I really hope Carafate is an easy fix. We always need to give it a few days. In the mean time, I'd choose very bland food in case it is gastritis. For example, a lot of cheese always makes M's gastritis worse. So we stick to very plain food when she has gastritis.


----------



## crohnsinct

She took the carafate and said that she thinks she feels better...cautiously optimistic.


----------



## Jo-mom

I think when O is out of the hospital, you should patent your new game of Committee vs Doctors - object of the game-- who can come up with the best way of fixing O.  Wine glasses represent the committee - golf clubs represent doctors.  The Commmittee would win most of the time, of course.  Big Big Hug.


----------



## Maya142

I vote we drink a glass of wine every time the doctors are wrong/dumb/annoying   .

Fingers and toes crossed that the Carafate helps. They told you that it has to be taken about an hour before/after meals or before/after meds, right? I'm sure they have but since the attending is a joker, figured I'd check. We have a hard time fitting it in because of M's crazy medication schedule, so we try to get it in twice a day but often it's only once.

But whenever M's gastritis is bad (such as now), we make sure to find a way to give it twice a day and we add Maalox/Rolaids as needed.

Tell O to hang in there!! She'll be home soon hopefully.


----------



## crohnsinct

Haha NOPE!  They didn't tell us the timing thing. Just said she could take it up to 4 times a day. 

She took it about a half hour after eating and it seemed to help. 

Low grade pain returned in middle of night but she didn't take anything for it.


----------



## Maya142

It has to be spaced from meds because it could interfere with absorption of those meds. With food, less of an issue, but it can't coat the stomach well if there is food in there.


----------



## Maya142

Honestly, I'm kind of shocked they didn't tell you that. For example, if you were to give O Carafate and Prednisone at the same time, she probably wouldn't absorb much Pred at all. And that would be BAD.


----------



## crohnsinct

O has gained more weight.  Up to 117.7!  

She went to the bathroom 8 times yesterday.  So far 5 times today and it is 11 a.m..  Urgency seems to be picking up as is blood and frequency.  

Docs rounded.  They brought in calorie sheets.  Never a good sign.  They want to get calorie counts so they can order the proper level of TPN.  I had a feeling that meant we are not going home so quickly offered o fill out a sheet for yesterday to speed this thing a long.  

O asked does this mean I am not going home and the doc said the issue is TPN.  The hospital can not take her on as a client because they are maxed out and don't have the equipment or resources to support her at home.  So they are looking for a private agency to take her on which means that now her doc has to manage the situation.  It is proving difficult to find someone but they are working on it.  They say to prepare for another couple of days. 

He made some reference to eating and calorie counts and again told Olivia the sooner she can eat most of her calories the sooner she could get off TPN.

I took the opportunity to ask ONCE AGAIN about EEN.  I said, if you can't get TPN how about we try EEN. They caved!  So we are getting every manufacturer and flavor delivered to the floor and O can feast on formulas all day.  My secret goal is to get her to drink enough that they say, "oh look!  TPN is not required" .  

The problem is her insides are NOT healed.  As long as they are not healed 300mg of Entyvio every 4 weeks is not ever going to kick in.  They are keeping her on 40 mg of prednisolone to hopefully hold her disease until the point where Entyvio can kick in.  Steroids don't heal and neither does TPN.  EEN can heal. He disagreed with EEN healing colons.  

I basically nagged them enough that they had to give in.  I said, "I am not asking you to disconnect TPN but what does it matter to you if she eats or drinks her calories?" and he couldn't fight that.


----------



## Maya142

Way to go CIC!! SO glad you got her some formula. EEN can heal - didn't she use EEN after diagnosis - when Remicade hadn't yet kicked in? And it worked back then, despite the fact that the disease was in her colon. Plus it can't hurt, so there is no harm in trying it! And hopefully it will be easier on her gut and give her enough nutrients to heal.

What formula are they letting her try? Peptamen?

In terms of TPN, couldn't you use any DME supplier that your insurance covers? We initially used homecare from our local children's hospital for tube feeding but after an insurance change, we have had to use Coram. I'm pretty sure they can provide TPN supplies just as they provide EN supplies (feeding tubes, pump, bags for formula, the formula and so on).

Any luck with getting a higher dose of Entyvio?


----------



## crohnsinct

So far the only thing they had on the floor was Pediasure.  They are sending up a bunch others.  For now she has only agreed to drinking it.  So technically I won on two fronts...A - with the docs and B - with O!

Yes, we can use a DME supplier. I guess they are looking for one who can take her on as a patient.  The case worker at the hospital is helping the docs office. 

No word on Entyvio.  I asked the attending and he said he knows her GI is working really hard with insurance and "other channels" to get her more drug.  He said she is on everybody's mind and they are all working hard to get her out of here and better.


----------



## my little penguin

The fellow can go to the Gi clinic and bring back samples of other semi elemental or elemental stuff 
How can the Gi floor not even have unflavored elecare or Neocate something isn’t right
The pharmacy carries one or the other depending on contracts for inpatient tube kids 
Plus always has at least one semi elemental 
Either peptide or peptamen jr 
Something doesn’t smell right 
Have the fellow or resident run over to the Gi clinic and grab samples
We made them do this for ds
They only had elecare jr vanilla or unflavored Neocate jr 
In elemental 
Which they said he needed at the time


----------



## my little penguin

Oh and the floor may only have pediasure 
But the hospital pharmacy has more stuff
Keep pushing 
Since semi elemental and elemental will be easier for her to absorb so your not circling back quickly since they won’t do tpn 
Which is garbage 
They are a hospital 
Where is the care


----------



## pdx

Great to hear about the EEN. When E was sickest, her body couldn't handle Pediasure or Ensure--she had pain and nausea after trying to drink them. She was OK with Peptamen, though, so I agree with MLP about trying some semi-elemental or elemental formulas.


----------



## my little penguin

Have them bring a cup full of crushed ice to pour it over 
And a straw 
Plus have her pinch her nose 
This hides the after taste 
Drink as much as possible in one sip to avoid the after taste 
As well as cold as possible 
Not frozen 
You can get Hershey’s simply syrup to add to semi elemental or elemental 
Ds said it helps a lot


----------



## Pangolin

crohnsinct said:


> She took it about a half hour after eating and it seemed to help.


Why is she eating anything, or eating anything except formula? Food is part of the cause here


----------



## Pangolin

crohnsinct said:


> He disagreed with EEN healing colons.


This guy is very, very wrong and dangerous.


----------



## Pangolin

I hope the EEN (or EEN plus TPN) helps, glad she's finally on that. If the formula is intolerable to her and she can't just rely on TPN, maybe she could still be convinced about an NG tube--could be better than drinking.


----------



## Jo-mom

Proud of you CIC!  You go girl - you fight for your girl.  It shouldn't be this exhausting though.  We are rooting for you.


----------



## crohnsinct

O.K. I just found out what the problem is with home TPN.  It isn't so much the equipment or the lipids.  Those are easy.  It is the TPN.  TPN has to be mixed individually for each patient based on the exact amounts of each electrolyte that they need and those changes daily or every few days based on labs and such.  So it is pretty labor intensive and time sensitive.  The new thinking is that they may be able to send her home on lipids and fluids mixed with a little bit of sugar (I think it was sugar).  That at least would get her home and maintaining weight.  Then if she could eat and/or drink EN hopefully she would be able to keep up all the micronutrients that she needs.  

We do have a training time tomorrow at 10:30 so that is encouraging that maybe they are close to an answer on home health care. 

No clue on Entyvio appeal or obtaining extra Entyvio through other channels.  I didn't think we would get that answer this fast any way but would be nice.  

The afternoon has ben quiet health wise.  No abdominal pain, quiet on the BM front.  O has already ned three different formulas.  I may have gotten her to agree to try but getting her to actually do it is going to be an entirely different battle.  Would help if we had an enthusiastic doc.


----------



## Maya142

Did they ever mention the Oley Foundation to you? It's like the adult equivalent of Feeding Tube Awareness (which was started by two moms) but it includes info on IV nutrition. They have a lot of info about it and even a supplies exchange (though that isn't for the TPN itself, just the supplies and tube feeding supplies and I think formula). Here is their TPN resources page:


			HPN (IV Nutrition) - Oley Foundation
		


Feeding Tube Awareness also has a supplies exchange, if you were to need formula or something.

What formulas did she try? Hope she can tolerate something semi-elemental - my daughter absolutely hated Peptamen at first but got used to it.


----------



## crohnsinct

Thanks! The supplies aren't the problem.  It is the TPN.  The mixing and delivering and such.  So far everyone they have called can not take on an additional patient.  I really don't mind moving just to fluids with a little sugar added and the lipids.  The lipids are the fats and I figure whatever I could get her to drink and if not drink eat will handle the electrolyte part.  At least I think we should start trying that and then keep looking for a TPN supplier.  At least that would get us out of here.  Whether or not it will keep us out of here is a whole other story.


----------



## crohnsinct

oops sorry.  As far as formula goes they are only bringing her polymeric formulas because she mentioned just drinking and no tube.  It will take me a bit longer to convince her and the docs for elemental or semi elemental.  But pretty sure tube or lose your colon would be a good motivator.  Just not there yet.  Also not 100% sure the docs would back me up on that argument as it may nt be scientifically sound.


----------



## Pangolin

It's possible she may not need elemental or semi-elemental and that polymeric is just fine. How can you tell?


----------



## my little penguin

When your colon is as inflamed as hers and her small intestine 
The more broken down the formula is the less healthy intestine is needed to absorb the nutrients 
Elemental is used in short gut syndrome for this reason 
Polymeric is better than eating solids but all of the chains are intact 
Semi elemental the chains are broken into smaller chains so the intestine/body has to do less work 
Elemental is broken down to amino acids (what the body does in its own woth whole proteins ) amino acids are absorbed easily abd only need a few inches of healthy tissue plus have the benefit of very little waste since it’s all amino acid and no intact proteins 

Can’t believe they are giving you so much grief on a standard of care


----------



## Maya142

Severe inflammation may make digesting a polymeric formula hard. My daughter had bad diarrhea with Boost, Ensure and Pediasure. Her GI really pushed a semi-elemental formula because those are partially broken down and so easier to digest. Our GI said MOST kids with IBD are able to tolerate semi-elemental formulas but some do require elemental formulas.

My daughter had diarrhea on Peptamen jr. too - we stayed with it for a whole month to see if her body would adjust. It didn't. 
So that's when we tried Elecare and Neocate Splash, since she was losing weight, not gaining any! The elemental formulas really do taste pretty awful though - my daughter says they taste like stinky feet! For her, they were just too difficult to drink, even when we tried all the regular tricks (cold formula, straw, mixed in crushed ice and chocolate syrup). So she really needed the tube and now she even says she wishes she had agreed to one earlier!


----------



## my little penguin

^^^^^yeah that
I will stress Ds started drinking semi elemental daily at age 7 before he knew he had a choice
He stayed on it till he had uncontrollable diarrhea for weeks at age 12
They told him inpatient either drink elemental or tube since he needed nutrition at home he could tolerate (tpn was briefly mentioned )
Ds  cried and agrees it tasted like rotten frozen French fries
But after two weeks of drinking it he got used to the taste
Now drinks 30-48 oz daily. Plus food

That said the first two weeks he really wAnted a tube could not stand it


----------



## awmom

N also hated drinking the peptament at first.  He started with the peptamen Jr but it was bothering his stomach, which we later attributed to the Sucralose since he cannot tolerate any of the artificial sweeteners.  So he moved to the adult unflavored one and did much better on that and 
got to where he didn't mind the taste at all....it saved him during his first year in college!  Having said that, I do wish he would have accepted getting NG tube, at least for night feedings, as he was never able to drink enough to maintain a good weight. 

It's all a process and hopefully O will be able to tolerate the formula in time. It's also good to know there is something to fall back on whenever there is a flair up.    In the meantime, I hope O is feeling better, and that you are able to sort the TPN issues.....


----------



## crohnsinct

Not a lot to report.  

She is stalled at 8 BM's a day, still seeing blood, H&H have decreased since admit.  

She has gained another pound. 

They tell us she is here to late this week early next.  

They are still working on TPN/nutritional needs etc.


----------



## my little penguin

You know my opinion


----------



## crohnsinct

O seemed to have a good day. 

Her GI checked in to let me know what was happening behind the scenes with Entyvio approval etc...basically nothing yet but we are hopeful 

I had just reported to him that she had a good day with only 5 BM's and very little blood. 

No joke as soon as I hit send she felt sick and ran to the bathroom with a big BM and blood!

He wrote back asking another question and I told him I spoke too soon.

Anyway, the point of all of this is to say that he agrees with the committee on bowel rest and that she needs either EEN or TPN with no food. 

Committee 2 Attending 0

Not sure how this is going to go down logistically but I will keep you all posted.


----------



## happy

I have been away for a bit and have only this to say: !
Sending big hugs.


----------



## crohnsinct

Hey y'all.  We are still inpatient.  Goal for discharge is Monday.  O will be discharged on lipids and fluids (with maybe some electrolytes and sugars added).  We couldn't get on the TPN service as they are maxed out.  Both Lipids and fluids will be delivered via her PICC line.  

She is up 8 pounds.  

They are cutting her over from TPN to the hydration/lipid mix tonight and using the weekend to watch her weight and make sure she doesn't slide or gain too much.  

Not going gut rest yet.  The inpatient team is not on board and with this new plan she won't get enough via IV to keep her weight stable if she stops eating.  I knew logistically getting them on board would be an issue.  

I am guessing she could theoretically just drink formula when we get out. 

BM's look good in terms of frequency and blood today so fingers crossed that continues.   

No word on Entyvio increase yet. 

Still on 40 mg prednisolone. 

O is supposed to fly to visit a friend for her good bye party (she is leaving the country for two years for mission work) but they are not approving the trip because of the PIcc line and the fact that any fever over 100.2 is an automatic admit but also because of her rebounding back into hospital for her Crohn's issues.  GI and Picc line docs wants her close to home.


----------



## crohnsinct

OMGOSH!  Just heard from the GI!  They got one dose at the 600 mg dose approved with the infusion being at the hospital infusion center!  More could potentially be approved with added documentation!  

This is AMAZING!


----------



## Jo-mom

Yay!  Dancing poop, dancing poop.


----------



## my little penguin

Wait .... What


Party time


----------



## crohnsinct

I know right?! 

Does this mean we have to give them a point?  Well, it was the pre authorization/appeals guy so I guess I don't mind giving away a point to someone other than the committee.


----------



## my little penguin

1/2 pt to them 
And negative 39 points for the rest of the “stuff”
If it works they get plus 100 
SOUND FAIR


----------



## crohnsinct

That is hysterical MLP!  

More goodness.  Our GI is doing some research on diet and a diet has crossed his desk that is showing very good results when combined with EN.  So PEN and this diet.  He sent her the list of allowed and not allowed foods and asked her to use it as a guide when eating.  

So at least now we have an action plan with regard to food.  I will let y'all know how it goes.


----------



## my little penguin

Would that be the crohns exclusive diet ????
Used pen and special diet list 





						New diet Ibd
					

http://www.researchgate.net/profile/Tsili_Zangen3/publication/263548102_Partial_Enteral_Nutrition_with_a_Crohn%27s_Disease_Exclusion_Diet_Is_Effective_for_Induction_of_remission_in_Children_and_Young_Adults_with_Crohn%27s_Disease/links/54b19a200cf28ebe92e18ee6.pdf  Anyone hear about this diet yet?



					crohnsforum.com


----------



## Jelly loves Peanut butter

I am just catching up here, been on vacation the last few weeks.    Poor Olivia has been through so much!  I am so sorry to hear all she has endured.  What a great mom and advocate you have been for her.  I will keep you both in my prayers


----------



## crohnsinct

Not a lot to report here except weight is dropping.  Dropped .4kg yesterday even with TPN and another .3 yesterday on just fluids and lipids.  Bummer.  I figure a fair amount of the up and down is fluid as that bag of TPN is HUGE!  Literally the size of a newborn!  The bag of fluids for last night is your usual fluids size, so at least half the size of TPN if not more.  

What do you think the discussion is going to be at rounds today?


----------



## my little penguin

Hmmm she can’t keep on weight 
Eat more and you go home 
Doesn’t matter that she doesn’t absorb the calories


----------



## xmdmom

I'm wondering how much weight she has gained over what period of time with what nutritional intake?  

If she's been gaining fast with not a large number of calories going in, some of this weight gain could be fluid weight, especially if her albumin/total protein are low.  Do you happen to know how many calories the TPN had been giving her during her period of weight gain and approximately what her oral calorie intake was during this same time?   And does she have a normal albumin and protein?

You are right that some of the variation in weight may be how they weigh her. 

I have been thinking of her and can't wait to see some really good news posted here!


----------



## crohnsinct

All excellent questions Xmdmom.  

I don't know her calories of TPN. 

Her GI isn't banking on the weight gain because he feels it is mostly fluid as well.  

Her albumin is low.  Went down to 2.7 and hovered there but as of ast Monday was 3.2.  Her protein has always been In Range at 6.5. Went up to 6.7 but as of last Monday 6.4. 

They pulled labs Thursday but those won't post until tomorrow. Then they will pull labs Monday. 

I am concerned about her electrolyte balance being off tpn and only on straight fluids. They will check labs again on Monday but if that is the day we were aiming for discharge. I wish they would check over the weekend so if adjustments are needed they could make them. 

Her oral intake ranges from 1000 to one day 2000. 

new attending rounded today. He is concerned with number of BM's and blood. He didn't look too enthusiastic about a Monday discharge. I think he is in the gut rest camp which would mean stay here on TPN. 

Stay tuned!


----------



## crohnsinct

O gained 1.1 kg!  She is at her highest weight since beginning of May.  

Only 6 BM's yesterday.  Blood is way down. No abdominal pain.  

Higher dose of Entyvio is coming in two weeks.  

We are feeling very positive!  

Sounds like we are on track to go home tomorrow!  maintaining weight on this pseudo TPN was the last piece of the puzzle.  Hopefully when we get home and she is under her GI's care again, she can start the slow taper of steroids.


----------



## crohnsinct

> Dr. Scherl: This is the first analysis of the ongoing LOVE-CD trial, the first prospective trial showing endoscopic response and remission rates with VDZ in CD. The investigators found that VDZ concentrations were significantly higher in patients with an endoscopic response than in nonresponders.
> 
> The investigators found that at week 26, 30% of the patients had endoscopic remission based on the SES-CD. The authors then go back and show that a higher proportion of patients who achieved endoscopic remission at week 26 had a higher VDZ level (20-40 mcg/mL). However, if the VDZ level was less than 20 mcg/mL, they had a very disappointing response, with only 11% achieving remission.
> 
> This is an important study because it underscores that if your patient is not responding to VDZ, you should check the therapeutic drug levels of VDZ before switching drug classes. If the patient is on an every-eight-week regimen, and if the levels are less than 20 mcg/mL, you may consider increasing infusions to every four weeks. On the other hand, if they are on every four weeks and their level is less than 20 mcg/mL, then you may consider optimizing the dose to 300 mg every two weeks or 600 mg every four weeks.


O's level was 11 so here's hoping the 600mg does it!


----------



## my little penguin

She has had multiple inpatient stays over the past month or so 
She would need to be  stable on the dose of steroids she in now for probably a few more months 
Remicade only takes 6 weeks to work 
Humira 3-5 months 
Stelara and entivyio both take 6-12months to work so until you reach the 6 month mark she will need a bridge of steroids then you get to wean 

Since Stelara or entivyio can’t do the heavy lifting until then 

Glad she is feeling better 

If she weans before then odds are good she will flare again and end up inpatient again


----------



## Maya142

YAY - so glad the higher dose of Entyvio was approved. Made my day . Really hope it will help O!!How's she doing today?


----------



## crohnsinct

UPDATE

New attending (who we really like) is completely on the same page as our GI.  

He mentioned today that while O is doing a lot better it is still a touch and go situation.  

He conferenced with our GI after rounds and they both feel she is not stable enough to go home and not have to be readmitted again in another few days to week.  They want her to stay inpatient until at least Tuesday.  Discharge is now Wednesday at the earliest.  

She is having more abdominal pain today.  She is due for her menstrual cycle but she says it is not the same pain...this from a kid who loves to put all her Crohn's symptoms down to menstrual cycle.


----------



## Jo-mom

I know it's tough to be at the hospital for this  long, but it is probably better to be safe, especially with what has happened in the past.  Big hug and  hopefully the abdominal pain is from her menstrual cycle.


----------



## my little penguin

More hugs your way !!


----------



## Maya142

Sending O many hugs!! I hope, for once, that she is wrong.
How many days have you two been hospitalized? I feel like once you hit 30 days, you should get a medal!! It is not easy to be in the hospital that long!!


----------



## crohnsinct

LOL!  Yes Maya...today was the 30th day!  I will be looking for my medal...at the bottom of the wine bottle.


----------



## my little penguin

Wow
You deserve a certificate


----------



## crohnsinct

Literally laughing out loud!  

You got that right!  Do you know how brave I am to go without my wine for 30 days?! 

Actually now that I think of it my friends and family probably deserve the certificate for putting up with me without wine!


----------



## pdx

Oh man--30 days is so much time in the hospital. But I'm so glad to hear that the latest attending is taking things seriously and talking with her GI. Hang in there!


----------



## Maya142

> Literally laughing out loud!
> 
> You got that right! Do you know how brave I am to go without my wine for 30 days?!
> 
> Actually now that I think of it my friends and family probably deserve the certificate for putting up with me without wine!


We've done 30 days in 1 year but spread over 4 hospitalizations. I can't imagine doing 30+ days at once !! You can have a whole case of wine when you are freed  .


----------



## Jo-mom

As a new member of this Committee, I second that!    You before wine , you after wine .


----------



## crohnsinct

O has lost 2.8 pounds and her H&H have gone down a little bit more but they are attributing all of that to fluids that she lost urinating a lot yesterday and e fact that they stopped O/N fluids.  She is able to drink 2 liters of water a day so they feel it is safe to discontinue the o/n fluids.  They will send us home with a few just in case bags of fluids and she will continue o/n lipids with PICC line for about 4 weeks.  

Attending feels she is stable (not great but not sliding anymore) and there is nothing they are doing here that we can't do at home.  They are not changing anything (unlike other times where they sent us home with sometimes more than one thing changing) so she shouldn't slip and actually might do better with eating at home! He is suggesting she be discharged today!  It's my birthday!  He is going to run it by her GI and going to use the birthday card!  

I feel really, really positive that we are going home today!  

Next Thursday is ENtyvio infusion at the higher dose.  Next Friday is appointment with her GI.  Next Saturday we start to reduce prednisolone down to 20 mg.  That will be the next hold your breath moment.  But for now I will just enjoy being home with my wine and birthday cake!


----------



## my little penguin

Wait what 
Reduce from 40 mg to 20 mg one week after higher dose Entyvio 
So she drops 20 mg in one week 
They don’t do that for remicade or humira
You stay at maintenance of pred until drug can take effect 
Which in Entyvio case is 24 weeks from start 
Remicade 6 weeks and humira 12 weeks


----------



## my little penguin

Dropping 2-5 mg a week is a lot 
2 mg per week would give her body time to adjust 
Less side effects that can attributed to a flare and allow entivyio time to work at the higher dose


----------



## crohnsinct

Yep....I would think down to 30 but I don't have a degree and years of experience.  He had said we had to taper VERY slowly last week but now he is being aggressive?  I think he is just anxious to know if Entyvio is working AND I think insurance is holding our feet to the fire because they only approved one dose pending what the outcome is of this infusion.  I think we won't know unless we really taper the steroids.  

I am wondering logistically if we restart the 12 week clock with the next infusion, as if she never had Entyvio or does the past 12 weeks at sub therapeutic dosing count for at least something?


----------



## Maya142

Very slowly is NOT 20 mg! Very slowly is 1 mg or 2.5 mg. We've done as slow as 1 mg per month.
I'm worried about her leaving if she is losing weight without TPN - what happened to gut rest? Will she be doing EEN?


----------



## my little penguin

But entivyio isn’t fast acting 
Regardless of dose 
It takes forever 
One dose 
Ugh


----------



## crohnsinct

Yeah I know Maya...I am really concerned about what will happen with that taper...and we will be away so it should be extra fun.... 

Yeah I know MLP but I think insurance is really guiding more of the decisions here...we may not get the added infusions approved it we don't drop the steroids...confused as to what they want to hear.....look we tapered and symptoms returned she really needs Entyvio or Entyvio doesn't work...or look we tapered and no return of symptoms Entyvio works.  While I am grateful beyond measure that they approved such a high dose and to be given at the hospital and only 4 weeks interval...I really wish they weren't micro managing this thing.


----------



## crohnsinct

GOODNESS!  

In true O fashion she has started to poop a lot more blood today.  Nurse is concerned and calling the team.  

They also came in to get an updated height so it sounds like maybe her GI isn't as comforted by the weight as the rest of us. 

We are on hold.


----------



## my little penguin

Oh no


----------



## Pilgrim

Quietly following. The discharge plan didn't seem great. But now it's a not-discharge plan. 
I feel like this whole eating thing is wrong. Give the gut a real break.


----------



## Tesscorm

I haven't said much because, really, what could I add  but, I am another voice with the gut rest!!  I can't imagine how hard and frustrating it must be to be the lone voice against attendings, residents, fellows, on-calls, GIs, etc....  ugh!!!

What if, while they fiddle with this and that, you just pick up some shakes and you and O simply decide to do EEN alongside whatever else they want to do...  lipids, no lipids, steroids, TPN, no TPN, etc....    It's not like they are saying 'no food'??

Gosh, I just can't imagine how frustrating this is for you and O!!  Wow, you and O are holding it together way better than I think I could! 

I realize I still haven't added much of value here, lol, but am thinking of you guys and hoping you get some firmer answers and a really solid plan soon!!!


----------



## crohnsinct

Thanks guys.  It is hard.  I sometimes feel like I am screaming in a room full of people and no one can hear me.  

I totally agree Tesscorm!  But all that changed with the diet request.
We could just ignore the food directive and do the shakes except the shakes have stuff in them that is not on the CDED diet and O and I are really bad liars....or fudgers even.


----------



## my little penguin

Actually cded diet is designed to allow a list of foods and partial een (aka shakes )
It was designed for folks who don’t /can’t do full een 
I can pull that part of the study if you need to for the Gi 
It is very clear 
Calories from the approved list abd rest from partial en 



> The CD Exclusion Diet (CDED) is a whole-food diet combined with exclusive enteral nutrition (EEN) designed to reduce dietary exposure to foods that might negatively impact the microbiome, the intestinal barrier and innate immunity.
> 
> Researchers conducted a 12-week prospective trial in 78 children with CD, whom they randomly assigned to receive either the CD exclusion diet (n = 40) or EEN alone (n = 38). The primary endpoint of the study was tolerance to the diet, which researchers measured by withdrawals for refusal to continue diet and poor adherence. They also assessed week 6 intention to treat remission defined by PCDAI of 10 or less and the more stringent definition (PCDAI<10), as well as corticosteroid free intention to treat sustained remission week 12



From









						Crohn’s Disease Exclusion Diet well-tolerated in children
					

SAN DIEGO — The Crohn’s Disease Exclusion Diet appeared to be an effective and well-tolerated, first-line therapy for children with mild-to-moderate Crohn’s disease, according to data presented at Digestive Disease Week. “We have emerging data to show the strong influence of the environment, and...




					www.healio.com
				





So shakes are required


----------



## my little penguin

Gi should have told you the shakes don’t have to follow the list since they are part of the een side of the diet


----------



## Pilgrim

I would feel the same about fudging. There is too much on the line if it all goes more south (to Antarctica? How far south are you at this point 30 days in???) Who could live with colectomy guilt if a personal medical decision is the last thing tried? CDED is normally a good diet and if you get the chance you could use it to keep food simple. Pureed. Soupy juicey.
Fudging is reserved for homemade mother's day presents. 
Can you get your husband to switch with you for a few hours so you can go for a walk? Good for the head space.
Happy Birthday btw! Lol!


----------



## crohnsinct

Oh right!  I forgot about that part. 

So if we do all her calories from formula it would technically be EEN with lipids and fluids.  Hmm.


----------



## my little penguin

> *Dietary Therapy With the Crohn's Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy.*
> Sigall Boneh R, et al. J Crohns Colitis. 2017.
> Show full citation
> *Abstract*
> Background: Loss of response [LoR] to biologics in Crohn's disease [CD] is a significant clinical problem. Dietary therapy as a treatment strategy in this setting has not been previously reported. We report the use of dietary strategies using enteral nutrition coupled with the Crohn's Disease Exclusion Diet [CDED] for LoR to infliximab or adalimumab as a single-centre experience.
> Methods: Patients with LoR to a biologic despite dose escalation or combination therapy were treated with partial enteral nutrition [PEN] by a polymeric formula and the CDED for 12 weeks. Paediatric patients with severe flares received 14 days of exclusive enteral nutrition followed by PEN + CDED as above. All patients were seen at weeks 6 and 12 for follow up. Current and prior treatment, Harvey Bradshaw Index [HBI], C-reactive protein [CRP] and albumin were recorded. Remission was defined as HBI <5 at week 6.
> Results: Twenty-one patients, mean age 22.1 ± 8.9 years [11 adults and ten children] met study criteria. Seventeen patients [81%] had used combination therapy, and 10/21 [47.6%] had failed a second biologic. Seven patients had a prior intestinal resection. Dose escalation had failed in 13/21 [62%] patients. Clinical remission by physician's global assessment and HBI after 6 weeks was obtained in 13/21 [61.9%]. Mean HBI decreased from 9.4 ± 4.2 to 2.6 ± 3.8 [p < 0.001], mean CRP decreased from 2.8 ± 3.4 to 0.7 ± 0.5 [p = 0.005] and mean albumin increased from 3.5 ± 0.6 to 3.8 ± 0.5 [p = 0.06].
> Conclusion: Dietary treatment combining PEN with the CDED may be a useful salvage regimen for patients failing biological therapy despite dose escalation.



From









						Dietary Therapy With the Crohn's Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy - PubMed
					

Dietary treatment combining PEN with the CDED may be a useful salvage regimen for patients failing biological therapy despite dose escalation.




					www.ncbi.nlm.nih.gov
				





I know because Ds was on it for more than a few months


----------



## my little penguin

Yep and if she “cheats” and eats a solid on the list ...
Not as big a deal 
Read the diet 
It has so many weeks of een then pen plus diet 
Etc...


----------



## crohnsinct

I caught one of the Fellows in the hall and asked if while they are conferencing they could please discuss one more time EEN with NG tube placed here and indwelling as O would not put in and take out nor will she drink at this point. Her response was a sobering, "all those studies you read are for mild to moderate.  O is very severe.  We are working on it and it is going to take time.  We will be in as soon as we have more information for you"


----------



## crohnsinct

YEP! MLP!  I have read a bunch of studies.  And here is one for you....no endoscopic confirmation but at least clinical remission.  









						Novel Diet Eases Crohn’s in Kids
					

Outpaced exclusive enteral nutrition for tolerance and efficacy




					www.medpagetoday.com


----------



## Guerrero

Hi guys , where can we find details on the CDED diet please?


----------



## crohnsinct

I think it is still just being used by a few clinics and they haven't really published info for the public.  There are a few things online if you google it. I will get you a very, very basic chart that I have with allowed and not allowed foods but it isn't truly the guidelines of the diet as used in clinical practice.


----------



## Pilgrim

Heartbreaking response from the Fellow.
Hugs.


----------



## crohnsinct

O went for a third time today and it was straight up blood, no stool what so ever.  

WE ARE NOT GOING HOME!

Oh well, at least we got one step closer.


----------



## Jo-mom

That is not the birthday wish I wished for you. 
So sorry.


----------



## Maya142

> I haven't said much because, really, what could I add  but, I am another voice with the gut rest!! I can't imagine how hard and frustrating it must be to be the lone voice against attendings, residents, fellows, on-calls, GIs, etc.... ugh!!!


This is so true - I know how exhausting it is to keep fighting. Doctor after doctor, your kid who is miserable and you never get a good night's sleep or a healthy meal. We're all rooting for you and for O. Really hope they can figure something out for her.



> I caught one of the Fellows in the hall and asked if while they are conferencing they could please discuss one more time EEN with NG tube placed here and indwelling as O would not put in and take out nor will she drink at this point. Her response was a sobering, "all those studies you read are for mild to moderate. O is very severe. We are working on it and it is going to take time. We will be in as soon as we have more information for you"


She really won't consider placing the tube herself? I can have M write to her about it. I feel like EEN is definitely a better option than food...I don't get how it could be worse for her than food. It has to be easier on that gut than food.

But it is worrying to hear that her disease is so severe... I hope they will consider TPN and NO food if they won't consider EEN.


----------



## Optimistic

Jo-mom said:


> That is not the birthday wish I wished for you.
> So sorry.


So sorry.


----------



## my little penguin

@ Guerrero 
Here is the full article 








						Dietary Therapy With the Crohn’s Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy
					

AbstractBackground. Loss of response [LoR] to biologics in Crohn’s disease [CD] is a significant clinical problem. Dietary therapy as a treatment strategy in th




					academic.oup.com
				





Here is the thread woth all the diet details when Ds was on it 





						New diet Ibd
					

http://www.researchgate.net/profile/Tsili_Zangen3/publication/263548102_Partial_Enteral_Nutrition_with_a_Crohn%27s_Disease_Exclusion_Diet_Is_Effective_for_Induction_of_remission_in_Children_and_Young_Adults_with_Crohn%27s_Disease/links/54b19a200cf28ebe92e18ee6.pdf  Anyone hear about this diet yet?



					crohnsforum.com
				





List of dos and donts 

They are listed in the appendix
Allowed daily meals : foods may be grilled fried baked boiled or broiled 
Unlimited chicken/fish
Fresh unprocessed beef steak ( lean meat such as sirloin ) once a week
White rice
Rice noodles
2 fresh potatoes peeled not frozen and not consumed at same meal
2 eggs 
2 tomatoes
2 cucumbers peeled
1 carrot ( shavings )
Fresh spinach ( side portion)
1 apple ( peeled )
2 bananas 
1 avacado
Few strawberries
Slice Melon
Allowed condiments for cooking 
Olive oil 
Canola oil
Salt pepper paprika cinnamon stick
Fresh herbs ( mint leaves oregano coriander Rosemary sage basil thyme)
Fresh onion or garlic or ginger
Fresh carrot shaving for salad rice or soup
True honey
Table sugar (2-3 teaspoons a day for cooking or tea)
Beverages -soda water , water herbal teas
One glass of freshly squeezed Orange juice daily ( not from cartons or bottles)


Not allowed
Dairy products of any kind margarine
Wheat breakfast cereal breads and baked goods of any kind yeast for baking
Gluten free products not listed above soya products potato or corn flour
Processed or smoked meats and fish (sausages luncheon meats salamis fish sticks)
Sauces salad dressing syrups or jams of any kind
Canned products or dried fruits
Packaged snacks (potato chips pretzels popcorn nuts etc)
All soft drinks fruit juices and sweetened beverages alcoholic beverages coffee
Candies chocolates cakes cookies and gum


----------



## Maya142

Any news on  O? Thinking of her.


----------



## crohnsinct

Not a great day....

Abdo pain (not menstrual) is back
Frequency up
Blood up

No word from anyone on the plan.  They just sent the resident in to tell us that we were staying.  Poor kid...she was so scared she tip toed in.  O and I laughed and told her it was safe we pretty much figured we weren't going home.  

I did manage to have a semi nice birthday.  O and I cuddled in her bed binging on Netflix.  Hubby and the other girls brought dinner and cupcakes in.  The nurses made me a mocktail (Sprite and cranberry juice).  

It's all good.


----------



## polly13

Big Big Hugs Crohnsinct  - hope O is doing better today and belated happy birthday.


----------



## crohnsinct

Well O's weight is down another pound and her albumin is also down.  However, her BM's are pretty stable at 6-8 a day and that bleeding thing stopped and went back to her usual blood.  

At this time they don't want to change anything with her therapy so they are letting us go home.  It is bittersweet because they are saying we are not out of the woods and they are half expecting her to slide (because she has done so in the past) but if they aren't changing anything se can slide at home just as easily as here and she has been here for 2 1/2 weeks this time and going a little batty.  Plus, we only have a week to infusion and a little more than a week to her GI appointment.  So she "should" be able to make it.  Took her a week and half last time. 

BRB


----------



## crohnsinct

Back. Sorry bout that. Had my last pic line/tpn session. 

She will also have weekly picc line dressing changes and labs done at the hospital so those will also serve as a safety net. 

WE ARE GOING HOME!


----------



## my little penguin

Yippeee!!!


----------



## Maya142

YAY!! I really hope she will not slide. Fingers and toes crossed. It sounds like they will be keeping a close eye on her, which is great!


----------



## Jo-mom

Double yay - dancing poop, dancing poop.  It will be so nice for both of you to be home.


----------



## Jelly loves Peanut butter

So happy for O!!. Hope she does well at home with no complications.  Keep us posted !


----------



## pdx

Hooray! Hope everything goes well this week. Enjoy sleeping in your own bed!


----------



## crohnsinct

HAHA!  Sleeping in my own bed.  With O.  And her two pumps sitting between us humming in my ear!  Occasionally alarming in my ear because although I was an expert primer apparently there could still be air in the line!  Great training the first night.  

Got my marching orders from the docs. Basically my house is now the hospital and I am the nurse.  I am to chart her weight daily, water and food intake.  Every morsel and sip.  Measure her urine output and chart her poop.  In addition to taking care of her Picc line and administering her fluids and lipids nightly.  Change bed sheets and towels daily. Figure out recipes on the CDED. Back to the hospital weekly for dressing changes and labs.  That actually is comforting.  I figure the labs might signal any slips. Back twice next week.  Once for infusion and then again for GI appointment and dressing change.  

Can you imagine the state of my house?  I have been basically gone since May 13th...hubby was left alone with 2 kids and 2 dogs and a full time job that had it's own trauma and a kid in the hospital he tried to visit every free minute.  I thought I walked into a crack den last night!  

It's good though because cleaning this place up will take my mind off all the what if's ahead of us.  

In case you were wondering YES I had my glass of wine.  A very small glass.  It was all I needed

Happy Fourth Of July to all our U.S. friends!  Well actually you all have a 4th of July on your calendars so Happy 4th everyone!


----------



## Jo-mom

OMG you crack me up - even with all this, you find humour.  I admire that.  
You do have so much on your plate but always better to be at home in your own comfort and the 4 oz glasses of wine.  It's nice that your family gets to be together on the 4th of July Holiday.  
Good luck with all your extra responsibilities but remember to give yourself a little time whenever possible.


----------



## crohnsinct

> remember to give yourself a little time whenever possible.


Jo - mom you have to learn to proof read your messages.  You have a type above.  You wrote time and I think you meant wine!


----------



## Maya142

> In case you were wondering YES I had my glass of wine. A very small glass. It was all I needed


Just one glass? We were going to send you a barrel for the holiday!! Guess I'll just keep it here   then. Not because I might have drunk half of it or anything like that .


----------



## Maya142

> Can you imagine the state of my house? I have been basically gone since May 13th...hubby was left alone with 2 kids and 2 dogs and a full time job that had it's own trauma and a kid in the hospital he tried to visit every free minute. I thought I walked into a crack den last night!


There's no place like home, right?! Make the hospital seem like a luxury hotel - O's meds are all taken care of, there's no cleaning to be done and there's room service .



> And her two pumps sitting between us humming in my ear! Occasionally alarming in my ear because although I was an expert primer apparently there could still be air in the line!


Well, I have good and bad news for you about the alarm. The good news is that you will become so used to the pump alarm, that you'll start sleeping right through it (yes, extra sleep!!).

The bad news is that you will then wake up to cranky pets, who don't like the sound of beeping all the night, and an even crankier kiddo who did not get her lipids/fluids/formula overnight and is annoyed about being hooked up all day.


----------



## Tesscorm

I'm so glad you're both home!! (I think!  LOL)    I think you need Marie Kondo to do an emergency visit for you!!  Just to give you time for your well-deserved wine!! 

I hope all runs smoothly and you won't have many alarms going off!!  Then again, drink enough wine and it won't matter!


----------



## Pangolin

crohnsinct said:


> Oh right!  I forgot about that part.
> 
> So if we do all her calories from formula it would technically be EEN with lipids and fluids.  Hmm.


Why haven't you already been doing this?


----------



## crohnsinct

Sorry Pangolin...doing what?  EEN or PN with CDED....

Either one is because she was inpatient and her care was being directed by the team at the hospital.

At the beginning, I was told that she was so severely malnourished and her bowel was so diseased that there was no way that EEN would have provided the number of calories she needed to get "out of the woods".  Having just escaped another hospital admit with sepsis and staring at possible toxic mega colon I was ready to agree to just about anything they wanted.

As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O.  She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.

We are home now and trying the CDED with IV nutrition so basically similar to PN.  I will let you guys know how it goes.


----------



## Maya142

> As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O. She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.


Young adults are tough - they aren't always rational and their brains are still developing and they tend to underestimate risks. But since they are over 18, there's not much you can do about it, except talking to them. Sending big hugs to you and O, CIC. I hope the IV fluids + lipids are enough to keep her weigh up!!


----------



## Pangolin

crohnsinct said:


> Sorry Pangolin...doing what?  EEN or PN with CDED....
> 
> Either one is because she was inpatient and her care was being directed by the team at the hospital.


EEN or full bowel rest, ie no ordinary food. Whether her care was directed by the hospital or not, you can independently just give her the shakes to drink instead of food. Their food logs and pushing her to eat should have been opposed and ignored.

That said, your daughter's opposition to it is key, and obviously it's hard to do anything the patient herself opposes. I'd put a lot of effort into convincing her otherwise.



> At the beginning, I was told that she was so severely malnourished and her bowel was so diseased that there was no way that EEN would have provided the number of calories she needed to get "out of the woods".  Having just escaped another hospital admit with sepsis and staring at possible toxic mega colon I was ready to agree to just about anything they wanted.


If they were correct about her bowel being so diseased that EEN was not possible, that's where TPN and gut rest comes in. I just don't understand why they allowed--let alone pushed--food on her in that condition. Clearly if her bowel was so diseased EEN was insufficient, then having regular food wouldn't be any better.

I do understand that you were in a tough position, and I've experienced that kind of pressure myself, so I know it's really the hospital making the big error here, and you are not really in a position to actively oppose them.



> As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O.  She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.


I'm horrified that the doctors actively resisted. That's borderline malpractice in my opinion. An NG tube is annoying but much better than losing a colon. Totally worth a try.



> We are home now and trying the CDED with IV nutrition so basically similar to PN.  I will let you guys know how it goes.


Really hope the CDED works for her. I wouldn't trust its efficacy as much as EEN, but it's probably an improvement over ordinary diets.


----------



## crohnsinct

It is true.  I had no choice.  She was inpatient and I asked.  Numerous times.  I guess I could have signed her out A.M.A. and done whatever I wanted at home but I needed her to be there. 

True she is 19 and can make her own decisions.  I have spoken to her numerous times about the benefits etc.  In the end, if she decides against it, it is her choice. She is a very smart girl and would totally understand the benefit of a difficult therapy but when the docs aren't even on board why would she side with her mother?

To be clear, she is not going to lose her colon because she won't do EEN.  She has done EEN before WITH maintenance meds and it has helped.  That time the meds just needed a little extra help.  This time, she was on Remicade, Entyvio, and Tacrolimus and still went septic.  Her disease is that severe that two biologics and tacro couldn't stop it.  We dropped tacrolimus and added steroids and she had to be admitted again for three and a half weeks.  She was put on iv steroids three times. Her disease spread and spread regardless of all these drugs.  The radiologist reading her MRE commented about how severe her disease is and how quickly she went from just rectal and sigmoid colon to her entire colon being severely diseased and a stomach full of ulcers.  While her GI and I are firm believers in EEN, I honestly don't think it will be able to reign in this monster of a disease. 

Add to all of this that EEN is not generally as effective with colonic disease as it is with the small bowel.  It also tends to lose efficacy the more you use it.  It has happened with my younger daughter who has small bowel disease.  The first time it worked like a charm.  The second time is kind of helped, the third time it didn't touch her disease.  It is just like drugs, it works for some beautifully but others not so much.  

Her GI initially wanted gut rest and TPN.  Why the inpatient team pushed the food, I have no idea.  There were a few days she only got a few hundred calories and it made no difference to her stooling so I am guessing they figured food wasn't going to hurt her. I guess her GI didn't feel strongly enough that gut rest was an integral part of stabilizing her right now so he dropped that fight. 

Now that we are home, she could just drink an OTC shake if she wants.  I will continue to remind her about them but at this point she is passing blood clots and at an extremely stressful point having had to miss two summer college semesters and facing having to miss her fall semester, being stuck in a place where she has no friends (the family recently moved across country), feeling miserable and facing possible colectomy.  So if she pushes back, I won't beat a dead horse or add to her stress.  She is going to start seeing the GI clinic's psychologist at the request of her GI.  Maybe if the GI feels strongly enough the psychologist can discuss this option with her. 

Thanks again for caring about my girl.


----------



## crohnsinct

Wanted to add that the studies on CDED that are coming out of Israel and Canada are very promising.  Not only are they able to induce clinical remission but they are finding endoscopic evidence of healing as well.  It is being used with PEN.  PEN and a regular diet has not been as successful.  

It is only being used though to induce remission.  Just like EEN it is a 6-8 week therapy and then a transition to a broader diet.  It is used in addition to maintenance meds.


----------



## my little penguin

Going to tag @kiny here 
While EEN and other diet therapies are extremely effective in crohns (in the terminal ileum & small intestine ) 
They are not effective in the version of crohns that affects primarily the large intestine (colon) .
Kiny explainers it very well with the science behind it 
Here 


> Just to add. When research papers, especially older research papers, use the word ''crohn's disease'', they are often referring to the strict definition of crohn's disease as described by Dalziel. Chronic enteritis, inflammation of the ileum in the form of patchy granuloma.
> 
> When I say ''crohn's disease'', I too strictly mean ileal disease, with no or negligeable colon involvement. I know far more about the ileum and peyer's patches than I do about the colon.
> 
> EN has been shown to help in standard classic crohn's disease, where the disease is restricted to the ileum. It especially helps if there is stenosis present or wall narrowing, which might restrict the normal flow of regular food.
> 
> EN doesn't work nearly as well if there is colonic involvement, which makes sense, because stool forms in the colon where water is absorbed, not in the small intestine.



From





						Remicade anti-TNF therapy has not yielded expected declines in hospitalisation and intestinal resection rates in inflammatory bowel diseases
					

Conclusions  Marketplace introduction of infliximab has not yielded anticipated reductions in the population rates of IBD-related hospitalisations or intestinal resections, despite robust market penetration among patients with CD. Misguided use of infliximab in CD patients and underuse of...



					www.crohnsforum.com
				




There is a lot of confusion about crohns being one big disease but it’s not 
Not all crohns responds to the same treatment 
Even if as parents we want it to 
So we can’t blindly say docs were wrong because they didn’t want een 
They are basing their decisions off of years of training and research and the history of this particular patient .

Crohns limited to the TI is vastly different than crohns that has taken over the colon to the point of needing surgery


----------



## Pangolin

I can tell you from personal experience that EEN is highly effective in at least some cases of Crohn's with both ileal and extensive colonic/perianal involvement. I've seen it work like magic on perianal Crohn's.


----------



## my little penguin

Een alone or een plus remicade ??
Remicade is extremely effective on perianal disease 
And sometimes because the the disease extent is so great when remicade is combined woth een 
That reduces the “work load “ of the remicade and suddenly healing can occur

Remicade is very fast acting compared to Entyvio 
Remicade only takes 6 weeks to be effective 
Vs 24 weeks in entivyio 
Add in Entyvio is not very effective for crohns ( Ileal) to begin with )

Een by itself can not heal a severely diseased colon


----------



## Pangolin

I can tell you with 100% certainty due to the timing and the fact that we did it twice that it was the EEN. The remicade, as far as I can tell, may actually have made it worse.


----------



## my little penguin

You did een alone twice without remicade (as in the remicade was stopped for over 6 weeks prior to the een )?
Or you did een combined with remicade twice ?
Because the combination of remicade and een 
Has been shown to be effective and some when they stop the een but stay on the remicade alone 
Go back to flaring ...
Tagging @pdx 
 I think they had a similar experience


----------



## Maya142

I would like to remind everyone to please be respectful of other people's treatment choices. We all want to see O get better but we most definitely do not want to add to the stress she and CIC are already dealing with. 



> True she is 19 and can make her own decisions. I have spoken to her numerous times about the benefits etc. In the end, if she decides against it, it is her choice. She is a very smart girl and would totally understand the benefit of a difficult therapy but when the docs aren't even on board why would she side with her mother?


Having been there with an equally stubborn 18 year old, I know there is not much you can. In our case, it took an arrhythmia and a doctor explaining exactly what would happen if she lost more weight (she was 82 lbs at that point) - that she could permanently damage her heart, that her organs would start shutting down - before she agreed to an NJ tube and 85% formula. It was so SO hard to reason with her and I'm SURE the only reason it worked was that the inpatient team, her GI and her psychologist were all on the same page and were ALL telling her that the tube was a better and safer option than TPN for her situation. If I had been the only one telling her, I'm 100% sure she would not have listened.

Plus,  bribing her with a kitten helped  .

We were told that young adults are not always able to make rational decisions when they are malnourished, stressed, exhausted, scared etc. They don't understand risk the way we do. Their brains are still developing and they tend to be impulsive and tend to have poor judgement.

It helped a lot that M's psychologist, whom she had already been seeing for 2 years and whom she really trusted, was telling her that this was the next step and it was safer for her than TPN. Her Crohn's was not an issue at this time - it was just Gastroparesis.

My point is only that young adults are hard enough to reason with, to begin with. And then you add a child who has been hospitalized so many times in such a short period of time, who has already had to give up her summer to this disease and who very well might not go back to school in the fall AND you add a medical team that's telling her it's ok to eat, that EEN won't help her enough...would any 19 year old would choose EEN in that case???

Plus, she has such severe disease that the GI team said the studies about EEN didn't really apply to her, right? Didn't the attending say that her disease was so severe that he hadn't seen a colon this bad since he worked in a developing country that didn't use biologics? And that was after high dose Remicade, IV steroids, IV antibiotics, Tacro etc.

I do think gut rest - TPN - MIGHT help her, but her GI has to be the one making that decision, with O on board. Otherwise it's just not going to happen.

Sending big hugs to you and O, CIC.


----------



## Pangolin

I've been very respectful, except about the doctors who are honestly making a huge mistake.

The bottom line is that formula is easier on the gut than ordinary food--and this is true even (especially) with a damaged gut. Whether or not TPN or anything else is also being used, there's always a choice between ordinary food and formula (or nothing, in the case of TPN with gut rest), and the ordinary food is always more likely to cause problems. There is simply no situation with a damaged gut in which ordinary food is going to result in better outcomes.


----------



## xmdmom

*This exactly!*


> Maya142:My point is only that young adults are hard enough to reason with, to begin with. And then you add a child who has been hospitalized so many times in such a short period of time, who has already had to give up her summer to this disease and who very well might not go back to school in the fall AND you add a medical team that's telling her it's ok to eat, that EEN won't help her enough...would any 19 year old would choose EEN in that case???


----------



## Optimistic

I’ve not been on here for years but I’m glad I checked in to join the sideline support team for CIC and O.  

On the teen/young adult treatment issue...

Years ago even if my son didn’t  like a procedure he responded well to threats and bribes. Oh have things changed. Last week after good MRE and biopsy reports he announced he might stop his treatment. My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college. We worked all these years for them to make their own decisions but at times we wish they would defer to us, right?

I appreciate the comment about respecting individual treatment decisions!.  Crohn’s likely isn’t one disease and some BTDT experiences may apply to other patients and some may not!

I’m hoping this is a good day for O.


----------



## crohnsinct

> My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college.


LOL!  Thanks for the laugh Optimistic!  

Tell him the committee says he can't stop his treatment!  He is the one and only kid on here who is ONLY on diet therapy...he is still only on diet therapy right?  SCD right?  

He is our n of 1!  

If it works why fix it?


----------



## Maya142

> Years ago even if my son didn’t like a procedure he responded well to threats and bribes. Oh have things changed. Last week after good MRE and biopsy reports he announced he might stop his treatment. My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college. We worked all these years for them to make their own decisions but at times we wish they would defer to us, right?


We did this too, with my older daughter. Said if she wasn't responsible enough to take her medications, she would have to come home and go to a local college, so I could make sure she took her medications. We told her medications were non-negotiable and she had to speak with her rheumatologist before making any decisions.

I honestly have no idea if our threat really worked. All I know is her rheumatologist let her decrease the dose of MTX she was on. She promptly flared, within a few weeks. And went back up to hero original dose. After that, we let her make her own decisions - we found that she learns best "the hard way" - by trying and failing. She did the same with MTX several times  in college - tried to reduce her dose and flared. It was hard to watch her in that much pain and I worried a LOT about her disease becoming worse. She was lucky that it did not.

The stakes are different though, when the young adult is seriously ill. That's when you want to get involved. But with my younger daughter, literally nothing worked. Threats, reasoning with her, begging her to accept the tube etc. She was in a lot of pain, due to flaring arthritis, and was not sleeping  - she would literally lie awake till 5 or 6 am in pain and very uncomfortable from the tube. Her doctor tried to be very stern with her and honestly, it didn't work. She didn't respond well to that - all it did was traumatize her. She only finally listened when her psychologist and a resident took the time to explain to her what would happen if she continued to lose more weight. Years later, she told us she honestly did not understand how serious her weight loss was until that conversation. All the threatening, begging, talking, cajoling didn't work because she simply didn't understand the gravity of the situation.

Every kid is different. And every situation is different. EEN may have worked well for someone's child - it may even have worked well for O in the past. That doesn't mean it will work now. I agree that it is easier on the gut and theoretically, it can't hurt. But if O isn't ready to try it, then adding to her stress by threatening etc. probably will do more harm than good.


----------



## crohnsinct

Quick update: 

O's weight is holding steady.  She is doing a great job on the CDED diet.  

We are getting the hang of the PICC line/pump hookups.  

Went for dressing and cap change today.  No labs...bummer.  Next chance for labs will be at infusion next Thursday. 

Her BM's are pretty steady at 5-8.  

Only thing that has changed a bit is bleeding.  Seems in the morning to have had an uptick.  More blood and now passing what looks like little clots. This happens to all middle of the night BM's and first couple of morning ones.  Otherwise her usual bleeding.  

She looks good so not freaking out just yet.  Will wait and see how this thing trends.


----------



## crohnsinct

Yeah Maya and Optimistic! 

O is definitely VERY determined and stubborn.  But I have to admit it sounds like M takes the title there!  

The thing is, O is not making any decisions that are against what her medical team is advising.  She is doing everything they have asked her to do.  If she were denying meds or skipping treatments etc maybe then some threats/strong discussions might be in order and thank-God they aren't because I do NOT need another dog in this house!   But absent her team asking her to go on gut rest or EEN, then it is just mom's suggestion and I am not a doctor, I just play one on the internet! 

She has grown up a lot this past year.  She used to not report/under report symptoms for fear that we would take her out of school or make her miss something.  That has pretty much completely stopped.  She is VERY transparent with everything going on.  Complete with reporting clavicle pain that she was SURE was because of the way she slept at night but figured she should say something just in case it was the PICC line causing a problem. 

Thanks for understanding!  It means a lot to me.


----------



## crohnsinct

Hmmm just remembered that the GI said as the new epithelial layer forms the old will slough off so even though healing could be occurring it will take a while for the bleeding to stop and may even increase.  Maybe those clot type things are the old epithelial layer?


----------



## pdx

my little penguin said:


> Because the combination of remicade and een
> Has been shown to be effective and some when they stop the een but stay on the remicade alone
> Go back to flaring ...
> Tagging @pdx
> I think they had a similar experience


Our case was a little different. E started on remicade only (no steroids or een), and after a few months she was getting sicker so we added een, and that wasn’t enough either, so then we upped her remicade dose and added Mtx and budesonide (and a few days of IV steroids) and she finally started to get better. About 6 months after starting remicade we stopped pen and budesonide and she was ok on just remicade and mtx.

Bottom line is that situations vary, and there’s trial and error involved in finding the right treatment. 

Hope you got more sleep last night, CIC, and that O is doing well.


----------



## Maya142

> O is definitely VERY determined and stubborn. But I have to admit it sounds like M takes the title there!
> 
> The thing is, O is not making any decisions that are against what her medical team is advising. She is doing everything they have asked her to do. If she were denying meds or skipping treatments etc maybe then some threats/strong discussions might be in order and thank-God they aren't because I do NOT need another dog in this house! But absent her team asking her to go on gut rest or EEN, then it is just mom's suggestion and I am not a doctor, I just play one on the internet!
> 
> She has grown up a lot this past year. She used to not report/under report symptoms for fear that we would take her out of school or make her miss something. That has pretty much completely stopped. She is VERY transparent with everything going on. Complete with reporting clavicle pain that she was SURE was because of the way she slept at night but figured she should say something just in case it was the PICC line causing a problem.


O has been amazing,  considering the situation she is in. She has been so tough. She has taken every poke and procedure with minimal complaints. She's dealt with enemas, suppositories and other uncomfortable treatments. And she's started actually telling the doctors what is going on!! That's huge for a kid who was so stubborn that she'd deal with any amount of diarrhea and bleeding, as long as she was allowed to go to school!

She has grown up a lot, very fast. I wish she didn't have to, but it is what it is, I guess  . Just bad luck that her disease is so severe and treatment resistant.

Really hope today will be a better day for her.


----------



## Pangolin

I'm going to make one more suggestion, and that is to take a thorough read through this thread: https://www.crohnsforum.com/threads...n-rates-in-inflammatory-bowel-diseases.85089/

Kiny is absolutely on the right track here.


----------



## crohnsinct

I have read it, three times.  

Printed it and showed it to our GI who is also in drug development as well as being a clinician.  He has done mega tons of research and actually recently got an award for the most cited paper in IBD.  

There are a lot of factors at play with this disease. More than we as parents and patients can fully understand and appreciate.  I have decided to be put my energies into being the best mom I can be for all of my children and let her GI drive the gut bus for awhile.  He has taken very good care of her thus far.  He managed to get an unheard of bump to 600mg of Entyvio approved by our insurance company on the first try.  We didn't even need an appeal.  He must know something about something.


----------



## Optimistic

I’m not trying to hijack here. There is all Team O. Just saying that these are adults who need different approaches than “bc I said” or “we can watch a fun movie after you start tube”. I don’t know what the approaches are though! And in my case when drs waiver or think out loud things are more complicated. 

But yes, he is still on about 30% EN and SCD.  First was EEN and steroids while we waited on Remicade approval; when insurance was slow drs ad libbed  based on Israeli work (he did more EN than SCD first year or two).  The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did. 

I do remember a weird period of early bleeding that drs attributed to healing. Let’s go with that for O. Healthy new lining in progress.


----------



## Jo-mom

I have been following that thread as well and it's making my head spin!  We just don't know enough and we have to put our faith in something.  Maybe one day, they will have a concrete answer on what causes crohn's, and how it is approached will change, but for now, I too have to put some faith in the professionals and do as much homework as possible.  
CIC, let us know what your GI thinks of this if he ends up sharing his opinion with you.  In the meantime, I think you are doing one remarkable job as a nurse, as a mother, as a housekeeper, as a friend, etc etc etc.


----------



## Maya142

> The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did.


That was the issue with my older daughter - she knew she had been really sick but it was like she didn't really believe it would happen again.  We argued, threatened, tried to reason with her and so on. None of that really worked for us, though we thought it did at the time. 

My younger one is a different story - she was very stubborn about the NJ tube, but besides that, since she has been so, so sick, she follows instructions carefully and actually reads a lot of medical research. She has been much sicker than my older daughter though - missed 2 full years of college due to her arthritis - flares, surgeries (will have bilateral joint replacements this summer at 22 ), the pain program etc. So compliance isn't a big issue with her - her big issue is pushing herself too hard!

Optimistc - really hope your son sticks to his diet and shakes. For what it's worth, my older daughter had a friend in college who did the SCD. She and her family worked with the school and they prepared her SCD safe meals every day! She didn't have a kitchen her freshman year,  but did after that. And that was her only treatment - just the SCD, no meds or formula.

Every kid is different.  CIC, really hoping the bleeding is due to healing!!


----------



## crohnsinct

> The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did.


You are still cracking me up Optimistic!  

College can be ROUGH!  Add to that the distance...well just ugh!  BUT the good news is, you don't see them often so if they say they are fine then you actually believe they are fine...what you don't see won't hurt you  Plus they grow up a lot in that time and surprise you.  And you learn to loosen the reigns a little bit.  As hard as it is having O go so far away, I think it was the best thing for her and disease management.  If she were closer, I would just continue my control freak tendancies and probably never let her take over.  Plus, it is Crohn's.  There is rarely such a life threatening emergency that can't wait for the flight home if need be and look at O...she was in a small regional rural hospital with no GI's on staff and they managed to take perfectly fine care of her.  During this last impatient stay when the attending weren't playing nice with her GI I was missing that sweet small hospital who did everything our GI told them to do 

Have you found a local GI to care for him should he need it?  Registered with disability services?


----------



## crohnsinct

UPDATE

O's weight is still steady.  

She is down to 5-7 BM's a day. 

Still doing that bleeding thing in the a.m. then back to normal blood throughout the day but seems to be less later in the day. 

But the best news is....she is having at least 1 semi formed stool a day for the past three days!  

Checked in with GI and he said that this is very good news and evidence of healing!  

IDK if it is: 

Entyvio finally kicking in - doubtful 
Steroids - finally doing their thing - maybe but she has been on them for over a month 
Improved nutritional status - probably this.  The GI said she was so malnourished her body was using all it's energy to keep her going and healing had to be given up. Now that she is nourished properly the steroids can do their thing. 
CDED- since we just really started this on Tuesday and we started seeing the turn around on Wednesday, I am willing to bet it had at least a little something to do with it...combined with improved nutritional status.  

She went to the mall yesterday with her sister!  A nice normal teen activity! 

We have a very bright outlook here at Team O today.  Entyvio and labs Thursday.  GI appointment on Friday.  Steroid taper on Saturday.  I will let you guys know how much after the appointment on Friday.


----------



## my little penguin

Go Team O !!!!!


----------



## Maya142

YAY, what great news!! So glad she got to do something "normal" - she deserves a break! Hope she put her shopping on Mom's credit card .

Thrilled to hear she is feeling better. Go Team O !!


----------



## Jo-mom

Fantabulous - "normal" is sometimes too under-rated but I just love it when things are normal.  Maybe they are plotting to buy you a belated birthday gift.  I hope you are enjoying some down time and some wine (note - included both in the same sentence this time).


----------



## happy

Again   !!
Go O Go!!
I just want to thank all of you wonderful parents for sharing all the ups and downs of your kids' treatments. We are trying to get my own son sorted out and it is so helpful to see what others have tried and the adjustments within the treatments that seem to help. 

MLP thanks so much for posting the recent articles--I went down the rabbit hole of following all the links related to diet/EEN/biome and sent some to my son. These articles seemed to get through to him in a way I could not seem to.

CIC I don't know how you have managed to keep your good humour--it is so stressful when your kids (even the adults!) are sick and moms are the people that the kids can lose it with because we still have to love them after.  So I know it has not been all roses for you interacting with O while she has been sick. So glad to hear that finally there seems to be some improvement for your daughter. Long may it last!


----------



## crohnsinct

Hi Happy, Thanks so much for your encouraging words.  

It is so true.  If you want to know how strong your relationship with your child's, try locking yourself up in a hospital room 24/7 for 33 days! 

I was just rereading your thread this morning to see if there was anything I might be able to add and identifying so much to your trials as well.  

The only thing I can offer is that we have researched the FODMAP diet a lot here when they thought some of O's issues were IBS.  It really isn't a diet intervention that you can attempt on your own.  It is really meant to be directed by a dietician.  It makes me sad that GI's read about these diets and say, "here, try this" but then don't put the necessary support in place.  

That said, our GI has also recently done a version of the same and said, "lean toward the CDED diet".  He only gave us broad guidelines of allowed and not allowed .  So we are trying to figure it all out.  

If you have access to a registered dietician, I would try an appointment with one.  They have a lot of experience with all these diets but also might be able to provide some advice on what it is your son might have and help you ask for the appropriate testing.


----------



## happy

Thanks CIC
Unfortunately access to dieticians with IBD/IBS knowledge is limited here unless you get the IBD diagnosis and access to the IBD team. That being said, he did see a private Monash-certified dietician who also works with the IBD team and has Crohn's herself. Also unfortunately, as per the docs, she could not believe that he was actually eating the amounts of the foods that he was eating and still losing weight, so she decided to input the amounts of foods that she thought he meant (for example 1 cup cooked rice rather 1 cup raw rice) so her advice was not very helpful as she did not listen to him. Even so, he followed all of her advice about the LowFodmaps elimination phase to the letter. We are trying to get some blood work for vitamin levels, iron levels etc done now from his GP as neither GI is interested in doing much else for now.

Thanks for thinking of us.


----------



## crohnsinct

Oh man!  Bummer.  Monash is the key there.  UGH!  Keep fighting mama!  You know your kid!  This is not normal!  There has to be an explanation!


----------



## Maya142

> CIC I don't know how you have managed to keep your good humor--it is so stressful when your kids (even the adults!) are sick and moms are the people that the kids can lose it with because we still have to love them after.


Truer words have never been spoken! We have had many, many fights during hospitalizations....and my daughter has never been hospitalized for more than 12 days at a time! We've done 31 days in a year but that was split into 4 different hospitalizations. I can't imagine how what 33 days does to you  - I would have been banging my head against a wall by day 10.


----------



## crohnsinct

LOL!  Not gonna lie, I had to leave the room twice and once she politely said, "mom, go outside for a walk"


----------



## Optimistic

crohnsinct said:


> LOL!  Not gonna lie, I had to leave the room twice and once she politely said, "mom, go outside for a walk"


If those are worst things that happened I would call it a huge success, and celebrate YOU!
O must be thinking about whether she can return to school in a month or so...
You are one day closer to seeing her GI. I think she is going to show up to see him with some good progress.


----------



## crohnsinct

Well this is a bummer.  Small study but hopefully our insurance company doesn't read it before we request our next double dose of Etyvio...this feeds right into their statement that therapeutic drug monitoring in Vedolizumab has not been proven. But these are some pretty close comparisons. I think other studies have looked at level of say 10 compared to 20 and they have seen a difference.  



> Association of trough vedolizumab levels with clinical, biological and endoscopic outcomes during maintenance therapy in inflammatory bowel disease
> 
> 
> Nikolas Plevris1,
> Philip W Jenkinson1,
> Cher S Chuah1,
> Mathew Lyons1,
> Lynne M Merchant1,
> Rebecca J Pattenden2,
> Ian D Arnott1,
> Gareth R Jones1,
> Charlie W Lees1
> *Author affiliations
> 
> Abstract*
> *Objective* To establish the relationship between trough vedolizumab levels and outcomes during maintenance therapy.
> *Design* Cross-sectional service evaluation was performed on patients with inflammatory bowel disease (IBD) receiving maintenance vedolizumab therapy (minimum of 12 weeks following induction). Prior to infusion, data on clinical activity (Harvey-Bradshaw Index or partial Mayo score), trough C-reactive protein (CRP)/vedolizumab levels and faecal calprotectin were collected. Endoscopic data (±8 weeks from vedolizumab level testing) were obtained by review of medical records. Vedolizumab levels were processed using the Immundiagnostik monitor ELISA.
> *Setting* The Edinburgh IBD Unit, Western General Hospital (tertiary IBD referral centre).
> *Patients* Seventy-three patients (30 ulcerative colitis and 43 Crohn’s disease) were identified who fulfilled inclusion criteria and had vedolizumab levels matched with clinical activity scores, CRP and faecal calprotectin. Of these, 40 patients also had matched endoscopic data.
> *Main outcome measures* The association of trough vedolizumab levels with clinical remission (Harvey-Bradshaw Index <5 or partial Mayo <2), biologic remission (faecal calprotectin <250 µg/g+CRP <5 mg/L) and endoscopic remission (Mayo score 0/no inflammation and ulceration on colonoscopy).
> *Results* The median trough vedolizumab levels were similar between patients in and not in clinical remission (10.6 vs 9.9 µg/mL, p=0.54); biologic remission (10.6 vs 9.8 µg/mL, p=0.35) and endoscopic remission (8.1 vs 10.2 µg/mL, p=0.21). Quartile analysis revealed no significant increase in the proportion of patients in clinical remission, biologic remission or endoscopic remission with increasing trough vedolizumab levels (p<0.05).
> *Conclusions* In this cohort, trough vedolizumab levels were not associated with clinical, biological or endoscopic outcomes during maintenance therapy.


----------



## Maya142

> *Results* The median trough vedolizumab levels were similar between patients in and not in clinical remission (10.6 vs 9.9 µg/mL, p=0.54); biologic remission (10.6 vs 9.8 µg/mL, p=0.35) and endoscopic remission (8.1 vs 10.2 µg/mL, p=0.21). Quartile analysis revealed no significant increase in the proportion of patients in clinical remission, biologic remission or endoscopic remission with increasing trough vedolizumab levels (p<0.05).
> *Conclusions* In this cohort, trough vedolizumab levels were not associated with clinical, biological or endoscopic outcomes during maintenance therapy.


What is the difference between clinical remission, biologic remission  and endoscopic remission? I'm assuming clinical remission is the absence of symptoms, so then endoscopic remission would mean that the scope looked clean, visually? And biologic remission would mean biopsies were clean?

O's trough level was 11, right? So she's right around the levels in the study... But I wonder if getting it up further - like to 20 -  may make a difference? I'm going to hope that it will for O.


----------



## crohnsinct

Exactly Maya!  How do they compare 9.9 to 10.6 and say there was no significant difference.  I wouldn't expect there to be. They are practically the same! But 11 (O's level) compared to 20 we are shooting for is significant.  FWIW - there are a few studies looking at redo drug levels and they are split on whether a higher level helps and if drug monitoring is beneficial.  This is why our GI said that there was little in the way of medical literature to support our request.


----------



## xmdmom

That article says used faecal calprotectin <250 ug/g and CRP<5 mg/L as evidence of biologic remission and appearance of gut  (no inflammation and ulceration) on colonoscopy as evidence of endoscopic remission.

*



Main outcome measures The association of trough vedolizumab levels with clinical remission (Harvey-Bradshaw Index <5 or partial Mayo <2), biologic remission (faecal calprotectin <250 µg/g+CRP <5 mg/L) and endoscopic remission (Mayo score 0/no inflammation and ulceration on colonoscopy).
		
Click to expand...

*This is Mayo scores for UC; there appear to be two parts, symptoms and endoscopy. https://www.mdcalc.com/mayo-score-disease-activity-index-dai-ulcerative-colitis

This Harvey Bradshaw Index measures symptoms. https://www.igibdscores.it/en/info-hbi.html


----------



## crohnsinct

Yeah.  O's Mayo score is a 12. I saw that when I gathered her records to send for a second opinion.  Bummer. 

Do you agree xmdmom that comparing patients in remission with a trough level of 10.6 and not in remission with a trough level of 9.9 doesn't really tell us much.  They are saying that higher trough levels are not associated with any remission.  Seems to me you would want to look at a greater difference in trough levels.  Like patients with >20 as compared to patients with 10 and then can determine if increased trough levels are relevant.  I think the LOVE study I posted earlier in the thread came to the conclusion that higher trough levels do affect remission rates.  

Or am I missing something?


----------



## Pangolin

crohnsinct said:


> Exactly Maya!  How do they compare 9.9 to 10.6 and say there was no significant difference.


What they're doing is taking a bunch of patients and separating them into groups:

people in clinical remission vs. people not in clinical remission

people in endoscopic remission vs. people not in endoscopic remission

Etc

Then they take the entyvio levels in each group and calculate an average level for each group. If variation in entyvio levels among patients at normal doses really matters for inducing remission, then you would expect the levels of those in remission to be higher.


----------



## crohnsinct

Right Pangolin.  But what I am saying is there isn't enough of a difference between the responders trough level (10.6) and the non responders trough level (9.9) to say that trough level doesn't make a difference.  They are so close that they are basically the same.  So you really can't say that increasing trough wouldn't make difference.  They are just basically saying a bunch of people at roughly the same trough all had different responses to therapy.  Not saying a lot.  Besides it was a very small study.   

If you look at the LOVE study their data says that responders had something like >20 trough level and non responders had around a 10 or so...I don't remember the exact numbers and too busy to look them up right now.  So in that study, higher trough levels DO lead to improved response.

This just goes to show that you can probably find paper somewhere to prove anything you want.   IT also proves our GI's point that there isn't enough consistent data on trough levels for Entyvio for us to petition the insurance company to cover the higher dosing.  Thank goodness our GI had such good persuasive skills on his own.


----------



## Pangolin

We could look at the study to find out the range of levels they had, but there's a good chance some patients had levels closer to 20. In order to make the averages nearly even, any in remission at higher levels were balanced out by those not in remission at higher levels and by those in remission at low levels. So, no apparent effect of varying levels in this study.


----------



## xmdmom

For some reason, this post didn't post.  So this is in response to a question last eve.

They are saying that they didn't find an association between trough levels and remission in their cohort of people with Crohn's and U.C, on *maintenance* V for between .8 to 2.2 years. Their trough range was 7.9 to 16.1 so none were in the 20s.  

They mention that there were some on q 4week schedule but most on q 8 weeks V and the q 4 week schedule group had higher trough V levels and were less likely to be in biologic or clinical remission and possibly had more severe disease.  They also did another analysis without these patients and were unable to find an association between trough and remission.

The other study was longitudinal, only had Crohn's patients, and was looking at V levels at <. 5 years.


----------



## crohnsinct

Love having a committee member with access to the complete study details!  Thanks xmdmom!



> the q 4 week schedule group had higher trough V levels and were less likely to be in biologic or clinical remission and possibly had more severe disease.


Choosing to ignore this part for now!  Going to walk my unicorn with my fairy friends now!  See y'all in the sandbox!


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## my little penguin

We are all here with you


----------



## crohnsinct

UPDATE

After my last update it appeared that O slid a little.  BMs went up to 11 and 12 a day and she started bleeding a lot.  However, 3-4 were semi solid so things were still encouraging.  

She had her Entyvio infusion yesterday and labs were done. 

Shockingly her Hgb (10.8) and Hematocrit (33.6)  are improved since discharge.  The only thing her GI said would make those false high is if she were dehydrated and considering she is drinking 2 liters of water a day and had a bag of fluids the night prior that is unlikely.  He can't explain how it is as high as it is with all the bleeding and how pale she is but we will take it.  Honestly she is bleeding at least a teaspoon of blood with every BM and sometimes it is all blood.  Toilet paper is sopping with blood.

Her albumin is almost in range at 3.4.  This is excellent.  He said it was in the dumps at discharge at 2.7.  Low albumin is a negative predictor for nutritional status and how you will metabolize the drug.  So the improved albumin should help her hold on to more drug. 

CRP is up a little bit more at 3.9 or 39 but at least not in the hundreds like before.  It was 4.1 at last admit so basically the same. 

He ordered a slide review and I will put the results here in case anyone else comes across them.  

RBC Morphology: abnormal...makes sense with low HGB and HCT 
Polychromasia: level 1+
Toxic Granulation: Present 
Dohle Bodies: Present 

I looked up these things and some could be from acute blood loss, some intra abdominal abscess, infection (sepsis), and severe inflammation.  So as a Crohn's patient probably no surprise there.  GI didn't mention them so I assume all is good there. 

She has gained a pound from discharge and out of the scary "admit" zone BUT he really wants her at the 15th percentile for BMI so we have work to do there. 

Her friend in Texas is moving to Peru for two years and is having going away party this weekend.  He o.k.'d her going to Texas until Monday which means holding all feeds (lipids and fluids) for three nights.  He said she is being so responsible and working so hard that he will trust her not to drink and to eat CDED and to monitor PICC line status (any fever and direct to ED and admit for 24 hours of IV antibiotics).  From there she will fly to Utah and meet the rest of the family where we will spend a week at a softball tournament for T.  I will bring her Picc supplies to resume o/n feeds on Monday. 

We will do labs in two weeks.  If albumin is still good, we will try to decrease the Entyvio down to 500 or 400.  He said there is no clinical guidelines for what we are doing.  She is the only patient outside of the current clinical trial who is trying this so we are making it up as we go.  If Albumin tanks again we will stay at 600.  Will have to get insurance approvals. 

We are dropping steroids by 10mg starting tomorrow and will wait for the next set of labs to go down more.  At that point may go down 5 or 10 more mgs.  We need to see if Entyvio is working, she has been on steroids too much the past 2 years and he doesn't want to send her back to school on steroids. 

She asked about school in the fall.  He slowed her down on that one.  No crystal ball.  He is 70% confident that she could go but warned her that she is still so fragile and if we push too hard everything can topple down.  He said we worked hard to get her where she is and we don't want to risk it.  We have a lot of work ahead of us.  He would like CRP lower than 1 or 10, no bleeding, near normal labs....She will have to eat A LOT more to show that she can exist without the PICC line (up her BMI) as he does not want to send her back with it if he can avoid it. It is too hard to manage remotely and too high a risk of infection.  Plus she is on the swim team and he REALLY wants to get her back in the pool.  But if that is the only thing holding her back he will send her with it.  So weight check in two weeks with labs and then we may hold nightly feeds for a week and see how she does.  

I think this sums it all up.  

So he really did know what he was doing all along and we just needed to improve her nutritional status as honestly that is the only change we made.  We did put her on IV steroids for a few days and then increased back to 40mg but honestly the steroids were not holding her until we  improved her nutritional status.  I just wish the inpatient team listened the first time and sent her home with the PICC line as we might have been able to avoid the last admit.  Oh well, hindsight is 20/20.  

Just holding our breath with the drop in steroids.  Hopefully with the improved nutritional status this time it will work! Also hoping the bleeding slows down!


----------



## crohnsinct

Oh...should add that when he examined her he said he still felt some ileall inflammation and a good amount of left side colonic inflammation and she admitted it hurt when he palpated those areas.


----------



## Maya142

It sounds like things are moving in the right direction!!  That's wonderful to hear!!

I agree with him - baby steps right now for O. Let's see how she does without lipids overnight. Let's see if the bleeding starts to reduce. We can worry about school once she is a bit more stable.

She is so much like my daughter - she just REALLY hates being out  of school. Will do everything she can to avoid missing school.



> We have a lot of work ahead of us. He would like CRP lower than 1 or 10, no bleeding, near normal labs....She will have to eat A LOT more to show that she can exist without the PICC line (up her BMI) as he does not want to send her back with it if he can avoid it. It is too hard to manage remotely and too high a risk of infection. Plus she is on the swim team and he REALLY wants to get her back in the pool. *But if that is the only thing holding her back he will send her with it.* So weight check in two weeks with labs and then we may hold nightly feeds for a week and see how she does.


He's willing to let her go to school with a PICC line?! How will she manage that on her own? Dressing changes, keeping everything sterile - it's not easy. We were trying to figure out how M could do it in college and her GI said she'd really need someone else (aka Mom) who could help her do everything to care for the PICC line and prevent infections. She said an NG tube was MUCH safer.

Very glad to hear she is a bit better! Hope the taper goes well.


----------



## my little penguin

Great news 
That’s wonderful 
Well not the pale bleeding part


----------



## crohnsinct

Maya,  not really. He said no picc line was a condition of going back to school but then he saw how sad she got and said well maybe if we have to...if that is the only thing holding you back...maybe we can do it. 

Dressing changes are done by visiting nurse or at hospital. She would need to get an extension so she could use two hands because as it is now she absolutely needs another person to do it. Even down In Texas she is going to have to do daily saline flushes and heparin and we practiced how she would coach her friend to help her. Ironically said friend is very skiddish over anything medical so it will be interesting to say the least.


----------



## awmom

I'm so glad things are improving for O!!  It sounds like her GI is on the ball and methodically taking her on a healing path one step at a time.
I hope you both have a great (and so well deserved!!!) time with friends and family!!


----------



## Maya142

I know that PICC lines can stay in and be used at home and in school. But isn't it much, much safer if she got nutrition via an NG tube? Or shakes that she drinks?  
I'm sorry, I'm just shocked that he would even consider a long-term PICC line when she could receive nutrition via an NG tube. I feel like if she is so sick that she requires TPN for nutrition, then she probably shouldn't be in school. Plus, There are so many risks - infections, clots, an embolism...It's scary enough when a parent has to do it, much less a teen! An NG tube is so much safer.


----------



## pdx

Maya142 said:


> I know that PICC lines can stay in and be used at home and in school. But isn't it much, much safer if she got nutrition via an NG tube? Or shakes that she drinks?
> I'm sorry, I'm just shocked that he would even consider a long-term PICC line when she could receive nutrition via an NG tube. I feel like if she is so sick that she requires TPN for nutrition, then she probably shouldn't be in school. Plus, There are so many risks - infections, clots, an embolism...It's scary enough when a parent has to do it, much less a teen! An NG tube is so much safer.


Agree with all this. Maybe you could talk to O about how she has a much better chance of going back to school (and making it through the year) if she is using a tube rather than a PICC line, since there's so much less chance of complication. Also, keep telling her about all our kids' stories--about how everyone thinks a tube sounds really hard before trying it, but everyone finds it not-so-bad after the first few days. And I really think it will make her feel so much better physically too. 

Good luck with everything this week--hope her trip goes well.


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## Jo-mom

Glad to read about the encouraging signs.  I wish you both a good trip.  Try not to think too much right now - just enjoy your trip.  You will have plenty of time to worry about it all after your trip.


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## crohnsinct

I think the issue is more that he really doesn't want to send her back to school needing supplemental nutrition period.  Since nutritional status seems to be so important to her either succeeding or not I really think he wants to know that she can do it before she leaves. 
I honestly think he entertained the idea of the PICC line staying in just to appease her in the moment but also as a stop gap just for the first couple of weeks "just in case" she slides at which point she would be brought home and medically withdrawn from the semester.  It isn't really a long tern solution to be used at school.  Sorry I didn't explain that fully.


----------



## Optimistic

Oh man O really is an amazing young woman. It is amazing how can she can hold up so well emotionally, plan travel and be so determined to go back to school. I forgot where but I think she goes to school in my region. If she does (so hopeful) you know I will gladly go put eyeballs on her for you. We can create a reason for a crazy random internet woman showing up. 

I hope this weekend you can take a break and focus on the rest of your life. It sounds like she is prepared to handle the line, is learning about importance of reporting issues, and needs some fun. Hoping for more improvement in Utah!


----------



## Pilgrim

The thought of her travelling plus dropping steroid levels sounds very risky. She is in a very fragile state.
Praying that being with friends gives a psychological boost to counteract the physical stressors.


----------



## crohnsinct

She reports that she feels FABULOUS!  This is wAy better than her usual "fine". 

Her and her friend handled picc line heparin flushes like experts. She is ready to fire me as her nurse.

She stayed on cded the whole weekend with the exception of one chicken taco that she ordered "trashy". Which means they put queso on it.  In addition to being dairy pretty sure said quest is processed but she got the GI's approval for a 10% cheat so she is quite pleased with life right now. 

She flies to Utah tonight, we pick her up at midnight and start her o/n lipids and fluids again.  Even though she swears she probably gained all the weight her GI wants her to gain over the last two days.


----------



## Tesscorm

O is the ultimate 'where there's a will, there's  way'!!  Even with all the extra coordination and organizing that is currently part of her life, I hope it's smooth sailing until she is truly in a stable place!!  The two of you truly are real troopers!!


----------



## awmom

OMG. I'm so glad she was able to enjoy time with friends (and even a taco!!).  She deserves so much credit for handling the medical/dietary end, which we all know is no easy task, especially in social situations, and for never losing sight of the joy!!  I know you must have been worried and look forward to seeing her tonight.  Kudos to you both!!


----------



## crohnsinct

Hey y'all!  Picked up O Monday night. She looks good. 

As the days have gone on urgency and frequency have picked up quite a bit. Bleeding is down.  She is really fatigued and not wanting to tour or hike or anything really. Tenesmus has returned pretty badly.  She still has 1-3 soft formed stools a day but they are getting looser.

She is going down another 5 mugs on prednisone tomorrow.

Her calpro from infusion posted and it is the lowest it has been in a long while. 400!  So I am sure there is or was some healing going on.

Just have to sit tight and see what happens. Labs and weight check next Friday.


----------



## Optimistic

Glad she is with you. We will take the signs of progress. Do you think the exhaustion is expected with two trips? 

How does her GI feel about FCP? I think some patients and GIs look at levels and changes as an indicator of amount of inflammation. My son’s GI thinks high is high and doesn’t feel much better about a 400 vs 1,000. Maybe that is specific to disease location or history?


----------



## Jo-mom

She has also dropped her steroids significantly so that is also a factor too.  Her little body needs to adjust to everything.  Glad the time away worked out for both of you.  Hoping for great results on Friday.


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## my little penguin

Hugs


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## crohnsinct

Optimistic, YES!  I think she is just not used to all the activity.  After a month and a half of laying in a bed she has to build up her stamina.  She probably wasted what little she had enjoying herself in Texas and now that she is with family she can let her guard down and just be tired.  Plus, the altitude is probably affecting her and the heat.  

Our GI looks at values as an indicator of severity.  When she was at 800 he didn't think it was high enough for the symptoms she was having and he thought she was really experiencing more IBS.  He said be as bad as what she was describing he would expect cal pro in the thousands.  So I am sure a 400 is very reassuring to him.  He also looks at trends.  So someone who was at 800 who is now 400 is going in the right direction.  

He did also say that small bowel disease doesn't raise cal pro so dramatically so a 400 in small bowel disease is more alarming than with someone who has all colonic disease.  

All that said, T had a 465 and he isn't linked an eye.  Also, our old GI didn't pay attention until it was consistently over 500.


----------



## my little penguin

See now the fact 800 doesn’t register action and tries to call it ibs is scary 
Especially since she almost lost her colon 
800 is flaring period 
And for her fecal cal DOES NOT reflect the severity of her disease obviously 
So maybe have a chat about putting too much reassurance into one test vs the persons symptoms


----------



## Tesscorm

I can imagine that her stamina absolutely needs to rebuild.  After being inactive and so sick in the hospital for so long, back-to-back trips and activities would surely drain her.  I hope you both had a chance to rest and recover a bit over the weekend.  How's she feeling today?


----------



## crohnsinct

Thanks Tesscorm!  

Hard to tell how she is.  She has some stellar days BM wise and then some awful days.  Is she is on her way to remission or on her way back to flare town? She is down to 25 mg's of prednisolone now.    

Her weight is stable so that is good, but she really needs to concentrate on gaining.  

She has a dressing change for her PICC Line on Friday and we will do labs and a weight check.  Then her GI will decided if he wants to stay at 600mg's or if we can reduce it.  So I will know more as soon as the results are posted.  I am going to go out on a limb and say she is getting better because we are seeing a lot less blood, a few more formed BM's and less frequency on the good days. 

My favorite part of the Crohn's game...waiting!


----------



## Jo-mom

It does sound like she is going in the right direction.  Waiting is always the most difficult part. Big hugs.


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## Tesscorm

I really hope you're right and she really is slowly improving!!  Why would he drop from 600mg?  If she's doing better and gaining, why change things right now?  But, maybe there are other health related reasons to drop to a lower level??

Lots of wishes all continues to get better!!!


----------



## my little penguin

Second that 
Why drop from 600 mg 
When she isn’t even off steroids yet 
To prove the 600 mg even works 
AND she is still have blood 
She needs to be stable


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## crohnsinct

Insurance is. forcing the drop.  They say there is no evidence that 600 mg A) works and B) is safe.  They approved it as an acute, post hospitalization intervention.  They say that just like other biologics as you heal, you need less drug so they have approved 600 for August but want to see that we are at least trying to reduce the level down.  They are also the ones driving the quicker than usual steroid taper.  

I agree it makes no sense, especially given how quickly this kid tumbles.


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## Tesscorm

I know my opinion is useless BUT insurance should NOT be allowed to drive the treatment for any patient!  That is crazy!


----------



## my little penguin

So wait 
They approved for August 
But you are dropping to below 600 anyways even though it’s approved 
Or doing 600 in August 
And then dropping ...


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## crohnsinct

They approved it contingent on labs.


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## Jo-mom

Good luck tomorrow.  Hoping for good results.


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## crohnsinct

Wowsa!  O is still a little all over the place.  Some days with only 4 BM's, half soft solid with some blood and other days 6-7 BM's with 1-2 soft solid BM's and a lot more blood.  Today had a BM that was almost ALL blood.  

Went for dressing change and labs and VERY happy to report that: 

CRP is down to 2.2, lowest it has been since March! 
HGB is up almost to normal 
HCT is up, almost to normal 
Albumin is stable just under normal 
Sed Rate is down to lowest it has ben since March 

Weight is same as at her last appointment two weeks ago.  Darn!  Was really hoping to start the trial of holding O/N feeds to see if she is ready to go back to school.  Haven't heard from the GI yet.  maybe he will still let her. 

I am thinking Entyvio and the concentration on nutritional status is working.  Sure she is still on 25 mg's of prednisone, but in the past even 40 wasn't able to hold her and she still ended up in the hospital.  

She is off to visit a friend from school who lives 2 hours north of us.  Ironically she has been struggling with some digestive issues and has been admitted for severe pain and vomitting. A third friend of theirs is visiting from the East Coast so she will now take her around sightseeing after they visit their friend.  She is asking the GI if she may stay overnight as she got a late start and doesn't want to drive the two hours home in the dark. It means skipping lipids and fluids tonight but I am sure given the good labs he will approve it.  

I just don't get how she could be bleeding as much as she is yet labs are improving.  I read other posts where kids have spots of blood and their HGB etc are in the dumps.  It is all such a mystery.  

I am assuming we are on for our next step down in prednisone to 20 mg's tomorrow.  Woohoo!


----------



## Jelly loves Peanut butter

Hi CiC, glad to hear Olivia is doing better.  I’ll keep praying for her.   She sounds like such a strong and determined young lady!  She is probably a lot like you.  I’ve read all your posts  but I don’t have as much experience and wisdom as a lot of the other parents so I don’t post as much. Sending hugs and good wishes your way


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## Jo-mom

Jelly loves PB - I agree with you and share the same sentiments.  I also don't have much experience but any support is appreciated. I think CIC and her daughter rock!  I am learning so much from what everyone has to offer and appreciate it when people are sharing their stories, often painful, sometimes good.


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## crohnsinct

Update: 

O's Entyvio levels came back at 44 mid cycle and the GI says that he will drop her back down to 300mg for next infusion and that the jump to 600 did the trick.  

I questioned why we would go back to the same level that was not working and that I was concerned her level would fall over the next two weeks to below the desired trough.  I assumed it was because there is healing going on and less disease activity means slower drug clearance.

He said her clearance should normalize now with healing and that she is already getting twice the label dosing by getting infusions every 4 weeks at 300 mg.  He also said that with anti-integrins, the momentum gets going AFTER induction not during as in anti-TNFs. 

I get it.  600 mg hasn't been tested.  Insurance probably won't approve it going forward.  Blood labs are improving etc.  Doesn't mean I like it. 

This morning her cal pro posted.  >1000.  This was on one week of reduced steroids down to 25mg.  Her last value (one week prior) of 400 was on 30 mg of steroids.    No email from GI about this. 

She is still bleeding.  Frequency is still up.  Still has tenesmus.  Still only weighs 116.5 so no change at all from discharge.  Only good thing is she is still having at least 1 soft semi formed stool a day. 

School starts 8/19 which means she has to leave 8/17.  Haven't had that conversation with the GI.  

Not feeling warm and fuzzy.


----------



## my little penguin

Lots of hugs your way 
I don’t like those numbers


----------



## Tesscorm

That school deadline just adds to all the pressure!     How often is she having bloodwork and cal pro?  When will you be seeing GI again?

Wish you were seeing more obvious improvement - less bleeding, more weight gain, etc.     Still, there is improvement, hopefully, that momentum will pick up before school! ...Hugs!


----------



## crohnsinct

See the GI 8/16, the day before she would have to leave to go back to school.  

So far labs were done at infusion 7/11 and then again 2 weeks later.  She will have labs at her next infusion 8/7 so two weeks after the last labs.  Not sure which labs he is ordered and if cal pro will be on there.  

Yep!  There was improvement as of last Friday.  I am just hoping that the drop in steroids doesn't mean that all labs will start slipping in addition to cal pro but if we pull our heads out of the sand they probably will follow the cal pro.  

She wrote to him about her symptoms and he requested a conference call between him, her and I tomorrow.  I will let you guys know what happens.  

Anyone care to play "Outguess the GI"?


----------



## my little penguin

You know my opinion
But for those playing the home game
It will be
School is ok
But call if xyz happens
Otherwise we are all good


----------



## crohnsinct

Haha...yep!  I agree MLP.  

I am also thinking he will o.k. school.  "no school" isn't a decision you deliver over the phone.  I am guesing call will be, "let's see, what can we do to get you to school?".  So probably, let's add...enemas or methotrexate.  Or maybe even, should we add humira or stelara.  Or maybe he is just calling to ask more pointed questions to get more info in order to make some sort of a decision. 

I am just super curious about when surgery is going to be mentioned again because it feels like it has been so long, I don't want to have that rug ripped out from under us again.  It looks like maybe we are a bit closer....if Entyvio doesn't hurry up and decide to work. 

The thing with her cal pro is I don't think it is simply rectal disease that is causing the increase as rectal disease doesn't typically elevate FCP so dramatically.  It is like the TI in that raises it a bit.  It is really more colonic inflammation that gives those dramatic increases.  

Ahhh the suspense of it all!


----------



## Tesscorm

Ugh...  I just wish everything was going a bit more smoothly...  so many balls in the air!!  And, I just think it's wrong to change anything (steroids or entyvio) until she's on firmer ground, especially with school coming up.  I get that the GI also needs to work with insurance, etc. but, whatever the reason, it's still wrong to not let O get the healing onto sturdier ground!   

I'm sure this has been discussed earlier but can the steroid taper not go more slowly to give entyvio more time?

And, yep, I totally agree with MLP as to how the coming phone apptmt will go...

_School is ok
But call if xyz happens
Otherwise we are all good_

But, I suppose there isn't much of an option...  she's already missed summer courses, I can't imagine what it would take to convince her to miss Fall courses...


----------



## crohnsinct

Had conference call with GI this a.m.. 

Started off by saying he felt we would be jeopardizing her momentum by putting her in a higher stress (on the body not emotional stress) environment and less proactive ongoing care.  He did say he thought if she went back it was likely inflammation would get worse.  He didn't want to send her back with a PICC Line.  

No perfect answer.  Her well being and deep remission have to be #1 priority.  

IF she goes back she will need to go back with PICC Line as she is not gaining weight and pulling it will result in severe weight loss and immediate flare.  IF she goes back, she will need a local care provider she can see weekly for weight checks, labs, stool discussion, PICC line management and overall look see.  He would need access to this professional and weekly calls and to have this provider on speed dial so to speak.  

He said Entyvio is VERY slow and takes time.  Even though her last cal pro was high her last labs were encouraging.  We asked him why he thought they were so good when her bleeding is so bad.  He said her bone marrow has just gotten so good at pumping out new blood and is working in over drive so it won't show up on labs.  

He opened the door and she shoved her whole body through.  She has spent the day researching providers in the area and will give him names and numbers.  He will call them over the next week to see if anyone is willing to work with him.  

We will keep checking in weekly and if something moves one way or the other maybe the decision will be made soon.  She has infusion next Thursday and those labs might help.  

He wants her to rest as much as possible over the next three weeks.  Also to consider IF se goes back taking a lighter load (4 classes instead of 6).  She will entertain dropping one other majors down to a minor.  

So we are no further along.  But at least she heard how tentative he is. But I am afraid all she heard is there is a chance.


----------



## crohnsinct

Kittz128 - not rude.  you are asking them same question a lot of us here have been asking.  I asked it a lot when she was inpatient and they talked in circles.  I never got a clear cut answer.  When it came time for discharge the bottom line is no one would provide total PTN for a Crohn's patient on an out patient basis.  Insurance won't approve it, hospital won't manage it etc.  They are loathe to send patients home with a PICC.  So Lipids and fluids are the best we could do and those as sole nutrition aren't enough.  Of course we could then ask why not EEN and I don't want to go down that rabbit hole again. But what I will say is during one conversation I was told EEN is not exactly "gut rest".  TPN goes into the veins and avoids the gut completely.


----------



## crohnsinct

haha...no.  They give it to pople who absolutely can't get their nutrition any other way but not to a Crohn's patient who could do EEN.  They will absolutely approve TPN inpatient though and she had it for 3 weeks...just not complete gut rest.  Her GI wanted complete gut rest but when she was inpatient it was the roulette wheel of attending and none of them (except the last one) agreed with her GI on gut rest.  They kept pushing food.  So as long as she was there she got TPN but as soon as it looked like she could go home and we couldn't find a company to support the TPN and insurance wasn't approving it we moved to lipids and fluids.  

Right now by bigger concern is getting her on a therapy that will maintain her.  It doesn't seem to me that Entyvio is going to work.  IT has been 16 weeks and she has been on Tacrolimus, IV steroids and oral steroids also had a dose at 600 mg and it still isn't handling disease.  IDK how much longer the GI is planning to give this drug.  If she goes back to school clearly until December.  UGH! 

Funny how hospitals differ.  My friend was in the adult hospital next door to my daughter and she said they also gave her a hard time about sending her home with a PICC.  They eventually did but pulled it out soon after as one of the docs was appalled they sent her home with it.  Just weird.


----------



## Tesscorm

Wow, so stressful when everything is so uncertain and decisions need to be made last minute!   Not the ideal situation for any control freak!  LOL

But, at least, there's progress in that O and GI are considering a local GI for care...  and, GI is considering sending her back with PICC....  

Is there any possibility that O could take some Fall classes closer to home and transfer the credits?  Or online courses for her minor?  Both my kids did a couple online courses over the summers to get the credits and ease up on the regular semester demands...


----------



## crohnsinct

Well we are no closer to a decision about school BUT GI has requested she not taper further until her next clinic visit 8/16.  Meanwhile, we are still looking for a care provider close to school. 

Unfortunately she is at the upper level of classes and classes in her major so online classes are no longer an option.


----------



## crohnsinct

^LOL how many times can one say classes in a sentence?!


----------



## my little penguin

Maybe???
Never too many drinks    in a sentence


----------



## crohnsinct

^ AGREED!  To bad we cannily hit the like button once!


----------



## Jo-mom

It appears from your last post that perhaps you have had a few vinos already? LOL.


----------



## Maya142

> No perfect answer. Her well being and deep remission have to be #1 priority.
> 
> IF she goes back she will need to go back with PICC Line as she is not gaining weight and pulling it will result in severe weight loss and immediate flare. IF she goes back, she will need a local care provider she can see weekly for weight checks, labs, stool discussion, PICC line management and overall look see. He would need access to this professional and weekly calls and to have this provider on speed dial so to speak.
> 
> He said Entyvio is VERY slow and takes time. Even though her last cal pro was high her last labs were encouraging. We asked him why he thought they were so good when her bleeding is so bad. He said her bone marrow has just gotten so good at pumping out new blood and is working in over drive so it won't show up on labs.
> 
> He opened the door and she shoved her whole body through. She has spent the day researching providers in the area and will give him names and numbers. He will call them over the next week to see if anyone is willing to work with him.


I would say the best option here would be for O  to take a medical leave of absence and focus on getting well. If she can't do online classes, I think the best option would be to take classes at a school close to home and close to her doctors. 

That said, I have an incredibly stubborn young adult daughter, whom, as you know, had major surgery recently but is  still absolutely insisting that she will go back to school in 4 weeks. So although for O the best option would be to keep her home, get her well and maybe take a class or two while she's at home for the fall semester, I know it is NOT going to be easy to convince her to do that!! 

But my daughter has done that, as a "visiting student" at a state school and a local state college. It is does become more difficult when your kiddo has declared a major and has to take upper level classes for that major - those classes can be hard to find. Sometimes it's possible, such as if the class is a higher level class but has a pretty "standard" or similar curriculum at most schools - I'm thinking of my daughter who considered taking Calculus III (multivariable calculus...I think . Math is not one of my strengths) at a local school. She was able to find a class nearby and got it approved but due to medical reasons, she didn't end up taking it. She did take an Intro Biology class at another school and transferred the credits to her school - that was a major requirement but because she got permission from her advisor, department chair and her dean, it was allowed.

Does O have distribution requirements left - that she hasn't taken? Because now if my kiddo has to take more time off, she is hoping to finish up distribution requirements at a  state school or college near us, but she'd need to get approval beforehand. But it is apparently. possible.

And she's going to hate me, but has her GI considered sending her back to school on partial EN? Because it is sounding like she needs the PICC line for good nutrition and calories, but she is still eating food, so it's not really for complete gut rest. So then would an NG tube work? She could do tube feeds overnight, by herself. No one has to know. The risks of infection and sepsis are SO much lower...

Sorry,  don't shoot the messenger   !! Just was wondering if she'd consider it at all...It just seems so much safer.


----------



## crohnsinct

She can't take classes close to home.  We have looked at all the schools near us and none have her program. 

She went into school with a good number of credits due to dual enrollment when she was in high school and AP credits.  She couldn't apply to her major until she was dome with her sophomore year so spent the whole first two years working on all the other coursework.  So she only has her major classes left and her university will not transfer credits taken elsewhere for major classes.  

We looked at transferring but the closest school to us is still a flight away AND she is adamant she wants to go back to HER school so....... 

I have also thought about switching from the PICC Line to an NG tube.  Sure she doesn't want to but she is asking for a lot and if she wants to go back to school you would think she would be willing to make some concessions eh?  I will ask her GI tomorrow if it is even an option and then present it to her.  Honestly it is in her best interest because then maybe.....just maybe.... she can still swim on the club swim team which is a huge part of her life on campus....that is if the GI will agree to it.  Swimming burns an awful lot of calories and probably puts a lot of stress on the body. 

She had a great weekend so here's hoping she turned the corner.


----------



## xmdmom

What exactly is she getting in the PICC line? I recall: fluids and lipids. Can you share what/how much?

I'm still unclear on how beneficial the PICC line fluids and lipids are for her.  Does the GI cite any studies or personal experience with IV lipids and fluids  in individuals like her?  Almost all of the articles are about TPN (rather than partial), and the consensus seems to be:   "Parenteral nutrition is indicated only when enteral nutrition has failed or is impossible." and ""TPN does not compete with enteral nutrition (EN), the latter being the first choice for all patients having anatomically intact and functionally normal digestive tract."  (from this  and this)   You might be interested in this European guidelines on parenteral nutrition (2009) here: https://www.clinicalnutritionjournal.com/article/S0261-5614(09)00096-X/fulltext 

It's confusing to me why the GI has offered her the possibility of going away to college with PICC line after previously telling you no PICC line was a condition for going back to school.  I do not know what the actual % risks are.  Clearly no PICC line is safer than a PICC line but can her GI tell you the actual %risks of complications and what /how serious the complications are?  I can see from your daughter's point of view, if the doctor is offering it, it must be safe.  

With the PICC line, she couldn't swim at all, right? That would seem to be a major negative for her.  Is there a possibility that she thinks she could use a waterproof cover to swim with the PICC line?

Is independent study with professors at her school possible? Have you/has she spoken to a dean or department head at her college to find out if any distance learning with her professors is possible. (I know this isn't what she wants but it would be good to know the options.)

I'm glad to hear she's doing better, and hope things improve every day!


----------



## crohnsinct

xmdmom:  Sure thing!  Always appreciate your opinion....

The Lipids label just says Intralipids 20% She gets about 265 ml's over 12 hours which they say is 1gm/kg/day.  They have her weight at 53 kg.

Fluids are .9 Sodium Chloride 1000ml over 12 hours and she only gets that Mon, Tues and Wed.  We always have an extra bag on hand for days she may have a lot of diarrhea or if she starts vomitting again.  So far we haven't had to use it.

I totally agree with you and am planning to ask him if we can switch her over to PEN now, keeping the PICC Line in just in case it doesn't work.  If we are successful, then my hope is they will pull the PICC and send her back with PEN.  As a matter of fact, the success with the CDED diet was with PEN.  He asked us to lean toward the CDED diet so it makes sense to do so with PEN.

Great idea about distance learning with her professors.  I asked her about it but she fears it won't be possible because they are moving into clinics etc (Speech Pathology) but I will have her ask.  She is a double major with Child and Family Development.  Both majors require an internship so I am also going to have her ask if she can do her internship here this semester and then she won't even fall behind.  Might be a hard sell given she goes to an SEC school and fall is football season...priorities people


----------



## crohnsinct

Score one for the Forum!  

I spoke with the GI and made my case for PEN and he agreed.  He even thought it would be best if HE presented it to her so maybe she would go along with it better.  He thinks that drinking it may even be an option as then we can adjust the intake for however many calories she will be eating throughout the day. 

I also pushed him on what the plan is if Entyvio is a fail.  If another drug and that takes time to kick in this means another few months of her status being "iffy" at best.  If surgery, then maybe just best to keep her home and get her as healthy as possible for that and have it before she returns to school for spring and she can hit the ground running. 

He said he is not thinking of abandoning Entyvio anytime before Thanksgiving.  He has had too many success stories by waiting for Entyvio to work. Just ugh!  That means she will have been on Entyvio almost 8 months.  

If Enyvio fails he is thinking Stelara next. Then surgery BUT by then maybe another drug will have been approved.  

The call is scheduled for Thursday.  We will at least have another round of blood labs then and cal pro will result over the weekend.


----------



## my little penguin

Fingers crossed GI can convince her 
8 months of Entyvio 
Then another 6-8 months to see if Stelara works 
Wow  
That is a very long time


----------



## crohnsinct

^ Right?!  On top of the 3 years of a flare she was in while everyone was claiming IBS!   I am afraid the kid has no idea what normal feels like anymore.


----------



## Maya142

YAY score 1 for the committee!! At least her GI is bringing it up...I know getting her to agree with it is a different thing entirely. I hope he will tell her that it is MUCH safer than a PICC like and he doesn’t feel safe sending her that far away with a PICC line since she becomes septic very fast. I feel like school is the only incentive which might get her to cooperate.

I would prefer semi-elemental formula but at this point, I think any formula is FAR safer than parenteral nutrition.
As you know, my kiddo is hospitalized and we have been told all the risks that come with PICC lines  since she is such a hard stick (she’s had 14 IVs placed in a week now). A PICC line was discussed and her surgeon refused, given her immunosuppression. I was actually pushing for one because of how often her IVs were blowing or failing and how hard it was to find a working vein even with ultrasound, but after hearing the risks, even my daughter decided she’d rather have a new IV put in daily and deal with being poked often (around 2-6 times for every IV that was placed!)

Feeding Tube Awareness is a website with lots of resources in case she agrees to a tube. Lots of tips and tricks.

Poor O - 8 months on Entyvio is a very long time.!


----------



## crohnsinct

O had her infusion (at 300mg) today.  The nurse read me her lab results.  I don't remember exact values but H&H was best it has been in a long while and normal.  Albumin was also normal.  I just don't get how H&H could be normal with all her bleeding but I will take it.

Unfortunately her CRP is up to 4.2 mg/dl from 2.2.  The 2.2 was two weeks ago.  She was on 25mgs of prednisone.  4.2 is on 20mg's.  She was supposed to drop down to 15 last Saturday but given the >1000 cal pro he told her to hold at 20mgs. 

She has only gained 3/4's of a pound since dx.  

We have a conference call with the GI tomorrow about returning to school and PEN or EEN. I am hoping the combined increase in cal pro AND CRP has him rethinking letting her go to school.  I just don't see things getting much better.  Unless he increases steroids?????

Ohhhh the suspense of it all!


----------



## Pilgrim

I think so too. A GI can rationalize away a calpro, but less so crp in our experience. Increasing steroids may be necassary but it is a big ol' bandaid.


----------



## Maya142

Any news CIC? How's O doing? Thinking of her and you!


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## crohnsinct

Hey y'all.  Sorry I disappeared.  I was away with T looking at a college at a recruiting event for softball.  Yeah, it is a rural school.  Will my girls ever learn? 

Anyway, we had our phone conversation with the GI.  He avoided the PEN/PICC Line talk.  Also avoided the going back to school talk.  Only said, "if you go back".  I was able to find a doctor who would see her weekly and passed along that info and GI said he would reach out to her so I am thinking we are on track to send her back. He feels the labs are really encouraging.  Well all except for CRP which. he is putting down to the fact that she was at the end of the Entyvio cycle.  

She is still going >8 times a day, still bleeding, still getting some pain, still sometimes feeling "icky" BUT looks great, is chipper and off enjoying life. 

The big news is he said he doesn't want to add rectal tacrolimus or Xeljanz.  Xeljanz was a surprise to me because he has never once mentioned that.  Instead he wants her to try an over the counter, plant based prebiotic called Gut Rescue.  He feels it will help rebalance her micro biome and help with the frequency, urgency and tenesmus.  We got home yesterday and started it.  I will let you all know how it goes.  

While we were away she managed to gain 2 pounds and that was with skipping three nights of lipids.  Encouraging but I have learned not to get attached to weight gain with her.    

Her and I discussed PEN because I can't wait for the appointment on Friday.  If she goes back, she leaves Saturday!  She said she would actually prefer drinking two shakes a day (equivalent calorie count to the lipids she is currently getting) to the PICC Line.  

I let the GI know this and he changed her dressing change appointment on Friday to a possible PICC Line pull.  If you ask me, he probably should've stopped her nightly feeds and had her start drinking the two shakes a day starting yesterday so we would have 4 days of data before the pull but I am just a mom.  

I let y'all know how Friday goes. 

Her cal pro from last week's infusion posted.  >1000.  Not surprised.  It had only been two weeks since the last one and no change in therapy and she was at the end of Entyvio cycle.  I more telling value would be if he pulls labs with cal pro two weeks after her last infusion.


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## my little penguin

Thumbs up on the picc line pull 
And pen 
Not liking the other stuff


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## Jo-mom

Very interested to know how Gut Rescue works out.  Thanks for the update - not all bad - not all good.


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## Maya142

Still worried about her going to school, but I'm REALLY glad the PICC line won't be going with her!! I feel like shakes are SO much safer - no need to worry about dressing changes, keeping the area sterile, infections etc. Shakes are much easier. I'm so glad O feels the same way!

That said, I'm concerned about her going back so sick...FCP is very high, still having many BMs, still bleeding, still at a pretty low weight. It seems like she's still really flaring and I'm worried about her going back to school in this shape. If she insists on going, I hope she can take a lighter course load. 

Though I really wish she'd consider taking the time to heal so she can go back to school feeling really good next semester - I'm worried if she pushes herself now, she'll end up hospitalized again.

It is interesting he said Xeljanz - it is approved for UC. My husband is on it with no side effects (well, we think he's on it - he's in a clinical trial so it could be the placebo). There is a new warning for the higher UC dose - I think the higher dose puts you at risk for pulmonary embolisms and blood clots. We actually considered pulling out of the trial but then heard that these warnings only apply to the higher UC dose.

However, it still might be worth discussing in more detail - my husband was told during the clinical trial that Xeljanz is actually considered a small molecule JAK inhibitor and not a biologic (in the arthritis world, anyway). He actually is planning to ask the researcher whether it can be added to a biologic and what the likelihood of getting that approved is - he is asking for my younger daughter, not himself.

As for the Gut Rescue probiotic...well, I'm not that hopeful. If Tacro, steroids and high doses of Entyvio are not controlling her Crohn's, I really doubt a probiotic will work.


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## crohnsinct

Hey y'all. Big Day here.  

To catch you up.  Gut Rescue didn't help.  Things actually got a tad worse.  Yesterday was a terrible day.  Pain increased to an almost constant and then she got sharp pains.  BM's are soft formed BUT flat ribbon or pencil thin.  She feels better after she goes.  Still seeing blood with almost every BM but a lot less.  Maybe like 2-3 tbsps as opposed to half the hat.  But she looks good.  

Had her appointment with GI today.   Her weight is still up 2.5 pounds from discharge and 10 pounds from her scary low.  Still 10 pounds down from her regular weight.  GI says: 

Her color is better. 
She has more muscle tone. 
Better weight. 
She is more warm. 
Not as frail as she was but not great either. 

She updated him about pain and thin stools.  Frequency about 8-11 a day.  Regular appearance of blood.  

He said if we pull the PICC Line and she agrees to 2 shakes a day, she could go back to school BUT in his estimation there is a 30-40% chance that she will have to withdraw and come home.  

She agreed. 

She asked if she could take 18 credits (remember previously he asked her to go back part time).  He said "ok if it won't put undue stress on you" She said, "that is what I have done every semester so far".  He approved. 

She asked if she could swim on club team.  He said, "but swimming burns loads of calories".  She said, "how about once a week and we see how it goes, if I can maintain weight I will try twice a week".  He agreed. 

His requirements are daily check ins with mom, weekly with on campus doc and he gets to have open dialogue with campus doc, weekly check ins with him.  She agreed. 

Then while she had him on the ropes she went in for the kill.  She asked him if she could go on a trip with school to Peru over December.  He said he wasn't ready to decide that yet.  I mentioned the yellow fever vaccine and while it isn't legally required to entire the country, she would be in some areas that will be precariously close to known yellow fever areas.  He said that since Entyvio is so gut selective TECHNICALLY you could get live vaccine BUT they are still deciding on what the society recommendation on that will be so we have to really wait to see A) how she is doing and B) what the vaccine advice will be and C) advice from a travel doc.  So she will apply for the trip and we will take it from there.  

She is stopping Gut Rescue.  She is the first patient he has had that hasn't done well on it.  Go figure.  

Decreasing prednisone to 15 mgs.  He said under 20 you are not steroid dependent, meaning the steroids are't controlling the disease entirely so we will see what the disease response is.  

I am not going with her.  A few reasons not the least of which is she doesn't want me to go.  But also because I really don't think she will tank the first week there (I know she has in the past but she wasn't this good).  We have to pull off the band aid at some point.  

It is unsettling to say the least.  I want to trust that she will self report but......

She is getting My Fitness Pal and will track food there (she is still on CDED). 

She is getting a symptom tracker app and will track BM's etc there.  

But she has to actually use them and report and not forget and tell the truth and....... 

We can't get tuition insurance so this is a huge monetary gamble.  Tuition insurance will cover pre existing conditions but only if there hasn't been a therapy change in the last 60 days.  The hospitalization counts as a therapy change and makes her uninsurable.  LOL - the guy on the phone said and I quote, "If she was in the hospital for 33 days and only got out 6 weeks ago why is she going back to school".  Maybe he should be her doc? 

So there you have it!  She will come home mid October for an appointment with GI.  She is mad because for her fall break (4 day weekend) she usually goes south to the beach but come on!  When is enough enough.  You got basically everything you wanted...you can come home in October!


----------



## my little penguin

Some folks watch horror films 
We have to watch our “kids” be in the driver seat 
So not looking forward to “adult” the early years 

I think lots of wine is in your future 
Is her round trip ticket home open ended .
Not surprised 
But reality is a while other thing


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## Maya142

How many credits is considered full-time, CIC? 18 sounds like a LOT to me. How many classes is that? How many classes do students typically take at her school? I sincerely hope she is not planning to take more than 4 classes...at most schools that is considered full-time.

In terms of withdrawing, we have some experience  - both my girls have had to withdraw. In both cases, the schools had a policy saying tuition refund was prorated - the earlier they withdrew, the more money we got back. After my older daughter had withdrawn once, we got tuition insurance. Thankfully, she did not have to withdraw again in college since we were able to get her disease under control.

When my younger one went to college, we automatically got tuition insurance because she was in much worse shape than her older sister when she started. As you know, she has withdrawn more than once due to her health - to have surgery, during a terrible flare etc. But she knows that she has to make the decision early in the semester - if she withdraws before the course drop date (which is in early October and she typically starts school around Sept. 5th), the withdrawal does not show up on her transcript. If she withdraws after that date, her transcript would show the courses she was taking and instead of a grade, she would have a W for each course. And it would say she withdrew during the Fall 2018 semester, for example.

She obviously does not want anything on her transcript if she can help it, and we don't want to lose an entire semester's tuition, so if she goes to school in bad shape (as she did last semester) and realizes she needs to withdraw, she does it as soon as possible.

However, for emergencies or if her disease just flares badly late in the semester, of course she could still withdraw. Health comes before tuition - we always tell her that. But that is where the tuition insurance steps in - if she were to withdraw half way through the semester, it ensures we'd get more money back than if we had just relied on the school's policy.

To be honest, I really do not think she is well enough to go back to school. I think she could really jeopardize her recovery, which has been slow anyway. She's still really flaring and it's very possible it will get worse when she reduces her steroid dose to 15 mg. It worries me that on 20 mg she currently still has many BMs, still has diarrhea half the  time and is still bleeding. We have no idea at all if Entyvio is working and considering her symptoms even on steroids, it doesn't seem to be working yet. 

Pushing herself to go back to school is not going to help matters. I wish she would consider a semester off and actually let herself recover. I agree that if she tanks, I doubt it will be the first week. 

I wish her GI would tell her that in his opinion he doesn't think she should go. She is clearly not well enough. I find it insane that she manages to convince him every time - she's underweight and bleeding and he okays school, a full course-load AND swimming?! Has he not learned his lesson - he let her go in the summer, she ended up septic and was hospitalized multiple times...and she's still quite sick and on steroids and yet he lets her go AGAIN?!


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## Maya142

> Some folks watch horror films
> We have to watch our “kids” be in the driver seat
> So not looking forward to “adult” the early years


So true...whoever decided an 18 year old is considered an adult clearly did not have kids !!


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## crohnsinct

She will be taking 6 classes.  18 credits.  I am concerned.  I have asked her to consider only 4 classes = 12 credits and her response was, "what's the point of going back then?".  STUBBORN and DETERMINED!  

I am rethinking the first week tanking comment.  We are changing a lot all at once.  Pull PICC Line, go down in steroids and go back to school.  The past two times she tanked at the week mark or shortly after.  ARGH!  To quote THE CLASH, "Should I stay or Should I Go?"


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## Maya142

6 classes?! 4 classes is standard!! She shouldn't be taking more than 12 credits...Isn't it better to take 12 credits and stay in school than to take 18 credits, push too hard, tank and end up hospitalized and have to withdraw?!

I know she is trying to do two majors and a minor, but she could make up the missed classes next summer when she is WELL! 



> I am rethinking the first week tanking comment. We are changing a lot all at once. Pull PICC Line, go down in steroids and go back to school. The past two times she tanked at the week mark or shortly after. ARGH! To quote THE CLASH, "Should I stay or Should I Go?"


That's a good point - you're going down on Pred, pulling the PICC line and increasing the physical stress on her body (traveling, doing much more activity than she is used to) all at once. Plus, with drinking shakes, she has to make sure she is also eating enough, otherwise the shakes stop counting as extra calories!

 Would she let you go with her?


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## crohnsinct

Well she really doesn't want me to go and wants so desperately to prove she "can do it".  

Here is my new plan....it will take a while to tank.  First time it was a week to the day.  Second time it was 10 days.  So I will let her go down and figure out her plan/schedule etc and then in a week or two I will go down and "visit" her.  By then, she will have worked out the kinks on her own and I will be better able to assess if her plan is working.


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## Jo-mom

I'm away at a friend's cottage and am catching up  now. OMG!  That is a big course load.  I too would think not going  back to school at all and starting up again when her health is much better would be a better idea, but I know you can't convince her, and she obviously can sell manure to a farmer if she can convince her GI to let her go back with a bigger than average course load and then swim too.  

So the plan is she goes back to school, and during that first week, you drink as much as you possibly can because you won't be able to once you go check on her.  Big hugs.


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## crohnsinct

> So the plan is she goes back to school, and during that first week, you drink as much as you possibly can because you won't be able to once you go check on her. Big hugs.


I LIKE your plan but there is faulty logic.  Who says I can't drink when I go down there?  Do you guys not have Uber up in Canada?  We could Uber (ride service) to the hospital!


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## Maya142

That's what i was thinking too - she won't tank immediately but might in a week or two, depending on how fast her GI wants to taper her steroids. Even the switch from 20 15 might really worsen her symptoms.

She is one brave and determined kid!! Also incredibly STUBBORN - she reminds me of my incredibly stubborn girl .

Also meant to ask - has the doc considered appealing for the suppositories? If he can get 600 mg of Entyvio approved with NO research supporting it, I'm SURE that with some persistence he can get suppositories approved. We have done it many times for meds - we follow up with insurance daily or every few days until all the paperwork has been sent and we also get the doc to mark it as urgent and stay in touch wth whoever is in-charge of  getting prior authorization or a waiver if it's not on the formulary. 

Generally we are successful. Sometimes it takes quite a while, but usually we're able to get whatever approved - we just did it for a higher dose of Zofran for example. It required two appeals and a peer to peer review. Based on what you said, it sounds like if it's not on the formulary, so you may need to get a waiver. We did this recently for a particular pain med for M's surgery and were able to get it done within 2 days. Your doctor has to fill out a form, if I'm remembering correctly, but besides that it's quite easy. 

Just thought they might help her while she transitions to school. I know you mentioned that even during trip to the mall, she was needed to go to the restroom a zillion times and that she was totally miserable. 

It's only a band-aid fix, but at this point she needs even that.


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## Maya142

> Well she really doesn't want me to go and wants so desperately to prove she "can do it".


This has been one of the hardest things for M - seeing her friends become independent. They just graduated from college and if she hadn't taken so much time off for medical stuff, she would've graduated this year too. It hard to watch them do such amazing things. Some are going to grad school or med school, some are traveling all over the world (she has one friend in Rwanda right now, another working in Hong Kong, another who is backpacking in Europe and then goes to Asia). Others are beginning new jobs. They're all starting to move into their own apartments and out of their parents' homes. 

Meanwhile M feels like her life is stuck in the same place, while her friends are moving forward. And so she says she feels "behind" .

It really bothers her but she's working on it with her psychologist. It's so, so hard to accept, especially at this age when most of your friends feel and act invincible .


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## Optimistic

I really shouldn’t give advice because I’m sort of in a sh%#show myself with a young “adult”. I know our power over them is limited especially when dr is on their side. 

But 1.5x class load is ridiculous for a sick person. If you pay for her school can you say you only pay for regular load?

I know we also need to consider her mental health and how not listening to her wishes might impact her given all she has been through. Does she have a counselor that might be open to seeding some messages you provide about playing long game etc?

Big circular argument. I don’t know what to do.


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## Optimistic

Forgot to add that in my experience going from 20mg to 15 pred was a nightmare. Maybe not for her bc she has so much experience with pred?


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## my little penguin

So my ONLY  advice 
Can you get her /you to a psychologist that handles chronic illness ?
Because often what we as parents “think” is going to help the kiddo navigate /learn etc... this crazy illness is the exact opposite of what may work for that particular “adult-child” in order to do the right thing medically 
A psychologist can be a good impartial (as in sound person aka not mom ) she may listen too


And they can help you help her


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## crohnsinct

All great posts! 

Maya - yes, we appealed the suppository decision and it was denied again.  I know there are other levels but at this point he is considering tacro enemas. 

Optimistic - I like the way you think!  I am paying and I will only pay for this many credits.  Think that is what we will say...only problem is I think full time tuition is from 12-18 credits so it may not make sense mathematically but she is a health science major so here's hoping 

MLP - Great point!  This makes me soooo mad!  I had asked for a psych consult while inpatient.  The clinic psych came by and she loved her but she couldn't see her while inpatient.  She said when you get out, I will be here.  Her GI said the doc gave him a good plan but then no one presented it to her and she seemed to not need it.  It would have been great if we had started treatment eh?  It would have helped with this decision!  Definitely would have helped me with dealing with her and like you said in how I should present/handle things.  DANG!  Hindsight is 20/20.


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## Maya142

> But 1.5x class load is ridiculous for a sick person. If you pay for her school can you say you only pay for regular load?
> 
> I know we also need to consider her mental health and how not listening to her wishes might impact her given all she has been through. Does she have a counselor that might be open to seeding some messages you provide about playing long game etc?


Honestly, I agree with Optimistic. You may need to tell her you will not let her go back unless she agrees to your terms. I don't know how else to get her to understand how sick she is - that she could lose her colon, that she could become septic etc. 

I'm worried she is not thinking about the strain on her body just doing regular things - is she well enough to cook for herself? To go grocery shopping? Clean her apartment? Go to class and to office hours? It sounds like she is struggling at home and at home she doesn't have to do all that stuff. She's leaving today, right? 

So I guess we'll find out  . 

A psych is a great idea - I wish she would see one at school. But  I know she is in the middle of nowhere and adding one more thing might be too exhausting, though I think it would really help her. Does the health center at school have counselors?


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## xmdmom

What a hard situation!

When we see someone choosing a path that we think is wrong or dangerous, we usually try to convince the person to change.  However, the more we work to convince them, the more they may give reasons to support their position.  I am guessing that she has some concerns about going to college and taking so many classes but she has put her focus on convincing everyone that her plan will work.

You could see if she'd be willing to do a decisional balance exercise where she tells you and writes down all the pros and cons of taking so many credits vs taking a lighter load ( or of going to school vs taking a semester off).
You can make a grid like this but I would change the writing from pursuing the opportunity to "taking 18 credits"  vs "taking 12 credits or fewer credits"  (or going to college this semester vs staying home for a semester.) I would start with the pros of her plan, so she can voice all the pros of her plan without anyone commenting. Then I'd move on to cons of her plan.  If she says a con of doing so many credits is that it might be stressful, you could ask her if she can think of any more cons, and then ask her to write them down.  Then, you can ask her what are the consequences of  each con.  She should write everything down (example: risk of flaring -->possibly having to withdraw ---> losing $$,  flaring -->weight loss --> needing a picc line or NG tube or lots of icky supplements).  

In this exercise, it's very important that it is she who is thinking of the pros and the cons, not you, and that you don't express your opinion (though I'm guessing she knows it). If she really can't think of any cons to her plan, you could ask her to think about social, health, financial, academic consequences but* she's the one *who decides the pros and cons and writes them down. When she writes out all *her* pros and cons, her decision might be different or it may be the same but in any case, she might be more aware of all of the issues involved. 

Alternatively (if she doesn't do the exercise above), you could ask her, "Why might it be a good idea to take a lighter load?"  She might say, there are no reasons but she might think of one or two.   It is much for powerful for her to think of reasons for the lighter load than for her to hear someone else's reasons.

I'm wondering if you think she would make the same decision if she were paying, given the risk that she may need to withdraw.  If you end up paying and she withdraws, can you afford to pay for an extra semester?


----------



## crohnsinct

Being mathematical and analytical I LOVE that idea!  Clearly you didn't like my plan of lots of alcohol  

We actually used it for her decision of which school to go to when she applied to college.  Our only problem is I was banking on the doc saying stay home so wasn't prepared and she left this morning!  ARGH!  She is so stubborn and laser focused though that I really don't think she would come up with many cons.  She might think differently of the financial aspect if she were paying but she knows we happen to be able to afford the extra semester so not likely it will change her mind.  Plus my girls are such daddy's little princesses and they know he will not say no to anything.  

Classes don't start until Monday so I am going to have her do this exercise with the 6th class thing.  Again, the only problem with that is the 6th class is the last class for her French minor and it isn't offered often.  She is in her junior year and scared they won't offer it in spring or her senior year.  maybe she can reach out to the French chair and ask and that may help.  The other 5 are required to stay in her other majors.  Yeah, I asked her to consider stepping down to one major.  Her argument for that was the second major is her safety net should she not get into a grad program for her first.  The kid has an argument for everything.  Seriously should forget speech pathology and go into law or politics!  

She seemed pretty level headed when she left.  She was up through the night going to the bathroom and her pencil thin stools were concerning her and she said she wouldn't let it get much worse without a call to the GI.  I think I trust that she won't push too hard.  She said she just HAS to try.  It would kill her if she stayed home laying around with nothing to do.  Plus she has no friends out here because we moved a week before she went to college.  One of her arguments is that she will be happier back at school and that positive energy will help her heal

I feel a little better now that she is gone and I will go down in a couple of weeks.  Also, good that she is checking in with the med clinic weekly and they are sending updates to her GI.  Things shouldn't go too far astray.  If the steroid taper causes issues it would have caused them there or at home.  Just would be easier if she were home.  

O.K. I am rambling now and honesty I haven't been drinking!


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## Tesscorm

Just lots of wishes that all runs smoothly for her at school and no more obstacles for her!!  (But glad you'll be there in a couple of weeks to see how she's really doing! )


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## Optimistic

CIC- how was first week back at school?


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## crohnsinct

Hi Optimistic!  Thanks for asking!  Sounds like it is going pretty well.  

She did end up taking the 6 classes and she is loving them all. 

She has not started back to swim.  

She said CDED diet was too hard away at school and was causing her too much stress which resulted in her avoiding eating. therefore she quickly ditched the diet and has been eating 2400 to 3000 calories a day and much happier.  Her GI approved it because she is eating better and she is on a biologic so we weren't exactly using the diet as treatment anyway.  She is still drinking 2 shakes a day.  

Her frequency seems to be down to 6-7 a day, half liquid/half soft formed (pencil thin or ribbon thin), half with blood and even when there is blood it is less than before.  She is being woken up every night though so that isn't a great sign. 

She is fatigued but she is putting that down to the heat and the increase in activity (probably also a little bit attributable to the night time waking).  

She went for her check in at the school med center and her weight is a pound and a half lighter than when she left but we are putting that down to a different scale so next week will be telling.  

I actually may put off my visit for a bit and see how it goes.  She comes home second week of October for her GI visit anyway.  

Probably a little more of an update than you expected eh?  Good probably would have been enough


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## Optimistic

You know none of us would “accept” a simple good for a status update!  We “need” details so we can give nine opinions on her drs and treatment! Just kidding. 

This does sound like process. I don’t know how she does it. She seems to really thrive at school so maybe that helps. I think we can celebrate fact she visited the school medical center. I’m hoping the night time waking (and pencil stools and bleeding) improve!

Keep us posted.


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## Jo-mom

Sounds like improvement, although very slow, it is an improvement. She has an appetite, that's good.  Her BM's have reduced (although still too many and not totally formed) - but still better (and this is also with the reduction of steroids); she is bleeeding less; etc.  Let's hope this trend continues.  I think I can speak for the committee here, although I'm the newest member (not sure if I was voted in though), to say that we are all sending positive thoughts/vibes her way.


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## Maya142

Definitely sounds like she is slowly improving - baby steps!! Glad she is able to eat so much and has an appetite!! I'm sure the steroids are helping with that   - in some situations, that side effect is a plus!

I have no idea how she manages 6 classes, but I'm glad she is happy. And is being responsible and checking in with the med center and you! Way to go O!


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## crohnsinct

Update: 

O seems to be steady if not improving a little bit. 

O is still at around 7-8 BM's per day.  Maybe more are formed.  Down to 30% of them with blood.  Still a few all blood.  She is frequently being woken at night for a BM.  

The best part is her weight is up 2 pounds from last week which makes a net gain of a half a pound since she left for school two weeks ago. 

Given the good news and the fact that she has her infusion next week which means blood and fecal labs, I am going to postpone the visit I had planned for this weekend.  She is doing a great job updating her logs, going to the med center and updating the GI.  I think I will reward her by leaving her alone 

Still on 15 mg of prednisolone.  Man they weren't kidding when they said it takes Entyvio a long time to kick in.


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## my little penguin

Great News !!!!
Love it 
Now for no Blood


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## crohnsinct

Another week, another update! 

Weight is stable.  

BM frequency had gone down to average of about 6-7, blood down to 20% of the time and night wakings down to half the time.  However, over the past three days she has been up to 9-15.  More liquid and a tiny bit more blood.  

Infusion was today so perhaps that was it. 

But the really great news is her labs!  Her CRP is down to 1.2!  The lost it has been in a very long while.  Still a little more than double normal but dropped significantly since last infusion when it was climbing and 4.2!  HGB, Hematocrit and Albumin are better than they have ever been!  

Just waiting for cal pro to post but fully expecting that to be right in line with the other labs.  

Still not dropping steroids below 15mgs given the recent uptick in symptoms.  Watching for now but f she trends better after infusion we will attempt a 5mg drop down to 10mg! 

It's been 21 weeks since she started Entyvio. Man this stuff is S-L-O-W!


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## my little penguin

Slow and steady wins the race 
But I hear ya 
Hate the newer slower drugs 
They work but take so long to see benefits


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## Maya142

Great to hear she is improving slowly!! I wish her GI would give her Entyvio at the higher dose, just for a few more times, to get her into remission. Seems like it's wearing off before it is due and that is on steroids.
How is she managing at school? With her 6 classes and swimming? She is one amazing kid!


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## crohnsinct

Thanks Maya! 

She is doing great.  She REALLY thrives at school and NEEDED to go back.  Her 6 classes seem to be going well as is swimming (still only once a week).  

But in true O fashion she has decided to apply to be a volunteer with a group at school who mentors young adults with special needs.  She was chosen. They attend classes with them, help them with their studies and go to work with them to help with training and be a liaison between employer and the program at school etc.  YES!  I asked her how on earth she thought the GI asking her to take 4 classes and go home and rest translated to all of this activity.  Her response, "well I decided not to apply to go to Peru over December break".  Makes perfect sense now!  Thanks for explaining.  

LOL - she also applied to be some sort of coffee ambassador which basically means being a social media "influencer" for the product.  My response...."But you don't even drink coffee!". She laughed and said, "yeah, I didn't think they would pick me.  I will drop that one".  See?  Now she will have sooooo much more time.  

These kids! And she is supposedly old enough and mature enough to make her own medical decisions?!


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## Jo-mom

CIC, your daughter is really lazy and I think you should have a talk with her.   LOL.  I don't think I have ever heard of a more motivated young adult. She doesn't let anything stop her.


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## Maya142

> But in true O fashion she has decided to apply to be a volunteer with a group at school who mentors young adults with special needs. She was chosen. They attend classes with them, help them with their studies and go to work with them to help with training and be a liaison between employer and the program at school etc. YES! I asked her how on earth she thought the GI asking her to take 4 classes and go home and rest translated to all of this activity. Her response, "well I decided not to apply to go to Peru over December break". Makes perfect sense now! Thanks for explaining


Oh my!! She is really something. Have to say she makes me laugh . She's really got her GI wrapped around her little finger - he says take a reduced course load and no swimming, and she says well, how about 6 classes and swimming just twice a week and he says ok!

I think she should run for President - nothing can stop this kid!


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## crohnsinct

O's cal pro results posted and it is down to 440!  WOOHOO! Lowest it has been since January.  Entyvio MUST be working!  We must just have to wait a little bit for the symptoms to all resolve (still going 8 times a day and half the time liquid only a handful of time visible blood). 

Now the one caveat is that she did have a cal pro of 400 after her last hospitalization and before the big 600mg dose and it went up to >1000 two weeks after the 600mg dose so I guess we should just be "cautiously optimistic".  BUT back then she also had a CRP of 3.9.  So I am taking lowered CRP AND Cal Pro AND normal H&H as all good signs and celebrating!


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## Jo-mom

Well that sounds like good news to me!  Now if only those dancing poos were still around.  Dancing poo, dancing poo.


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## crohnsinct

I debated posting this but I am going to go ahead and share in the interest of sharing what I have learned.  

I was at the GI with my other daughter today.  Her appointment was completed and he asked to speak with me alone about O.  

He said because O wasn't there and because I seem to be very up on the research and industry trends he had really wanted to share with me what was going on with O this past summer. 

He gave me articles and papers etc to read over but highlighted that standard of care for someone in O's situation (extremely malnourished with severe disease activity) this summer was basically IV steroids for three days and if no improvement move to surgery which in her case would have been colectomy with ileostomy.  

O did not improve the first week and the attending physicians were all ready to move to surgery but he aggressively pushed to have other therapies tried first (antibiotics).  Then the second admit and IV steroids again with no improvement for days.  The team once again wanted to move to surgery and he very conservatively and aggressively talked them out of it until we tried to get the increased dose of Entyvio.  

He said he knows I kept bringing up EEN over TPN but again standard of care in her situation was to provide TPN.  TPN is used if severely malnourished and with severe disease burden.  But also if she couldn't get at least 60% of her caloric goal via EEN.  Further, they were anticipating a move to surgery in which case she would be NPO for at least 7 days which means no EEN as that uses the GI tract.  

I asked why then did they allow food and it is his and the teams view that the food passing through the diseased colon while maybe making her a little uncomfortable was not risking further disease complications etc.. We can agree or disagree with this but the whole team, surgeon, registered dietician, 5 or 6 attending and our GI were all of this opinion.  I am just a mom.  I have a patient load of 2.  I have only found myself in that predicament twice and both times it was TPN with food if she wanted.  They have a patient load of hundreds and way more years experience.  

I guess I am just sharing this so we all know a little more in case you find yourselves in the same situation.  But also to stress that a lot more is going on behind the scenes than we realize.  Sometimes it is good for us to know.  Other times maybe not so much.  Sometimes it is best that as a mom we concentrate on things like crawling into bed with them and watching Bachelorette (it was grueling), braiding hair, praying and cheering them on. 

Do I still question, sure but in the long run I have to say that I do believe they all acted ethically and responsibly.  Plus look at O now!  She still has her colon, she is back at school and we are on the upswing.  The GI said we still have to be very conservative and she isn't out of the woods yet but we are a lot further away from where we were. 

Yeah, this knocked me for a bit of a loop because I guess I really didn't understand how severe she really was but I liked it better that way


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## my little penguin

Lots of hugs your way 
Sometimes when the docs truly explain after the fact (when the mom brain is not in survival mode )
Then things make more sense 

Good point that each of us reads papers and studies 
By none of us are doctors with many years of training 

Glad she is moving forward


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## crohnsinct

Thanks MLP! That means a lot to me!  I know you guys were all there with me in mommy survival mode!  It never ceases to amaze me how much we could all care for kids and parents who we have never even met let alone who only have code names


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## pdx

Yes, big hugs to you and O. I'm glad your doctor shared his thinking with you, and thanks for sharing it with us too. I think you're not giving yourself enough credit, though. For 2+ years as O was getting worse, you kept trying to get her doctor to look past the IBS diagnosis, and he wouldn't even do any imaging. Sometimes a mother's (or father's) intuition is right on! Part of the problem is probably that O is so tough--he probably didn't believe that her symptoms were really as bad as they were given her lack of complaints. But hopefully now he knows to take her symptoms more seriously.


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## crohnsinct

You are soooo right PDX!  EVERY doctor kept saying that...she looks so much better than the numbers and what we see in the toilet.  How is she even standing?!

I think he did learn his lesson because this week's update was basically:

weight stable
7-8 BM's a day 
about one a day with blood 
waking half the time 
can I go down on prednisone now 

His response was basically, you are being such a trooper and while things are better we have to be very conservative given what happened this summer.  Labs and symptoms are encouraging but you are not out of the woods.  Next week if there is no visible blood then we may be able to wean down to 10mg (she is on 15 still).  

Today he asked me if she was mad at him.  I said not mad, just bummed.  Her cheeks are starting to really puff out and she is growing hair everywhere! He looked like he wanted go back on his decision but when he saw her log for today and saw blood he said, "I just can't.  Not with blood.  Not with her."


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## Jo-mom

It really sounds like this GI really cares.  O is lucky to have such great care - good GI, and a great mom!  Big hugs from me as well.


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## crohnsinct

Update: 

O gained almost 2.5 pounds!  

Other than that, not much has changed.  

Average Frequency - 8-9 times a day
Bleeding - 15-20% of the time 
Night waking - half the time 

GI has decided that even though he said he didn't want to taper steroids if there was still visible blood, that we should try to push the envelope and go down 5mg to 10mg daily. 

Hopefully, this will give us some indication of whether or not Entyvio is able to handle things and if she will be able to get off the steroids completely before the end of the year.  

It's been 23.5 weeks.  This is getting old.


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## Jo-mom

Great about the weight gain, although the other parts of the report aren't moving much.   We appreciate your updates.  I am always wondering after each Wednesday, what is going on with O.


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## Tesscorm

How do you feel about tapering steroids?  I'm thinking with her frequency and the blood, that answers the question as to whether Entyvio is ready to handle things alone.  After going through so much over the summer and making the improvements that she has, it would be a huge disappointment for her to start going downhill.     Although, of course, I understand tapering steroids has to happen at some point but... maybe as she's gaining weight, let the improvements continue a bit more???


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## Optimistic

I too check in on Wed. The weight gain is encouraging. Hoping the move to 10mg is smooth. I feel like it will be. We need this to be a success story!


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## crohnsinct

I don't know what to think about the move down but to be honest she has been on steroids way too much over the past two years.  Plus, this stalling at meh is annoying.  I am anxious to get rid of the steroids to see if Entyvio can handle things and if not to move on.  If it can then great, anxious to get rid of the steroids so my daughter can get her normal cheeks back and stop growing facial hair.  She says she looks like a prepubescent boy!  But they are controlling her psoriasis nicely


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## my little penguin

Once you go under 10 mg you have to wean very very slowly to reduce the risk of adrenal insufficiency 
The adrenal gland needs lots of “pokes” to wake it up again given how long she has been on steroids 
We were told 1-2 mg max every 2-4 weeks 
Sorry


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## crohnsinct

WHAT?!!!!  We will miss the my self imposed end of the year deadline at that rate!  But we all know how easy going our GI is.  How much you wanna bet she is off steroids come Thanksgiving!


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## my little penguin

Faster you wean higher the risk of the adrenal gland not waking up ....


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## crohnsinct

Another boring update:

Frequency: 9 
Weight: down a pound 
Blood: once a day
Night wakings: 4 times this week

So the taper didn't cause any problems but she also isn't getting any better.  Stalled at mediocre.  No further taper this week.  

Infusion on 10/8 so she will get labs done 10/7.  She flies home and I will get to really see what is going on.  GI appointment on the 11th. 

She mentioned going to Walmart after class today and I jokingly asked if she was getting party supplies.  She said, "no, I am missing a lot of underwear and I have to get paper towels".  Wonder where her wear went?!    Sadly, I have my theories.


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## my little penguin

Glad she is “stable” but don’t like where she is still sitting with high frequency , blood and nighttime bm 
All red flags


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## Pilgrim

Your daughter is amazing. I still can't believe how much she can endure. Reminds me that our kids are tougher than we think. Glad you will have a chance to see how she is in person.


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## crohnsinct

HAPPY FRIYAY!  ( I think I will start a thread with that title) 

O has gained 3 pounds this past week!  

Frequency is down to 7. 

Last time she saw blood was Sunday! 

Last time she was woken up for a BM was Saturday! 

Looks like we are heading for remission!  

She is still on 10 mg prednisone.  GI says the next drop will be down to 5mg.  Sounds aggressive to me but rereading this thread, I am reminded that I am trusting the docs. 

She comes home next Wednesday night...appointment with GI Friday.  

I am officially not using the "S" word again...and think we are flirting with the "R" word.


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## Pilgrim

Wish I could "like" that at least 10 times. Great news! I hope you have a good visit when she returns.


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## Jo-mom

Excellent news! Dancing poop, dancing poop.


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## Maya142

What wonderful news!!! Is she getting close to her original weight now, or does she have quite a bit to gain? I'm so glad things are better. She deserves a LONG stay in R-land   !


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## crohnsinct

She has 4 more pounds to go to get to what she and I consider her original weight.  She had been 8 pounds heavier for a short while.  Unfortunately that weight is in her chart so he would really like her to get to that weight but honestly 4 more pounds and she will be where she was for a very long time before and after that high weight.


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## Tesscorm

Amazing, great news!!!  So glad you're seeing real improvements!!


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## crohnsinct

Big update. 

It had looked like O was getting even better with a stop in bleeding and frequency way down.  But after a few days of that frequency went back up to 12 with bleeding and night waking.  Her and I think it was because she was 4 days late for her infusion.  GI doesn't agree. 

Blood labs posted and they are just weird.  H&H are still normal but fell a lot.  Some kidney and liver lab issues.  But the big one is blood glucose.  It was very high.

Weight stable. 

Cal pro 700.

She came home and looks good. 

Had her appointment today. 

First issue is he feels she is now diabetic.  Tested her blood glucose in office and still high.  So he wants her off steroids as that is the probable cause. 

She has severe refractory disease. 

He feels that the issue now is her ileum.  She has always had disease activity there but it hasn't been her problem area.  But right now he thinks given the vast improvement in her colonic symptoms that the ileum is the problem now.  He examined her and sure enough there was pain and guarding when he got to the ileum and not so much when he was at the left side of the colon.  He thinks the increase in cal pro is due to ileal disease.  Entyvio is good for the colon but not necessarily the ileum.  Stelara is good for the ileum but not the colon.  Most success getting two biologics approved is when they are being prescribed for two different conditions.  We could get Stelara for her psoriasis but that dose won't be high enough and the derm can't get the IBD dose approved. 

Looking at getting her into clinical trial for Entyvio 600mg dose every 4 weeks.  Also, going to try to get insurance approval for three months of 600 mg.  The theory is the increased dose will help the ileum. 

Meanwhile, she needs to come off steroids but Entyvio isn't holding her disease adequately.  Tacro doesn't work.  So we are going to start Entocort.  10 days into Entocort she can drop down to 5 mg of prednisone.  He doesn't want her to drop prednisone before the Entocort is at a point where it could take over because she is teetering. 

He wants to treat the frequency with 10 days of Xifaxan for bacterial overgrowth.  He feels that might be the issue there rather than colonic disease activity.  She literally went to the bathroom 4 times while we were there. 

Entocort hasn't worked for her in the past but that was years ago.  We discussed next steps should it not work this time and if the increase in Entyvio doesn't work or if insurance won't approve it for long term. 

EEN has worked in the past.  He feels as severe and refractory as she is, any drug therapy she is on is going to need ongoing support.  We shouldn't keep putting her on steroids.  They discussed getting a G tube so they can get her into and keep er in remission with periodic intervals of EEN. She said she would probably be o.k. with that.

He wanted to see her at Thanksgiving but of course we are back east visiting family. So when she gets home in December she will see him and possibly schedule the G tube placement.


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## xmdmom

I've been rooting for O and I'm sorry to hear that she's having more Crohn's symptoms and now elevated blood sugars and just when she seemed to be really improving!

I'm heartened that she seems to have a GI who appreciates how severe her illness is and is really working to find and get her treatments that can get her Crohn's under control. From the info above, it sounds like he is a good communicator and that he was willing to talk about what if scenarios, which as a parent, I personally like.   

I'm curious about her elevated blood sugar and the diagnosis of diabetes (which is fasting bs >=126 or  2hour after a meal or random BS >=200).  How high was her blood sugar and has she ever had a high blood sugar when on high(er) dose steroids? Is there a plan to monitor and/or treat her blood sugars now while still on prednisone?

I am sending positive healing thoughts O's way!


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## Delta_hippo

I am gutted to read this.  My only idea is, she started the cd diet at home and couldn’t keep it up at school(I think I read a while ago), it sounds like a reasonably diabetes friendly diet in terms of low sugary foods, didn’t know if worth trying again if she’s home?  Along with a bit of bone broth?  She’s done so well she must be utterly p***d off.  Praying for you all xxx


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## Tesscorm

Just so disappointed for her...  as xmdmom said, thank God her GI is on top of it but I really feel sorry that the improvements didn't continue.  Lots of prayers and good wishes her way...  I wish I could do more.


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## Maya142

I'm so so sorry to hear that O has gotten worse and you have gotten bad news. We have heard the same things about my daughter's arthritis - very severe disease, one of few in the country...it's absolutely heart-breaking to hear, even if you really knew it (as a mom) all along. It's terrifying especially to hear "we don't know what to do with her" from some of the best hospitals in the country. It's scary every single day as she runs out of options. I'm heartbroken to hear the same about O  .

I would definitely encourage you to have her see an endocrinologist - GI's don't know enough about the things she might be facing - steroid induced diabetes or adrenal insufficiency. Our GI had a plan to wean my daughter off steroids - she had been on and off steroids for 6 years and had been on them for 6-7 months that time. But once we saw the endocrinologist, that plan changed quickly - the endocrinologist wanted her to taper MUCH more slowly and wanted blood work several weeks after she was off steroids to check ACTH and cortisol and blood sugar. 

I would push to see an endocrinologist while she is at home. We were were told the physiologic dose of steroids is about 4 mg Prednisone, if I'm remembering correctly, so our endocrinologist wanted us to wean much slower once we got close to that point. Given O has had symptoms of it before, it's important that she's careful. We had several scary ER trips due to adrenal insufficiency.

As for two biologics, your GI is correct that it's easiest to get them approved if they're for different things. But given the severity of her psoriasis, couldn't the dermatologist make a case for a higher dose of Stelara? I know it would not be the same as the IBD dose, but I bet she could get O 90 mg every 12 weeks. It's not the normal dose for IBD (90 mg every 8 weeks) but as a second biologic, maybe that would be enough.

Also, how can the doc possibly know where her disease is? If she's bleeding and having diarrhea 12x per day, it could easily still be her colon. I'm not saying that she doesn't have ileal disease - she probably does. But I don't think you can tell based solely on symptoms or FCP. Imaging would tell you - an MRE or a scope. I know she's not home for long right now, but what about around Thanksgiving?


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## Maya142

Oh and wanted to add - M is more than happy to answer any G tube questions O might have!! It's a minor surgery - she'll probably be inpatient one night. But just as a warning - some doctors will not place a button type tube at first. They make you deal with a long one (which M HATED) for 4-6 weeks till the tract has healed. In M's case, hers was a GJ tube and she had such poor motility that it moved from her jejunum to her duodenum the first night after surgery - we were told that's very rare . So they wanted to replace it sooner than they had planned, so she only had to live with the long uncomfortable tube for two weeks or so. After that, they switched it for a button and re-positioned it. But they had planned on her having the long tube for 6 weeks.

M went to school - her first semester of college - two weeks after the surgery. So she'd probably be ok having the surgery during a short break and going back to school soon after, but because of the long tube (which was thick and stuck straight out, so not easily hidden under clothes), she may want to do it during winter break so she has time to get it switched out for a button before she goes back to school. The button is easy to maintain - you change it once every 3 months. As long as it's a G tube and not a GJ, it can be done at home. M does hers at home sometimes - she learned how to do it on YouTube LOL .

Also, she was not allowed to swim until cleared by the surgeon - 6 weeks. I know O won't be happy to hear that.

Lastly, Feeding Tube Awareness has a great website with all sorts of info, including a parents' guide.

And on another note - the thing that helped M deal with all of this - the tubes, the surgeries, the missed semesters of school, hearing again and again she had severe disease and no one knew how to help, was a psychologist. The extra support might help O, if you can keep her home long enough to see one!!


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## crohnsinct

You guys are the best!  We definitely feel the love and support. I will try to answer everything in one post but reserve the right to forget something and add a second post 

Diabetes?  Well, this guy seems to make it a habit of sorta diagnosing things.  Such as years ago with adrenal insufficiency.  He said he thought she was experiencing it and slowed the taper down and she straightened right out.  However, no referral.  Same with this time.  He said, "she is probably experiencing diabetes due to the steroid so lets get her off them as soon as possible". 

Xmdmom:  She has had high glucose at other levels of prednisone.  Mostly when she was inpatient and on TPN.  They tested her frequently and adjusted her TPN accordingly.  Then, when she went back to school off TPN, she was still getting high blood sugars when she was tested each week at the school health center (during her nurse visits for vitals...blood sugar was one of the things they tested).  He said she tends to go up to the 170's to low 200's at the two hour or more after meal times (at the nurse visit).  Then we taper steroids and she goes down to 150's.  But after some time at that steroid dose she goes right back up.  So at 10mg's she got a fasting blood sugar of 167 on Monday and 178 in the office Friday.  I am not sure what the post meal time value is now as she skipped the last nurse vitals visit because of the Entyvio snafu.  She needed to have infusion the day she normally would have had vitals.  He did ask her to add a second nurse visit a week while on prednisone and entocort.  He thinks we can go back down to one once we reduce her prednisone down to 5mg's.  So not exactly monitoring blood sugar or doing anything proactive about it other than trying to get her off prednisone. 

You are right.  He is a great communicator.  Listens and takes his time with our questions also.  Includes her and I in all decisions, asking how we feel about his suggestions etc.  He is also really good at tweaking his reccomendations to help O feel better about the plan etc.  

I do have confidence in him as I know now that the inpatient team was really wanting to take her colon out but he fought hard to give things time and try a few different things.  So he is definitely very knowledgable about IBD and I know he consults he physician associates about her care even if we are not getting referrals.  I want to give him the benefit of the doubt and think that he is not referring her out because she is never around much but sometimes I wish he would. 

As to disease location, I don't think he can be really sure about where her disease is active right now without looking (imaging, scope etc).  However, he has beneath this long enough and his explanation made sense.  Her colonic symptoms are sooooo much better.  She is literally only seeing blood once a day now where as before she was having BM's that were all blood and I mean filling half a hat with blood.  I disagree with him that the recent uptick is not related to delayed Entyvio as today she has only been 6 times so far.  That is quite an improvement over where she was earlier this week.  Then there was the pain when he palpated her ileum.  

What I didn't mention about the "bacteria" comment is that what he is really saying is he feels her frequency is IBS.  The drug he prescribed is an IBS-D drug and in all their literature they say IBS-D caused by bacterial overload.  The thing that made him go toward "bacteria" being an issue is that she said the frequency fluctuates.  She could go 12 times a day and then have a good 4 or 5 BM day.  He said if it were her colonic disease she tends to just get worse and worse.  So I guess we treat this as IBS-D and if she gets better great.  If not, well then we know.  He won't be happy until we put this IBS thing to bed one way or another.  The only thing that concerns me is that we read about the drug and if you take it and you don't have IBS-D then it could make you a lot worse and cause pain and other issues which she doesn't have right now.  So I am leery.  Insurance has not approved it yet anyway as it is $2,500 for a 10 day supply and well it is for IBS and I don't think insurance companies take IBS seriously.  

Delta_hippo - good point on the diet.  I don't think dropping it made her Crohn's worse but you are probably right that her "college" diet isn't helping her blood sugars.  I will see if I can talk to her about her diet. 

Maya - here is the thing about O....she is not upset in the least.  She sat there listening and was more like, "wow! sucks for you to be my doctor. Good luck figuring this out.  Can I go now?".  IDK if it an O thing or a teenager/invincible thing or if she just has that much trust that he will figure something out.  I was miffed with her that she would jump to G tube and not consider drinking the formula or even the NG tube.  I said, "do you realize that you are almost out of drug options right now". Her reply, "yeah but he always says there isn't anything left to do and he always finds something".  So she really does think that he will figure something out.  I told her that this is it.  If Entocort doesn't work or if the 600mg of Entyvio either doesn't work or doesn't get approved she HAS to do EEN.  She basically said, "yeah, I know. Can I go away for spring break".  It is not so much denial as much as "I will worry about that when the time comes".  Stinks for me because I am a planner and can decision tree this thing out like there is no tomorrow.  Poor GI, has to give me enough info but not overwhelm O with details she isn't interested in at the moment. 

We also happen to have a very strong faith.  O is especially active in her faith community at school.  So there is a fair amount of "God's plan" and "he uses all things for good" to her thinking. 

On the two biologics, he already spoke with the term and she tried to get a higher dose or more frequent or whatever of Stelara for O's psoriasis as O has super severe psoriasis (and sadly T is following in her footsteps) but it was denied.  Not sure they have appealed.


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## Maya142

We appealed for months for two biologics - took 9 months last time!! But the first time she was on two biologics, we were adding Entyvio to an injectable arthritis biologic. And expected a fight. But it was approved quite quickly because Entyvio went through the medical side of things since it was IV and administered in a hospital and the injectable biologic went through prescription side.

Another option would an anti-TNF. You know how we are getting Cimzia now. That or Humira would work for her small bowel. I don't think they'd  be enough to hold her without Entyvio since Remicade was failing but perhaps with it, one of them would work? 

There are lots of ways to appeal. It sounds like currently the plan is 600 mg of Entyvio, which I think is definitely worth a try. But if that doesn't work, don't rule out two biologics. With a persistent doctor or doctors, it's possible. But expect that you will have to appeal.

I'm glad to hear O is handling all this well. I'm glad she still has faith that they will find something. One of the things M's psychologist has taught her (or is trying to teach her!) is to take one day at a time. I think O is great at that - sometimes teenage invincible mindset pays off, right  ?!

I do think EEN is a great alternative to steroids and the G tube is easier than an NG tube, but I am surprised he would jump to a G tube without even trying an NG tube. Most GIs insist on trying the NG tube to see if the kiddo can tolerate feeds into their stomach (either bolus or continuous) or if they cannot - if there's a motility issue for example. It's really easy to insert even daily - given how laid back O is, I'm surprised she's so against it. Has she said why she won't try it?



> What I didn't mention about the "bacteria" comment is that what he is really saying is he feels her frequency is IBS. The drug he prescribed is an IBS-D drug and in all their literature they say IBS-D caused by bacterial overload. The thing that made him go toward "bacteria" being an issue is that she said the frequency fluctuates. She could go 12 times a day and then have a good 4 or 5 BM day. He said if it were her colonic disease she tends to just get worse and worse. So I guess we treat this as IBS-D and if she gets better great. If not, well then we know. He won't be happy until we put this IBS thing to bed one way or another. The only thing that concerns me is that we read about the drug and if you take it and you don't have IBS-D then it could make you a lot worse and cause pain and other issues which she doesn't have right now. So I am leery. Insurance has not approved it yet anyway as it is $2,500 for a 10 day supply and well it is for IBS and I don't think insurance companies take IBS seriously.


M was actually just on this drug for post-infectious IBS (due to months of C.Diff). What we were told is that the pharmaceutical company has a contract with one particular specialty pharmacy to help get it approved for patients. They did all the appealing for us. Honestly, for us that was a pretty easy drug to get. We were told it should help with diarrhea. 

To be very honest, M had a hard time with it. We tried it once and she was so nauseous that she lasted 4 days. No decrease in diarrhea. Her GI stopped it because of the nausea and but maybe a month or so later, she still had diarrhea and cramping, so we re-tried it. She lasted a week the second time. It did decrease the frequency but not by much and so we stopped it. Over time, the IBS got better by itself. She stopped waking up at night to have BMs and the cramping went away and then finally the diarrhea decreased. It hasn't fully gone away - she does have diarrhea - not always, but often. But it's not 10-15 times per day now. I'd say it's 4-5 times a day now, sometimes formed but mostly loose, which isn't bad and the pain is pretty rare. Her FCP is low so we're not worried it's her IBD.

But her case was very clearly post-infectious since she had C.Diff so long and a poop transplant. So different circumstances compared to O's situation. But I'm REALLY glad her bleeding is MUCH better - I was imagining poop hats full of blood like before!


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## crohnsinct

Maya - it is beyond me that O won't even try an ng tube. No clue what so ever what her issue is with it. She just shuts down any talk of it. Drinking to. She just says very emphatically I might add,"I can't". We get in fights any time I try to talk to her about it. If I were insurance I sure wouldn't approve the g tube until she at least tried. She usually is so tough and determined all the time and has done een orally before so why she keeps saying she can't is beyond me. I tried again today and she walked away from me so I guess that is just it. Maybe the GI sized her up and just knew that it was g tube or nothing. 

I hadn't realized that M used xifaxan. Nausea seems to be a huge issue with that drug. Idk if O will be able to handle the nausea. This drug is really scary to me. The numbers of people who get worse on it is high. But we have to try it. Just in case her issues are bacterial overload. This potentially could make her frequency so much better.  I have read that if it works it could work up to 6 months. Also read that you can take it up to three times a year and that subsequent dosing makes things even better. Fingers crossed! 

GI wasvso successful in getting Entyvio approved for double dose and thatbinfusion was $100k retail. So it would surprise me if he couldn't get Stelara and Entyvio approved. I will ask about adding Humia also. Not a bad idea given that would also help her colon.


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## Maya142

Some kids simply cannot deal with NG tubes and then GIs are sometimes forced to put in G tubes instead. M's psychologist talked to me about it before M had an NG tube placed, but said most teens tolerate NG tubes quite easily. The first few days to a week are hard - I think the first night was hardest for M. But every day it got easier and soon she was inserting it in less than 10 seconds.

However, she absolutely HATED the NJ tube and her GI absolutely refused to put in a GJ tube without her trying the NJ tube. She cried, I cried, her weight dropped to 80 lbs before we got her to agree to it. Then she dealt with it for 3 months - first few weeks were the hardest. 

In that case, I wish her GI had allowed a GJ tube earlier. 3 months was absolutely unnecessary but I think she was trying to figure out whether M needed long-term nutrition or whether we just had to get her to a normal weight and then she'd be able to eat. And whether an NJ tube would work for her. There wasn't really any other option though, besides TPN, and to us it was pretty clear M needed it for the long-term, so I don't know why she (her GI I mean) refused the surgery for so long, especially given how much M hated the NJ tube.

In O's case, it's pretty clear she needs it for at least a year, I'd guess - or until she is stable. Since she has been on steroids so much and loses weight so quickly, she does need to be able to do EEN. And a G tube will make that easier, so that might be why your GI is willing to try it. 

It also might be that he knows how stubborn O is and knows she will not change her mind about the NG tube !!!



> I hadn't realized that M used xifaxan. Nausea seems to be a huge issue with that drug. Idk if O will be able to handle the nausea. This drug is really scary to me. The numbers of people who get worse on it is high. But we have to try it. Just in case her issues are bacterial overload. This potentially could make her frequency so much better. I have read that if it works it could work up to 6 months. Also read that you can take it up to three times a year and that subsequent dosing makes things even better. Fingers crossed!


With M, honestly, she was so nauseous she said she'd much rather deal with the IBS . I don't think you'll have an issue getting it approved - I think the bigger worry is if O will tolerate it. We were not told you could get worse on it - yikes!! We were in fact told that it had very few side effects, which is clearly untrue . She didn't get worse on it though - she felt worse due to the nausea, but her BMs didn't increase.

I hope it will work for O. You may want to have Zofran on hand, if nausea is common. M definitely needed it. Fingers and toes are crossed for O!!


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## Cure4Crohns

Hello all, I have just joined the forum but in no way I am new to it. I have to admit I have been following the topics here and have been tremendously inspired and have felt such support from all that you all have shared. so I thought it was time for me to give back!

My son S was diagnosed at age 10 six years ago. We started with pentasa, budesonide and stayed with them for 2.5 years. His Crohn’s disease was localized to the terminal ileum. In 2015 during his scopes and a subsequent MRI it was determined that he has thickening and narrowing in the terminal ileum. Next obvious choice was Remicade but unfortunately he had a reaction at his second infusion. Next up was Humaira. He responded well to it and did ok for a year or so. His scans showed continued narrowing and blood work too indicated disease activity. His GI increased the dose. Everything was going well or we thought it was- he wasn’t in remission but the disease activity wasn’t as bad. In August 2018 his labs indicated increased activity and we were talking of switching him over to Stelara. But comes the first week of September and he had severe abdominal pain right around his appendix site as well as his stricture area in his terminal ileum. We rushed him to the ER only to find out he had an abscess right at the stricture. He went through a rough time after that. After two hospitalizations, unsuccessful treatment of the abscess, EEN, failed NG tube, IV nutrition, his doctor mentioned to us the CDED diet. We briefly looked into it (I just got some slides about it not The two published papers) we gave him some fruits and vegetables. My poor baby was so eager to have some real food that he consumed those together and lots of it. Result being he had partial bowel obstruction. Thank god it wasn’t complete. With a third hospital stay of about two weeks we had a plan. We got the PICC line, met with the surgical team, got a date for his surgery (it was end of October then and my ambitious S wanted to finish his finals for his first term of sophomore year before surgery) for right before winter break in December, and we started on Stelara upon clearance from the team that he no longer had an infection. 

We got through the month and a half without any hiccups. he was at the best on his nutritional status snd had regained some weight before the surgery. The surgery took place with approx 7 inches removed. The surgeon was happy that the rest of his bowels seemed very healthy. 

Unfortunately after surgery as we had hoped his disease might go into remission but it got even more aggressive. His GI brought down his Stelara infusions to 6 weeks introduced 25mg methotrexate but still no response. We did the pill camera endoscopy to see that he had a lot of ulcers and not just at the surgery site but in his upper and middle digestive tract. It was a tough time. Stelara was the last medicine out there. At this point I started looking up CDED again with the help of my cousin who is a physician I got access to the two published papers. And after much begging and convincing S both me and my husband started the diet with S. The CDED suggested with severe cases start with two weeks of complete EEN. We did that with our son and drank just boost. After that I followed the diet. It has a complete list of ingredients that are allowed and the food that are not allowed. We followed that for three weeks at which point S had his labs and his CRP and ESR had come down significantly. He had started gaining weight ( he had lost almost 20 pounds till the date we started the diet) his iron was Low but perhaps because there was much reduced intake of meat and iron rich food. His GI gave five iron infusions, one each week. We continued with the diet for the next three weeks. At the end of six weeks the diet expands a bit but the papers did not have the specific ingredients. I just followed my instincts and stuck with the original only increased the quantity and added lentils and legumes and gluten free bread. 

It has been 7 months, S has not only regained those 20 pounds but added more. He has grown by a couple of inches. His Cal Protectin levels are normal and so is everything else is in the normal range. We are back to eight weeks Stelara shots. The repeat pill camera endoscopy shows very very few ulcers. He is scheduled for an MRI this Thursday to visually confirm what the blood work and all other tests are suggesting. I hope and pray given Crohn’s is quite deceptive and sneaky everything comes back ok.

I have completely changed our eating habits. We do not eat out much perhaps once or twice a month. Everything is organic non gmo. Nothing he consumes has a prolonged shelf life no emulsifiers and no preservatives. He is on a dairy free gluten free diet, I would say the basic list remains the same from CDED list of allowed foods. I have switched all recipes to incorporate these changes. I don’t say it’s easy. It’s very very hard but seeing him get better and come from where he was at I would do it all over again. Initially he was very resistant and angry but once he saw how well he was responding to it he is sold to the idea. We are fortunate too to be living where we are, there is increased awareness and a lot can be easily found in terms of grocery and food based on his dietary requirements.

Though I know not everyone is the same and not everyone responds to any given treatment the same way. But please do look into CDED. Like any other treatment it take a little bit time to kick in. And of course for us too it’s just not the diet alone, perhaps Stelara took a while to kick in or maybe it was the combination of both. We are not willing to risk by giving up on either at the moment. But his GI team ended up collaborating with the the team of CDED and wanted my feedback, further questions before they met with that team. It does give me the sense that perhaps diet indeed played a significant role in all of this! Right now I am able to do all this for S I already fear since he heads out to college in less than two years. I do not know how we will manage then. Hopefully by then there would be a lot more awareness, accessibility and perhaps even a cure.

I do hope our kids see a cure very soon for this horrific disease. It is heart wrenching to see one’s child suffer. No parent should ever have to experience this type of suffering. Wishing O and all your wonderful brave children of all you beautiful parents tremendous health. 

My apologies for this long a post.


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## my little penguin

@Cure4Crohns 
O was on cded for a while with entivyio it was a few pages back -didn’t work 
My kiddo was placed on it as well a few years ago (doc actually gave us the full papers which has the second part of it 
No gf stuff is permitted btw (but if your current diet works all the better )
Ds is on Stelara as well 
Every 4 weeks 
Good luck with the mri 
In our experience Stelera takes a full 8 months to be effective for some closer to a year


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## crohnsinct

Aww Hi and welcome to the group "officially". 

I am glad you had such success with CDED.  I think you are right though.  Stelara is known to take a very long time to kick in.  So I do agree with your theory that the meds along with the diet helped your son along.  

We have also done exhaustive research on diet.  We have been guided by dietitians, functional medicine docs and such.  I also think there is definitely a diet component to Crohn's as it relates to it's affects on the micro biota but also the body's overall inflammatory response.  But diet alone has never been able to manage either of my girls' disease.  

You are right, it is hard away at college.  O left shortly after getting out of the hospital so there was really no time to get her fully on board with CDED.  Further, any diet you undertake should not be done without the close guidance and monitoring by a dietician and let's just say if there are no GI's in her area there certainly are not any dietitians well versed in these cutting edge diets.  

CDED is meant to be used to induce remission but not as a long term diet as it is still restricts many beneficial foods.  Once you achieve remission there is a slow reintroduction of the previously restricted foods.  It sounds like you are doing a great job with this phase, perhaps you should go back and get your dietician degree 

O has previously been organic whole foods plant based and while this was a time when her disease was at it's best, she still was not able to achieve full remission.  She has always been milk free but definitely not gluten free.  

When she was on CDED she lost too much weight so the GI is now supporting letting her whatever she wants because the weight loss kicks up her inflammation.  He is very interested in diet and would love for her to try one but agrees that given her propensity for severe weight loss and already being at a very low BMI that any restrictive eating while away at school would not be in her best interest.  

Yeah everyone is different.  She will get there.  She just needs time and patience and the right therapy will emerge.


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## Cure4Crohns

Yes I have been following this thread and have really gotten a lot of support and strength from you all. Especially in the times when everything was just crumbling around us. Thank you for giving hope and in helping me become the advocate I have become for my son.

Gluten free is not allowed but at the end of 12 weeks we opened it up given whole grains bread was opened at the end of 6 weeks in CDED and since S has Celiac We had to stick with gluten free At the completion of 12 weeks.

Yes grateful it worked and hopefully will continue to work. Be it just diet, or just medicine or a combination of both. The time S has tried to deviate from the diet, he feels unease and his bowel movements change. I speak about it that if it can benefit even one who has a similar disease pattern it would be all worth it.


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## crohnsinct

Also might add that many of our kids have a functional disease overlay (gastroparesis, IBS, etc) and sometimes diet is actually treating those conditions more than the IBD.


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## Cure4Crohns

crohnsinct said:


> Aww Hi and welcome to the group "officially".
> 
> I am glad you had such success with CDED.  I think you are right though.  Stelara is known to take a very long time to kick in.  So I do agree with your theory that the meds along with the diet helped your son along.
> 
> We have also done exhaustive research on diet.  We have been guided by dietitians, functional medicine docs and such.  I also think there is definitely a diet component to Crohn's as it relates to it's affects on the micro biota but also the body's overall inflammatory response.  But diet alone has never been able to manage either of my girls' disease.
> 
> You are right, it is hard away at college.  O left shortly after getting out of the hospital so there was really no time to get her fully on board with CDED.  Further, any diet you undertake should not be done without the close guidance and monitoring by a dietician and let's just say if there are no GI's in her area there certainly are not any dietitians well versed in these cutting edge diets.
> 
> CDED is meant to be used to induce remission but not as a long term diet as it is still restricts many beneficial foods.  Once you achieve remission there is a slow reintroduction of the previously restricted foods.  It sounds like you are doing a great job with this phase, perhaps you should go back and get your dietician degree
> 
> O has previously been organic whole foods plant based and while this was a time when her disease was at it's best, she still was not able to achieve full remission.  She has always been milk free but definitely not gluten free.
> 
> When she was on CDED she lost too much weight so the GI is now supporting letting her whatever she wants because the weight loss kicks up her inflammation.  He is very interested in diet and would love for her to try one but agrees that given her propensity for severe weight loss and already being at a very low BMI that any restrictive eating while away at school would not be in her best interest.
> 
> Yeah everyone is different.  She will get there.  She just needs time and patience and the right therapy will emerge.


 hugs!

You have been a true inspiration and so has O been. I have told S all about her accomplishments and her resilience. May she achieve all her goals and the very best of health.

Yes with CDED weight mgmt and keeping up the iron levels was s challenge. With the exception of gluten free we just avoid everything that was not allowed in CDED. My biggest fear right now is sending him off to college keeping in mind the challenges you have pointed out. I think I will again turn to you and your insights for support and managing my own fears as we transition into that phase!


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## Jo-mom

Welcome aboard Cure4Crohns and thank you for sharing your story.  We are collectively here for each other.  It's a great group and this forum has helped me very much.  I hope for continued health for your son.


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## crohnsinct

LOL!  You guys are good!  Some of you have noticed that I didn't send the weekly update and are PM'ing me. I apologize, been distracted with other issues.   

So a quick update. 

It doesn't seem like Entocort or Xifaxan are making much a difference.  O's frequency is up over 10/day and sometimes as high as 13.  She is seeing periodic blood and sometimes being woken in the middle of the night.  There has been some back and forth with the GI but the final decision has been to keep giving Entocort a shot at controlling disease (it has been 2 weeks we are giving it a few more).   We are also sticking with Xifaxan for a full two weeks to see if bacterial overload has anything to do with this. 

She tapered down to 5mg's of prednisolone on Saturday.  This might be part of the problem with increased frequency but hard to tell as things started ramping up last week.  Might also be a function of being in the third week of her Entyvio infusion interval.  

Basically, since there is nothing else to pursue right now, we are just sitting tight and trying to get her through finals and home mid December.


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## my little penguin

Wish things were going better


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## pdx

Thinking about you all--hope O is doing OK.


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## Jo-mom

Ditto.


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## crohnsinct

Awww you guys are so sweet! 

O pretty much continued at over 10 BM's a day with a blood and waking a few times a week.  Weight stable.  It seemed Xifaxan and Entocort were still not helping. 

She had her double dose of Entyvio last Wednesday with labs the same day.  All her blood labs look decent with the exception of CRP which is creeping up a little.  Was 1.2 now 1.9 but still much, much better than it was so we will take it.  

Ironically, even before she got her double dose of Entyvio her fecal cal went way down to 155.  The lowest ever for her.  Maybe it was the Entocort?  But frequency was still up so holding my breath waiting for the GI to say...IBS!  

Within days of the double dose of Entyvio her frequency started going down.  10, 8, 7....she even had a 4 BM day!  So that shows me it wasn't IBS. But now she seems settled at around 7 a day.  Only seeing blood once a week and waking 2-4 times a week.  Not normal but much, much, much improved.  

I can't wait to see what her labs are at next infusion!  I think that will really be the sign of whether or not we can say the R word.  

GI told her she can reduce weight checks down to once a month.  Well she asked and he agreed. 

Oh and her blood sugar is at a nice normal range.  Actually her labs showed low glucose. 

Still on 5 mg prednisolone and 9 mg Entocort.  

I will be seeing her in about a week and spending a week with her so I will be better able to judge what is going on then.  

Thanks for checking in.  You guys are the best!


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## Maya142

Wow!! I'm SO thrilled to hear everything is moving in the right direction!!! FCP down, frequency down - that's great!! I agree that it seems like it's Entyvio and not IBS. I think the drop in her FCP must be related to Entyvio working because if high doses of Prednisone and Solumedrol didn't bring it down much, then Entocort certainly wouldn't.  

Has she regained all the weight she lost?

Could you get her in with an endocrinologist, considering you'll be going lower than 5 mg of Prednisone soon? Maybe during winter break?


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## crohnsinct

Well it seems we have angered the Crohn's gods.  O went along nicely until yesterday.  Frequency went up to 10 but it had been a whole week since we saw blood and no night waking.  We were celebrating.  

Unfortunately, yesterday frequency was up to 10 and today she is up to 16 with bleeding three of those times.

It has been 2 weeks since her infusion.  Still on Entocort and still on 5 mg's of prednisone.  

No clue what to think.  Just need to get her through finals and get her home.  

She of course says she is "fine".


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## Jo-mom

I don't think you have that much power with the Crohn's gods.  This truly has been a rollercoaster.  She's remarkable.  I do hope things ease up for her especially during stressful exam time.


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## Tesscorm

Ugh!!    When will she be done finals?  I hope she has an earlier schedule rather than a later one.   It's so hard having the worry hanging over you and being unable to move ahead with testing for answers.  

Glad you'll be seeing her soon!


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## Maya142

Oh geez, poor O!!! I guess we angered the Crohn's gods. I hope she's coming home soon!!


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## crohnsinct

She will be finished with exams and come home on 12/13.


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## Jo-mom

Just checking in.  How's O doing?  Her exams are almost done!  I am assuming and hoping that she made it through okay?


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## crohnsinct

Hey y'all sorry been super crazy here and O has been all over the place so never really knew what to post.  

O had another lowish cal pro...141! HGB came back low normal again.  CRP slightly elevated at 1.3.  So looking at labs things seem pretty o.k..  However, frequency is often over 10 and some days there is measurable blood.  But only some days. 

She got a 4.0 this semester and is quite pleased with herself.  

So it was looking like we were facing the SIBO dx again.  I read up a lot on SIBO/IBS and if it weren't for her bleeding I would totally buy it.  

The GI asked us to meet the nurse practitioner to discuss dietary interventions which made us think he was thinking IBS.  

We went to nurse practitioner and loved her.  She is very smart and knowledgeable about all things IBD and SCD etc.  Her husband has Crohn's and he uses SCD as his only treatment.  She uses it in her practice with autism, IBD and IBS/SIBO.  She was the lead researcher on an IBD/SCD study.  

O has lost 6 pounds since mid October.  She is still on 9mg Entocort, 5 mg prednisolone and double dose Entyvio every 4 weeks.  She explained that O is very severe and doesn't have many good options left given the severity of her Crohn's and the fact it is in her upper and lower GI tract.  Total colectomy makes a lot of "sense" and then we could treat the upper tract BUT it is a big choice.  They are encouraging us to try to complement Entyvio with SCD.  She said they have had great success with the diet for SOME patients.  She said it is just like any other therapy.  It works for some and not for others.  It works better for small bowel Crohn's.  Works better for mild to moderate disease. O will probably never be able to drop drugs even with the diet but perhaps we could get her off steroids and maybe even lower her Entyvio dose.   So O's chances do not look great BUT in her opinion, it is worth a try.  It can't hurt.  She is young and adding more meds or going down the surgery route is a big decision.  

O would have to go on the diet by Saturday to get the introductory week out of the way before she goes to school.  Then she would only have a few days with me cooking for her, helping her figure out the ropes etc.  Not really enough time.  She would have to be strict on the diet and they figure it would be 1-3 years before she could add some "non legal" foods.  She would never be able to go less than 75%.  HUGE pressure to put on a kid going away to college clear across the country with no family support.  She is taking another 6 course semester next semester.  We discussed the option of hiring a chef to deliver meals.  It is closely related to Paleo so maybe it is an option.  

The BIG concern is her weight.  MOST people lose considerable weight on the diet and rapid weight loss starts the inflammatory cascade and O has no buffer and is already on a downhill slide.  So the GI, NP and surgeon are "sleeping on it" to decide if they are even 100% behind the dietary approach.  But honestly it really seems like they are. 

My concern is her noncompliance.  She though CDED was hard, how will she adhere to SCD?  I guess the difference is there are Facebook groups, lots of recipes online and the NP offered to review recipes, help her find substitutions etc.  

We discussed if she should taper steroids first and then start diet or start diet for two weeks and then taper.  The issue being if we start both at the same time and she flares more, we won't know which is causing it, the taper or the diet. 

We meet GI tomorrow to go over everything and make the final decision.


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## my little penguin

Good luck with Gi appt 
That is a lot to take in all at once 
Hope things can be explained more tomorrow


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## Pilgrim

A 4.0???!!! She continues to amaze me. Clearly if she decides to do the diet, she can see it through.


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## crohnsinct

Lol pilgrim!  

She kept saying it looks so hard. The NP asked her what was hard and she said figuring out what I can and can't eat and what to make. 

I pretty much said the same thing!  You just took 6 classes in college. Neuro anatomy, tongue anatomy (which btw I had no idea how many muscles and such are in the tongue). Etc and got a 4.0.  I think you could figure this stuff out. 

But you nailed it....the key is IF she wants to do it and she said "yeah I can do it but do I have time". The NP said it us super hard but just because of the time involved. 

Wish me luck. Off to GI today.


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## pdx

Hope things go well at the appt.


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## Jo-mom

How did it go with the GI today?


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## crohnsinct

It was a rough appointment.  It was a rough day with regard to symptoms. 

O lost another almost pound from yesterday.  GI said one more pound and that is it!  What the "it" is I am not exactly sure. 

He was very serious this time around.  More somber.  The least confident I have ever seen him.  He told O he thinks of her often, discusses her case with colleagues. 

Basically said she is out of options.  We have thrown a lot at this thing and nothing is really working all the way.  He said we could maybe try some off label stuff or clinical trial stuff but she is on double dose Entyvio, Entocort and prednisolone so not likely other things would work and do we really want to take the risks of more drugs with unknown risks.  The big "what if" is the fact that insurance has only approved double dose Entyvio for 5-6 infusions...then what?  He said, "...and I haven't even mentioned surgery.  I am trying really hard not to bring that up but if you were at any other center they would have done the surgery by now and you would have an ostomy".  I told him I was glad he was honest with her and brought up the surgery so maybe she would be more motivated to try the diet.  He said, "oh, o.k. good.  Didn't want to use fear but if it works".  It isn't fear as much as her understanding where we are exactly and while NP told us she won't accept it unless it comes from his mouth. She has said all along, "he always says there are no other options and then he finds something.  I think this time she knows it is the truth. 

The confusing thing is her calpro is the best it has been so he is wondering how reliable a marker it is for her.  

He is not thinking this is IBS (finally) overlay because the Xifaxan didn't work and she is bleeding.  Said, we could try some other IBS drugs but would like to wait on that if we are going to try SCD.  

So we are going to try SCD.  We are only doing three days of the intro given the weight concerns. She will lose too much weight if we do it for a week and then she will massively flare and SCD won't stand a chance.  He said the week is best but it is really an arbitrary interval they have all picked anyway.  

Reintro of food is supposed to go super slow.  1 food every two days.  However, given she is only home for 12 more days, we need to get a supply of recipes she could use so we are going to do a food a day. 

Tapering prednisolone down to 2.5 for 3-4 days then 1 for 3-4 days then stop. Leaving Entocort for now as he doesn't want to change too many things at once. 

She is back to weigh ins and vital checks at the school nurse weekly.

Then she asked, "can I go away for spring break"....LOL!  He said, "seriously?"  You will be on SCD are you ready to travel on the diet?  I need to see you?  blah di blah blah.  He said, "we'll see".

She told her friends, "It is a we'll see but I will bat my eyelashes and make my sad puppy face and he will cave".  LMAO! But we actually figured out a way she can come home for appointment with him and still go away...if he says yes. 

We start the diet on Sunday.  Our yogurt maker doesn't get here until Tuesday.  I will start another thread detailing our SCD journey.


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## Jo-mom

Wow this is a lot.  So sorry this is happening, especially during the holidays where she is home and you just want to have some "normal" time.  It is interesting that her cal-pro numbers are good.  You've guys have tried so much so SCD is definitely worth a shot.  It has worked for many people.  I hope it helps.  
Thank you for sharing this.  We are all thinking of O and you and although it's O going through this, I know you are affected by it greatly.  Look at you already waiting for the yogurt maker.  Please keep us posted on how the diet is going.  Big hug.


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## my little penguin

Great big hugs  
That is so much 
Tagging @Optimistic 
Her kiddo did scd but with formula to keep weight up I think ???


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## crohnsinct

Thanks guys. Yeah I am planning on picking Optimistics brain for recipes etc. 

We discussed formula but there is too much in it that is SCD illegal so if we are all hell bent on SCD, you know what is probably next but no one actually said it. We didn't want O to freak because staying home is the only thing that seems to uoset her and TPN means home.


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## my little penguin

A lot of kids do formula (even though illegal ingredients) with SCD and it really works 
Not TPN 
Tpn does not work woth scd


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## crohnsinct

Hmmm I guess if you aren't going strict it is o.k. but we are following the PRODUCE protocol and it doesn't allow formula.  Of course I am sure they may change their minds if she loses enough weight 

But honestly, I just looked at the PRODUCE protocol and it is much more liberal than Nimbal or BTVC in the beginning stage and then stage 2 doesn't specifically say a food every 2 days, it just says to add all legal foods.  So, I wrote to the NP to ask if my understanding is correct and if so, I think she will be fine as there are enough foods included at each stage and bananas and avocado are in the beginning stage so we are golden!


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## pdx

Oh man--big hugs to all of you. 

We tried SCD early on when my daughter's intestines were a mess, and while it did reduce her pain, it did not reduce inflammation and she lost weight--not from lack of eating enough calories, but because she wasn't able to absorb enough with her damaged intestines. (I think SCD has a better chance to work when the disease is already under control, or when inflammation is mild.) The thing which drastically improved E's health, and very quickly, was semi-elemental EEN. EEN, or just night time NG-tube feeds, would be easy for O to do while at college, especially compared to full SCD. 

I'm sorry to be such a broken record, but I can't understand why your doctor would consider SCD before formula for someone who's disease is as severe as O's. I know you've said that you don't think O would do an NG-tube, but most of our kids felt this way before doing it. My daughter has extreme physical sensitivities, and I would have told you that there was no way she could handle it, but she totally did. And O is such a strong person--she could do it! Or if she wouldn't do a tube, I agree that supplementing SCD with formula is a good idea. 

Best of luck to her whatever you decide on--I will be thinking of you all.


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## crohnsinct

Thanks PDX. Well if you are a broke. Record I am one also because I keep asking. Couple things working against us. 

1- o's flat out refusal to do it and
2- she needs a permanent long term strategy and her GI doesn't consider EEN a long term solution.  

The first three days of SCD are supposed to be easily digestible food.  They said like gut rest. O wasn't thrilled with the lack of variety etc and asked if she could do EEN for three days. That was a hard NO from NP and GI. 

Just today O was whining about poor her and SCD and I said," then don't do it". She said,"I don't have a choice". I said,"sure you do"
1- do EEN and maybe cycle off and on good.  She said nope
2- do TPN and cycle on and off...nope 
3 - have surgery...nope
4 - do nothing and take your chances...nope. 

Well then sounds like you decided!  

But now you are jogging my memory...remember way back when she was going back to school.  There was discussion about the g tube and she seemed amiable to that. Think I will ask her about that.


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## crohnsinct

LOL!  I asked her about g tube and she said not yet but she would do that before surgery. 

Incidentally, we went to a play today and she went to the bathroom three times. Actually asked the usher if there were any open end seats she could sit in and sat away from the family. But she is "fine".


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## Delta_hippo

Maybe worth trying coconut milk, as long as you can get a brand that doesn't have artificial crap in it, I get biona off amazon but I'm in the UK.  High fat, scd legal and good for you.  Mix with roast butternut squash, bone broth and turmeric for soup or banana, berries, filtered water and ginger/ cinnamon/ cloves for smoothie.  Don't know if it's scd legal but a blob of almond butter can be added to both for extra calories.
Good luck.


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## Optimistic

Thx for tagging me MLP. I haven’t been on here in ages and tags go to my junk email which I happened to check. I’ll read up and see how everyone is doing. I hope uneventful is the dominant theme. 

As for O...wow. Not what I wanted to read. She has such grit and resilience, how does she do it? I think her willingness to possibly try some things is a big win. Strike while you are hot. I know she hates the idea of feedings. I would too. It was much easier to bribe and convince a 13 year old to do night feeds than a grown woman. If we could somehow link feeds directly to less time in bathroom - how can we create a false old memory and implant that? 

Summary - My son went from EEN and steroids to SCD and steroids so we don’t have a clean read of what sent into into remission. To further complicate things, for first year or two he had a subset of SCD legal foods- only organic, fresh, and as unprocessed as possible. We stuck to it like crazy people. We talked to drs and nutritionists in the US and UK who use SCD and they all preached that modified SCD or any illegal foods is not SCD. You are on it or you aren’t. I’m so glad you have the nurse to guide you. I was like a stalker of the dietician who helped us!  After 3-4 years he did slowly add in some illegal  foods. There are some foods that he can never add based on his disease. 

He didn’t start shakes at beginning of SCD.   They are filled with the worst of illegal SCD ingredients and the longest list of chemicals. I lost sleep when he added them but he needed a way to eat away when I couldn’t send food. Sometimes I made faux shakes out of homemade yogurt to ease my angst. It makes no sense why he can drink 2-5 per day on SCD but it works for him. 

You may remember he took himself mostly off scd last year.  Grrrr. We did beat him into submission and he restarted intro under my watch. Now he is pretty much back on it and *i think* doing an ok job at college (disability services, navigates cafeterias after befriending a few workers, found a couple of accommodating  restaurants, and gets some Whole Foods grocery deliveries). He met a girl who wants to be a dietitian who is very supportive.  I suspect a few girls help with his prep occasionally in exchange for getting some decent healthy food themselves. 

Recipes? Very few are delicious  I think you have to reset expectations and not think of food as enjoyable. Then occasionally you are surprised. Other than prep this is probably hardest adjustment. 

Please keep us posted on how the next week goes.


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## crohnsinct

Thanks Optimistic! 

We were also told the same, strict SCD or nothing.  They said to expect strict for at least a year to three years.  Then we could experiment with adding some Illegal foods, mostly taking from the "modified" SCD list so things like oatmeal but probably never things like wheat and sugar. 

Our GI office is actually participating in a study looked at the effectiveness of strict vs modified SCD.  Looking forward to those results. 

O has lost another pound but she was already losing weight so I am not ready to totally blame SCD. 

She killed it with the intro.  Well.....we didn't do the BTVC intro.  We just did the easily digested foods part.  Today we got to add a new food. 

BM's are still the same but I know it will take more than three days on the diet to make any difference. 

I miss my wine but I just read that really dry wine with a sugar code of 0 or 1 is allowed.  Off to google which wines fit the bill.


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## Maya142

Is it possible for you to go with her to school for a week, CIC? Help her get settled in and help her figure out some quick and easy recipes. It will be an adjustment to get used to eating for nutrition and not for taste. My daughter has had to make that shift due to her Gastroparesis. It is particularly bad right now and she has essentially had to stop eating regular food and is eating very few foods that are bland and easy to digest. She does occasionally cheat and then really pays a price for it. The other night she insisted on eating salad (raw veggies are really hard to digest with  Gastroparesis) because until recently her GP was under control and she had been eating salad with no issues. Well, it was a huge mistake. She was so, so nauseous despite Zofran and was miserable for hours - she threw up several times, 8 hours after eating, and there was still salad in her stomach.  And then we spent several hours just draining bile from her stomach - she was up all night.

Anyway, my point is that she's had to do this quite often - switch to a diet that is very restricted, very bland and one that she hates. She only does it  because there are really no good options for Gastroparesis. Her situation is much less serious than O's, but the shift to thinking of food as sustenance only is similar, and it is tough. It's something poor O will have to get used to.

Honestly, I think doing EEN might be easier or at least 80% EN might be easier!!  You could honestly probably do her G tube surgery over spring  break! She is so tough that I'm SURE she will recover quickly. And even M, who recovers at a snail's pace, went to college two weeks after surgery. I bet O could do it in 1 week.

All of this is a lot to deal with. I do understand that she is probably frustrated and tired of this and that may be why she is pushing back against the NG tube. And of course, her GI seems to prefer the SCD to EEN (which does surprise me because EEN has been proven to induce remission and the SCD hasn't yet - is that still correct or am I behind on my research?).

But really I think talking about the G tube reminds her there is a plan B, even if it's not ideal. I also am not quite sure why they won't consider two biologics.

I would honestly get a second opinion at this point. NOT because I think your doctor is wrong, but because you're getting close to surgery and that's a big step. I'd go to a center like Mayo Clinic or Cleveland Clinic who have great adult gastroenterology departments. Just to confirm that a double dose of Entyvio and the SCD are the only options. Because perhaps they have other options that are open to adults or even clinical trials.


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## crohnsinct

Just a quick update:

O's frequency hasn't changed much. 

She is now waking every night and half the time twice a night. 

She is passing on going out because of concern over needing to use the bathroom. 

Blood isn't too bad but we are still seeing some 1-3 times a day 

She is killing it with SCD!  Having a great attitude, not one illegal ingredient has crossed her lips. Maintaining her weight at 117. 

She is totally off prednisolone. Missed one day if Entocort and had a really bad day. might be coincidence or might be evidence Entyvio isn't cutting it. 

Her infusion was due yesterday but GI gave permission to wait till she was back at school on Tuesday.


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## Jo-mom

What a trooper she is.  She deserves a break.  Man, we would love to read a post where she is going 1 to 3 times a day no blood... the end.


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## crohnsinct

^There was a time...4 years ago...a distant memory now.  Heck at this point I would settle for just one of the 8-12 BM's being normal!  Or how bout a full night's sleep?  Crohns is so stupid!


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## Pilgrim

Not as worried about the BMs as I am worried about the passing up opportunities to go out...


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## crohnsinct

Just heard from GI.  He says SCD will take a while to kick in and often people see symptoms get worse before they get better but that the inflammation markers should not get worse so we will see come labs next week.


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## Maya142

Please consider having her see an endocrinologist as she is tapering off Entocort. One of the symptoms of adrenal insufficiency is diarrhea - in fact, M's initial adrenal crisis (she wasn't quite in a crisis, but very close) was initially thought to be a tummy bug or IBS or IBD till we got her blood work back - then we were sent to ER for IV hydrocortisone ASAP. Diarrhea, nausea, fatigue, dizziness, weight loss - all symptoms that could overlap with IBD but could in fact be adrenal insufficiency.



> There was a time...4 years ago...a distant memory now. Heck at this point I would settle for just one of the 8-12 BM's being normal! Or how bout a full night's sleep? Crohns is so stupid!


Poor O - I wish she could catch a break for once. It does sound like the Entyvio by itself isn't doing enough - she seems pretty steroid dependent  . But fingers crossed it is just her body getting used to the SCD?

I'm worried too that she's not going out - that must mean things are pretty bad, because this kid took 6 classes and got great grades and was involved in SO many extracurriculars despite a raging flare.

Could it be because Entyvio has been delayed? Though since she is on Entyvio every 4 weeks and on a high dose, the fact that 3-4 days late causes such an uptick in symptoms is a problem...


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## crohnsinct

Sorry, I updated O's status last night on my SCD thread.  I thought she was doing pretty o.k. but after that post the dam burst and she went another 5 or 6 times.  So up to 14/15 for yesterday.  

Today not so great either.  7 and it is only 10:45 a.m..  When formed, consistency is getting looser.  Blood is back and undigested food.  How this kid is maintaining her weight is so beyond me.  

She is leaving in an hour.  I am a tad concerned but pegging it and praying.  Really hoping infusion on Thursday clears this right up.


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## Pilgrim

Sorry to hear it. Hope that travel goes well and without incident.  Praying things get better at school. I seem to remember she had an improvement when she went back to school last time. I think she thrives on stress most of us would only struggle through.


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## Tesscorm

Wow, I'm just so sorry that O is going through so much!  I really wish things were improving and stabilizing for her.  Lots of prayers that things settle once she's back at school...  and that SCD truly begins to make a difference.


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## Pangolin

Poor O. If you ask me, I think it might be time for a couple weeks or so of TPN and nothing by mouth, and possibly more antibiotics.


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## crohnsinct

Unfortunately, antibiotics were already tried and were a HUGE fail.  She was on them for two weeks and ended up losing a lot of weight and inflammation took over her entire colon to the point that they almost did the surgery right then and there.  I don't think her GI or any other would try them again.  

TPN isn't an option now as she is back at school. 

Honestly, he and another opinion we have gotten said she is just so severe and so refractory that our best option may be proctocolectomy.  We talked about total gut rest and that would mean a temporary diversion as no one will do real/full TPN as outpatient and the lipids/fluids we did over summer at home were not enough calories.  The surgeon said that if you are so severe that even steroids can't hold the disease then a temporary diversion in 90% of the cases turns into permanent and is really advocating just the one surgery. 

The GI is really holding out hope that all these symptoms are more from her SIBO than her IBD but with the bleeding that isn't likely.  He is hoping SCD will kick in before insurance makes us reduce Entyvio down to 300mg.   

He has gotten her to this point so I am trying to trust him on this one.  She has break in March and wants to go away.  He said he will make the call about whether or not he needs to see her in May, in a couple of weeks.  I don't even want to know what that May appointment will be for.  

I still need to understand why we aren't trying Humira or Stelara.


----------



## Pangolin

I'm concerned that things sound like they're getting pretty serious, and she may be running out of nonsurgical options. This disease can be so hard to get under control. I hope things turn around for her soon.


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## crohnsinct

Thanks.  That is what they are saying.  That she is running out of non surgical options.  But they are also still saying that surgery should not be viewed always as a last resort and rather just another treatment option. Timing is key with surgery so if we fight, fight, fight and wait too long the surgery could be a lot more difficult than if we plan it well.  She is in a much better place now than she was over the summer so if it does come to that, I think she will recover a lot better and the surgery will be easier etc.  

If we find ourselves there, we plan on getting another two opinions.  One from a well known adult IBD doc who actually uses Tsyrabi, even though that drug scares me.  Then also another center known for their surgeries.


----------



## Optimistic

She made it to school ok? I hate how long this uncertainly has gone on and how sick she is. Where do you find the energy to think about options with a clear head and get these other opinions? Very impressive. I see where she gets her fighting spirit and resilience!

Hoping and praying you’ll have a long period of uneventful days, soon.


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## crohnsinct

You are so sweet!  Yes!  She made it to school o.k.  GI gave her the o.k. to take Immonium for the flight.  Nothing stinks more than landing and being held on the runway with the fasten your seatbelt sign when you have to go!  Seems to have worked.  But her body only gave her 4 hours sleep once she got home.  Poor kid.  

Honestly, I am not thinking about the options much. Taking the here and now approach.  Sort of, "I'll jump off that bridge when I come to it". 

Distraction nd keeping myself busy helps.  I have 3 part time jobs They were actually volunteer things I was doing that when I disappeared for Thanksgiving vacation, things fell apart because there was no one else who could do them.  They realized my importance so made each of them a job but now I work for three different bosses!  Then there are my other volunteer duties....so I don't have time to think or dwell.  Unless of course we are talking about 3 a.m. when I can't sleep and I start googling diversion surgery   

She is going food shopping today and sent me her list wondering if there was anything she forgot.  Quite impressed with how thorough she was.  She just forgot coconut oil (refined and unrefined) and VEGGIES and whatever meat she wants. 

Ordering her yogurt maker today.


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## crohnsinct

Well, little miss 4.0 made it back safely, shopped for all her SCD legal food and FORGOT TO DO HER LABS BEFORE INFUSION!  

She says she was tired from trip and nurse changed the infusion at the last minute from tomorrow to today at 5p.m. and she just completely forgot about labs.   

Can you believe her?!  I told her it was her loss because if she did labs and inflammation was up the GI might have said, "let's forget SCD" but now she is stuck with it for at least another 4 weeks.  HA! 

......or maybe she forgot on purpose because she doesn't want to know the numbers? Could she be that sneaky?  She is my daughter.......


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## my little penguin

If she got the infusion tonight 
They can do labs in the am ay lab Corp or quest 
Given her current state she really needs labs even if they are 12 hours after infusion


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## crohnsinct

Well O seemed to think that the labs are not that necessary so she emailed GI telling him she forgot and she is letting him decide if she should run over there today and do them.  But it is 3:30 her time and lab cases at 4 so that ship has probably sailed.  She did save a cal pro sample this a.m. just in case though. 

She checked in with school nurse and on their scale she is 118!  Up a pound from our scale and 2 from GI's so that is good news.


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## crohnsinct

Hey y'all. 

O never did those labs.  She wrote to GI and he never wrote back - ce la vie! 

Ever since infusion O has slept through the night!  Had three days of blood after infusion and then bleeding stopped!  Frequency is down to 8-9.  

It's a wonderful day in the neighborhood.  

Insurance approved the double dose through her March infusion so we will sit tight.  

She is still 100% legal on SCD.  Did a lot of baking over the weekend.  

GI is pleased with weight and says that symptoms will take a while to resolve on SCD so patience is the operative word here.   

Nice boring update for a change.


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## Jo-mom

Love it!  Boring is good!


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## Pilgrim

I am so happy! It's all good news. Nothing boring about good news!

I am excited that SCD is going forward. We are back on it too for both our Crohnies, so we are watching for great results...and great recipes.


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## newdiagnosis

Pilgrim said:


> I am so happy! It's all good news. Nothing boring about good news!
> 
> I am excited that SCD is going forward. We are back on it too for both our Crohnies, so we are watching for great results...and great recipes.


any advice about starting scd? been with crohn's for two years, on stelara. Just recently flared, seems like a mild/moderate flare. Now thinking about getting serious about scd. From my past experience in remission, I didn't really feel like food was associated with flare/exacerbations. The flares just seem to come on randomly, sometimes maybe when i eat spicy/sour food.


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## crohnsinct

Read the book Breaking The Vicious Cycle.  

Get a good RD with experience with SCD.  

The NiMBAL site is a good resource. NiMBAL Therapy book is good also.  

Join a Facebook or SCD forum community.  They have lots of advice for just about any substitution, recipe, situation etc.  

Tell your physician you are trying it.  They might want to monitor certain vitals or labs a little closer.  

We basically just flipped the switch and started one day.  We didn't have time to read or clean out the pantry or anything like that.  it is nice when you can but not necessary.   

I have an SCD Journey thread here in the parents section.  IDK if you will find it helpful but take a look.  

Feel free to ask any questions over there.  I am not an expert but am learning.


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## Maya142

I LOVE the boring update!!! Way to go O for sticking to the SCD. 

I'm  a bit confused about the labs though - I understand they are usually done by the infusion nurse, as long as there are orders. But if  O didn't  have the orders, she could easily have them uploaded to the portal or faxed  or whatever. A few days after Entyvio shouldn't make such a difference, should it?


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## crohnsinct

Not so boring afterall.  Blood came back last night.  But it isn't the scary fill the toilet kinda blood so..... 

Her home infusion nurse can't pull labs as she can't handle fecal calprotectin samples so since O has to actually go to the lab anyway she just does them all there.  The lab has the standing orders and O had the cal pro sample but she didn't want to get in her car and drive 7 minutes away to deal with the lab if she didn't have to (you know with all the pressing and important things college kids have to do in a day) so she wrote to GI and since he never responded she figured she was off the hook. 

I think if she did the blood labs right away the next day it wouldn't have mattered but 2 or 3 maybe since she gets such a high dose of Entyvio????

I am peeved because I really wanted to know what her CRP, HGB and cal pro were but GI wouldn't have done anything with that info anyway so whatever.


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## Maya142

> The lab has the standing orders and O had the cal pro sample but she didn't want to get in her car and drive 7 minutes away to deal with the lab if she didn't have to (you know with all the pressing and important things college kids have to do in a day) so she wrote to GI and since he never responded she figured she was off the hook.


LOL, that's the classic college student for you. I remember my older kiddo once had a miserable cold that lasted quite a while, and so finally when she went to the student health center, she was prescribed antibiotics for a sinus infection. She texted me saying she was "too tired" to walk two blocks  (literally a 6 minute walk) and pick up the antibiotics and would just get the script filled when she came home two days later. I felt so bad for her being too tired to walk such a short distance and was worrying when her younger sister said "Well, I guess S is feeling better, she's getting cheese steaks with her friends" at a restaurant that was 6 or 7 blocks away !!
I was not happy!!!

But anyway, you're right that blood work may not give us an accurate picture. CRP can go up and down quite quickly. I was thinking more about her HGB, Hematocrit, Albumin etc. Do you think those would be affected too, just within a couple  days?

Sorry to hear bleeding is back. This poor kid. Is she off Entocort too now?

Any news on getting a second opinion? I would definitely get one ASAP - I really think one of the big IBD centers should see her.


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## crohnsinct

Not off Entocort.  Still taking 9 mg's daily.  5 months now....so much for 12 weeks max!  The GI is really rather cavalier about the systemic absorption of Entocort.  

I don't think the other numbers would be affected too much but like I said, with the intro of SCD and all, I don't think the GI would have cared much about those values as he keeps saying things get worse before they get better and we just have to be patient.  She has been on SCD for 3 1/2 weeks.  I wonder how long is long enough to judge whether or not it is going to work.    

O is not on board with a second opinion right now.  She was over the summer when she was inpatient but the two centers I sent her records to were both saying over the phone, "colectomy".  Then she got out and things looked better so she put second opinion on hold.  Now with her GI saying, "if you were at any other center you would have had a diversion by now" she is really not wanting to go to another center.  I keep trying to explain that another center might agree to try a different drug and she has nothing to lose.  I think she knows she has this GI wrapped around her finger and doesn't really believe he will suggest surgery.  We will see.  She has spring break in March.  He Had originally said he wanted her to come home.  Then he said, "O.K. you can take your trip but come home and see me first."  Now he is saying, "well, let's see how things are going, maybe you won't need to come see me and can just go on your trip".  Can you believe this guy?  I can't wait till his kids are teenagers!


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## my little penguin

wow 
woth those types of instructions no wonder she doesn’t want to see anyone who might suggest
“Realty “
At her age I doubt anyone of us would have made a different decision give the fact the Gi is “fine “ with things


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## Tesscorm

Even with some bumps, I hope she's really on a path to improvement!

I understand re the labs...  it would've been nice to have a starting point for comparison... oh well, at their age, we have to bite our tongues more and more often.   You've really got to start picking your battles!  Lol

Just more wishes that you really do start seeing consistent improvement.


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## crohnsinct

Got weighed today.  One week on her own and down 1.2.  Not bad but I am watching it.  Still up .8 from at GI's office so......


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## crohnsinct

Bummer.  Frequency 11.  5 of those times blood.  Was woken at 2 a.m.


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## my little penguin

Big hugs


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## crohnsinct

Another week another update. 

Weight down another .6 of a pound.  Approaching the "that's it" mark but don't ask me what "it" is. 

Frequency back down to 9-10.  No blood since Monday.  Night waking every night. 

She is updating GI and asking if she can go away spring break and not come back and see him.  Who is in a betting mood?


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## my little penguin

Oh I am sure the Gi will be ok with that


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## Jo-mom

I hope he says no but I think it's remarkable that she won't let anything stop her from trying.


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## crohnsinct

LOL - She says, "if he is o.k. with me going to school, surely he won't mind me laying on a beach".  She is missing the point about being able to see her and have a conversation about the plan going forward.  Not to mention that I really think he should order scopes but we all know this guy isn't about to do that.


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## Delta_hippo

I’m sure I have read allow 30 days for scd to start settling things, then up to 2 years for maximum recovery.  So if she can keep going a bit longer she can’t be far off thirty days?  

Also in such severe cases my view is do everything that might help even a little bit.

I hope this works for her, she deserves a break xx


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## crohnsinct

Thanks Delta-hippo!  We are at the 30 day mark now.  Wow, time flies when you are having fun!  

I totally agree and actually we are all rather enjoying the diet so it won't be hard to stick with it, even if the doc declares it a fail.  I am actually more anxious to get her off Entocort and a little concerned about what will happen once she has to come back down to 300mg of Entyvio.  But that isn't until her April infusion so that gives her three more months on SCD and hopefully it will be really kicking in by then.


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## crohnsinct

My forum is freaking out and making me send a response otherwise I can't get out of this darned thread.  

Happy Friday!


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## Maya142

> She says, "if he is o.k. with me going to school, surely he won't mind me laying on a beach". She is missing the point about being able to see her and have a conversation about the plan going forward. Not to mention that I really think he should order scopes but we all know this guy isn't about to do that.


She does deserve a break but wow, she is really not understanding or refusing to understand how serious this is! Losing your colon and having an ileostomy done is a major, major surgery. And she was perilously close to that this summer! Her poor body need to heal!
But she certainly deserves a break - I wish she could do both! But I really think she needs to see her GI and I would feel SO much better if he did scopes to see if there was healing. Because that might give you valuable info - if Entyvio isn't working at 600 mg, then you probably need a different drug. Stelara would be next, I'm guessing. But hopefully it would show some improvement, which you could then use to get insurance to pay for the double dose - one of my daughter's doctors said that when appealing for something that is not done commonly (or ever!), such as a really high dose of a biologic, hard evidence helps - scans, scopes, high CRP etc.


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## Pangolin

I wonder if there's any chance of trying, say, Stelara plus Entyvio. It sounds like the Entyvio has helped some but not enough. I know it's unconventional, but this might be a case to add another biologic like that.


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## crohnsinct

Yeah, it was presented as a possible option some time ago.  Insurance won't cover it with the 600 mg's of Entyvio so we would have to back down 300 AND the consensus among the GI's she has seen is that Stelara isn't as effective with colonic disease as it is with small bowel. I say we should at least try.  They also said that her TI disease is not well controlled with Entyvio and are thinking if we go forward with the colectomy then we could move to Stelara for the small bowel.  

I also will be asking him about adding Humira to Entyvio.  I would think that is a good option considering she responded to Remicade for a few years.


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## Maya142

Stelara was approved UC recently,  so it must work to some extent for colonic disease - perhaps you could use that to make an argument with insurance? Then it could potentially help her small bowel, colon AND psoriasis. So would Humira though, but Stelara is better for psoriasis. But I think Humira would probably be better for the IBD...they're both options. 
I know she is currently on 4x the normal amt. of Entyvio - 600mg every 4 weeks. And I agree she'd possibly have to go down  to 300 mg every  4 weeks, but the other biologic should hopefully pick up the slack.  We have even managed to get high doses of both biologics my daughter was on.  There was a period of time she was on a triple dose of her arthritis biologic and a double dose of an anti-TNF (Cimzia) for her IBD. We didn't even have trouble getting the double dose of Cimzia! I was pretty shocked by that since she was already on such a high dose of the other biologic.
I won't lie - generally getting 2 biologics approved is tough. But it is done - definitely more in the arthritis world than in the IBD world, based on my research, but I've definitely seen a few patients with IBD on the forums on either  Humira and Entyvio or Stelara and Entyvio.


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## crohnsinct

Weight down another .6.  Another .7 and she will be under the "that's it" threshold.  Her symptoms kicked up a bit astroturfing week and after she updated the GI he said he was hoping SCD would have helped with symptoms by now but that since she wasn't under the low threshold yet to keep going and stay in close contact.  He said he might be willing to just do a conference call in March rather than an actual visit.  I think I said this on the SCD thread but I find it interesting that he is getting anxious with SCD and it had only been 5 weeks yet he was willing to wait for Entyvio for 26-30 weeks and beyond.  

Although she lost a little weight, symptoms are going well actually.  Still no blood and frequency is going down.  Maybe SCD is kicking in?


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## crohnsinct

Hey ya'll.  Some good news to report.  

O has gained two pounds.  Still not where they want her but at least she reversed the downward trend.  

Blood labs posted and her CRP is cut in more than half!  It is perfectly and completely normal.  

H&H are the best they have ever been. Perfectly, completely normal! CRP cut in more than half to a more than normal value! 

Albumin squeaked right into normal range.  Honestly all the blood labs are incredible. 

Still waiting for cal pro as she has had inflammation on cal pro and not in blood labs before.  However, her blood labs have been awful for a full year so just this bit is very encouraging.  Maybe now her inflammation is more moderate or mild. 

She is still going around 8 times a day with night waking.  No blood for two weeks!  

So maybe continued symptoms are IBS/SIBO?  If so, I am not willing right now to abandon SCD for FODMAP.  I guess we could just tell her to eat SCD legal foods that also happen to be low FODMAP but that would be restricting her diet even further and I am not sure that is in her best interest right now.  IBS/SIBO don't cause damage so I will leave that for another day and deal with it if and when we are sure inflammation is totally gone.  

So did the SCD do this? IDK.  If you think about it although she has been on Entyvio for a year she only just started the double dose in November.  So it has been about 12 weeks on double dose.  12 weeks is how long they say it takes for you to see Entyvio effects.  So could be Entyvio, could be Entocort, could be diet, could be some combination of all of it.  

I would really like it if she got scopes to confirm what is going on in there but this center doesn't like to scope so not holding out much hope for that. 

Stay tuned for cal pro...


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## my little penguin

My bet is entyvio is the heavy hitter at the higher dose 
Entocort knocked down the inflammation so the entyvio could maintain 
Scd just gave entivyio and entocort the bump needed to get over the inflammation hump


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## Jo-mom

Great news!  It sounds like the diet is really helping the Entyvio.  It doesn't hurt to continue with the diet.  What is her CRP at now and what was it before?  Nice to hear positive news.


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## crohnsinct

I think it was 13...or maybe 19.  Either way those were both very good for her as she had been 230.  <10 is considered normal.  So she is killing it!


----------



## crohnsinct

78!  HER CAL PRO IS 78! Unbelievable! 

So the question now is why is she still having frequency and night waking.  Her GI admits that this is confusing and he thinks we should reconsider SIBO/IBS.  He says that while SCD is used often to treat SIBO, he has seen it make SIBO worse in the beginning as it is a radical change in gut microbiota.   He is wanting to add Xifaxan to treat the SIBO.  O says Xifaxan didn't help last time but GI says last time her IBD was also active so we really have no clue if it was treating the SIBO.  Now with healing occurring perhaps the Xifaxan would work.  She wonders whether SCD just needs more time to treat the SIBO.  

They came to a compromise.  They will wait one more week and if her frequency is still above 8, then she will start Xifaxan. 

In other news, her infusion was due Wednesday but the infusion provider only sent 300mg.  GI would not approve that.  Wanted 600 as she is approved for two more infusions.  Infusion got moved to today but O has been off living her happy full life not giving Crohn's a second thought and lost track of the fact that she never got the other 300mg.  Lucky GI was checking emails on a Saturday.  He said do 300 today and try to get the other 300 shipped and do another infusion later in the week.  I am nervous about what this means insurance wise.  The approval was for 5 infusions of 600 mg.  So will they count these as two separate infusions and then she completes the 5? I guess it is o.k. if this completes the approval as she only had one more 600mg dose left after this anyway.  We were going to have to jump off this bridge eventually....we are just doing it sooner now.  

GI says we will circle back later and discuss whether to pursue another approval for 600 or just move ahead with 300 going forward.  Not going to lie....a little nervous....600 got her here....ya know the old saying, "dance with the one who took you to the dance".  

Ugh!  

Also since it is infusion week, notarially sure if symptoms get better if we can say SCD is working on the SIBO or if that means symptoms were IBD and Entyvio is working on the IBD.  

Clear as mud!


----------



## crohnsinct

Forgot to mention....the GI thinks these great results are a combo off double dose Entyvio finally kicking in but also SCD giving it a much needed boost.


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## Jo-mom

That's great!  And yes it can get confusing if you start thinking about it all, but it's great news about the Cal Pro.  Eventually this will get figured out - what is working.  I understand what you mean about getting nervous about the changes of dosage.  Cross that bridge when you get to it.  I do think it's a combo as well as better results seemed to have come about after the SCD was introduced.


----------



## Pangolin

Great news. Seems like a good example here of Entyvio taking a while to work but eventually getting there. My son is on Entyvio right now. It's been 3 months at either 100mg or 200mg (blinded). We've noticed substantial improvements but we'd like to see more. So far he's had a good experience with it.


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## crohnsinct

Pangolin - why is he blinded?  why only 100 or 200mg?  standard dose is 300mg.  What is his interval? 

For O is isn't just time but optimal dosing.  She needed 600mg + budesonide + SCD.  here's hoping when she drops steroids or dropdown to 300MG things still hold.


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## Pangolin

The standard induction doses are at 0, 2, and 6 weeks, and then it's supposed to be every 8 weeks thereafter. He's in a drug trial, and they're testing different doses. 200mg would be considered a standard younger/smaller pediatric dose. My guess is he's going to need more, but that remains to be determined. Nevertheless, so far I'm happy with it.


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## crohnsinct

Oh well....O is 3 days post infusion at the 300mg dose and blood is returning.  Was nice while it lasted. Working on getting the other 300 but the red tape is ridiculous.


----------



## Maya142

Oh geez, poor O!! She really needs that super high dose - my guess that is what has helped her improve. I'm sure Entocort and the SCD are helping somewhat, but I would definitely guess that it's Entyvio doing most of the work. So very frustrating - you've just gotten her out of a 2 year+ long flare, and she's getting worse again because of all the ridiculous red-tape.

We are getting similar push-back on biologics - they are making increasing the dosing and frequency VERY difficult. I spoke to the pharmacist and he told me they are hearing this more and more from patients on biologics  - that insurance companies are getting stricter and stricter, which is hard when you have an "out of the box" kid. We were even told that switching back from home infusions to hospital or infusion center infusions doesn't work, because they are billed the same way. For my daughter, they are denying an increase in frequency of her biologic (from every 4 weeks to 3 weeks) and even though they approved every 2 weeks last year, they denied every 3 weeks this year, which makes no sense to me at all!

Anyway, I hope your GI is able to get her the higher dose. Poor kiddo.


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## crohnsinct

Hey y'all.  O hasn't gotten her second infusion yet or started Xifaxan...long story.  

Blood stopped and frequency is way down and looks like night waking stopped.  

Her weight is up 3 pounds.  

Looks like maybe she doesn't need the second infusion or the Xifaxan.  

GI had asked O to get a cal pro this Friday but not sure she will remember as things are going so well and well....ya know....college....better things to do!


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## my little penguin

That’s great news !!!!!
Love  it !


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## Maya142

That's great news! So glad she is starting to feel better (but really hope she gets that extra 300 mg Entyvio anyway!).

I text my daughters when I know they need blood work or other testing done that is important. I've learned over the years to ask  "Do you want me to text you to remind you to...(make an appt., or get imaging done or to get blood work done, particularly if it's for an upcoming appt.) tomorrow?" That seems to go over better than"Have you done your blood work yet?"  !!


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## crohnsinct

LOL Maya!  She specifically asked me to leave her alone and said she was a big girl now and could handle it without my reminders.  That lasted a week.  She was begging me to come back in today.  I don't want to.  A) she has to learn to do this herself and B) I rather liked not having to juggle all that!


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## crohnsinct

Hmmm lets see if I can catch you guys up: 

Weight stable. 

She got her second dose of 300mgs of Entyvio and then 11 days later got her next 600mg dose.  Day of that infusion her cal pro was up to 232.  Not too bad for O but not the right direction. The three previous months were 150, 140 and 73.  

Her glucose is back up high which makes no sense because she is still 100% strict SCD and eats no carbs except for fruit and veggies and honey.  We are watching it. 

GI gave her the o.k. to start to wean the Entocort by dosing M,W,F at 9mg a day still. 

She is on spring break now and on a beach somewhere loving life.  

Her frequency is down to about 5 a day (some days are extraordinarily normal at 2 or 3), no bleeding but night waking almost every night still.  Looks like SCD did all it is going to do.  O says she can live like this.  

Her approval for infusions is up.  GI has to file another request.  IDK if he is going to ask for another round of 600mg and if he does what insurance will say but will of course keep y'all posted.


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## Jo-mom

It's interesting that he wants to keep Entocort at 9 MG every other day instead of dropping it to 6 MG every day.  Not a bad report card though and so glad that she is able to enjoy herself.


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## my little penguin

That’s great news !!!


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## crohnsinct

GI is pursuing approval for ongoing infusions at 600mg Q4.  Fingers crossed!


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## Jo-mom

Toes crossed too.


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## my little penguin

A d noses crossed too !!!


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## Scipio

crohnsinct said:


> Her glucose is back up high which makes no sense because she is still 100% strict SCD and eats no carbs except for fruit and veggies and honey.  We are watching it.
> 
> GI gave her the o.k. to start to wean the Entocort by dosing M,W,F at 9mg a day still.


Elevated glucose may be due to the Entocort.  Budesonide is not as bad as prednisone, but corticosteroids in general can drive up the blood glucose levels and even induce diabetes in some patients.


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## crohnsinct

@Scipio Thanks!  She had been on prednisone for a very long time and they were sure that was the initial cause so we got her completely off prednisone and onto Entocort.  She has been on Entocort 9 mg for 4 1/2 months now.  Even though the cal pro went up the GI is asking her to taper Entocort and I have a feeling the elevated glucose could be the reason.


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## Maya142

I would also guess it's the Entocort. She's been on steroids so much that I would honestly consider seeing an endocrinologist and letting them supervise the taper. Of course, since getting her to even see her GI is so hard, I understand it might be very difficult for a very busy college student!!

Glad she is enjoying her spring break - fingers and toes crossed that insurance will approve the very high dose of Entyvio, because it seems to be helping her a lot!


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## crohnsinct

Update time: 

While O was on spring break the Cover news got more serious.  Our area had about 50 cases.  The beach none and none in her school's state.  By Friday of break, the school announced they were moving to online classes and shutting dorms.  The girls had driven to the beach and her friend lives near there so she just went home, leaving O stranded.  We flew her back to school. Only a two hour flight but we were still nervous.  

Then we had to decide what to do with her.  Leave her at her off campus apartment, by herself, in a rural are that had no cases or put her on a shuttle bus ride two hours to sit in the country's busiest airport for 2 hours and then an almost 7 hour flight home to come home to a hotbed of Covid activity.  I had thought I had the flu the week prior but got tested and it came out negative.  My PCP said I very well could have had Covid but there were (and still aren't) any tests available so since I was getting better I was fine BUT do we bring O home to this?  

In the end, we decided to bring her home.  We were concerned that eventually air travel would become harder, her getting food and supplies would be rough and being all alone 24/7 for at least 3 weeks would take it's toll.  Add to it the fact that her IBD isn't under great control and in case of a flare her small regional hospital doesn't have a GI, it was better to bring her home.  

In the meanwhile, T's schools closed and went to online learning until after Easter break (I suspect they won't go back).  O landed last Monday just in time for the San Francisco area "shelter in place" orders.  

She is doing fine.  Been home a week and no Covid signs.  The whole family has stayed home as much as possible but hubs and I are essential workers so we each have to go in about 2 days a week.  I work with the homeless which brings a whole other level of concern.  

As far as her IBD goes, things aren't good.  Her frequency is inching up...at about 8-9 now, she is waking at night at least once and often 2 or 3 and she is bleeding consistently and a good amount.  No formed BM's.  Amazingly, she still has quite the appetite and her weight is stable.  But have to admit, this morning, noon and night and snack SCD cooking with limited availability of food is starting to take it's toll on me! 

Last Wednesday she checked in with GI and while he agreed blood wasn't good he told her to hold steady on therapy plan for now.  SCD 100% strict compliance, 600 mg Entyvio Q4 and 9mg Entocort MWF.  

This is for a few reasons.  First - the children's hospital is basically shut down and only taking urgent cases.  They are using a number of floors for the adult overflow from the hospital next door.  No procedures unless urgent, no clinic visits etc.  The hospitals around here are starting to call all specialists in to handle triage and E.R. and ICU....even opthamologists...I hear.   Second - we are trying to keep her from an all out flare and needing more steroids which would leave her more susceptible to Covid complication should she get it.  Third - we can't switch therapy now as that would require steroid bridge (remember taco didn't work).  

So we are just trying to hold her together until this Covid thing blows over and then we will decide what to do from here.  Not the best plan.  Risking further flare.  Risking complications from ongoing low level inflammation.  But what are our choices.  

Her college has decided to move to online for the remainder of the semester.  Her lease is up in July.  Hopefully by then, we could get out of the house and fly down and get her out of her apartment and into a storage unit.  We will then drive her car home.


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## crohnsinct

Oh yeah and for those of you wondering if O was one of those spring breakers you saw on TV the answer is no.  She was there the week prior and the trip was her friend's 21st birthday gift from her parents (although the other two girls paid their own way).  She picked a VERY expensive and upscale hotel.  So no college kids there.  The three girls basically sat by the pool and on the beach with very few other people.  They did go to the world famous nightclub at the resort one night but the very next night all the bars and clubs shut down.  I was never so happy that my daughter's plans got ruined. They were able to go out to restaurants but again they were very upscale and so pretty good space between tables etc.  I was actually way more worried about her packed flight home because while she flew right after the panic started it was after the airlines started consolidating service so she missed that "the flights are empty" period.


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## crohnsinct

Today was update the GI day.  Seems he is now thinking she might have bile acid diarrhea.  So he is asking her to do a course of cholestyramine. 

I have thought in the past that she might have this but not since last year.  Plus even if she does have it, her Crohn's probably caused it.  I am getting frustrated.  I would have preferred we bring her Entocort back to daily to see if that helped first.  BUT if this drug helps then I am going to ask if we can stop SCD.  Higher fat diets are bad for Bile Acid Diarrhea.


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## Tesscorm

Wow, I'm so sorry you and O are dealing with so much.  It's exhausting just reading it!  And, you're right, for most of O's situation, it may not be ideal but what can you do now??  

And, on top of it, you help the homeless?!?  Wow.  But, don't run yourself down...  everyone's counting on you for help.  Take care of yourself too!


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## Delta_hippo

Just wondering if digestive bitters would help at all with absorbing or tweaking the diet to include something like rice or oats rather than back to full normal diet - just makes me anxious because she initially responded so well to scd feel diet must be relevant for her.  It’s so hard.  At least she is safely home now and has got you to help her with all this


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## crohnsinct

Hmmm I am not sure.  Are the digestive bitters rice and oats?  They are the first things you introduce on a modified SCD Diet so maybe although if the GI is right and it is Bile Acid causing the problem maybe not.  But you are right!  After all this hard work, rather than throw the baby out with the bath water, maybe tried modified diet first. 

I am actually not really sure the SCD diet should get all the credit for her turnaround.  Only because it was after we added Entocort and also the turn around happened at about the 12-14 week mark after we increased her Entyvio to 600mg.  So it really could have been any one of the three things or a combo of any of them.  It is just seems like more than coincidence that her uptick in frequency and bleeding happened a week or so after reducing Entocort to a MWF schedule.  

The pharmacy is out of stock on the cholestyramine so we have to wait to see.


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## xmdmom

Exactly my thought re:increased frequently coincidental with decreasing entocort.
Bleeding wouldn't be caused by bile acid diarrhea, would it, so is the GI thinking there's ongoing inflammation and also bile acid diarrhea?


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## Jo-mom

My son really reacted when he cut down Entocort from 6mg to 3mg every day.  It took awhile for his body to adjust but there was a difference, so it really could be that.  I find it weird still that he didn't drop it to 6mg everyday as opposed to 9mg 3 x a week.  But what do I know...


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## pdx

crohnsinct said:


> So we are just trying to hold her together until this Covid thing blows over and then we will decide what to do from here.  Not the best plan.  Risking further flare.  Risking complications from ongoing low level inflammation.  But what are our choices.


Really glad that she was able to get home! 

If O's symptoms continue at the same level, this might be a good time to reconsider EEN, either oral or through a tube. It would be so much easier than SCD (for her and you!), and so much safer than prednisone right now. She might be willing to consider a tube since she's just going to be home--that makes everything about it a lot easier.


----------



## crohnsinct

@xmdmom I think he is really just stabbing at any and everything it could be at this point because the next step would be surgery (although we aren't 100% onboard with that next step just yet).  His exact words were, "I would like to see if some of your diarrhea is from bile-acid driven pathway (vs the Crohn’s inflammation pathway)".  So maybe he is just thinking it is a part of it.  But honestly with the bleeding and the uptick right after the Entocort drop I just don't know.  As you know, she has been fighting this IBS dx for 4 years now.  I thought last spring and summer this guy would have put that to bed.  Especially with her calpro increasing.  Remember it had gone down to 73 and even before he dropped the Entocort dose it increased to 232.  He decreased her Entocort anyway given the impending doom.  I don't know a lot about this new drug but am wondering if it is so good at handling diarrhea that it would calm even IBD diarrhea.  I don't imagine that it would heal a bleeding rectum though.  There are warning about using it if you have diabetes.  She doesn't actually have diabetes but given what we went through...I am concerned a little. 

@Jo-mom I think for L it worked out because he was using Entocort at dx as a bridge until Remicade kicked in. So while he decreased his Entocort and had a blip the Remicade was still doing it's thing.  O is at the one year mark with Entyvio and 5 months at the 600mg dose...  I don't think we can expect much more from this drug.  

@pdx Great idea!  I was actually thinking the same a bit ago but forgot about that.  Having people see her with a tube isn't her concern.  It is the actual getting it down that freaks her out...along with giving up food.  She is a tough kid and accomplishes the impossible but when something silly is a road block for her it REALLY is a road block.  But as I have been saying a lot lately, "desperate times, desperate measures" and I totally agree with you it is better than steroids!  Might also be a more palatable test (as opposed to this drug with nasty side effects) to see if the diarrhea is due to Crohn's or some other cause.


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## Maya142

Bile acid diarrhea...what is that? I ask for your O, but also for my daughter who had an eventful week of non-stop diarrhea and severe abdominal pain and has gallbladder tests scheduled!

I'm sorry to hear O had to go home, but I'm so glad she did!! COVID is now so widespread I hear that even domestic flights might be difficult. My daughter also came home - I am SO glad because her school is in one the hardest hit areas of the country.

I think EEN would be a great idea. Would she consider drinking shakes, if not the tube? I don't think they would want to pull her in for elective surgery during COVID, so a tube would probably be an NG tube. It makes sense and it might be worth talking about. It would only be temporary - just until it's safe for her to have the G tube surgery. I don't know if they do this for kids, but sometimes it's done as an outpatient surgery for adults. I don't know if it would be safe for her though - given her history of severe disease and sudden sepsis, they'd probably want to monitor her closely. My daughter was inpatient 2 or 3 days...I honestly can't remember how long. M was kept due to pain and to watch for Refeeding Syndrome, since she'd had it before. Actually, O might need that too...hmmm. I wonder if they could monitor her at home? Maybe with a home health nurse? 

I wonder if she could talk to a psychologist about the NG tube - help her get over the fear of having one. It would be safer than surgery at this point. Is it possible for her to see a GI psychologist - like for telehealth visits? My daughter has had several teleHealth visits recently and they have worked well. It's harder with a therapist (especially as a new patient) but considering COVID, we're kind of in an unprecedented, extreme situation right now!


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## crohnsinct

Thanks Maya.  

She is actually holding steady right now.  Flare isn't getting worse and she isn't losing too much weight.  So I think EEN would be a hard sell to both her and the GI.  I think he would want to see the results of the bile acid trial first.  

Bile Acid Diarrhea happens when there is too much bile acid in the digestive tract.  I am willing to bet that M has that or SIBO.  I know she tried the SIBO drugs but honestly she has ALL the symptoms (especially the abdomen pain) and she has the conditions (IBD and gastroparesis) and takes all the meds (PPI etc) that lead to SIBO.  She tried the meds without the diet and from everything I read doing both is really how you solve it BUT I understand that diet manipulation with M is especially difficult so I have no idea how you might accomplish this.  I have also read that for a lot of people it takes more than one try with the drugs.   SIBO can also be a cause of BAM. 

Bile Acid Diarrhea is more common with IBS and I think you told me once she has IBS so I definitely think it is worth investigating for her.  Fair warning though, the drug is a powder that you dissolve in 4-6 ounces of water and drink.  O says it is disgusting but I bet M could drink it.  My only concern would be it sitting in her stomach too long.  Also, a common side effect is nausea and O got it.  She was able to lay down for about an hour and it passed but I  know M has nausea a lot anyway so this might make it worse.  BUT if it fixes the diarrhea then might be worth it.  

When is her gallbladder test scheduled?  I hope she doesn't have to go back to where her school is.


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## Maya142

M has actually been on cholestyramine (Questran) before - for a clean-out of an arthritis drug that was causing severe side effects. It was a long time ago though - long before she had a tube. She hated it - said it was gross and made her nauseous! That was only for 3 days though. Anyway, now if it were prescribed, it would go through her G tube...since she has that, no need to drink anything she doesn't want to ! Her diet is extremely limited right now because of stomach pain. She's mostly on tube feeds.

Testing not scheduled yet but speaking to her GI tomorrow. 

Since O is home, she could insert the tube and leave it in...so inserting it and pulling it out every morning isn't really necessary. Once it's in, she'll get used to it within a few days. So you'd just have to convince her to insert it once. It's a tiny, thin flexible tube - like spaghetti. She could also do 80%/20% to make it easier. 80% formula, 20% SCD approved food (or even just regular healthy food), so it's a bit easier on her - that way she can eat some food but formula would calm down some of he inflammation in her GI tract (and would probably help even more than the SCD has already helped her). She could go back to the SCD later, once things have calmed down. I can understand not wanting to make any huge changes (like switching or adding a med) during this time - with COVID, you don't want her ending up in the hospital if things don't go well. But formula can't hurt and should help...

Would she consider drinking formula? Though actually, if her GI is ok with doing the G-tube surgery outpatient, then you may even be able to do that. That way she could cycle EEN (or 80/20% EN) until we have a longer term fix for the inflammation.


----------



## crohnsinct

I definitely think she would do the g tube as her and GI discussed it over the summer.  I also think rather than have a colectomy she would drink formula.  But at this point, I don't think the GI is 100% convinced what is happening is due to inflammation as he is barking up the bile acid tree.  Yes, even though she is bleeding and BAM doesn't have bleeding as a symptom.  

This is four years running with this and we are still fighting the IBS/SIBO/Bile Acid/it's something other than IBD fight.  I really thought that last spring when he had her scoped to show us it was IBS and the scoping doctor said she was a mess and told us he was going right away to tell him so...and...then she ended up in the hospital less than a week later needing a transfusion...and...They let her go to school and a week later she started the sepsis, hospitalization adventure....You would think they would take it a little more seriously.  I feel like I am in a crowded room screaming and no one can hear me.  

The good news is she is doing rather well considering.  Cheerful, still has her color, wheels aren't falling off.  So I will be patient.


----------



## crohnsinct

Well hearing that M had a rough time with this drug made O feel a lot better.  So far one day down.  GI said we will give it 3-4 days and assess.  

Things are getting slightly worse.  Still not tanking so that is good.  She is supposed to have infusion on Monday but with the transfer of care back to CA the home infusion agency had to get another authorization.  So we are thinking Friday at the earliest but likely early next week.  They happen to have an infusion center nearby so she is going to go there rather than have T's infusion nurse come here.  T's nurse is an E.R. nurse as is her husband and both have been caring for Covid patients.  Her nurse said it wouldn't be a good idea to have her come to our home.  They even sent their 1 year old daughter to live with relatives until this all passes.  

I am not even joking but we are running low on toilet paper.  I happened to buy a huge package before I even knew O was coming home but since then can't find any and now that she is here well.....

I can't even get any from my janitorial supplier for the shelter.  I have the shelter residents using napkins and even those are scarce.


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## Maya142

Oh geez! That's not good. Can you find them online? Could you find flushable wipes? Or even baby wipes in each bathroom (and a trash can for them!). Or tissues, I guess.

Yikes! Running out of toilet paper truly scares me.

I'm glad to hear O feels better hearing that her side effects are (unfortunately) normal. M suggested to talk to her about a tube (either a G or an NG) right after she's taken Questran . She said after drinking that, anyone would be pro-tube!

It seems like a big step (or it did to us at the time), but it honestly wasn't bad at all. A few days of pain meds and after that M was ok. The hardest part for her was the infections which forced her to stop swimming, and the inability to sleep on her stomach, which increased joint pain. But infections really aren't that common, I think she was unlucky. She's actually had absolutely no infections of her G tube site since then. I think it was just that she healed slowly...

The J tube surgery was much, much, MUCH harder than the G tube, For the G tube, it was very quick. For adults, they sometimes even use Propofol or conscious sedation instead of anesthesia! M says she would never have done it without anesthesia though (honestly, I'm not sure I would either, although I know O has nerves of steel!).

I don't think pain management will be a problem - they'll likely give her a pain med for a few days. I think the hardest part of doing it outpatient is the worry of Refeeding syndrome. Do you know what her pre-albumin is? Or her albumin? Are they worried that she's extremely malnourished or is she sort of stable on the SCD?


----------



## crohnsinct

Flushable and non flushable wipes are equally as hard to come by.  I came across baby wipes one day and the store limited purchases to 1 pack per customer.  ARGH!  

Well if O talks to M about the G tune let's leave out the part about not being allowed to swim with the infection. I actually think that might be a realistic way to go because O and the GI discussed it back in August.  Her weight is pretty stable now.  She bounces between 119 and 121...which would be 117 and 119 on GI's scale.  So while not a great weight, she isn't losing rapidly like last year.  

Two days on that med and it hasn't done anything.  GI said 3-4 days and O said that if at the end of tomorrow things don't change, in her Wednesday update she is going to tell him she wants off.  

Her Albumin was a smudge low but nothing to worrisome.  We may have a skewed view of worrisome but I really think her last blood labs were o.k.. She will get another set of labs right before her next infusion which actually looks like it will be Wednesday...right on time!


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## crohnsinct

Well now it looks like she may have episcleritis not a doctor but that's what it looks like to me.  I thought maybe conjunctivitis but she has literally not been out of the house for 2 1/2 weeks.  No one else in the house has it and the redness is confined to her eye, no discharge or anything else typical of conjunctivitis.  I guess it could just be run of the mill blood shot to.  

Cholestyramine trial is going nowhere fast.


----------



## my little penguin

Ugh
Ds has had that one too many times 
Steriod eyes drops 
Unfortunately you need an ophthalmologist appt ASAP since it can progress


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## crohnsinct

She wants to wait and see if it goes away tomorrow.  If it is still here, will include it in weekly update.  

Isn't it fun having "adult" kids.


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## Maya142

Ah, I love "adult kids" (I really wish we still had the emoji that was banging its head against a brick wall repeatedly because that is what I feel like doing!!!) . Mine wants off steroids ASAP, despite nearly going into an adrenal crisis which caused an admission last week .Thankfully, she hasn't forgotten the experience of being admitted during the COVID pandemic, so she is taking them (grudgingly).

I agree that you definitely want to see a pediatric ophthalmologist because it may be episcleritis, but it could also be iritis (acute anterior uveitis - common in AS and psoriatic arthritis patients - I would guess psoriasis patients too) or scleritis, which are more serious. Does she have photophobia or any eye pain or irritation? 

It is also allergy season, so that might another possibility. But you really can't know without someone seeing her! I know both my daughters have been complaining of itchy eyes and other allergy symptoms. M has been put on Zyrtec daily and was given eye drops (that are OTC) for seasonal allergies.

I'm so glad she is home - hopefully now you can work on REALLY getting her IBD under good control. She's managing right now, I know, but she shouldn't have to live like this. My (non-doctor) guess is that her diarrhea is inflammatory, given the bleeding and history of severe Crohn's!! I just hope he has a plan B in place for when the bile salt diarrhea med does not work. Maybe a second biologic?


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## Tesscorm

We never did get a definitive on that weird infection S had in the summer but red eyes, including red eyelid (near lashes), very minimal discharge (but there was a bit in the morning) and sensitivity to light...  I don't remember how long exactly it lasted but definitely for a few weeks...  (this was when we were told possible adenovirus or reactive arthritis).

Just FYI...  maybe something else ties into some of her symptoms??









						Reactive arthritis - Symptoms and causes
					






					www.mayoclinic.org
				











						Adenovirus Infection Symptoms, Treatment & Outbreaks
					

Different adenoviruses can cause various types of infections ranging from acute respiratory disease and conjunctivitis (types 3, 4, and 7), gastroenteritis (types 40, 41), and keratoconjunctivitis (types 8, 19, 37, 53, 54). Read about adenovirus infection symptoms, treatment, and prevention.




					www.emedicinehealth.com


----------



## crohnsinct

No photophobia, pain or irritation.  Just so happens that Uveitis could be a side effect of the drug she is on now so I think if she still has it today I will strongly suggest she mention it to the GI.  

But there is another thing happening that is puzzling.  I posted o the adult forum because I figure they have more experience with cholestyramine but every time I post there, I get no response so if any of you are interested and might have a suggestion you can check it out here. https://crohnsforum.com/threads/cholestyramine-and-white-clumps.85664/


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## crohnsinct

Update went in to the GI and he doesn't want to change anything right now because of the pandemic but will wait to see what labs look like. 

He has told her it is o.k. to stop cholestyramine.  So we will see if those mysterious white clumps keep showing up.


----------



## crohnsinct

Blood labs came back.  All except liver are within normal.  CRP is creeping up and just within normal and up until they recently raised the normal range it would ave been elevated.  

She was dehydrated so that could explain the normal H&H but still.  

Liver numbers are elevated but I am putting that down to diet and the recent cholestyramine use.  

So we wait for cal pro.


----------



## Jo-mom

What were the liver numbers like?


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## crohnsinct

AST is slightly elevated and ALT is about double.  Not too bad.  We have a history of bad livers in our family so I watch those numbers.  Not too concerned given she had just been on three days of that new med AND she is eating a VERY high fat diet so it could just be the beginning of fatty liver.  

I am quitting Crohn's...AGAIN!  Figure if her numbers are this good and she can deal with what is going on and GI isn't concerned, then I will just chill.  They will both let me know when they need me.


----------



## Jo-mom

You will never quit crohn's! Hug.


----------



## crohnsinct

So GI wrote to Olivia.  He is concerned about the liver numbers and just wants her to get them checked again in a month, which is when her infusion is anyway so not really doing anything we wouldn't do anyway. Just thought I would update y'all cuz while I have quit Crohn's pretty sure you guys haven't


----------



## my little penguin

Glad they are monitoring the liver numbers at least


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## crohnsinct

LOL!  GI wrote to O saying, "between you and I did you drink the night before your labs". Ummmm our entire state is in shelter in place orders so unless we were throwing a family kegger than no. And if we were drinking at home then no need for the between you and me.  She doesn't generally drink anyway AND no there isn't anything she can really drink on SCD anyway!


----------



## crohnsinct

For those of you still playing the Crohn's game.  Cal pro is 563.


----------



## my little penguin

So she does have more inflammation and needs steriods


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## crohnsinct

Knew it was just a matter of time before something like this popped up. Posting it here given the discussion about O's glucose readings. 

https://www.cghjournal.org/article/S1542-3565(19)30841-9/fulltext#.Xo_SjOvXhIQ.twitter


----------



## Jo-mom

Good information.  I thought you quit Crohn's?


----------



## crohnsinct

LMAO!  I quit Crohn’s but it didn’t quit me!  It is like a jilted lover.  It just keeps finding me.  I got that study in Twitter.


----------



## crohnsinct

UGH!  I am trying tasty away but dang if Crohn's just keeps dragging me back in.  

Remember those white clumps I spoke of last week.  Well, last Wednesday (the day she stopped cholestyramine) they started going away and the next day all gone.  So I assumed it was the drug.  BUT she also got her infusion that day.  Today, they are back!  Not as bad but getting worse.  What the heck is this stuff?


----------



## crohnsinct

O had a follow up with GI today via Telehealth.  I have to hand it to this guy, he is really trying to honor her wishes to avoid surgery.  So here are the bullet points:

- that 73 cal pro he feels was really just some left over benefit of her previous prednisone use
- He feels that her terminal ileum is still an active site for disease but also that she carries a significant colonic disease burden
- doesn't like the cal pro trend
- he wants to add Humira.  Feels that if we suppress the amount of tnf produced (Humira) and then also suppress the ability to cause damage of the tnf that survives (Entyvio) that we might just have a shot at controlling her disease.
- was thinking of bringing her Entyvio back up to 9 mg daily (as opposed to the 3 day a week dosing) but would like her to try EEN as the Humira/Entyvio combo is strong but he doesn't know if it is strong enough to take over the disease that she has.  Would like to give it the best fighting chance that it could have and healing the mucosa with EEN will do that.  The alternative was to increase Entocort and add Humira and if it still didn't fix things then add EEN.  O chose to add it from the beginning (she doesn't want to delay things as if she needs the surgery she wants to do it sooner rather than later to give herself time to heal and adjust) BUT wants to wait until after finals.  That was fair enough.  She is already on SCD and that is more than enough with all the stress of the last week of classes and preparing for finals. He said we will know by two weeks into EEN if it is helping and if it isn't she can drop it.  He feels it is a really good shot to take but cautions us that with her heavy colonic disease and lack of response to SCD,  it is likely only to fix her TI disease and might not even help there given SCD isn't helping much there.
- he wants her to stay on strict SCD for now

So he is submitting to insurance for Humira approval and she will start EEN early May. 

She is meeting with registered dietician later this afternoon to see if there is any way we are falling short on SCD and if there are any tweaks we could make to help there.

GI o.k.'d putting off meeting with surgeon until after she has been on Humira for a few weeks. 

Rechecking LFT's early May and if those are still elevated, we will have to reassess the whole plan.


----------



## crohnsinct

P.S. We are keeping Entyvio 600mg/Q4. 

I would like to be a fly on the wall when insurance gets the new plan 

The thing we have going for us is that Entyvio goes through medical approval because it is an infusion.  Humira goes through pharmacy.  So maybe if the two sides don't talk to one another we could fly in under the radar.


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## crohnsinct

argh!  P.P.S.  He also did say that in his opinion by the time we receive approval for the Humira we won't need to be as concerned about immune suppression (even though there isn't a lot of concern surrounding the anti tifs to begin with) as the worst of things would be over, especially in our area.


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## pdx

Sounds like a good plan! Hope her finals go well too.


----------



## my little penguin

Hugs
You can get two biologics approved 
Tricky but doable


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## crohnsinct

Yeah I really think we can also.  We are going to try through the GI so he has total control.  If that doesn't work the dermatologist said she would like to try Humira for her psoriasis so if GI gets denial, he will ask derm to try to get it.  I am not quite sure what doing he is going for BUT if he goes for the standard her Entyvio is already costing almost $60k a month and then add the Humira twice a month minimum....if they catch it they may balk.


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## my little penguin

Understand humira dosing for psoriasis is MUCH MUCH lower than Crohn’s


----------



## crohnsinct

Yeah...that is why GI wants it to go under him so he can control frequency and dosing.


----------



## Tesscorm

I'm glad you have a plan but I'm sorry that it's become necessary to use many treatments.  But, yes, preferable to surgery.  I'm really hoping this does it for her!!


----------



## crohnsinct

O's Humira has been approved!  

I have a good feeling about this!  Well not about the way we are forced to clobber this beast to death and the mega loads of drugs my daughter is on but good that this is the step that will work! 

Wouldn't it be great if it also cleared her psoriasis?!


----------



## Jo-mom

Yippee yay!  I have a good feeling about this too.  Fingers and toes crossed.


----------



## my little penguin

woohoo!!! Great news !


----------



## Maya142

> The thing we have going for us is that Entyvio goes through medical approval because it is an infusion. Humira goes through pharmacy. So maybe if the two sides don't talk to one another we could fly in under the radar.


My kiddo was on an injectable biologic for her arthritis when we added Entyvio. Because Entyvio went through the medical side, it went through within weeks. In my kiddo's case, one biologic was prescribed by her rheumatologist for her AS and of course the Entyvio was prescribed by her GI for IBD. 

When we tried getting two biologics through the pharmacy side, with Humira and her second biologic for arthritis, that failed despite multiple appeals. We had to resort to home injections administered by a home healthcare nurse (which goes through medical as it is billed as an infusion for reasons I don't understand) and the other biologic going through the pharmacy side. It's definitely MUCH easier if one goes through the medical side and the other through pharmacy. I'm SO glad her Humira was approved so quickly - she needs it. 

My kiddo has been on 2 biologics for 3 years now and it's been the best thing for her. She is on two biologics and MTX and still manages to have active disease, much to her doctors' dismay. But I hope very much it will be different for O!!! Really sorry to hear her FCP crept back up but not surprised unfortunately.

For EEN, is she planning on drinking the shakes or using a tube? From your post it sounds she will be drinking the formula. 

As for surgery, does her GI say it's the next step if Humira and Entyvio fail? How is O handling all this?


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## crohnsinct

Loading dose of Humira done today!  Roll on remission!  

Maya - she is planning to drink Boost/Ensure/etc.  

With double dose Entyvio, Humira, Entocort and EEN, we are pretty much clobbering this beast.  No one has actually said what the next step is but the hint in the room was surgery.   

She is handling all this fine.  Not happy about EEN but likes that better than colectomy.  She is a funny sort.  She doesn't like to think about next steps and what ifs.  She also is pretty much defying her body not to comply.  She started asking me on the way to the GI today, "what if my body rejects Humira" and quickly said, "never mind, that isn't going to happen.  Humor is going to work.  Monday, my poop will be solid for the first time in 4 1/2 years, I will only be going twice a day and my fecal cal on Wednesday will be totally normal.  Then GI will say Humor word so well that I don't have to do EEN".   Ummm yeah...o.k..  I guess it is possible.


----------



## crohnsinct

Quick update. 

Not a lot has changed.  Frequency and bleeding went up but she had her infusion on Wednesday and things have calmed down a bit.  No signs of normalcy or remission yet. 

Labs came back "overall good".  Liver numbers back in range.  H&H are good but she was dehydrated so those could be artificially high. 

Calpro came back down 80 points at 480. 

CRP inching up and just went a little over normal. She usually runs pretty low unless she is in a horrible flare so watching this one. 

She is supposed to start EEN on Monday but is dragging her feet on finding a formula she likes and sounds like she is changing her mind.

She took her last final and looks like another 4.0 semester so she is a very happy girl.


----------



## crohnsinct

Forgot to say that her weight is up about 4 pounds since she got home.  Part of it is eating like crazy but most of the weight has been gained in the last week and she started that Chloe Ting 2 Week Shred workout so maybe some of that gain is muscle.  Either way you cut it that is good news because you have to be nourished in order to make muscle.  Also have to be nourished in order to get through the workouts.


----------



## crohnsinct

So the 4.0 is confirmed.  yay but boo....This means I sorta have a smart kid.  She came to me today and said she would rather not add EEN at this time because too many changes in therapy and if things get better we won't know which thing (Humira or EEN) are fixing things.  dang!  I hate when they pay attention all those years.

I am actually fine with this except, I am really anxious to see some improvement and really don't care where it comes from.


----------



## crohnsinct

Hey y'all.  Quick update.  Almost two weeks after first loading dose of Humira, and 9 days after her last Entyvio infusion, O was going up to 16 times a day and bleeding.  One time a hat full of nothing but blood.  She felt really icky, had a headache, on and off nausea and abdominal pain.  

Had second loading dose of Humira. 

GI had us pull labs, blood, c diff, general stool studies.  He was concerned about anemia or dehydration. Increased Entocort back to 9 mg daily.

C diff negative. 

Blood labs are all within range.  H&H are best they have ever been.  Albumin spot on.  No signs of dehydration.  Just CRP is up to 18mg/l.  Up from 11 four weeks ago. Not earth shattering but also not trending in the right direction.  

Frequency and bleeding are back down, seems abdominal pain, headaches and nausea are also going. I am assuming Entocort is helping there.  

No clue what this all means.  She has an appointment with him next Friday.  Stay tuned.


----------



## crohnsinct

Had our appointment on Friday.

GI is wondering if we should keep Humira on board because we are putting a lot of drug into her body with very little return.  Thinks we should give it another bit as she only just had her third dose on Friday.  Said that generally speaking Abbvie (the makers of Humor) say that if you are not responding within 6 weeks you will likely not be responder.  But yes, he has in his experience seen that some people will still respond after the 6 week mark.

Given the fact that she had stopped bleeding, stopped seeing mucus, has no night waking and has gained weight, he feels she is in clinical remission.

Yes, she is still going 7-8 times a day, still all liquid or mush and still on Entocort which I think is the main driver of the other improvements so I am not as sure as he is about this clinical remission but I am playing along nicely.

He is concerned that her CRP and ALT is elevated and says that shows him there is inflammation in her blood.  Wants to continue to watch that and fecal cal as her cal pro has been around 500's.

He feels that there is still an "irritable" component to her colon.  He wants her to try Imodium for a while when she knows she won't have easy access to a bathroom and see if that helps.  He said we have to retrain her bowel.  Said it is used to letting everything go the minutes it feels anything so maybe we can use Imodium to slow things down and retrain the bowel. She has used it two days so far.  One day no luck but she took it right before she left the house.  The next day she took it an hour before and it seems like it worked.

Today has been a relatively calm day (she is mostly in bed on her computer enjoying a lazy day) except we saw some blood.  Waiting that out to see if it is a trend or not.

Have a great weekend everyone!


----------



## crohnsinct

Update time.

Last Wednesday O had her infusion which also means labs.  CRP is back down to 8 so normal.  H&H are down a little but still within normal and higher than she usually runs.  WBC was low.  I was thinking maybe Humira caused that because she did constantly have low WBC with Methotrexate. 

Cal pro returned over the weekend.  1,125.  He emailed her saying he wanted to discuss labs. 

He said that he has been watching her WBC.  It was normal but on the very low side last infusion and now dropped quite a bit under the cut off.  Watching neutrophils and those are lower now also.  Now with a big jump in fecal cal protectin (460's to over 1000) he is wondering if she might have CMV.  You might recall that she tested positive for mono last summer, even with little to no symptoms. When she was admitted later that summer they all poo poo'd that result saying there is a high false positive with that test and she didn't have mono but GI believes the test.  CMV is apparently related to mono so he is back to wondering if she has CMV (you might remember earlier this summer he was wondering the same).  He said his suspicion is very high for CMV especially given the jump in fecal cal with no increase in her bleeding. 

He requested a CMV blood test but said those have a 50% false negative rate and that biopsy during scope is the definitive answer.  But if it comes back positive then we know for sure and will treat the CMV with is a 21 day course. 

If it comes back negative, then our choice is treat for CMV (he said little risk) anyway or just scope to test for CMV and see what else is going on. 

My concern is that she is going to school in the end of July and a three week course of CMV treatment if it doesn't work will just delay things if we need to go to scopes and then do EEN or move to surgery.  He said we should know in a week to week and half if the treatment is working and then can make decisions. 

I am inclined to go straight to scopes if the test comes up negative.  I am tired of all the "maybe this" maybe that".  But she is 20 and it is her decision and she would have to do the clean out etc. 

We talk wit GI again on Wednesday....stay tuned.


----------



## my little penguin

My vote scopes now 
Either way definitive for crohns or cmv 
One test 
Two rocks 
No waiting


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## Delta_hippo

Makes sense but also scopes are a miserable way to spend time.

If she has CMV makes me wonder if adding the humira has stopped her body being able to keep it under control.  In which case I don’t know if stelara would be a safer add on to the entyvio?
What a frigging nightmare for her.  I’m so impressed with how she copes.
The other idea but it’s a massive stretch is to get in touch with the folks in Canada doing the qu biologics ssi stuff - a totally different approach.  It’s all very new but from what I’ve read they have a sense already that certain genetic profiles  are more or less likely to respond.  In an ideal world, could they look at her blood to get an idea if she would respond and if so allow compassionate use?  They’re supposed to be doing more trials but doubtless all on hold due to the virus.


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## crohnsinct

Just got message from GI.  Her labs are reassuring.  WBC is backup to 4.7 from 2.7 and neutrophils are back up to 3 from 1.1.  He said let's wait and see what CMV test says but then says he sent in the script for the anti viral but wait to pick it up.....she hasn't agreed to take it yet!


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## Maya142

Honestly, I agree, I would definitely want her scoped considering her FCP jumped up so suddenly. It could be CMV. But it could also be the beginning of another flare -- I know,  that's exactly what you don't want to hear! But it's a possibility. She has incredibly stubborn disease. Have they ever considered sending her to an immunologist for genetic testing? My daughter's GI mentioned this for her, but not because she has incredibly stubborn Crohn's, of course. But she does have incredibly stubborn arthritis that is incredibly treatment resistant. Her GI told us about a patient she had who was like  O and M - he had very refractory disease, had tried multiple biologics and failed them and nothing they did could control the inflammation. He was headed for an ostomy I believe...or he may have had one done recently - I can't remember. Regardless, when he saw the immunologist, the doctor found that he had a mutation of a certain gene, NOD2 and recommended a biologic that is used to block IL-1, like Kineret, which is typically used for rare autoinflammatory diseases. It worked like magic for him. His is a rare case, but M's GI wanted her to see an immunologist for a consult because of such refractory disease,


> Given the fact that she had stopped bleeding, stopped seeing mucus, has no night waking and has gained weight, he feels she is in clinical remission.
> 
> Yes, she is still going 7-8 times a day, still all liquid or mush and still on Entocort which I think is the main driver of the other improvements so I am not as sure as he is about this clinical remission but I am playing along nicely.


I really am just so confused by your GI! He jumps from really severe disease and really, REALLY severe, refractory inflammation one minute to clinical remission and "this is functional" every other! I know O doesn't want an ostomy and i do think it's great that he is leaving no stone unturned before going to an ostomy. But this seems a little extreme. Clinical remission when she had a hat full of blood? That doesn't sound like clinical remission! I do understand other markers improved - CRP and hemoglobin etc. But I would argue O is very far away from clinical remission. Not meant as a criticism - I guess I'm just confused. 

To me it seems very apparent that she has really severe and stubborn inflammation! I would have said that she seemed to have improved somewhat due to the Entocort and Humira, which would explain her CRP being normal and improvement of several other lab results (H&H etc), if the FCP hadn't come back so high and would have been cautiously optimistic it was just a blip. Actually, I'm still hoping it's just a blip or an infection and NOT a sign of worsening inflammation.

But I do think scopes make sense - to test for CMV and just to see where her disease is present and how bad, given the huge fluctuations in her FCP. It makes sense to see if she has it first before throwing another med at her. 

O is an incredible trooper and you're an incredible advocate for her. I'm hoping that she will start feeling  a whole lot better SOON.


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## crohnsinct

CMV test posted Friday a.m.  Negative.  

We haven't heard from GI yet.  O wrote him an email telling him she took her Humira yesterday and that she would like to do a colonoscopy for a definitive answer on the CMV question before taking the drug.  

She is same old.  Weight stable, very little visible blood, no night waking.  Going 7-8 times a day, urgency and all liquid or mush. 

Ohhhh the suspense of it all.  

Interestingly, her psoriasis is the worst it has ever been.  The derm here said she thought it wasn't caused by anti tif therapy but now with O restarting anti tif therapy and it getting worse I am back to being suspect of anti tnf.  It is so, so bad.  I guess it could be a rebound reaction from stopping steroids.  Can't help but wonder if Stelara is our next stop and if that drug will finally fix her psoriasis.


----------



## Jo-mom

Holy shite - when will it ever end for that poor girl!


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## my little penguin

Hugs to you and her !!!
Wow


----------



## polly13

Hugs , she is a great girl.  Agree think anti tnf  is not helping psoriasis.  Stelera seems to have great success with psoriasis


----------



## crohnsinct

Well I guess I angered the Crohn's gods by being too cocky over the severe decrease in blood because it is back.  Darn it. Weight also down 2.5 pounds....but I think that could be from a couple of days of light eating.  Going to really make sure she eats some big meals and has good snacks today and see what I can do.


----------



## crohnsinct

GI agreeed. Said at this point a colonoscopy is important for numerous reasons. It is scheduled for next Tuesday.  They won’t let me in the building. She just needs to get a Corona virus test beforehand and it is a new two day prep. Ick!
2 days before normal diet, drink 48 ounces with 6 capfuls if miralax by 12. Take 2 Ducolax. 
Day before clears repeat above.
Fun times!


----------



## my little penguin

Fingers crossed for answers


----------



## crohnsinct

Yeah. But if a rough day. She literally said,”well I hope after Tuesday they are able to figure this out and “this” stops happening”.
I asked her what options she thought the doc might have for her. She said,”IDK, switch meds again...but that means back in hospital or steroids” 

Yes, I did bring up surgery but she is 20 and invincible.


----------



## Maya142

Poor kiddo - well, I'm glad you can at least be with her for the prep. That's the hard part. My daughter is older (23) and has now had to do several hospitalizations and procedures herself, including scopes. She has no issues with scopes by herself (and I'm 100% sure O will be fine) but does still prefer that I'm there if she's hospitalized, since she's so complex.


----------



## crohnsinct

Yeah, O will actually be alone for prep because T has a softball tourney.  But she has prepped by herself before.  This will be the first scopes totally alone but really what do I do?  I sit there and help with boredom before while waiting to go in.  I help get her to the bathroom fast before and after.  The only thing I amorally needed for is the discussion with the scoping doc right after as she has trouble with anesthesia and can never really fully concentrate on the GI because cardio is in there with her.  I am hoping scoping doc will call me but worst case we will just here from GI what they found.


----------



## Maya142

Way to go O! Always a trooper. I do hope they'll call you with the results - she can request that.


----------



## crohnsinct

Scoping doc’s office called today.  He said to let me in. Said all other kids get a parent to come and they don’t have a protocol for calling and he knows ya from last scope and from when O was inpatient so he has a soft spot for us.

So yay! We like this guy and he isn’t shy about sharing his opinion.So I should have a nice update for y’all on Tuesday


----------



## Jo-mom

The Crohn gods are looking out for you.


----------



## my little penguin

Yipppeee!!!!
Dancing & wine 
Woooohooo!!!


----------



## Delta_hippo

Good luck for the scopes,  thinking of you both x


----------



## Maya142

So glad you can be with her. We will keep both of you in our thoughts!!!


----------



## crohnsinct

Hey guys!  The good news is we got some answers.  The bad news is we also got more questions.  

Colonoscopy went well.  The TI and a lot of the colon look a lot better.  The last 35 cm's still look really bad.  Rectum and sigmoid colon. Scoping doc sent our GI pics and they talked.  Our GI called while O was in recovery.  We have to have some hard conversations about how much more medical therapy we want to throw at this....benefit vs risk.  He said it is possibly time we admit this is refractory disease and consider surgery.  He referred to it as regional surgery now rather than total proctocolectomy.  

He said we still have to wait for the biopsies and CMV results to come back.  He will research medical options and speak with surgeon.  

By the time we got home he had spoken with surgeon and is setting up an expedited consult for us.  

So the issue is her rectum is severely diseased.  A resection will only work with a healthy functioning rectum.  So as far as I can tell it seems we are looking at removing the sigmoid and not reconnecting right away but doing a colostomy.  We will then wait for a while to see if the diversion helps the rectum heal.  If so, then we attempt a reconnect (they work in very few cases).  If that doesn't work revert back to colostomy.  If rectum doesn't heal, remove it and consider the colostomy permanent.  

Removing the sigmoid and connecting the descending colon to a diseased rectum isn't a viable option.  For starters the rectum is diseased but even if there were some small part that wasn't and we could remove the diseased rectal portion and connect to healthy rectum, colonic Crohn's loves to attack anastomosis sites.  

Who knows.  Maybe surgeon will surprise me.  

GI can research meds but the way I see it Humira, Entyvio, SCD and Entocort got quite a few areas healed up.  It would be a risk to switch meds.  We risk losing control over those sites while healing the 35 cm problem area or worse losing those sites in addition to the current problem area and also not necessarily being able to go back to two meds that are working. 

We could try to limp along like this until the newer JAK inhibitors or IL 23 drugs come out but it has been 4.5 years of this.  I think she deserves to feel better.  Plus no guarantees any of the will work.  Plus we want to control the narrative.  She is in a good place if surgery is needed.  If we limp along some more we risk another set back like last summer where surgery was a huge risk due to her health status.  

He has tried to get her into trials but either we can't take a risk of her getting placebo or no one will touch her.  

He put her back on rectal foam to get some relief.  Not a long term solution as it just treats the top layer and Crohn's goes all the way through. 

My question for both GI and surgeon is should we try to taper Entocort to see if that has an effect on the currently clear areas before we make any surgery decisions.  

So next step is information gathering.  Meet with surgeon then meet with GI and come up with a plan.  

She is down 4 pounds.  6 after prep but I don't count those two.  It was 4 before prepping started.  Hoping to get those pounds back on her.  GI said they won't even consider surgery under 120 pounds for her so just has to put on two pounds.  

That's it for now.  Will update you as the info rolls in.


----------



## Pilgrim

How is she taking this news and what does she want to do?


----------



## Jo-mom

Wow, that's a lot to take in but it is definitely good that you have answers.  O does deserve a break.  Ditto on the question - how is she handling all of this?


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## crohnsinct

O is an odd bird. When we talked about the surgery she basically said,”Oh o.k.  can I go back on foam also and let’s have ice cream for dinner I will go back on SCD tomorrow”.  

When we got home she was very matter of factly referring to surgery saying things to her sisters like,”when I have surgery” etc.  

But when I explained the possibility of a colostomy she said, “ I am NOT getting a bag!  My body my choice”.

Similar thing happened years ago with hip surgery. Surgeon explained surgery and said she basically had to give up running. I thought for sure she would cry her eyes out. She was cheerful all the way home and referred to surgery and said,”oh yeah, I am NOT quitting running”. She had the surgery and did end up quitting running. 
Maybe she just needs time. Needs it to be her idea.  Needs to hear it from a doc.  She is much less likely to be stubborn with them although they all say she is a very determined young lady.

Also these docs see these situations all the time and speak very matter of factly about life with an ostomy. When you are in these meetings it normalizes things and you think “oh yeah, sure, I will just poop in a bag. No sweat”.

So we will see. Surgeon could surprise us also and say ostomy isn’t necessary. GI could surprise us with a drug option.

I enjoyed my non SCD days Sunday, Monday and Tuesday. Back on today.


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## Jo-mom

Your daughter is reacting normally.  It is a big change to consider.  She is definitely a trooper.


----------



## my little penguin

Hope the surgeon has some good ideas on how to get her healthy and how to move forward 
She needs some healing ....


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## Delta_hippo

I'm sorry to hear the news.  Questions I would be thinking about are 1) if it's worth trying something like stelara and/ or a bit of een to try and help maybe instead of the humira 2) what are the stats around later successful reconnection 3) is successful reconnection more likely if they go higher up?  I've had a stoma temporarily, I know for some they are great and improve quality of life but there are a lot of drawbacks too. Not least being she's young and stomas are really not sexy.  I suppose I am trying to say nicely that a temporary stoma is unpleasant but doable, a permanent stoma for a young person is a big ask and if there was a way to avoid it I'd want to find it.
Against that of course is that planned surgery is much better than emergency, so if exploring other meds options then they really need to watch her crp etc.
Maybe worth asking the docs if anything on the horizon meds wise, anything in trial that they could get on compassionate use or that they're hearing good things about and due shortly.
I hope the info gathering goes well


----------



## crohnsinct

Thanks Delta!  Always helpful to hear from the voice of experience!  

We have tried EEN with O and it worked beautifully on everything except her rectum. This was way back when she was 12 so maybe it would be different now but according to her old GI and this one, EEN has a terrible success rate with the rectum. Not zero success just not great.

One thing her GI had cautioned us on With regard to trying different meds to get the rectum to heal is that what we find that finally works for the rectum may cause the other areas that we finally got back under control to flare. The surgeon explained the same thing to us. Said that you rarely find a med that works equally as well for the small bowel AND the colon when dealing with severe disease. O has actually never had a clear scope of the TI so I am beyond thrilled that we finally got that healthy. Back in the summer the surgeon was saying we needed a good TI for the end ileostomy but then we ended up not going to surgery And now it looks like colostomy rather than ileostomy. 

I am guessing that their answers would be the same about waiting for the IL23 drugs or the JAK inhibitors. Do we take a chance and lose meds that are halfway working?  She has already had polyps so another year or so if inflammation increases those risks also
The other caveat the GI mentioned last year when discussing surgery is that while we try everything under the sun she could flare massively and then the surgery is emergent and riskier. Better to control things.

From everything I have heard and read the success of healing the rectum with the diversion AND having a successful reconnect is very low. Actually most adult docs I have followed just take the rectum when it is as diseased as hers. BUT she is at a pediatric hospital and I think they try to save the rectum at all costs. So we would be looking at 2 surgeries minimum. The sigmoidectomy and stoma then down the road reconnect or proctectomy.

Great question about if they cut further up. I will ask. Keep em coming! 
I also thought about what if there is even a small healthy but if rectum. Could we remove the diseased part and just do the reconnect now? Then if it doesn’t work resort you stoma?

You are so right about the psychological aspect of this decision!  She has never even been in a date. She just keeps worrying about the fact that boys will think she is gross.I get it but honestly if a boy thinks that then you don’t want him!  I am guessing the whole taking care of it etc is messing with her also. But she has no kind of life right now. The best thing that happened to her was shelter in place so now she doesn’t feel like she is missing anything.

I guess at some point I should hop over to the adult surgery sub forum as there is a wealth of info on surgeries over there.  I am just not ready to face it yet and oddly whenever I post in adult forum no one answers. Maybe my questions are just too bizarre

Thanks for hanging out here with us parents. It really helps us to have the voice of experience. I hate that you have to have had the experience but at least you are doing something positive with it. Most of us parents don’t have this disease and can only imagine how to help so when we hear from experience it helps us tremendously.

Surgical “info only” appointment is 7/1. That is the surgeons next day in clinic. So that was pretty expedited. I am glad as she is supposed to go back to school beginning of August.


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## Maya142

Sending big, big hugs. I agree she may just need time to fully process thinks. Seeing a psychologist in the GI dept. might help her come to terms with it and to process it. She does deserve to really thrive and not just to keep surviving and for that, surgery may be the best option. Still hard to hear and come to terms with though. 

She is a real trooper and incredibly brave. But even the toughest kids need help when faced with huge life changing decisions. I can understand all her concerns especially given her age. Poor kiddo.

But very glad to hear her TI and the rest of her colon look healthy. That's great news!! Sending big hugs to both of you.


----------



## Delta_hippo

I meant to add, if there is anything she wants to ask (or you on her behalf) about stomas then happy to answer.

Can’t claim total altruism for watching the parent threads - I was a breastfeeding mama when Crohn’s attacked, three weeks in hospital open surgery and two stone lighter put paid to that.  Then watched my beautiful baby go slowly from average weight thriving and healthy to pale, not growing, not learning to talk, constant diarrhoea, skin so sore with nappy rash it bled.  2 years of doc saying it’s toddler diarrhoea what’s your problem and me saying Crohn’s nearly killed me so what do you think!.  Thank God looks like it turned out to be gluten intolerance and he’s doing much better on gluten free diet.  So that’s the back story but I like to keep an eye on developments for kids as I don’t trust this wretched disease, also like to be helpful if I can think of anything as it’s hard enough dealing with this as an adult.

Anyway.  Feel free to throw any stoma questions my way.


----------



## Tesscorm

Kim, all I can do is send hugs and good wishes.  I really am so sorry that O and you are facing such tough decisions.  She's been so great with all of this, for so long, I wish an easier recovery had come for her.   

Thinking of you and praying for the best, I wish I had more to offer...


----------



## pdx

Oh man--this new info is a lot to take in. I hope the surgical consult goes well--I'll be thinking of you all over the next weeks.


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## crohnsinct

Hey gang!  Thanks for the PM's.  I tried to respond to everyone but if I missed you I apologize.  

Just wanted to send you all a quick update.  

The foam seems to really help.  O had some really bad days last week.  One in particular that wore her down to the point where she was actually looking forward to the surgery consult.  But then it appeared the foam kicked in and she had three good days.  So good that she thought if this is what life could be like post surgery sign me up.  But today she is back to her old tricks.  Not as bad as last summer though so that is good. 

Had infusion today which also means labs so I will let you know how those return.  

O is wondering if we get the foam to keep giving her those good days can she just stay on foam long term.  Not really sure if her GI will consider this.  maybe if the newer drugs are just a few months away but indefinitely?  Probably not.  

Surgery consult is next Wednesday.


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## crohnsinct

Path report back and the good news is that all the areas that looked visually good all had no significant abnormality. The areas that looked bad were bad.  But this just means that if she has to go to surgery it won't be worse than what we already know.  

Labs are good.  CRP is down to 4!  Most other labs are all somewhere in the normal range whether a little high or low or whatever. They didn't run CBC by accident and we haven't gotten fecal cal back yet.


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## crohnsinct

Calpro back.  977. 

Foam isn't working as great as it was anymore.  No bleeding so that's good but some days still has frequency and many days urgency.  Not pure liquid anymore but still far from normal.  

Talk to you all on Wednesday/Thursday.


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## Pilgrim

Calpro is mysterious.  I hope things improve again. She has bounced back from worse.


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## Maya142

Sending big hugs - since her rectum and sigmoid colon were a big mess, a high FCP doesn’t surprise me, unfortunately. Poor kiddo.
We will all be thinking of you and O - I know it will be a difficult appointment . But she is one tough kid and she deserves to have her life back.


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## pdx

Thinking about you all today. How was the surgery consult?


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## Jo-mom

Big ditto for me!


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## Maya142

Sending hugs - hope today went well. Take your time to process everything - sending big hugs. We have been thinking about you and O and hoping and praying that this appointment was helpful.


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## crohnsinct

Hey y'all!  Can I just say that you totally rock!  We felt the love today!  I am feeling very emotional (I know! The tin man actually has a heart!) but really want to let you know that you are my tribe!  My IRL friends are great and all but they can't possibly understand the way you all do and I would never want them to have to.  Heck, I hate that you all have to but I am so glad you are all here for me! 

So yeah.  Had the appointment and there were no surprises.  Surgeon said: 

- he referred to her as the famous O because he and GI have been talking about her a lot...O rather likes being famous. 
- she has pretty much maxed out drug therapies
- he said if this was a small bowel issue it would be much easier (don't you just love the way these surgeons throw that crap around?  pretty sure if you were the parent of a child facing small bowel surgery you wouldn't say it was easy) but I digress...I get it.  A straight forward resection vs "this". 
- it is good we got ileum and a lot of colon under control but we are using a lot of drugs and surgery might allow us to pull back a bit  i.e.less disease to control so will do a better job. 

- he would remove all of the sigmoid and most of the rectum.  She would have a colostomy.  Hopefully the rectum will heal.  We would take a look "down the road" (6 months to a year) and watch and if rectum heals then try to reconnect. 

- his concern is that she has had pan colitis in the past and he is not so sure just removing the sigmoid is good enough.  He said when he goes in he may see that the rest of colon needs to be removed in which case he will remove it and give her an ileostomy.  He actually wonders if this isn't the better way to go anyway.  He said there is no significant benefit to leaving any colon in. Said whether he reconnects the ileum to the rectum or the transverse colon to the rectum, life after reconnect is pretty much the same.  Will start with diarrhea 12 times a day but eventually will land at 4 times a day.  O said, "that's not enough to make me want to do it" and he added it would be without urgency.  The rectum could hold it.  It would just be liquid when she went. He actually also thinks the ileum reconnect is better because the colon has always had more active disease than the ileum so ileum is "healthier" and less risk to reconnect. 

- of course there are no guarantees that the rectum will heal or that the reconnect will go well.  So potentially we are looking at 3 surgeries.  Colectomy or partial colectomy, the take down and then the proctectomy and new stoma.  

- he said for some reason young girls tend to be the ones who have their rectums heal after this surgery.  No idea why, just his experience. 

- he said he could do the surgery very quickly after she decides.  Expect 5 days in hospital.  He said she could go back to school right away. 

O was obviously not happy but pretty much expected this. We talked about second opinions and the fact that this guy is not a dedicated colorectal surgeon and maybe going to a major adult center with surgeons that do hundreds of these has some merit. However, adult hospitals mean I can't stay with her (thanks Covid) and with all the ostomy training she wants me there.  Adult hospitals are not as "friendly" and warm and fuzzy.  She knows this hospital, her GI is there and would have access to surgeon and team etc.  And they can do it fast.  So no second opinion.  It is here or nowhere.  

O has also been lucky enough to connect with an amazing young lady who had UC and had same surgery. They texted a lot today.  O seems pretty chipper and ready to deal.  They will be talking tomorrow.  

Of course we still have to speak with GI and get his input.  But given the surgeon said they have spoken a lot and she is maxed out on meds, I am not sure he will have anything much different to say.    

O had rough day today.  Went 12 times, one accident and started bleeding again.  Even with the foam. 

I have a few questions for the GI: 

- should we taper Entocort now to see if we lose the rest of the colon because if so, then just take it all. Or stay on it to keep the ileum happy and taper later when we have a better shot at a successful taper

- remove entire colon or just sigmoid? 

- now or wait for break in December?  

I think this covers it.  If I think of anything I will add it.  If you think of anything fire away.  Any questions I should add?


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## Jo-mom

Wow, this has been a long road for O, and you.... I don't have much to offer except my support.  O is very lucky to have such an amazing mother who advocates for her.  You are an amazing person.  Big hugs. Thanks for keeping us posted.


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## pdx

Hugs to both of you. I'm glad that O has connected with someone who has gone through this--that's so helpful. Wishing you both strength as you all think through all of this.


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## Tesscorm

I can only offer you hugs and good wishes as well!  I'm so sorry that after all this time and effort, it's come to surgery.    But, O's lucky to have you supporting her all the way!  And, glad she has connected with someone as well.

Sending lots of hope and prayers that surgery will run smoothly and she'll come out of it with the best possible outcome.  Give her our love!!


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## Pilgrim

I have read quite a few stories of kids that have ended up having surgery and the overwhelming sentiment was that they were so grateful to have control of their lives again. I hope that it goes very well for O and I can't even imagine the heights she will reach without disease weighing her down!


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## Delta_hippo

Sounds like they are pretty confident about the surgery being a good option.  I suppose if it was me I'd want to know what the prospects for successful resection are for the different options.  If low I might try and roll the dice again with swapping humira for stelara and just hoping against hope.  If one option makes resection more likely that would sway me a fair bit.  Stomas definitely give you your life back if you are normally constantly in the bathroom and you can pretty much do whatever you did before (work, travel, have babies) but it is nice to know it's not for ever.  Wishing you both all the best with it xxx


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## Delta_hippo

There are some inspiring blogs out there as well


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## my little penguin

Lots of hugs and prayers your way 
A tough decision for her to make 
Wishing you all the best 
And hope the Gi /surgeon can give her all the good options


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## Maya142

Lots of hugs - O is a trooper. I’m not surprised - we knew her situation going into this appt. but it’s a lot to take in and she is truly resilient and I’m so proud to hear that she is talking to others to help her deal with the surgery. She has really grown-up!
I agree - an adult hospital would be a much less friendly place for her to learn about her ostomy, and having family support can make a huge difference.

My question would be her going back to school 1) right after major surgery (we were once told for every day in the hospital to expect that many weeks till you recover - 5 days inpatient means roughly 5 weeks of recovery) and 2) with so much COVID around while she is recovering - you don’t want her getting sick while she’s recovering.

Did the surgeon say how many incisions she will have and how big they’ll be?

O is incredibly determined and she is lucky to have a mom like you who knows so much about IBD! I hope this surgery gives her her life back. Sending hugs and healing thoughts.


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## crohnsinct

Yes, he said they would do it laparoscopically.  Three holes.  One oft hem will be where the stoma is so no scar really.  One of them would be pretty big...like her hip surgery scar and the third would be pretty small.  

I almost fell off my chair when he said going back to school was no problem...he looked at me and said, "oh yes".  The only thing he said she would have to wait on would be swimming....ya think?  I think I will head back to school with her for at least the first week of school.  If she gets the surgery when I want her to then that would be the third week of recovery.  

Today she is sayings doesn't want the surgery.  I had a feeling there would be some back and forth with her moods.  

We have a call with GI tomorrow.  I think he is anxious to discuss everything and get us moving along and maybe on the surgical schedule.


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## njprrogers

Thinking of you and O... I hope this next move brings you two much needed relief.


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## Clash

Just check in and saw all of this. That O has been famous for years, tell that Doc we all said so!

The surgery you are talking about that includes the colon is the one that my husband's niece had. She has never looked back. And hasnt had another hospital stay related to the GI since then(she has damage to joints from steroids which were the only med that would quell the beast at all which has caused hospital stays for hip replacement etc)

She has had a bit of rectum left but has so far chosen not to have the reconnection. I dont have her insight as to why but I do know that this surgery has given her freedom she did not have before. In fact, she just had a wedding a year ago.

It's such a tough decision to make, my prayers and hugs to you all!


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## crohnsinct

Thanks @Clash.  Can I ask?  Was your niece’s surgery emergent it was it planned over time?  I think that is the problem. She says she just doesn’t feel sick enough. How on earth she sees it that way is beyond me.


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## Clash

Hers was planned similar to O's if I remember correctly. She would have stints in the hospital then go awhile where it all looked bad but she was functioning and saw no reason to tip the apple cart. But finally the GI told her that there were no choices left. I think it still took some time before she opted for the surgery and she almost waited too long. In actuality she probably did wait too long but she had phenomenal tenacious care and I think that made the difference!


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## crohnsinct

O had a call with the GI.  She hasn't come around to saying yes to the surgery yet.  I am sure this is natural.  It has only been a few days.  GI says she is medically stable so we have some time.  I guess surgery before she went back to school was a little ambitious.  So she is slowing us all waaaaay down.  

GI says her WBC is too low and it is pretty consistently low.  He said we have to start thinking about decreasing the number of meds she is on or the dosages.  

The new plan is to try the Cipro/Flagyl combination again for two weeks to see if that helps her.  It didn't help her last year but that is when she got really sick so maybe since she is in better shape this year it will make a difference. He said it is a safe med to add to everything else she is on.  

He also said the foam could need more time to work. 

He would like to give Humira another two cycles and if things don't improve we will start decreasing meds by dropping the Humira.  Next step will be decreasing dose of Entyvio down to 300 mg but still keep it at the 4 week interval.  

In the meanwhile, she will keep thinking about the surgery and speak to one of his patients who had the same concerns that she does and see if that doesn't help her wrap her head around the idea.


----------



## Jo-mom

Her reaction to the surgery is pretty normal.  She needs time to process it all.  Although surgery was discussed last year, it's different when you are there.  Hang in there mamma, I know it's a difficult time.  Hugs.


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## Farmwife

Hey, old forum friend.
I've read a bit but not all.
I'm so happy to see your still a great mom.
I'll be praying for directions for y'all.


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## crohnsinct

O had her telehealth yesterday. 

GI tried to explain the need for surgery again. Said they removed two colons this month and after looking at them they really should have removed them sooner. She wasn’t biting. It’s her senior year. She is a t.a. And a research assistant. She has already changed cohorts once when she missed that summer semester. She really doesn’t want to miss school. It’s a shame to because if he had scoped her sooner we could have given her time to think about it, have the surgery and still get to school. Hindsight.

He is still concerned about her WBC’s and said he needs to reduce something so next Entyvio infusion is going to be 300mgs.

Things got a little better but starting Wednesday frequency went up, urgency was through the roof and by Thursday we were seeing blood again.

Her next Humira shot is due Monday so we are all thinking maybe the Humira is doing something and maybe her improvement wasn’t the antibiotics. We will pull levels shot after nextHe is switching her antibiotics to Xifaxan and doxycycline.

She asked if she could add rice to her diet. He said ok and we met with dietician to discuss. She suggested we look at CDED as it is a more liberal diet (in phase 3) and SCD doesn’t seem to be of much benefit. It was very interesting to O BUT she is not sure she wants to go back to a severely restricted diet for 6-12 weeks, especially if she will be getting surgery in December. BUT the case was made that CDED “could” heal her to the point she won’t need surgery. She is half mulling it over. I guarantee she doesn’t do it.


that’s it for now!  Really hoping the drop in Entyvio doesn’t make things worse

Oh and Telehealth visits monthly, labs monthly and staying on Entocort 9mg daily and proctofoam.


----------



## Catherine

I know O disease is much worse that Sarah.  But Sarah was very luck to avoid emergency 
Surgery.

If O is going to have a chance a successful reconnection down the track she wants planned surgery.

Planned surgery less school missed.  Shorter recovery time.

Can she plan surgery for the end of semester?

Sarah didn't really agreed to surgery she just went along with as she was out of options.

She had a real fear of ending up with a bag.


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## my little penguin

Hugs 
It’s difficult with Adults 
Since they have their own opinions and tune out parents /docs most of the time 
Hope she agrees to cded and it works this time


----------



## Tesscorm

So tough for her to decide and equally tough for you to wait for her decision.  There's so much going on in her life and she's fought this for so long, I'm sure she's thinking she's sacrificed enough!     I'm really hoping she can hang in there till December and still avoid an emergency!  Lots of hugs!


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## Delta_hippo

Just thinking about the WBC count, I was wondering if it was worth asking if any of the drugs more likely to be the main culprit.  I suspect humira but don't know.  It's just that if it is the H, is it worth swapping that out for Stelara which is the big one she hasn't tried yet?  If she's thinking December surgery  that might be a long enough window to see if helping but then there's also an argument to save it for maintaining remission post surgery.  The other thing was, when I was on steroids the budenoside stopped working pretty quickly, the third course I think, and we are talking crp of 90 despite max dose.  So it might not really doing much any more but still contributing to overall drug load?
Such a miserable situation.  I think I might be tempted to focus on long term best chance of keeping as much of everything intestine wise as possible and thinking what does that mean now in terms of looking at an ostomy and maximising chances of reversal.  It's tricky.  Also wondered if her hopes for school might be impacted any way by coronavirus in which case is sooner rather than later worth considering for surgery.  Hard decision, especially at her age. Wishing you both well.


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## crohnsinct

Thanks Delta....yeah we discussed which drug is the likely culprit and the GI really feels it is the Entyvio.  I thought Humira as all the WBC nonsense started after we added it but he doesn't feel it is the Humira because it is a large molecule drug.  Plus Humira seems to have made the most impact so he would rather keep that.   

I think Budesonide does "something" just not enough.  When she tapered down to MWF dosing she flared back up.  At this point she has been on it since October and I know in the prescribing literature they say not to take it past 12 weeks but plenty of GI's use it longer term.  I would like to get her off it.  While she is on it, it is hard to assess if any of the other drugs are really doing anything.  

Her TI and small bowel looked good so either the Humor or Entyvio are working there.  It is the distal colon that is the problem area and the GI really feels strongly that it is not likely to rescue those areas and if we drop one of the other biologics to try it, we potentially lose the control of the small bowel and a drug that is working.  But that was the original plan with surgery.  To remove the problem area and then we just have to treat the small bowel and Stelara becomes an option.  But now that the small bowel looks good we can just do surgery and keep drugs as is.  

The surgeon explained the reversal success has nothing to do with how much colon we are able to salvage.  It is really the health of the rectum that will determine success.  That and whether or not the disease comes back to that last third of the colon.  If we keep the ascending and traverse and reconnect, the transverse doesn't stay the transverse....it becomes the sigmoid and susceptible to the disease that is there now.  Could happen right away, two years from now or maybe never but many end up with a third surgery some time down the road to make the ostomy permanent.  BUT keeping a decent amount of colon does help with diarrhea after the reconnect as the colon will absorb more water as opposed to if we take down the ileum.  So it would be a more comfortable lifestyle after the reconnect....maybe. 

I was REALLY hoping her school would go online and open up the opportunity to do the surgery sooner but no such luck.  They are having in person classes.  Football is happening and the president of the university announced there will be tailgating....so mad at how cavalier they are being. 

She seems pretty good these days as far as frequency goes but we are on a trip so I annoy paying as close attention. I think the Humira shot on Sunday (we gave it a day earlier to get her back on schedule) may have helped there.  She still looks very, very thin.  

Infusion on Tuesday so will get more labs and cal pro so more data!


----------



## Maya142

Aren't COVID cases skyrocketing in the south? I don't know specifically her school, but at my daughter's and my niece's schools, they are having 2 classes come in the fall (freshmen and sophomores) while juniors and seniors do online school. They'll use only single rooms and bathrooms will have to be cleaned more often. All big lecture classes are online or have been divided into many small lecture classes. 

In the spring, it switches - juniors and seniors are on-campus. But both semesters, any student who wants to do wholly online/remote classes, will be allowed to - especially those who are immunosuppressed or have other health issues. My daughter's specialists all thought going to school is too risky (she asked since she is on two biologics and MTX), so my kiddo is stuck doing it online, though it is her senior year and she REALLY wanted to go. 

I'm honestly kind of shocked they're allowing things like tailgating!! 

My worry is, of course, that she will flare on a lower dose of Entyvio and she has to understand that dong an emergency surgery vs. a planned surgery means less chance of reconnection. Has the GI or surgeon spelled that out for her? That if she flares, she could get stuck at an adult hospital, Mom probably won't be allowed in and she may need emergency surgery? That she is more likely to get stuck with a bag that way?

Another thought - what did she decided about EEN? If she can do 80% formula, 20% food, maybe it'll help without it being too hard for her? A g-tube surgery is pretty minor - that is something you could do before school. Even if she doesn't do EEN, supplemental nutrition will help her gain weight or at least prevent further weight loss. And all that will help if she has surgery in December - you don't want her going into the OR malnourished and skin and bones...


----------



## crohnsinct

Aren’t covid cases skyrocketing everywhere except ny metro area?  
I don’t want to disparage a whole section of the country but where my daughter goes to school they are not so concerned about covid.  Now football is another story. THAT is religion!  

Yes, GI made those points, I made those points and her health coach made those points. But I think O is giving M a run for her money on stubbornness.

I am just trying to butt out these days because if I speak we fight.


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## Maya142

Poor kiddo (and poor mom!). I know that feeling - it's like talking to a brick wall. I wish they were taking COVID more seriously around school - a packed football stadium with kids yelling and cheering sounds pretty scary  . i hope they're at least mandating masks.

Sending big hugs. It's tough to watch and wait and hope that she will make it till Dec. Fingers and toes crossed for her and for you.

When does she leave for school?


----------



## crohnsinct

Thanks Maya....it is definitely trying my patience.  She leaves next Tuesday. Then she comes home for Thanksgiving and stays home after that...They will do the last week of lectures online and then take finals virtually.  Even if classes went virtual she has announced that she wants to go back and do them virtually from her apartment down there.  It might be best.  I think she needs a little alone time.


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## Maya142

> Even if classes went virtual she has announced that she wants to go back and do them virtually from her apartment down there. It might be best. I think she needs a little alone time.


I can understand that - she probably wants to be able to see her roommates/friends even if classes are online. Of course, I'd feel better if she was at home with you, but, well, young adults want to be adults.

So is she planning on the surgery in December or is she saying no to surgery at all? Sorry if that's been asked and answered - somehow I missed it.

Sometimes space and some time to think can work wonders...maybe she needs to get there on her own. That's how my famously stubborn daughter finally gave in. My daughter would suggest to bribe her with a puppy  - she says that pets make making hard decisions easier.


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## crohnsinct

LOL!  That M always suggesting a pet. She cracks me up. 

Right now she is saying no to surgery but that IF she considers it at all she would do it in December.  

So here is a funny or sort of sad story depending on how you look at it.  O's friend met us at T's tournament and stayed with us for a few days.  We were out to dinner and her friend was trying to guess where O's grandparents live.  O said, "I'll give you a hint. Where do I go all the time?"  and her friend said, "the bathroom?".  We all died laughing but if that doesn't sum up the state of affairs, I don't know what does.   

She actually doesn't mind this friend getting an up close and personal look at her daily life because said friend suffers from her own GI issues so not so unusual.  I was kind of hoping it would stress to her how not normal her life has become.  Oh well.


----------



## Maya142

Oh geez...that made me laugh out loud. O is truly something!! I'm glad she has a friend she can talk to and be open with. That's great!!

I guess we will have to see how she does on a lower dose of Entyvio...Unfortunately, I think that might be the thing that'll show her she needs the surgery .


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## crohnsinct

Well a week after her infusion at 300mg and her frequency and urgency went way up. It has been rough the last few days.  

For those playing the home version of our game her calpro just posted and her level 8 days after the sample was taken is 1,582. So looks like antibiotics didn’t do much in the way of healing. Not sure we can even say Humira is doing anything.

Not sure where we go from here. She got a Humira levels test on Monday so maybe wait for those results to see if we could adjust Humira.

She is thinking next step is EEN and now that her sister is planning to do NG tube she says she will try it also. But she leaves Saturday so not sure when that can happen. Ofcourse I would fly her home to get trained but you know her all important college life probably doesn’t have room in the schedule for such mundane matters.


----------



## Pilgrim

They will both do NG Tube???!!! That is great news. It will leave no stone unturned!


----------



## polly13

Good news that she'll do the ng tube, een might but her a bit of time to make surgery decision.  Love and hugs to you both


----------



## crohnsinct

I am sorry for disappearing for so long.  The CA fires and other health issues have kept us preoccupied.  

To catch you all up, O had another infusion at the end of August and all those labs returned great!  Even her cal pro came down to 179!  It did take 12 days to result and GI isn't 100% sure that they stored the sample properly AND she has done this before BUT she reports symptoms have really improved and all labs are very good so he is cautiously optimistic.  

He did add a third antibiotic to her treatment based on studies and research that is surfacing.  He said we have the E. coli covered and the aerobic bacteria but not the anaerobic bacteria.  So he added Cipro for that.  But constant Cipro had it's risks so she is now two weeks on and two weeks off with all three antibiotics.  

I have been reading a lot about antibiotic therapy for people with Crohn's and it seems to really help a lot of people who fail all the other treatments.  It is especially successful in VEO Crohn's kids.  

It is still very early to consider this a complete win for O but early returns are encouraging.  

She is still low in weight.  About 4 pounds under the lowest weight the GI wants to see her at so with his and the RD's approval we are adding rice to her diet.  

She turns 21 today and during her last RD Telehealth appointment the conversation was "SCD legal alcoholic beverages"....her birthday just so happens to coincide with her two weeks off antibiotics so even that won't interfere with her little celebration.  

She had infusion today so more labs are coming and hopefully they will show that we are another step closer to remission! 

I know some of you have sent PM's and I am hoping to get to those in the next few days.  Thanks so much for the messages!


----------



## Pilgrim

That is fabulous news! Also thank you for being so detailed about what works and doesn't. I hadn't heard about the antibiotics and VEO disease..very helpful to know. 
I hope she has a very happy birthday and I am happy it sounds so...normal!


----------



## my little penguin

Antibiotics in inflammatory bowel diseases: do we know what we’re doing?
					

Despite the revolution in inflammatory bowel disease (IBD) treatment over the past two decades with the advent of biological therapies, there remains a substantial proportion of patients with inadequate or unsustained response to existent therapies. The ...




					www.ncbi.nlm.nih.gov
				




@Pilgrim
Just for you 
Enjoy


----------



## Pilgrim

Thanks MLP!


----------



## Delta_hippo

Hey this is great news!  So chuffed for you. How nice for her to have a bit of hope for her big birthday.  

Don’t know if it is worth asking doc about probiotics on the 2 weeks off antibiotics bit to try and crowd them out a bit?  (If it works like that). 

I was apprehensive when I saw you had posted after all the maybe surgery, got to reduce drugs stuff so this is just so good to read xxx


----------



## my little penguin

Poster cited in the article 


			https://watermark.silverchair.com/jju027.449.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAr4wggK6BgkqhkiG9w0BBwagggKrMIICpwIBADCCAqAGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMeG92jlIUcND4ZPEKAgEQgIICcXyncRo61Zlo4VtyBVrrNjEistmPGj5Xm9BEb3R7NH3hLtcIkdR6JYuBbZgDKMy37Jsvj45Q-glE7a5Sk095jHuRZYfl8znbwWZZzb9ggSEQhD76SV4VClkaNRQukjPT26x9TPh_yiPtWQKDFUzDp1VXiC8Lz0wnPtbAR8_x3Uwjm_PW-6T_M8OqJQnABnkLfzbMIUebs-vJ2TjR0VsqfoaV5pN8WEQoon5fp-JymXMM0dHvXy4hnLBPPaBd4VtByQhesvCSGg9bj-TcdJrU7uD-WOQQPRoMBoHhOCWVvQeRwAdbQSsrZDIhond41jIR_ma0KlzoGr_lQhKGN-bRi8Mj0FEHXIpmpPxgWFlIzV0xpzI4ee4GT7NeqgO4dqPveKrDr1Smd2DnOX4FbtCIb7PTBnOURT8kVqBaa-kcbAFbmO_TRhCyI6TcnAnM5Vabkek_K28d7P1gv1PshHCdONb5_qfzObPBtQRG-SvnAWT8qDjRHMBJkHFNOdX-X-tiZYdEmW2DyjNm98RLR4oV5yXt1LWZwB-Me46msY9xqOygIs8YzvsZLl05g8Ag5khRhgjnPkYcnhOTbmRyhu7kcokWl8EejYvKy6nAQeUpcm-ZMQehbSY--LSknaHPlX8WosUCqc4M9gAAan2EUF3E1bM39ZY4awPGoEGdq0ShB1bhacg_C10nkODRkESKvAsukUTjUoPrJjgLujzas3B2Ycj4FWK-D2IwCrF-yz1FpR23plUsjD5LpilQbSXu2EIOmJ_3-5R0e1uSWhw5qAcfEu7JinK8SogwUsn5ULkhkoRVZDNc_mH7O_z-rTmqc90HP5Y


----------



## crohnsinct

Is that a Dustykat thumbs up I see on my thread?!  OMGOSH!  As I live and breathe!  Welcome back girl!


----------



## crohnsinct

Role of antibiotics for treatment of inflammatory bowel disease
					

Inflammatory bowel disease is thought to be caused by an aberrant immune response to gut bacteria in a genetically susceptible host. The gut microbiota plays an important role in the pathogenesis and complications of the two main inflammatory bowel diseases: ...




					www.ncbi.nlm.nih.gov


----------



## Maya142

> It is still very early to consider this a complete win for O but early returns are encouraging.
> 
> She is still low in weight. About 4 pounds under the lowest weight the GI wants to see her at so with his and the RD's approval we are adding rice to her diet.
> 
> She turns 21 today and during her last RD Telehealth appointment the conversation was "SCD legal alcoholic beverages"....her birthday just so happens to coincide with her two weeks off antibiotics so even that won't interfere with her little celebration.


Happy Birthday O!!! I hope very much this year is easy and boring (in the best way). I hope her IBD will calm down and she can be a normal young adult and enjoy college.

In terms of weight, you have mentioned that O was considering EEN,  after T agreed to the NG tube? I guess she decided against it? Do you think the doctor and RD could talk to her about the importance of gaining weight now so she can heal? She could even do overnight feeds like M did and then her suite-mates didn't even all know - just the ones she wanted to tell. in M's case they were very supportive.

And they could talk to her about the risks of alcohol, considering she will be 21 and the possible consequences - SCD legal or not.

Fingers and toes crossed that she starts feeling better soon!! Before the big birthday!


----------



## DustyKat

You don’t miss a bloody trick do you! 

21! wow! Happy birthday O!


----------



## DustyKat

Wow, just wow cic 

I have just read a few months back. So much for you both to consider and process and very difficult for you as parent not only emotionally but walking that very fine line between saying nothing and saying too much. 

I note the part about the comparisons of surgeries the surgeon made. You are certainly right that surgery, no matter the location, for a parent is confronting but TBH the options for O are truly in a different class and must be in many ways distressing for you both. I do hope with all my heart that O is able to find a suitable long lasting drug alternative but if not that she is able to go into surgery in a planned and controlled method to give her the best possible outcome.

Thinking of you both and sending healing thoughts. 

Onwards and upwards O!


----------



## Tesscorm

Happy Belated Birthday!!

And so great that you're seeing positive results!!  Yay!!  It's been a long time in coming!  I hope all continues to just get better and better!!


----------



## crohnsinct

Dusty!  Me? Miss a trick?  Girl I invented the tricks! 

So quick little update.  

All of O's blood labs returned pretty normal. They even did nutritional studies and basically things are good.  

Her cal pro just returned at 408.  So doubled in 4 weeks.  This value was taken just 3 days off antibiotics although as of today she has been almost two weeks off antibiotics and she says she still feels pretty good.  Frequency is down, no bleeding, no night waking.  The only thing is she can't gain weight.  

She was hoping to drop the antibiotics completely but I am guessing with this result the GI won't want to take any chances.  

In the summer when she denied surgery, the GI told her then she would need a scope in December and yearly after that.  I am hoping he remembers that and holds her to it because I would really like to know if this cal pro value is fine or if there is something more sinister going on in there.  

Meet with GI Friday so hoping to have more info for y'all.


----------



## Maya142

So glad she is doing a bit better - that’s wonderful!! I’m so glad frequency and bleeding are better!

I know O was very against the NG tube but since her sister is doing it, perhaps O will find it less scary. In fact, I bet T could show her how she inserts it on FaceTime!

I would email her GI to remind him about the scopes before the appt.  Though maybe don’t copy O on that or she may kill you!


----------



## crohnsinct

LOL!  Yeah...I have pretty much been banned from contacting the GI directly.  I am only allowed to be on the Telehealth call on mute!  I fear she is going to cut me off from even that much!  So I could just whisper in her ear and suggest she bring it up.  She is really maturing though.  Her cal pro results were not back as of this a.m. and she took it upon herself to write to him and ask them to track them down so they had that number for the appointment on Friday. Will wonders ever cease?


----------



## Jmrogers4

Happy Birthday O!  Trying to get caught up on all our kids I've been MIA for a while.  Jack turned 21 in July - Where did the time go???  We had a few people over for a socially distant backyard bar.  I told him he absolutely could not go out to the bars.  They had a great time sitting around the firepit and probably didn't get as drunk as they would have since you know mom and dad were inside.
At least you get to be on Telehealth even if you're muted.  Jack would not let me go to his last appointment, Dad was there for a few minutes but didn't stay to ask questions or even listen and he was only there because he had an appointment directly before Jack. 
Hope she gets Calpro numbers and they are fab!


----------



## crohnsinct

Hey y'all.  Thanks for all the PM's checking up on us.  Still dealing with other health issues which keeps me off the computer but good day today so thought I would hop on.  

O's calpro in September went back up to 408.  Not a total freak out point but enough for the GI to be cautious at the next appointment and talk a bit about MRE.  He doesn't want to do colonoscopy given Covid and is really more concerned that we might be missing some small boel inflammation further up given she still reports that she is doing pretty o.k.. 

October infusion and all her blood labs were best ever and her calpro was back down to 110.  

We are all trying to get a handle on any patterns, like is she on or off antibiotics when she goes high, or is she off Humira cycle etc....but there are just so many parts to her treatment that we can't really come up with anything definitive. 

So we are just going with the flow and taking the good and not questioning it.  

Interestingly, the SCD forum I am a member of has lots of kids who didn't respond to regular treatments and who starting antibiotic therapy and are all getting a lot better.  There are also quite a few almost colectomies there that have been avoided with antibiotics.  None of the kids are on the same exact therapy though so I am guessing it just really depends on the exact needs of the individual microbiome.  

Her next infusion is 11/18 so here's hoping we get two good cal pro's in a row.  If we do I think we might be flirting with the R word and start decreasing some meds. 

Going to check on all your kiddo's now.  Hope you are all well!


----------



## crohnsinct

Hey y'all. Another long update.  

November labs were stellar!  Cal pro was down to 56!  O NEVER has cal pro that low.  She reported low frequency and feeling great.  WE were cautiously optimistic and flirting with the R word.  

She came home for Thanksgiving and didn't look as good as she reported feeling.  Frequency inching up.  Thin.  I just sat and watched.  

Things kept trending down.  She stopped eating. I grilled her. 

She is on the antibiotic cocktail two weeks and then off two weeks.  She takes her abx and budesonide at the same time.  So this last cycle when she went off abx, she "forgot" to take the budesonide.  Then "forgot" to go back on the abx after the two week off cycle. Which all resulted in her frequency really going up, urgency and fill the toilet bleeding.  She confessed to GI and got back on. 

A week after getting back on budesonide and antbiotic cocktail she had infusion and her calpro was 2237.  She looks awful.  Weight is pretty low but she gained two pounds in a week so hopeful there. 

Virtual appointment with GI.  Basically it looks like this is all her fault.  She was doing so well (or was she, she has a history of under reporting).

Lots of emphasis on eating because weight loss starts the inflammatory cascade.  She told him she has no appetite and feels bleh during the abx weeks.  Of the three she is on, doxycycline is the probable contributor there.  Also the most redundant drug.  So he said o.k. to drop it and see what happens.  She also asked to drop SCD.  He said if SCD is causing the weight loss then he will approve that because while it might be helping if it is causing weight loss it is doing more harm than good. 

So we are giving it until 12/28.  Will pull another cal pro and check weight.  If cal pro is still elevated then we will have to escalate therapy. The choice is go back up to 600 mg of Entyvio or move Humira to weekly.  He would choose Humira weekly because it is a faster acting drug and we will know by mid January if it is working.  Entyvio changes take 12-16 weeks to take effect and she doesn't have that kind of time.  Which brings us to the elephant in the room...we reduced her Entyvio to 300mg about 12-16 weeks ago.  Is this flare up because of her dropping budesonide for 3 weeks or  a result of the Entyvio decrease or some combo of both?  

Even if it is her med noncompliance it still stinks.  You would think being on two biologics, one at off label dosing and SCD would hold a person.  Plus having been on Budesonide for over a year you would think it would take longer than 3 weeks to flare up like this.  So are the antibiotics really the silver bullet? 

She goes back to school 1/4.  It is her last semester of school.  I will be putting her on a plane in a flare for the 9th and final semester.  It's hard enough saying goodbye to your kid but this just stinks.  But she did it!


----------



## Jo-mom

I was planning on posting to check how things were with your daughter and found your post this morning.  I would have rather preferred better news though.  I do hope things turn around during the holidays while she is home with you. It's amazing that she was doing so well and it really would be difficult to figure it all out with all the different medications.  I hope you are doing well.  Been thinking of you since you have been quieter on the post front.  Let's hope her being home with mmama bear makes a difference.


----------



## my little penguin

Hugs 
Growing up is hard 
Chronic disease growing up is harder


----------



## Pangolin

This is such a hard thing to figure out, and with so many things going on at the same time it gets so much harder. Good luck.


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## Mountaineer01

Not trying to sound unsympathetic at all, but hopefully this was a learning experience for her. A good friend of mine has a son who is a Type 1 diabetic. He went off to school and got lax on his insulin regimen. Needless to say he was in the hospital for a lengthy stay and ended up having to repeat all of his classes that semester. It was definitely a teaching moment for him and he's never strayed since.

I will always be an advocate of Humira, especially considering all of the misery I went through before being put on it. It takes a few weeks to start seeing effects, but as has been mentioned, not as long as Entyvio or some of the other biologics.

For the weight issue, can she tolerate Ensure as supplemental nutrition? That helped me through some of my roughest patches before I was ever aware I had Crohn's.

Hope she starts feeling better soon.


----------



## crohnsinct

@Mountaineer01 Thanks.  Yeah a teaching moment and yes she should be more med compliant but honestly after all this kid has gone through and the plethora of drugs she has to remember and the way they make her feel, I kinda don't blame her.  

She has been on Humira since March and Entyvio two+ years at 600 mg and budesonide for 15 months.  Then the abx cocktail for the second time since summer.  IDK if weekly Humira will make that much of a difference but considering colectomy is her next step, it is worth a try anyway.  

The formulas are against SCD, and her GI wants her strict on the diet BUT has talked about maybe adding a couple a day.  But all they do is make her less hungry for food so we don't really gain anything with them.  We just trade the little bit of solid food she is taking in for liquid. 

I think dropping the doxycycline has helped,  She ate more today then she has since she got home.  Like a ton!  Like she is back to her regular eat everything in sight appetite.  So hopefully this will fix the weight loss and reversing the weight loss will stop the inflammation cascade and then we can sail along.


----------



## Mountaineer01

Glad to hear she's eating better. Hopefully things will continue to slowly improve.

Believe me, I can understand medical rebellion and mutiny, especially being young. I probably would have done something similar if anyone had been able to figure out what was wrong with me back then!


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## Delta_hippo

What a miserable situation, especially after the brilliant earlier results.  It’s mad how quick things can change.
I would encourage any opportunity to up calories especially if possible surgery on the cards.  I had a rubbish time in November where it felt very hard to eat.  Banana/ coconut milk/ almond butter smoothies helped turn the corner.  Also porridge with cream and honey (I know oats not strictly scd but other anti inflammatory diets allow) and stirring coconut oil and almond butter into soups.
Maybe also worth checking iron levels if she is bleeding that much.
Poor thing.
Hugs and prayers xx


----------



## crohnsinct

Happy New Year Y'all!  

Well O had her second calpro and her results are still >2000.  

In true O fashion she woke today not feeling well...non IBD stuff...cough, aches, chills.  GI wants her tested for Covid tomorrow.  If Covid is negative she is going to start back on steroids to hit the inflammation fast and hard.  If Covid positive IDK what. 

She is supposed to go back to school next Wednesday.  I think now it is official.  She has never gone back to school NOT on steroids.  

Fun times!  

Hope you are all well.


----------



## Jo-mom

Happy New Year!  Couldn't you give us good news on this last day of this trying year?  Let's hope it's not COVID.....  Holy cow - let's hope for a healthier 2021 for everyone!


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## crohnsinct

@Jo-mom well that wouldn't be fun now would it? Seriously so done with 2020!! So done with Crohn's!


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## pdx

Fingers crossed she doesn't have Covid. Let us know. And yes, we are all so done with 2020!


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## my little penguin

Hugs  to you and her 
No COVid please 
Hope steriods help 
And she starts the semester good


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## crohnsinct

Just went to get her Covid test and she wore a diaper...and needed it.  If that doesn’t sum up the state of affairs idk what does.


----------



## Delta_hippo

I know she is trying so hard to do the keep calm and carry on but this really doesn’t sound good.  I know she is tired of scd, wonder if it is worth considering een and CDED or phase one aid-ibd?  I’m worried about malnutrition if things are going through that quickly so thinking easy absorb high nutrient might be the way to go?  Hope the steroids help.
I was also wondering, and this is a long shot, mount sinai are doing some work on a phage to tackle E. coli (another member kiny posted about it), if she is sometimes responding well to antibiotics then a massive flare, don’t know if there is a microbiome test that would identify if a particular bug out of control and if E. coli whether they would consider compassionate use.
I also did wonder if she needs to talk to someone as this is such a nightmare for her, a health psychologist might have some ideas about living with chronic illness- I was thinking about this after you said she ‘forgot‘ her meds and wondered if something a bit more going on.  Rage? Despair? Wanting to scream at the moon?  She’d be entitled xxx


----------



## crohnsinct

Thanks @Delta_hippo .  Her doc did say that one of the antibiotics she is on is addressing e coli...I wonder if that is the same thing Mt Sinai is doing?  

She has spoken with the department psychologist and felt she didn't get anything out of it and the psychologist told her she is good and didn't need to have another appointment and to call if she needs anything.  What a disappointment.  

We talked a bit on the way home.  I said, "you won't drink formula, you won't have surgery...you are tying his hands.  Would you consider a g tube?" She said, "no they can insert an ng tube in the hospital and I will wear it 24/7."  O.K. great then you will go back to school with it?  She said o it comes out when she goes to school.  She is really being ridiculously stubborn here.  I wish it wasn't Covid and he would pull her into the office and have a good long talk with her.  

Just heard back from the GI and he says that even if she were Covid+, he would still put her on prednisone to get fast control of this inflammation.  So she is back on 40mg daily.  At least her psoriasis will clear up.


----------



## my little penguin

Fingers crossed the steriods
Kick in soon


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## crohnsinct

He said he is hoping things cool down over the weekend.  Two days...that's fast but she does usually respond to steroids pretty well.


----------



## crohnsinct

Well O is Covid positive and I likely am to as I now feel pretty sick. Husband, T and I are getting tested today. Third daughter is getting tested Thursday. 

O is down to 111.5 pounds ad she is 5'8".  We are meeting with the R.D. today to discuss liberalizing the SCD diet.  At this point between the Covid and the Crohn's flare we have to replace calories and stop the inflammatory cascade.


----------



## my little penguin

Hugs to all of you 
And healing thoughts /prayers


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## Pilgrim

Oh, I am so sorry to hear this. I wish I could bring you a casserole, CIC. This is not what any of you needed. 
My daughter in law (with an unidentified immune issue) had covid and it took a few months for her to feel ok. Still not back at work full time.  She is 23. 
I hope you can get calories happening. Did she already start steroids? How does that work with a covid infection?


----------



## pdx

So sorry, CIC. Hope you all recover quickly.


----------



## Jo-mom

OMG so sorry to hear this news.  Hugs.   Please keep us posted on how you guys are doing.


----------



## WindingRs

Oh no. Sending you positive energy. Hope you all feel better very soon.


----------



## Tesscorm

I am so sorry to read all the updates!  I really wish she would catch a break; she works so hard and her perseverance is incredible...  she deserves a break, not another illness to treat.    And, you as well, you don't need the worry nor the illness!

Take care of yourself too!


----------



## crohnsinct

Well now I am pretty sick and my results posted overnight and I also have COVID19.  

O seems to have turned the corner as far as her COVID goes.  Still having loose BM's and seeing some blood but it has only been 3 days of steroids.  She should turn the corer there also any day now.


----------



## my little penguin

Hugs feel better


----------



## Pilgrim

I hope you recover quickly. Maybe O got her superhuman gene from you? Here's hoping....


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## Maya142

How is she doing now CIC? Poor kiddo. Sometimes they have to learn the hard way. My older daughter did the same in college (more than once!). 

Is she on weekly Humira now? It's interesting that the antibiotics are working so well for her - I'm glad they are but I never would have guessed they'd help so much.


----------



## crohnsinct

Thanks Maya.  She is still pretty sick from the Covid so hard to know how she is doing.

The GI isn’t so sure her coming off budesonide is what caused the massive flare. She is too bad too fast. He thinks it is a combo of factors. The Ned non compliance but also reducing Entyvio and possibly the low calpros were a lab error because they didn’t result until 9 or so days so it is questionable how viable the samples were. She gets tested every 4 weeks so hard to believe a week off budesonide made her calpro go from 56 to 2200 that fast. But certainly didn’t help matters. He also thinks antibiotics were definitely helping but also that one week off them wouldn’t cause that much of a calpro increase. 

No maintenance changes yet  I think we are just trying to get through covid and then through steroids and take it from there. Maybe if steroids could get her back to baseline the budesonide and antibiotics will hold her.


----------



## Maya142

Oh my goodness, somehow I only read the page before this and had no idea she had COVID!!! I'm so, so sorry to hear that. This poor kid needs a break. I can't believe she  has to deal with COVID on top of everything else. It breaks my heart to hear she has so much on her plate. 

What are her symptoms? Is she going back to school?

Poor, poor O. I don't blame her for pushing back on some of the treatment - she's been flaring for 5 years now. 

I wish she would consider the G tube. Her weight is really low. I hope she can add some foods back into her diet soon. I'm also hoping Pred will improve her appetite once she has recovered from COVID.

You all will be in our thoughts - praying for a speedy recovery.


----------



## crohnsinct

well husband is now also down with COVID.  T and moldiest are left.  T tested on Tuesday so her results should be in any day now but she is not symptomatic.  My oldest is symptomatic so fully expecting her result to come back positive.  

O's classes start on Monday. She can't go back until the 17th the earliest.  It all depends on T and if she is negative and stays negative or of she starts developing symptoms.  Then it is 14days from her symptoms.  She is working with her teachers to see if they will zoom the class for her.  Even if she just hears the audio it is better than nothing.  

O has/had sore throat. fever, headache, chills, aches and pains, cough and chest pain when breathing.  We got a pulse ox monitor and are watching her oxygen levels.  So far so good.  She did dip down to 93 which is the lowest they said we could keep her home but she went back up later.  

I have all the same less the cough and chest pain. Hubby has just the cough but tonight sounding nasally. Oldest just has sore throat. 

It is ridiculous.  We all have to sleep and live in separate rooms.  Wash hands or sanitize before we leave rooms, with masks on, carry wipes and wipe every surface we touch.  No one prepares food for anyone else.  Which is near impossible because O is so weak and frail she can't cook for herself.  And we can't order in because of SCD.  So GI said it is o.k. for me to prepare her food.  We were both infected anyway and her weight and health's more important.  

IDK if Crohn's has improved.  She is still going a lot.  Less blood so that's good.  And she gained a pound.


----------



## crohnsinct

Haha Maya she is sorta considering a G tube but now with the state of things in CA no way would they bring her in for the surgery especially given her Covid status.  The GI actually mumbled something about admitting her for nutrition but Covid....then she got it so all bets are off.


----------



## crohnsinct

Oh did I share the funniest part of all this?!  I got the vaccine on Thursday!  The very same day O and I started getting symptoms.  I though mine was a simple reaction to the vaccine but then when O got sick I thought twice but thought we probably just ran ourselves down.  Then that night my boss called and two residents of the shelter were positive so we figured we were next.


----------



## crohnsinct

Hey guys!  The Covid party is OVER!  In the end it was just the three of us.  Somehow my oldest and youngest escaped getting sick.  T probably because she is in that teenage stage where she spends all her time in her room FaceTiming her friends and playing video games.  It used to make me mad but now I am glad she did that!  

We all had a rough 2-3 days, hubby was the worst.  We were watching his temp and O2 sat hourly (via FaceTime obviously).  That is the hardest thing.  Having a family member sick but not being able to take care of them.  

We are still quarantining from each other through Sunday as that is the 10th day since my husband's test.  O and are are just really, really weak.  

O goes back to school Monday.  At least I am less worried about Covid now, although I am proof you could be reinfected but she only has 4.5 months left.  Ironically her room mate and her room mate's boyfriend have it now also.  The room mate moved out to live with the boyfriend.  

She is up 2 pounds to 113.5.  The steroids seem to have calmed things down a lot.  She asked her GI if she could reduce them this week but he said no.  So another week at 40mg then he said maybe step down to 30mg.  That shook us a bit because in the past when not a hospitalized flare, she was put on 20 max and was very aggressive about stepping down.  Even when she came out of the hospital she was discharged on less than 40mg  Just ugh.


----------



## Pilgrim

I must have missed that you were covid positive twice? When was this? Did you get sick before?


----------



## crohnsinct

Well I wasn't actually positive because it was the beginning of march before there were tests available BUT I presented with classic COVID symptoms and progression and tested negative for everything else so they told me to assume I was positive for COVID.  I only half believed them but then as more and more info came out I fit the profile perfectly.  And then I tested as having antibodies and now that I tested positive this time and saw that the course was exactly the same as the last (maybe not as bad as the first time), I am finally buying their theory that I had it in March.  

Hopefully now with two bouts AND the vaccine I am done with this bugger!


----------



## Maya142

You can absolutely get COVID more than once - I hope O will still be wearing a mask and social distancing!!

I'm so glad you got the vaccine CIC! We are hoping that my daughter will get one soon. I know i will sleep better when she has had it.

I'm glad to hear that you're both getting better. i'm worried about O going to school - will she have the energy to attend class, extracurriculars and cook for herself? Her weight is so low. Can you send boost or Ensure with her? That way if she is too tired, at least she will have something nutritious on hand.

Hope you and O start feeling better soon!


----------



## crohnsinct

Well I guess O’s situation is more precarious than we realized.  She is still chipper and frequency is still ok down to about 4 times a day BUT she just needed toilet paper I brought it in to her and there was a little blood.  I asked her to weigh herself and she is down to 111!  WTH?  Why can’t this kid gain weight....on steroids!  

That little bit of blood typically wouldn’t concern me but on 40mg of steroids for almost two weeks I would think bleeding would have completely stopped and frequency would be down to one normal BM. I honestly don’t think this kid has had a normal solid BM in five and a half years. She probably wouldn’t know what one looks like!

I really don’t want to send her back to school. I am concerned about her ranking when her tapers steroids and the possibility of needing the hospital and for sure that small country hospital by her school with no GI is over run with Covid.  I will fly her home before I send her there.


----------



## my little penguin

Has she been tracking calories ( my fitness pal ) to see if a she is eating enough but not absorbing 
Or b just not eating enough ?
Definitely something to add to the list

If your on steriods weight gain isn’t a given if her calories are low 
It only increases due to increased calories 
More than once Ds maintained weight while on steriods with een since his formula intake didn’t increase


----------



## crohnsinct

Definitely not eating enough.  Between her lack of appetite a little due to Crohn’s but a lot due to Covid and my Covid...not feeling up to be upping and making food and encouraging her to eat....I think it has just been a perfect storm.  

To add to the dilemma her room mate tested positive last Monday.  She moved out to quarantine with her positive boyfriend but I guess things didn’t go so well cuz he asked her to leave. So she technically is still in quarantine till Thursday and O is going home Monday.  I wonder how susceptible she is having just recovered herself and on steroids.


----------



## my little penguin

Is she willing to eat xyz because she has too ?
Not because she is hungry 
To get her weight up 
Things she generally likes but isn’t hungry for anything right now 
But ears because it’s breakfast or lunch etc


----------



## crohnsinct

Yeah. She eats just because she has to but Covid messed with all of our appetites.  So she gets full and nauseous really fast.  We have some high calorie snacks and I made a new batch of SCD Yogurt so peanut butter banana and yogurt smoothie here we come!


----------



## crohnsinct

I think now that I am feeling better I could watch her more closely but I won’t be at school with her.


----------



## my little penguin

I thought she dropped scd to get her calorie intake up since scd causes more weight loss which can increase the inflammation cascade .


----------



## crohnsinct

Surely you jest.  Nope!  The GI just ok’d expanding the diet a little so she was allowed to add some gluten free snacks.  That said I will confess that at two points when we all had high fevers and were really sick and ordering door dash,  I was so worried about her, I let her order chik Fil a.  So even those two really high calorie cheats didn’t help.  She also ordered Greek the other night and they sent two dinners by mistake and she ate them! 

I made her the Lois Lang bread yesterday and made her French toast with it today and a big pile of strawberries and blueberries. She ate two slices. This bread is very dense but small.

She asked for açaí bowl for lunch. Not very high in calories.

She eats a lot of RX Bars for snacks.

I think I might have an avocado in the house. I will ask her to eat that for snack.  Maybe pasta (red lentil of course) for dinner?


----------



## my little penguin

Meat ...big thick meatballs with her lentil pasta 
Nutritional yeast allowed ???
Cashews as fake cheese 
Still have her track in my fitness pal 
There are critical levels for calories to keep
Things functioning and it doesn’t sound like she is above that level


----------



## crohnsinct

Yeah, she eats a lot of meat even though she hates it.  She had a huge red bell pepper stuffed with meat and onions last night with a huge serving of rice (not typically allowed on SCD but they let her add it) and carrots.  I even sprinkled some cheddar cheese on it (she also hates cheese).  She ate it all.  

Nutritional yeast is not allowed.  

Haven't used the cashews lately but she does like the cashew sour cream....we usually poor it over veggies.  

A lot of nut butters.  

You are right.  She REALLY is NOT getting enough calories.  She is so lazy about getting up and cooking for herself and with me down sick I think it was just the perfect storm.  I think I can get her back up to at least 113 by Monday...maybe even higher.  

Uh oh....just ran through my room urgently to go to the bathroom...that would be number 6 for the day.


----------



## my little penguin

If she doesn’t cook for herself how will she get enough at school starting Monday ....


----------



## crohnsinct

Silly MLP!  Don't you know they can totally take care of themselves at school but turn into helpless nothings when mommy is around.


----------



## Maya142

> I really don’t want to send her back to school. I am concerned about her ranking when her tapers steroids and the possibility of needing the hospital and for sure that small country hospital by her school with no GI is over run with Covid. I will fly her home before I send her there.


Isn't there a remote option for school, since COVID cases are going up everywhere? I know she's had COVID but it is very possible to get it more than once. At M's school, there are very few students allowed back on campus (mostly seniors). So while there are some classes that are in-person, they ALL have a remote option, even science lab courses. All lectures are recorded because students may live in different time zones.

I know one school in our area is making students come back in person. But you can get a waiver if you are immunocompromised.

I  have read that patients on biologics are doing ok with COVID but those on steroids had increased the risk for complications:


> *Background and Aims*
> The impact of Coronavirus disease 2019 (COVID-19) on patients with inflammatory bowel disease (IBD) is unknown. We sought to characterize the clinical course of COVID-19 among patients with IBD and evaluate the association among demographics, clinical characteristics, and immunosuppressant treatments on COVID-19 outcomes.
> *Methods*
> Surveillance Epidemiology of Coronavirus Under Research Exclusion for Inflammatory Bowel Disease (SECURE-IBD) is a large, international registry created to monitor outcomes of patients with IBD with confirmed COVID-19. We calculated age-standardized mortality ratios and used multivariable logistic regression to identify factors associated with severe COVID-19, defined as intensive care unit admission, ventilator use, and/or death.
> *Results*
> 525 cases from 33 countries were reported (median age 43 years, 53% men). Thirty-seven patients (7%) had severe COVID-19, 161 (31%) were hospitalized, and 16 patients died (3% case fatality rate). Standardized mortality ratios for patients with IBD were 1.8 (95% confidence interval [CI], 0.9–2.6), 1.5 (95% CI, 0.7–2.2), and 1.7 (95% CI, 0.9–2.5) relative to data from China, Italy, and the United States, respectively. Risk factors for severe COVID-19 among patients with IBD included increasing age (adjusted odds ratio [aOR], 1.04; 95% CI, 1.01–1.02), ≥2 comorbidities (aOR, 2.9; 95% CI, 1.1–7.8), systemic corticosteroids (aOR, 6.9; 95% CI, 2.3–20.5), and sulfasalazine or 5-aminosalicylate use (aOR, 3.1; 95% CI, 1.3–7.7). Tumor necrosis factor antagonist treatment was not associated with severe COVID-19 (aOR, 0.9; 95% CI, 0.4–2.2).
> *Conclusions*
> Increasing age, comorbidities, and corticosteroids are associated with severe COVID-19 among patients with IBD, although a causal relationship cannot be definitively established. Notably, tumor necrosis factor antagonists do not appear to be associated with severe COVID-19.


I know O will not want to stay home but the fact that she's flaring, lost so much weight,  is on a high dose of steroids and has such severe disease, anything could happen. Especially since it's such a long journey to get home (there are no direct flights, right?). Just worried for her. I know she wants to graduate ASAP but she also doesn't want to end up with a stoma.


----------



## crohnsinct

Still 111 and a bad day.  Frequency up, tummy feels icky, accidents and bleeding.  Still going back to school on Monday.  

@Maya142 her school is having in person instruction.  They did give all the professors a choice and only one of O's professors is doing online class. She got special consideration because of the COVID to do online for the first two weeks but that ended on Friday and because the professors are not doing traditional online classes it really was just them setting up a computer to zoom the front of the classroom so half the time she couldn't see the whiteboard or the professor and hearing what was going on was a challenge.  

It's hard for me to tow a hard line with her because her GI is all, "O.K. great go finish up your senior year".  So I look like an idiot asking her to take it easy.  

She got a direct flight but after she lands it's a 2 hour shuttle bus ride out to where the school is.  It's a really long day.  I am thinking about getting her a hotel room until the roommate is done with her quarantine.


----------



## my little penguin

It’s really hard when A she is an Adult and B her doc gave his blessing for her to go back to school
That’s tough but she has been flaring every semester 
Hotel sounds like a good plan until the roommate is out of quarantine on Thursday.

Stinks they are not embracing online instructions as an option for those who need it


----------



## crohnsinct

Well, she is leaving.  At 3:30 in the morning.  I had to drive her to the bank tonight.  Conversations went like this: 

"Honey, I am concerned about you.  Not Covid but your Crohn's" 
"I know, me to" 
"ahhhh so you admit that this is not o.k.?!"
"yeah but there is nothing we could do about it" 
"O.K.  I feel better.  Just promise me that if things really start going south you won't wait too long.  Call me.  I don't want you in that tie regional hospital over run with Covid and no GI or colorectal surgeon.  If things get bad, call me and we will bring you home". 
"I promise" 

So if anyone else isn't going to get sleep tonight hit me up! I'll chat!


----------



## Jo-mom

I can only imagine how you are feeling.  Big hugs.


----------



## crohnsinct

Hey y'all!  She's back at school.  I know a lot of people don't agree with me letting her go but I figure it this way.  Crohn's is going to do what it is going to do whether she is here or there.  She is so happy at school.  With her friends.  In the classroom.  Getting ready to graduate.  Why should she stick around here?  The only thing we could offer her is rest.  She has no friends here and we have no family here.  So she would sit around out house wit nothing to do.  Better she be happy.  I think that will go a long way toward healing also.  

The good bye was fine.  Maybe because it was 4:30 a.m. and we were too tired to be sad  

It is easier for me if I don't see her, see her trips to the bathroom, see her dirty underwear in the sink.  What I don't see can't worry me.  Ignorance is bliss.  She might come home for the summer.  We'll see.  

She gets infusion this week so labs soon and we will see if the steroids are doing anything for this inflammation.


----------



## Delta_hippo

Sending virtual hugs.  Let’s hope the labs show something is going in the right direction.  

I wish she was home resting and being looked after but it is not in your gift - adding resentment into the mix if you’d tried to force it isn’t going to help either of you.  But I can only imagine how hard it is and hope you are over the worst of covid and getting a chance to recuperate.
Nothing practical to suggest I’m afraid just wanted to say thinking of you xx


----------



## my little penguin

So glad she is at school 
Even though all of our kids are our “babies” 
She is an adult and gets to control her life /health 
That’s wonderful she gets such joy from school 

Sending healing thoughts her way and yours


----------



## Jo-mom

Hey CIC - how's your daughter doing?


----------



## crohnsinct

She reports things are good. She is 112 on her scale at school. Could be a pound gained or just a different scale but at least we have a school baseline.

Based on her report about how she feels she went down to 30mg prednisone.

She is getting the Moderna Vaccine through the school on Tuesday! I get my second dose Thursday.

Thanks for checking!


----------



## crohnsinct

O had infusion Tuesday and blood labs posted.  CRP down considerably, most others nicely in range except darned glucose...AGAIN...she barely got close to range and now it is way up again.  That has to be the prednisone.  

She gained another pound so 113 now.  She reports appetite is good, frequency down to 2-3 times a day, no bleeding or urgency.  

Based on the above GI gave her approval to go down to 20 mg's of prednisone and hold there until cal pro comes back.  

She was turned away for the Covid vaccine because they want her to have 30 days from last day of symptoms.  They said not for safety but more for side effects because side effects are worse if you have recently recovered.  

I got my second vaccine today even though I also recently recovered.  They said I had to because I already got the first dose.  The other people I work with who also had Covid said the second shot really affected them and they felt like they had Covid all over again.  I am hoping if that happens it is short lived.


----------



## crohnsinct

O's calpro posted.  66!  

Good news is she is responding to the steroids.  This is much better than in the past when she only sort of responded.  

This calpro was at the 40mg dose but the test was done after 3 weeks at 40mg and a few days at 30.  We will wait and see what happens as she drops further but so far so good at 20 which started last Friday.  

Symptom wise she is really good.  Weight check on Thursday.  

Her school did not give her the vaccine because it was too soon after she had Covid.  I got the second dose about two weeks after I was cleared to get out of quarantine and it made me really really sick.  So good thing she delayed it.  

Hope you are all well.


----------



## crohnsinct

Weight 113. Status quo.  

Checked in with GI and RD.  GI is excited about low cal pro and symptomatic response.   

Reducing prednisone down to 15 mg's daily and when she hits 10mg she is to start back up on the budesonide.  

Darn.  I was hoping we were going to try this thing with no steroids at all.  Silly mommy!


----------



## Maya142

Thrilled to hear that symptoms and FCP are down!! That's wonderful news! I'm so glad she can enjoy her last semester!

Do you think it's the combination of the antibiotics and the steroids that have helped her? I had no idea that antibiotics could help so much in Crohn's!


----------



## crohnsinct

Weight up to 115! She admits to a little SCD cheating...ask me if I care. 

Prednisone reduced to 10mg's without adding budesonide.  GI wants to see how she does for a week at 10mg prednisone.  Maybe he is hoping to avoid adding back in the budesonide like I am.....


----------



## Jo-mom

YippeeYippee yay!


----------



## Maya142

Way to go O! I hope she's able to avoid Entocort...fingers and toes crossed.


----------



## crohnsinct

Boo!  O got her labs done Monday for her infusion that never happened because the 4.0 college student forgot to get her Entyvio ordered!  
But I digress.  

Her CRP is 121, electrolytes are all low, bilirubin high, WBC's are high end of normal but she is always lower than normal so this is pretty elevated for her.  H&H and albumin are normal but dropping a good amount and fast.  Some liver values low which is generally o.k..  Wondering if prednisone could've caused some wacky labs but the high CRP is pretty much an usually indicator of inflammation, eh? 

Ironically her glucose was fine.  Go figure.  

So we will wait for the cal pro before raising the alert level.  She says she is fine but we all know she has a skewed sense of fine.


----------



## my little penguin

Assuming she is weaned down quite a bit on pred
And now the inflammation is rebounding back to flare mode

please make sure the Gi is aware
The doc need the full picture
Of where she is at
Fecal cal
Frequency
And bloodwork


----------



## Maya142

Electrolyte issues could also come from weaning too fast.  Her body is not used to making its own cortisol. I know whenever M has to go to the hospital for a suspected adrenal crisis, they ALWAYS check electrolytes (after making sure she's not going to crash, obviously). 

But O is currently on more than the physiologic dose though, so I suspect MLP is right and she is flaring. Is she having a lot of diarrhea? That would definitely mess with her electrolytes.

That is a REALLY high CRP. That's worrisome. I agree - she needs to update her doc ASAP.

When is her infusion now?


----------



## crohnsinct

Yeah, I had thought the same thing @Maya142 ...about the electrolytes.  She is on 5mg daily dose now.

OK. I think I may have freaked you out a little.  Her CRP is 12.1 mg/dl range max's out at .9 but that would be 121 mg/L which has a max range of 10.  Does that make you feel better @Maya142 ?  

She says no diarrhea and only going 2-3 times but it is very soft and flare ribbons.  

Her infusion is tomorrow.  Tomorrow is also her day to update the GI and she said she will attach the lab report to her email.


----------



## Maya142

I assumed it was mg/L - still freaks me out! 121 is still very high when 10 is the upper limit. I mean, I know it's been higher in the past but wasn't it in the normal range last time?

I'm glad she doesn't feel too bad...that part does make me feel better. I'm guessing she hasn't had a virus or anything like that that could have raised her CRP?


----------



## crohnsinct

Yeah...it was 5 taken a week or two after she had Covid.  It was 108 when she was admitted that horrid summer and 240 when she was septic.  

She said maybe she has a little sore throat and a cough but again when she had mono not so much as a budge in CRP.  She also said she fell and hurt her knee but it isn't swollen and all that time she had the hip issues and the hip surgery her CRP never budged.  Just so weird that she feels o.k. and her frequency is down, no bleeding etc...but we are talking O here and we all know she has history of under reporting.  

Tomorrow is her weight check anther day to update the GI.  She said she will attach the lab results (they don't usually get them from this lab very quickly).  

I will let you all know what the GI has to say.  

She is still just taking Humira every other week and is down to 300mg Entyvio Q 4 so I guess there are some things we could still do.


----------



## Maya142

That is odd...she tends to have pretty dramatic symptoms when she is flaring.

I don't know if insurance would allow this but what about going back to 600 mg Q4? I know it's a super high dose, but she was doing better on it.


----------



## crohnsinct

I know right?  This kid usually shows symptoms way before the cal pro or CRP move.  Maybe she isn't telling us everything but maybe this disease activity is more the small bowel.  If it is, I don't know how much of an option the colectomy even is anymore...not thatch is even entertaining the idea but at this point she is steroid dependent and refractory...something has to give. 

I agree, she was better at 600 mg.  That would be my choice over moving Humira to weekly but if this is small bowel disease maybe move Humira?  

If calpro is elevated, I think she needs an MRE.


----------



## crohnsinct

She checked in with GI and sent him her labs. The only thing he mentioned to her was her low potassium and asked her to try to eat two bananas a day.

Based on her good report about symptoms he said ok to move to next level of prednisone taper which is add back in budesonide 9 mg daily starting today. Skip prednisone Saturday, use it Sunday, skip Monday use it Tuesday then stop and just use budesonide going forward.

The high CRP got his attention but he wants to wait for calpro before he worries about her Crohn’s.  Hopefully we will have that result by her telehealth visit next Friday.


----------



## crohnsinct

Calpro posted and it is only 127.  Double the 66 from 4 weeks prior but given the variability of this test still considered roughly the same.  

I guess this could mean small bowel disease or is more evidence that those wonky labs could be adrenal insufficiency but also could be a crazy blip or something unrelated.   

She has her appointment on Friday but I am guessing we are just pressing on and we will see how things process over the next 4 weeks.


----------



## Pilgrim

That's good news!


----------



## Maya142

Adrenal insufficiency would not cause such a high CRP...that is odd that her FCP is so low and her CRP is so high. Does she have any symptoms of an infection? Could her CRP still be high from having COVID? I know it's been a while but I can't think of anything else.

Adrenal insufficiency can DEFINITELY cause her electrolytes to be off and as she gets down to the physiologic dose of steroids, she needs to watch for symptoms. I would bring that up with her GI  - it can be very serious and scary - as you know, my daughter has had many scary ER trips and hospitalizations where it has been a big issue.


----------



## crohnsinct

It’s not Covid because right after she had Covid her CRP .5.  She says she had a little cough and maybe a little sore throat but nothing she would think about mentioning. She did say she fell and landed on her bottom and right after that her knee hurt. She twisted it or something. Not swollen or anything. Maybe that’s it?  But it was also not worth mentioning until I was asking her about any illnesses or injuries so I would be surprised if it raised her CRP that high.  

Today was her last dose of prednisone but she is back on 9mg of budesonide so I think she is above the threshold where we have to worry about AI?

Maybe the high CRP is the warning of an impending flare up? Maybe small bowel disease? Maybe nothing.

Symptom wise she is doing great.  114.5. Going 2-3 times a day. No blood. No waking at night to go.  So who knows.


----------



## Delta_hippo

Did she have her covid jab in the end?   Just wondering if that could have given her crp a funny moment.  The highest I got was 90 and I felt seriously not well.  Maybe the lab made a mistake?  I’d be tempted to run it again if possible because doesn’t fit the rest of the picture and it is seriously high.  You must feel like every time you think you can relax you get jolted with something else to stress about! Xx


----------



## crohnsinct

@Delta_hippo - look at you being all creative and thoughtful! I am impressed.  Alas, she did not get the Covid vaccine so that's not it.  But you get extra points for thinking of it  

I am going with blip for now.  luckily she gets infusion and labs every 4 weeks so we don't have to wait too long to serif it continues.  

It's just so crazy because like you, if her CRP get over 100 she is very unwell.  This just doesn't make sense.  Maybe lab error.....but all her labs were wonky so not likely.  

Oh the suspense of it all......


----------



## Maya142

I would also expect her to be very unwell with a CRP that high. I don’t think a fall would cause such a high CRP. Even if she has some inflamed joints, I wouldn’t expect a CRP that high. My kiddo’s CRP has literally been high for 4 years (only goes down on steroids) from her very refractory arthritis and I think her highest CRP was in the 40 range.

I agree that repeating it makes sense. Small bowel disease does sound like a possibility - has she had an MRE recently?

I missed that she is on Entocort/Uceris - yes 9 mg is way above the physiologic dose. Not sure what would cause the electrolyte issues then...


----------



## crohnsinct

@Maya142 She just started back up on the budesonide.  Prior to that she was on 5mg prednisone.  I think that test was at 10mgs though so that is surely able the physiologic dose right?  

If everything comes back in line for the next round of tests I am going to assume it was the steroid taper.


----------



## Maya142

If the test was at 10 mg then yes, it isn't because of adrenal insufficiency. The physiologic dose that your body produces is equivalent to 4-5 mg of Prednisone.  If she was on 5 mg when the tests were done, I think it's possible that her electrolytes were off because of tapering.

So you think the steroid taper could have caused the high CRP? That does make sense. Perhaps CRP goes up faster than FCP? I know FCP can vary significantly, especially if the lab lets the sample sit there for a while, so could it be possible that that test was not accurate? I know generally she has symptoms first and then those markers go up, but small bowel disease could be pretty silent.


----------



## crohnsinct

O had her GI appointment today.  He brought the R.D. in.  He was thinking the low potassium and sodium were diet related but RD said she has been on SCD long enough and never low so it was likely not diet.  He said he usually thinks diarrhea with these numbers but she reports she is good and fecal cal is good.  So basically no clue, let's see what happens with next labs. 

She asked him if she could drop SCD.  She is over it.  She doesn't think it helped and neither do I.  

He said this was a MAJOR change and he wasn't prepared for it but agreed only because it will help her gain weight.  He did say she has to continue to update weekly and get monthly labs including cal pro.  He doesn't agree with us that it wasn't doing anything.  He says that she was just so bad off that we didn't see the improvement and that it wasn't controlling disease but it was helping.  

He said he will keep her on budesonide as her body seems to need some level of steroid.  But we are switching to Uceris as Entocort releases in the T.I. and she needs it more in the colon.  He said if she flares again we will stay away from steroids and go to antibiotic cocktail.  I reminded him she is still on the antibiotics and he said we will increase dose.  

So I am just concerned that she just came off steroids on Tuesday and now dropping SCD, how will we know if she flares which drop it is attributed to?  I guess I am over thinking it.  I will let him be the doctor.


----------



## Jo-mom

Do you think she would agree to continue for a couple more weeks on SCD just so that you can at least determine if something changes, it's not because she dropped the diet?  Mothers. usually overthink but that's normal.


----------



## my little penguin

Please state to her 
Design of experiment(DOE) principles 
Independent and dependent variable 
You can’t change two things at once abd expect to know what had an effect 
Keep scd for 2-3 weeks 
Then drop it like a rock 
By then any effect from dropping pred should be known 





__





						What Is Design of Experiments (DOE)? | ASQ
					

Design of Experiments deals with planning, conducting, analyzing and interpreting controlled tests to evaluate the factors that control the value of a parameter. Learn more at ASQ.org.



					asq.org
				



See not mom talking 
Just proven science


----------



## Maya142

I do agree that it would be ideal if she could wait to stop the SCD. But she is a college student in her senior year and she has had to put up with a LOT in the last 5 years, including repeated hospitalizations, a hard diet and sepsis. What about doing it the other way - keeping her on 5 mg Pred + Uceris for two weeks while she stops the SCD? That might be easier on her.

Does she let you email her GI at all? It's something I would bring up with the GI but obviously she is over 18 and so I would guess you need her permission (my kiddo sometimes lets me write but she is NOT happy if I write without discussing it with her - but she is older than O). Perhaps you could discuss it with O and then share your concerns about changing two things at once.


----------



## crohnsinct

Next infusion and labs was 3/23.  H&H are falling rapidly and quite a bit.  Hematocrit is low but HGB is still in range.  Calpro is 1,960.  

No clue where we go from here but it is obvious to me that the low calpro was because of the steroids and it looks like she is steroid dependent.  She is thinking maybe move Humira to weekly or raise her Entyvio back up to 600mg.  You all know what I am thinking.  

In other news her pilonidal cyst is back.  It doesn't seem to be oozing and it isn't painful so probably just going to mention it in her weekly update and watch it.  

Ironically her weight is good (117) and her frequency is still only at 2-3 times a day so either the diarrhea is soon to happen or something else is going on.


----------



## crohnsinct

Well yesterday the wheels started coming off. Frequency way up.  

Frequency still up today and she started bleeding.

Miss Adult thinks she doesn’t have to tell the GI just yet.


----------



## my little penguin

Of course not 
Ugh


----------



## Maya142

> Frequency still up today and she started bleeding.
> 
> Miss Adult thinks she doesn’t have to tell the GI just yet.


Oh geez  that is worrisome.



> In other news her pilonidal cyst is back. It doesn't seem to be oozing and it isn't painful so probably just going to mention it in her weekly update and watch it.


Is she sure this is a cyst and not an abscess? Has her GI ever seen it?

I definitely agree with her that she needs either more Humira or more Entyvio. She's definitely steroid dependent at this point . I would think more Entyvio because it worked in the past but getting more Humira is probably easier and IF it works, it'll likely work more quickly.


----------



## crohnsinct

Entyvio actually never really worked.  That's why we added Humira.  After a few months on Humira they started pushing the surgery option.  Then he added antibiotics and she turned a corner.  But we weren't sure if it was antibiotics or Humira finally kicking in. But She was also on 600mg Entyvio so I definitely think the reduction kicked all this stuff off.  

She says she had a good day today so no need to alert GI.  I asked her what she was afraid of and she said she was scared was going to put her back on SCD.  I said, "not likely, more likely he will put you back on steroids".  But what do I know.  I am just a mom.  

She flies back to school tomorrow.  Graduation is 3 weeks away.  Here's hoping she can hold on long enough to get through graduation and get home.


----------



## crohnsinct

Oh and pretty sure it is a cyst.  No GI has ever seen it but she did see a surgeon and had it dealt with surgically back in Sumer of 2017.  It is in the same exact spot and looks exactly the same.  Not a usual spot for fistulas so really thinking it is a pilonidal cyst again.  We don't think there is an abscess yet because she doesn't have pain and nothing is oozing out but it is just a matter ofttimes I am afraid.


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## Maya142

I thought the 600 mg of Entyvio helped? I know it didn’t do enough, but I thought it helped some. But it’s probably easier to get Humira weekly - we have done that several times (both girls have been on Humira more than once) and it should help faster.

Poor kiddo - will she need surgery again for the cyst? Is that something that's done in the office or is it done in an OR with sedation?

Congratulations O - can't believe she is graduating!! I feel like she just started college! Is her graduation in-person or virtual? M's is virtual and she is really sad about not being able to walk.


----------



## pdx

Congrats to both O and M on their college graduations! I'm so impressed at what they have accomplished.


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## crohnsinct

The 600mg/Q4 kept her out of the hospital so I guess it did something but her calpro stayed high so we added the Humira.  Then a few months later scope showed that severe inflammation and they were talking partial colectomy.  So I guess you could say it all helped some because prior to that it was total colectomy.  Not that it much matters because both require an ostomy and as long as it doesn't involve a proctocolectomy there is still there chance at a reconnect down the line.  

There is a procedure they could do in the office for the cyst but last time it didn't work and she needed to go in for surgery with sedation and then bed rest for a few days.  

Her graduation is in person.  They are doing it in the football stadium to allow for proper social distancing.  10K kids graduating...not likely the distancing is going to be great.


----------



## Tesscorm

Just jumped in and saw the thread...  

First, good news...  Congrats to both O and M on their graduations!  With all they've struggled through, it really is an accomplishment beyond the norm!  Both moms must be very proud!  

Now, re O, I do hope this is transient.  I know it is likely more than a blip but, still hoping it can resolve!!


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## Delta_hippo

Just wondering if the thought of scd again is unbearable maybe worth looking at ibd-aid, it is similar but you can have oats, sweet potato, makes it a little more doable?  Phase one is hot on blending or soft texture which might help her absorb some goodness if she is flaring.  I’m not going to pretend it’s fun but I just thought if doc  says go back on scd, maybe worth suggesting as alternative


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## Maya142

I also have been wondering about other diets - isn't CDED more liberal? The SCD just sounds so hard to me and this poor kid is dealing with enough. I'm actually really impressed she stayed on the SCD so long.

I know neither Humira nor Entyvio has really gotten her away from the possibility of surgery. Even with the addition of abx and Uceris/Entocort. But since she is absolutely refusing surgery (or she was a little while ago) and she can't really be on steroids forever, I would guess upping the dose is her only option.

I did recently see a study about Xeljanz working on refractory UC patients. I can tell you from M's experience, a JAK inhibitor with an anti-TNF is way more immunosuppressive than Entyvio with an anti-TNF. But perhaps she needs that. Just throwing out ideas...

I know her WBC run low - have they ever considered immunological testing for her? Like they do for VEO IBD? Her case is just so refractory. M is in a similar place with her arthritis, and that is in the works for her. We've done some, but they're doing whole exome sequencing now.


----------



## crohnsinct

We did IBDAid years ago.  I am fuzzy in the details.  CDED is a tad more liberal in that once you get to the final phase you are allowed 2-4 cheat meals a week and allowed a serving of gluten each day.  It is getting there that is the problem. First 6 weeks of EEN, then very limited diet etc.  

I don’t think it is the particulars of any diet that really bothers her as much as the extreme restrictions.  She says market shopping takes forever trying to read labels.  Looking for recipes online is the same and forget trying to find a restaurant to eat at.  It’s possible and she was a trooper for quite awhile but when it doesn’t even help it is hard to stay motivated.

She is back at school and reports frequency is down and no bleeding. Funny how that works.


----------



## Maya142

> I don’t think it is the particulars of any diet that really bothers her as much as the extreme restrictions. She says market shopping takes forever trying to read labels. Looking for recipes online is the same and forget trying to find a restaurant to eat at. It’s possible and she was a trooper for quite awhile but when it doesn’t even help it is hard to stay motivated.


Honestly, I'm SO impressed she did it all by herself for so long. My kiddo tried gluten free and barely lasted 4 weeks (though she was about 15 then so much younger). She ended up doing EEN for 16 weeks this summer and it was honestly truly horrible for her, mostly because her formula goes through a J tube into her small bowel so her stomach was always empty and she was always starving.

So kudos to O for doing the SCD for so long!! I'm guessing the answer to this is still a no, but would she consider EEN through a G tube once she is home?


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## crohnsinct

UGH!  

That pretty much sums it up!  

Crohn's wins.  

I am speechless and out of ideas.  Maybe you guys have some? 

Miss O never told the GI about the second bad day with the bleeding.  The third day things seemed to turn around and she only went 2 maybe 3 times and she swears no bleeding.  She went back to school the 4th day.  

Kept updating GI weekly.  Weight stable.  Frequency 2-3.  No blood.  

He said, "great.  Let's switch to Uceris because that releases more in the colon than TI."  

Next week same update and GI says "great maybe the Uceris is helping the colon and keeping things in check.  Let's get a repeat calpro"

Repeat calpro results posted today and they are 3,650.  

What am I supposed to do with that?  

She "says" she feels fine.  Maybe frequency is up to 5 but that's it.  Also swears no blood.  We faceted today because she was in a fender bender (she is ok and wasn't her fault) and she looks awful but IDK if it is stress over finals and the accident or what.  

Why on earth would calpro be so high and her report things are still o.k.?  The wheels usually fall off in the thousands for her.  

I guess she could be under reporting just to get through to graduation next weekend.  

Could it be that we switched from budesonide to Uceris?  Maybe now the TI is freaking out because we moved to protecting the colon more?  Could there maybe be inflammation higher up?  But small bowel disease doesn't raise cal pro this high.  Has to be her colon/rectum right?  Unless things are so inflammed that nothing can come out? 

No clue what this GI is going to say.  Probably go back on SCD.  I am hoping also lets get a scope and MRE when she gets home.  It's been a year since the last one that kicked off all the colectomy discussions.  Plus she has had disease for 10 years now so time to start cancer screenings anyway.  

Anyone?


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## pdx

So sorry to hear all this. Unfortunately, I don't think SCD is going to touch this. Maybe EEN with an elemental or semi-elemental formula could help, but that probably can't happen until she's back home. When is she scheduled to come back?


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## Pangolin

Even when my son's colon looked good, small intestinal crohn's with a stricture got his calprotectin over 13,000 at times without severe symptoms.

I think changes in the FC number need to be considered with some care. It may be possible to use a medicine to bring FC down without actually improving the underlying disease state, and likewise a spike due to a medicine change doesn't necessarily mean an underlying worsening. A high number does mean there's still a problem, but a low number doesn't necessarily mean things are fine.


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## crohnsinct

@Pangolin yeah unfortunately the only time O can get a low number is when she is on steroids.  I really do think we are looking at refractory, steroid dependent disease here.  I am just wondering why she isn’t worse off and if this time it is her small bowel.  If it’s the small bowel then we don’t have to talk colectomy again but if it is her colon I am afraid she is out of options.


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## Pangolin

I know she's tried entyvio, but has she tried stelara yet, or stelara plus entyvio? Stelara has the best anecdotal reports, and the stelara plus entyvio combo has some good case reports in very hard cases.

I bet EEN with a semi-elemental formula would help, too, if she'd be willing to do it.


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## Pilgrim

H has no large bowel symptoms and her calpro was recently over 4,000. She just feels "tired".


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## crohnsinct

She has done EEN but it only helps while she is on it. As soon as she reintroduces food the inflammation comes back.  

Her team is not as enthused about Stelara as some. They say their experience with it for the colon is not good. Plus the big thing with her is trying to switch meds leaves her very vulnerable. That’s what landed her in the hospital that whole summer. Even with bridge therapy if vanco stopping Remicade which only worked a little and moving to Entyvio got her septic. I doubt they would entertain switching Humira for Stelara with the long onset of action. That would mean steroids for months. But I am sure she would pick that over colectomy.

@Pilgrim i was thinking about H when I got the results.And your doc didn’t go in and look either right? Just increased meds?

I guess she could increase Humira to weekly but I wonder if Humira is doing much any more.


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## Pilgrim

crohnsinct said:


> She has done EEN but it only helps while she is on it. As soon as she reintroduces food the inflammation comes back.
> 
> Her team is not as enthused about Stelara as some. They say their experience with it for the colon is not good. Plus the big thing with her is trying to switch meds leaves her very vulnerable. That’s what landed her in the hospital that whole summer. Even with bridge therapy if vanco stopping Remicade which only worked a little and moving to Entyvio got her septic. I doubt they would entertain switching Humira for Stelara with the long onset of action. That would mean steroids for months. But I am sure she would pick that over colectomy.
> 
> @Pilgrim i was thinking about H when I got the results.And your doc didn’t go in and look either right? Just increased meds?
> 
> I guess she could increase Humira to weekly but I wonder if Humira is doing much any more.


For H the doc didn't scope. He did levels and fcal. Quite frankly levels were very high but we chose the dose increase anyway to make sure we used it for all it was worth. It probably wouldn't hurt to increase O's Humira to weekly dosing however if you have to wait 3 months to see if there's improvement...that might be an issue in her case.


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## crohnsinct

Well O had her infusion Friday and wrote to GI asking if he wanted another calpro given she just got one the week prior.

He didn’t answer the question. Just said, “yes I saw the result yesterday-3650, how are your symptoms”.

She said frequency up a bit to 5-6 but no urgency or blood. Weight down a little at 115.5.

He said,”ok please check in next week and we can decide if we want to intervene”.

She went ahead and got the calpro anyway. Just in case he decided he wanted it. I think she is also hoping the 3650 was a fluke and it will come back a lot lower. Even if it comes back in the thousands they will both likely be encouraged by that and wait another month.

Blood labs posted. H&H are in range. Albumin in range. A few labs low or high and CRP just 1.2 or 12 depending on which measurement you use. So nothing earth shattering.

She will likely come home in two weeks and be home for the summer.


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## Maya142

> Plus the big thing with her is trying to switch meds leaves her very vulnerable. That’s what landed her in the hospital that whole summer. Even with bridge therapy if vanco stopping Remicade which only worked a little and moving to Entyvio got her septic. I doubt they would entertain switching Humira for Stelara with the long onset of action. That would mean steroids for months. But I am sure she would pick that over colectomy.


I know she isn't a fan of this idea, but what about doing EEN as the bridge therapy? Isn't Stelara supposed to work well for small bowel disease? Plus it has been approved for UC, so it must work for colonic disease too. She could do EEN through an NG tube that stays in (since she will be home anyway) or she could have a G tube placed considering her weight has been an issue for quite a while. It's really not a major surgery - M was inpatient for 2 or 3 days because she had gotten Refeeding syndrome when she had an NJ tube, but most kids are only kept overnight.

You could even do steroids and EEN if she needs that to prevent her from becoming septic.

I definitely think she needs scopes and an MRE to figure out where she has active disease and how bad it is. You need to know if she has strictures,  fistulas, abscesses or severe ulceration. Plus, since she's reached the 10 year mark, she should be having regular scopes anyway.

You could try going back to 600 mg of Entyvio or weekly Humira. Weekly Humira would probably work faster. To be honest, if her FCP is that high, I don't think the SCD is going to do much...

I also think she needs to tell her GI about the bad days she had a while ago when she had lots of bleeding - I know she really doesn't want to but it's important for him to have all the info.

Sending big hugs. It's a very tough situation.


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## Delta_hippo

Don’t write off stelara as an option.  I started at the end of last year and it’s dropped my FCP to 140 and we are talking disease that azathioprine, prednisolone, budesonide, remicade, entyvio and double entyvio couldn’t manage.  Long may it last.  On ibd-aid and various supplements too.
I know at one point they were thinking of trying after surgery so had the best possible chance.
Things sound so tough for poor O.  I was hoping once graduated she might be more up for een, didn’t she say she would consider a tube as long as not at school?  
I wonder if that would help her stabilise with a view to scope to check where things are at?  But must be hard to feel motivated for miserable feeding situation when not feeling too poorly in herself.
Let’s hope the next FCP comes in lower - by a lot 
Otherwise my thoughts would be een just to try and get on top of it all and then scope or review meds
There is stuff on the horizon and some of it coming from a totally different angle (qu biologic in Canada, MAP vaccine in the UK, E. coli phage therapy etc) so could be down the line that a totally different approach suits much better, but for now fighting one day at a time seems to me the poor girl just needs a break and to get some goodness in.  But much easier to advise than to do I know xx


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## crohnsinct

You are not going to believe any of this.

Each Friday O updates GI. Her frequency is only up to 5-6.No urgency or blood. Weight 116.

GI says “great. Please update me again next week. BTW your CRP is up a little which means systemic inflammation which is why you are on adalimumab (vdz for guy specific inflammation).”

So sounds like more wait and see.

We go to see her for graduation and she uses the bathroom 4 times in the first hour we are there. Next day more of the same. Plenty of urgency. Stop the car, pull into gas stations etc. she looks really thin. Psoriasis is on fire.

Her calpro from infusion posts and it is 433! How the heck did it go that far down with no intervention what so ever?

Now I know things seem pretty bad when you are celebrating 433 but heck yeah I’ll take it. So looks like no scope or anything in her near future. Just some more wait and see.


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## Maya142

Honestly, the fact that her FCP is varying so much from one month to the next suggests that they should scope - to figure out what the heck is going on in there!! Her GI is basing her entire treatment on one test and we know that test is accurate but can also vary a LOT. Her CRP is up, her symptoms are increasing and her FCP is far from normal - to me, all that says is SCOPE! Plus MRE to re-stage her disease. She is finally going to be home for a bit - this is the time to do it!

It also sounds like she is reporting her frequency is 6x per day  but if she is going many times in 1 hour, there's a good chance that's not accurate.

I know she will hate me for saying this, but I really think she needs a scope! Partially because I'm thinking that if she does need the surgery, she might want it done in a pediatric hospital with the chance for reconnection in the future vs. with a new adult GI.

On another, much happier note, congratulations to the indomitable O for getting through 4 years of college (in a tough program!) while in a serious flare! She is certainly a very determined and resilient kiddo and I have no doubt that she will be very successful in grad school - no matter her health situation. She is the definition of a success story and I am so very proud of her!


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## crohnsinct

O had her regularly scheduled appointment with the GI.  They determined that Uceris isn't working so dc'd that.  Adding in sulfasalazine but he is concerned she is likely to have a reaction (extreme itching) due to her very sensitive skin and on fire psoriasis.  If she can't tolerate sulfasalazine she will try Lialda but he wants sulfasalazine first because it gets deeper tissue penetration.  

He also doesn't like her weight so wants her to really concentrate on trying to gain a few pounds.  

Took Humira levels but she is a week late due to insurance issues so those are likely to be useless and will end up increasing her Humira to weekly.  I guess I shouldn't worry we are going off less than ideal levels, the disease activity tells us she needs it weekly anyway.  

She told him she thought she was best with Entyvio 600mg Q4, Humira, budesonide and antibiotics.  He said he doesn't want to go back to 600 because she developed Leukopenia but they can revisit it. 

That's it.  I am not happy they aren't scoping or doing an MRE to make triple sure this is really just her distal colon and no small bowel involvement or that her colon isn't a mess but she is an adult and I am just a mom.


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## crohnsinct

No bad reaction to sulfasalazine. 

Latest update to GI.  Frequency is 7-10 times a day.  She is bleeding frequently, not the fill the toilet amounts but enough to be concerning.  Mucus.  Tenesmus.  Oddly things aren't total liquid.  There is urgency and there have been accidents.  Today seemed a little better than earlier this week.  Maybe sulfasalazine is kicking in? 

GI would like her to add Imodium twice a day to try to get control over the frequency. Yeah, I think that is odd. Seems to me getting control over disease activity is a better way to lower frequency but what do I know. He did suggest Imodium last year saying we had to retrain the bowel. So maybe he is thinking the frequency is a retraining issue again. I tend to think it is an inflammation issue. Plus last year he told her not to use Imodium if there was bleeding but now all of a sudden it is o.k.? 

Humira levels not back yet so no clue there.  

She has her next infusion on Monday so will run blood and fecal labs then.


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## Pilgrim

Ugh and grrr on the Immodium.


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## Maya142

> Seems to me getting control over disease activity is a better way to lower frequency but what do I know. He did suggest Imodium last year saying we had to retrain the bowel. So maybe he is thinking the frequency is a retraining issue again. I tend to think it is an inflammation issue. Plus last year he told her not to use Imodium if there was bleeding but now all of a sudden it is o.k.?


I agree that there is an inflammation issue here. Could O ask about Entyvio at 600 mg again, considering symptoms are getting worse? Or upping Humira to weekly? I know Sulfasalazine is used in UC, but we have always been told it's a pretty weak drug and MTX is more effective, though that may be different for arthritis.

I hate to say this but I wonder if he's suggesting Imodium because she's kind of been through all the options he has? Remicade, Humira, Entyvio, Tacro, lots of steroids in different forms, MTX, antibiotics etc. Stelara or Xeljanz might be an option (I know Xeljanz is only approved for UC but considering he's giving her UC meds anyway, maybe it's worth a try).

Would O be open to getting a second opinion?


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## crohnsinct

No second opinion because she knows what they will say.  She is sticking with the GI she has wrapped around her finger.

He won't up the Entyvio because she got leukopenia or so he says. 

I agree Maya....he is just throwing whatever he can at her to keep her out of the hospital and keep her somewhat comfortable.  Plus I think given what happened the last time she switched meds he is scared to attempt a switch when these are sort of working....if you call this working.

He has increased her Humira to weekly and it was approved by insurance.  She took her first weekly shot this weekend....so far nothing but it will take time. 

Her most recent calpro posted and it is 2,746.   

There is still a fair amount of room to increase sulfasalazine. 

I am guessing he wants to wait and see if the weekly Humira helps so waiting for the next infusion and cal pro. 

That's all folks!


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## Maya142

> No second opinion because she knows what they will say. She is sticking with the GI she has wrapped around her finger.


Doesn't she have to switch to adult care since she has graduated from college? All of my daughters' pediatric specialists only kept them till they graduated from college. M just graduated and she will be switching from her last few pediatric specialists soon to adult ones. But of course, she is several years older than O.

Really sorry to hear her FCP is so high...yikes. I'm worried that she may be heading towards a hospitalization or sepsis if she continues like this. 

I'm glad he upped Humira - at least that's something stronger and more likely to work than Sulfasalazine! If that doesn't work, perhaps Stelara is an option? I know he's worried she will flare while you're waiting for it work, but she's flaring anyway. Plus, a couple posters (@Pangolin) have mentioned their kids responded to Stelara relatively quickly. Should help her psoriasis too...


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## crohnsinct

O has now developed scleritis and lost another 5 pounds (now 112).  

Her GI said her labs indicate she has a high burden of systemic inflammation and the scleritis is a sign go high inflammation in Crohns.  He said she has no other choice than to go back on steroids.  

He requested that he, her and I get together for a chat.  We chatted.

He feels Entyvio is not working.  Humira might be helping.  She is on LOTS of meds with a high level of immune suppression and we HAVE to avoid steroids.  This is a short burst to calm the scleritis but we need a plan.  

She is running out of phamaceutical options.  There is 1 option left (Stelara) and that has maybe a 30% shot at working.  There are promising new meds in the pipeline and he doesn't want her to be discouraged but there is no guarantee with them either.  It might be time we admit that surgery is our best option. 

She wouldn't.  

So new plan is to give weekly Humira 3 weeks to see if it works.  If it doesn't go to scopes, screen for cancer, evaluate disease status.  If no cancer and colon isn't a complete mess, then drop Entyvio and add Stelara.  

She will need bridge therapy and it can't be steroids and she failed Tacrolimus.  So EEN it is.  She won't be home again until December so there might be quite a few flares between now and then.  His suggestion is during scopes have g tube placed.  She wasn't thrilled.  We will see if she can sweet talk him into considering drinking it or NG tube. 

Who knows.  Weekly Humira might surprise us.  Especially after this week of steroids.  Stelara might surprise us.  It might get us to another drug being released.  O might surprise us and finally agree to surgery.


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## my little penguin

Hugs to you abd her 
The whole thing is very difficult to process


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## Pilgrim

I hope she goes for the g-tube. It sounds like a reliable way for her to do EEN and....not back out too soon (like as soon as she feels better). Stressful decisions for a bright young woman. I hope that whatever she decides is the combo that works. If she is at home - also good.


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## Pangolin

I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse. My son had red eyes and eye pain from Remicade. We went to an ophthalmologist, and nothing but dry eyes was diagnosed. Everything went back to normal after Remicade. Still, I wonder if it would have progressed to scleritis if he'd stayed on the Remicade.

Don't let them tell you "this is just the disease getting worse" when it's really a drug side effect.


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## crohnsinct

Thanks @Pangolin but honestly she has been on biologics for 10 years now.  Her disease is raging.  Fecal cal consistently well over 2000 and as high as 3650.  Her symptoms are insane and she is rapidly losing weight.  I am buying the scleritis is a function of disease activity. Plus the steroids are helping it.

She had way more side effects from Methotrexate than she ever did with biologics and even if the scleritis were drug induced like her psoriasis dropping these meds isn’t really an option lest her Crohn’s land her in ICU…again.

Dropping Humira for Stelara isn’t an option because then we are treating her with two drugs with the lower success rates and we already know she is a non responder to Entyvio so Entyvio and Stelara doesn’t make sense.

I find his strategy interesting though because all insurance is clamping down on biologic use these days. Denying short frequencies, asking people to move to bio similars.

We got Entyvio and Humira approved and we think it went through easily because Entyvio goes through medical and Humira through pharmacy benefits and the two sides don’t always talk. But Stelara will go through pharmacy and I am thinking not likely insurance will approve two injectables.
We’ll see.


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## Pangolin

We had to do an appeal for Stelara approval, and then we had to do a lot of pestering to get the Stelara injections properly authorized.

I can only speak of my own family's experience, but my son had more limited problems off Remicade with much higher fecal calprotectin (over 10,000) than he did on Remicade with fecal calprotectin under 500. In other words, the anti-TNF was causing various nonlocalized effects that could easily be confused with extraintestinal manifestations or disease worsening. We know they weren't simply aspects of the Crohn's because they got better after some time off Remicade. The problem with a situation like that is that there's a temptation to add more medicines in order to deal with the side effects caused by the first, and the result can be a cycle of iatrogenic harm. Doctors don't have a good understanding of this.

Anyway, Stelara plus Entyvio has some impressive reports like this one: https://www.hindawi.com/journals/crim/2017/5264216/


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## Delta_hippo

Oh I am so sorry to read this and what a frightening and miserable situation for you all.  
I was very pleasantly surprised by Stelara but like all the drugs no guarantees.
Surgery might be worth putting off discussing until after scopes because then they might have more idea about how likely it is they could do something temporary and reversible which is easier to get your head around.
All I can bring to the party is the idea of adding herbs to the vegan thing she’s trying- I am not an expert by any means but have been drinking a gut soothing tea and slippery elm taking turmeric and reishi since reading a website by a NZ herbalist called Richard Whelan.  Just watch if she uses turmeric (supposed to help general inflammation) can inhibit iron absorption.  I have iron in the morning and turmeric at night.
I think a 3 week window will be long enough to flag if diet/ weekly humira/ any of the above are enough to start turning the tide.
Also feel like, as her symptoms are so harsh, liquids must be easier to digest a little?  I know she isn’t doing ibd-aid and you’ve been there but the website has some good easy absorb ideas in their phase one.
Also, and this is totally none of my business, I read your post as if she is going somewhere til December?  And can’t help feeling her body is waving red flags that she seriously needs to rest and put all her energy into healing. Sorry if that is the wrong thing to say it is meant kindly! I get the impression she is brilliant at soldiering on but maybe this is not the season for that.
Anyway.  I will keep praying xx


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## crohnsinct

Hmmm @Pangolin.  Interesting article but unfortunately Entyvio is an epic fail for her.  It has been a year and a half and she is still massively inflamed so we are dropping it.  Not until we get insurance approval on the Humira/Stelara combo though because otherwise then she would just be left with Humira and Humira alone won't be able to cut it.  Of course this could all be off the table if they find pre cancerous lesions or her colon is blown to bits.  Then it will be straight to surgery.  

@Delta_hippo Thanks so much for your post.  We always take what you say as kind and caring. You are preaching to the choir here.  I have been asking her to take a semester or summer off for years and she will just not have it.  Ya know, 21 and invincible.  I guess I probably drove my mother nuts with some of the decisions I made but I don't think the consequences were so dire.  

For some reason I do have hope in Stelara.  Maybe it was Pangolin's recent post, maybe it is the good stuff I am reading lately.  I know the numbers aren't in her favor but 30% is 30%...She has to be in the lucky minority at some point right? 

So Hubby has a plan.   BRIBERY!  He has offered her a trip to Hawaii before surgery and a trip to Disney after so she could finally enjoy the park without worrying about bathroom issues.  Some kids get kittens (@Maya142) others puppies (@my little penguin) so I guess I can't complain about a trip....as long as I get to go also


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## Maya142

> I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse.


Anti-TNFs are very safe drugs. There are now 20 years of experience with them. My children would not be able to walk without them - I can guarantee that. I have seen the damage done PRIOR to the existence of biologics - my husband has needed 5 hip replacements and needs his ankle replaced. He also cannot turn his neck properly because his cervical spine is now fusing. He can't walk for long distances due to his ankle.  He had no treatment options except an NSAID. My daughters, on the other hand, even the one with severe AS, have damage that is not even close to comparable. It's painful and miserable for the younger one, but she has avoided major joint destruction and deformation unlike her dad (except for her jaw joints). That is due to anti-TNFs and other biologics.

And @crohnsinct's daughter nearly died - Remicade saved her at diagnosis. I'm not sure if that is a story you read, but she became septic. And she lived in remission for much of middle school and high school due to Remicade.

This is not the time or place to be arguing about anti-TNFs, when someone's child is facing very serious disease and multiple complications and possibly an ostomy - that is hard enough for a parent to deal with. No one chooses to put their child on two biologics. It is done out of necessity. Plus, O did not even develop paradoxical psoriasis -  if that were the case, it would have gone away when she was on Entyvio. 

ALL drugs have side effects. My daughter developed drug induced Lupus on Entyvio. There are also reports of spondyloarthritis/AS worsening on Entyvio. My daughter's certainly did.


----------



## Tesscorm

I really am so, so sorry to read that O is in this position!  Ugh!  I really wish she'd catch a break!  I'll be hoping/praying that the humira/stelara plan works for her!  It's so much for O to consider, big decisions.   


But, I do like the bribes!


----------



## pdx

Hope the EEN buys you all some time to figure out what's going on and what treatment will work best. Hang in there!


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## Maya142

@crohnsinct Bribery WORKS! I'm actually serious about the puppy or kitten - it helped my daughter's mental health SO much. It made something very hard bearable for her. No matter how sick she is, no matter how much pain she is in, the one thing that always makes her smile is her cats. Instead of focusing on the NJ tube, that summer she focused on caring for her kitten. And now whenever she is down or not feeling well, all the cats migrate to her room. I don't know how they know, but when she's having a bad day, they're there. And they truly always make her feel better. Her kitten actually is officially an emotional support animal, so she could take the kitten to school with her.

Anyway, back to being malnourished. It's absolutely true that it affects how you think. M was also not thinking straight due to malnutrition. She now says she really didn't understand how bad it was to lose so much weight. I think the only reason she agreed to the NJ tube was that her psychologist explained to her that her organs truly would shut down if she continued to lose weight - she had already been diagnosed with Refeeding syndrome and an arrhythmia, as I'm sure you remember. It was something one of her doctors had said, but I don't think she truly believed it till her psychologist (who works in the GI dept) explained that once your body has used up all your fat for energy, it starts using muscle. Your heart is a muscle. She was so, so thin - it was horrifying. She had lost 20+ lbs and she didn't have any extra weight to lose to begin with. Her life changed dramatically because of the tube. She could not believe how much better she felt once she was getting 2000+ calories per day and was actually absorbing them. Her bone density increased - from osteopenia to NORMAL bone density (on the low side, but still normal!). Bone density can increase into your early 20s for females - O does not have to live with brittle bones.

And she had all this extra energy!! She just couldn't believe how good she felt. She was almost bed bound - just so tired all the time. School became easier. She had been doing well, but once she got the tube,  it was a lot less effort. She stopped losing hair. Her period came back after a year or two of no period. It really, really was life-changing.

In O's case, perhaps she could do 10% food to make it a little easier on her? M had a VERY hard time with EEN but part of that came from the fact that she has a J tube and so her stomach was always empty and she was always starving. It was absolutely miserable for her,  but with a G tube, O should not have that problem.

Anyway, I think she agreed because she trusted her psychologist (in addition to the promise of a kitten, of course!). I honestly think O needs to start preparing for surgery and one of the ways to help her adjust is seeing a psychologist regularly. At first, they don't need to even discuss surgery. She just needs to be able to talk through all of this because it is a LOT for anyone to handle. It will take time for her to trust her psychologist, but she needs help processing all this. I actually think placing the G-tube is a great idea because once her weight goes up and she is able to think more rationally, then she may have an easier time with thinking about the ostomy.

An ostomy is hard at ANY age - it's a huge change for her. But it could greatly change the quality of her life. I know she has lived with awful symptoms for a long time, but can you remind her how her life was not controlled by the disease when Remicade was working? She will be able to do SO much more when her life isn't ruled by Crohn's. i mean, look at what she has accomplished with raging disease - without it, I think the sky's the limit. She'll be able to go running without having accidents. She'll sleep through the night. She won't be tired all the time.

Sending big hugs!


----------



## crohnsinct

Hi gang!  

O finished the prednisone last Friday. Over the weekend she lost her appetite, lost weight, frequency went up and more bleeding.

Yesterday and today she felt bad. Dizzy, lightheaded and bad headache.

Today she checked her BP and pulse and her pulse was between 123 and 144. She wrote to GI.

She is admitted. The plan is to get fluids and a blood transfusion.

They are placing an NG tube tonight.

She will have scopes tomorrow.

Originally her GI wanted her to get a G tube during scopes but the attending feels like that is too drastic and that with a patient like O in the condition she is in that EEN might not even work so why do a surgery for something we don’t know will work. She also said that Humira weekly might work and we might not even have to do EEN.

So she will get NG and training and give it 5 weeks. If at the end of that time she is doing great, she will likely go in for G tube. If not, idk what.

Of course if we add EEN and weekly Humira at same time we won’t know which thing helped but I guess since she is inpatient again who cares. Just make something work!


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## my little penguin

Hugs to you and her 
Normal protocol is ng first 
See if it work 
Then g tube 
But she needs een from a nutrition standpoint 
Until she is stable 
Hugs


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## Pilgrim

I'm glad she wrote to GI - not an easy step knowing tough days ahead. Hope the NG tube does wonders and allows Humira to work. 

Do you get to sleep in that ultra comfy fold out chair in her hospital room tonight?


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## pdx

sorry that she is doing so poorly, but I think the plan sounds good. And in our experience, treatments can be synergistic, so I think it's great to do EEN and increased Humira at the same time. The increased calorie absorption due to EEN will probably make the more frequent Humira work better, which will reduce inflammation, which will increase the absorption of nutrients which will...

Fingers crossed that things look up soon.


----------



## crohnsinct

Well she threw up three times with the NG tube in and at that point it half came out and the doc figured she would keep vomitting and no prep would stay in so just pull the tube and let the kid drink prep and we will figure out next steps tomorrow with the GI team.


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## crohnsinct

...and now she is vomitting the prep and it is coming out red.


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## Jo-mom

I am so sorry that O is suffering right now, and that you are also suffering.  Please continue to keep us posted.  We are there for you.  Hugs.


----------



## Lisa

Oh my...hoping they get things under control and area able to scope - sounds like there may be issues all over and not just in the colon.....please keep us updated!


----------



## Delta_hippo

Oh gosh.  Sounds like she is in the right place.  If there are other signs of possible perforation (fever, high crp) then they might decide it is safer to move straight to surgery rather than scopes so brace yourself.  Poor girl xxx


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## Pilgrim

I'm so sorry to hear this. It sounds truly scary. Praying she can be stabilized.


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## pdx

Hope she is doing better now. Thinking of both of you.


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## momof8yrold

I am a silent follower of your thread. Keeping you & O in my prayers. Stay strong my friend


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## Pangolin

This is scary. I hope they can stabilize her and figure things out there. Maybe full TPN/gut rest could allow a little breathing room while the very tricky balance of medicines is worked out?


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## Optimistic

Sending prayers and healing energy. 

Can’t tell you when I was last on this site, many years. Something made me log on today. So glad I did so I can join Team O.


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## crohnsinct

Scope done.  Last scope was 15 cm's of severe damage.  This one is 30 cm's.  

Last scope TI was fine.  This one the TI was frozen open.  Could be stenotic.  We are going to watch it for now and wait and see what biopsies say. 

She was in pretty bad shape.  Required fluids, stress dose of steroids, bleeding etc. 

Found a polyp but likely inflammatory. 

Need to wait for biopsy results. 

Staying the night for observation given BP trouble.  

She is scheduled for G tube surgery on Monday.  We can be discharged and come back.  

The team feels she is not a good candidate for G tube and EEN controlling disease.  They feel strongly that if she is going to have surgery the better option is a port with TPN and the diversion.  Or even just the port with TPN as then we are bypassing the GI tract altogether.  

O signed the consent for G Tube but we will all talk again tomorrow before discharge.  She can eat for now as she will be doing 8 weeks no food.


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## crohnsinct

Her GI just emailed me.  The port and TPN is a Gard no from him given she is away at college.  Cross that one off the list.  

So now we just wait to get Humira weekly approved and see if that and EEN works.  If so, wait to see if we can stop EEN without her flaring.  If recant then try Stelara I guess.  

She has a virtual visit with GI next Friday.


----------



## Pangolin

Hi, this is Pangolin's wife. He sometimes shows me O's updates because he worries about her, and so many of them are so heartbreaking.

I stole the phone from him because of my utter dismay that O's doctor would refuse to treat her properly simply because she is in college???

Is that even legal?!

She has been literally vomiting blood, and they want to discharge her from the hospital and have her try to put food through there?  That's not right. Shame on them. They need to heal her before they can do that. I know they'd need to keep her in the hospital to do a port/TPN, but if that's what she needs, then that's what they should do. 
Poor, poor O. Of course I don't know what's best for her. I'm not even there. All i can say is good luck.


----------



## my little penguin

That poor kiddo 
Second the if they are recommending tpn due to severity then that is what she needs 
Regardless of college


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## Jo-mom

I don't even know what to say on this.  Please know that we are here  for you - you can PM or email anytime.  Us parents have to stick together.  No matter how old how kids are, I know how it feels like to be worried sick.  Thoughts and prayers to O..


----------



## crohnsinct

Thanks guys.  
I don’t think it’s so much that her GI is not choosing to treat her appropriately as much as she is determined to go back to school and if that is the case then she cant have a port because the infection risk is too high.  

Unfortunately, I think the bad decision making is on O but to be fair she has made it this far with her bad decisions so hard to argue with her.  Although it would be nice if the team sat her down and had a long hard discussion with her and tried a little harder to get her to see the benefits of surgery



I can kind of see her point. She says she is going to have to have a colectomy mine as well try everything in the book and delay as long as possible. She says nothing she is doing is making it more likely that she will end up with colectomy (ie refusing meds) just that they will take more out. She says when removing colon it doesn’t matter if they take part or all (actually surgeon said the same thing) as long as some of rectum is left. So if this helps her get to that decision and keep her life moving along to when the surgery is “convenient” then so be it.

She knows she is taking the risk that it will be emergency surgery and she is ok with that and points out that she is getting better about raising the flags ie:this time with the heart rate etc. The old O would have just powered through until things were super bad.

The funny thing is she would rather get a g tube than out in an NG every night. And we don’t even know if EEN will work!  Seems like a lot of work for little payoff. I am going to have her try Kate Farms this weekend.  Do those taste better than Boost or Ensure? Maybe if she can drink those we can call off the tube surgery.


----------



## Pilgrim

I don't know if I'm thinking about this the right way, but from what you've said about O in the past she had always refused EEN. From the outside looking in, if she accepts the G tube then at least EEN will get a proper chance with no equivocation. I'm not sure you should help her look for other options. Also then she gets an elemental formula which may help her absorption of nutrients.


----------



## my little penguin

Per my kiddo 
Boost /ensure are the best tasting 
Maybe try kids boost or pediasure  instead 
Lots of flavors there 
He hated Kate farms could not stand the taste 
Also hated orgain 
What I would suggest is setup sipping cups 
Worst tasting first 
Best tasting last (pediasure /kids boost ) 

some only liked resource breeze more juice like 
Or the ensure clear from Abbott more apple juice like 
Ds liked those 

Talk coffee styrofoam cups with lids
Fill cup with crushed ice to the top 
Put lid on 
Straw to back of mouth and pinch nose 
This by passes taste buds 

added ah-Alaska organic choc syrup covers all bad taste


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## my little penguin

Agree with pilgrim 
Een by g tube might be most likely for success 
As in at least the formula will be going in 
So you know 

No battle no refusal since so far that has been her issue for years 
Refusing ng and refusing to drink


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## crohnsinct

@Pilgrim good point.  I bet her GI would agree.  Ok. You just saved me a boat load of money buying different formulas.  

She says she can’t believe we are at this point. Wants to “double check” with her GI that the tube surgery is necessary now. Maybe give weekly Humira (which isn’t even approved yet mind you) a chance to work THEN do tube.

Ummm yes kid. You are at that point.  Hospital admit. 112 pounds. Raging disease. Problems during anesthesia.  You need nutrition.


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## my little penguin

Unfortunately is her age 
Young adult  equals invincible always 
Raging disease is extremely hard to accept for that age 
Hope she stays the course abd at least gets the g tube Monday


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## Pilgrim

The gtube EEN gives weekly Humira a fighting chance. They go together. Best team for delaying or possibly avoiding surgery at this point.


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## crohnsinct

my little penguin said:


> Unfortunately is her age
> Young adult  equals invincible always
> Raging disease is extremely hard to accept for that age
> Hope she stays the course abd at least gets the g tube Monday


@my little penguin YOU ARE A WITCH!  Guess what she just said!  

When the team comes in I am going to ask the doctor if we could postpone the g tube to the following Monday so I can still take that trip back to school.  

She was going back to school to move out of her old apartment and into her new one and coincidentally there is an orientation that week and she was signed up to help with students with special needs (a part of her grad assistantship).  

This should be fun.....What are we betting?  Do they let her go or not?


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## Pilgrim

You mean the doctor who never says no?


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## my little penguin

Oh they will let her 
As long. As she promises to try to drink as much as possible 
I see it now


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## crohnsinct

Literally laughed out loud when I read those two responses.  So pretty much a sucker bet eh?


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## crohnsinct

...and I don't want to go there but remember that awful summer?  A few days after scope, she was admitted because her BP dropped while getting the transfusion outpatient.  CRP high, BP wonky.  They discharged her and she got on a plane that night to go back to school.  The next week she was septic. But they won't remember.  You know what they say...those who don't remember history are destined to repeat it!


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## Jbungie

We had an infusion yesterday, and good labs. I was thinking about you guys and felt guilty. Hoping you can get her stabilized soon. I do like that she sounds like she is still being a PITA with all of this..kids dont skip a beat


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## crohnsinct

LOL @Jbungie!  

Don't feel guilty in the least!  I want everyone to have great labs and be off enjoying their lives.  No jealously here.  It feels my heart with joy and optimism.  We celebrate everyone's success as if it is our own around here.  But I guess the opposite is true also and we share the sorrows and trials.  

That's what makes this community the best!  I honestly would be in a home now if it weren't for you guys!


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## crohnsinct

I hesitate to post O's journey because I fear it will scare newbies.  However, as bad as it is,  I think people should see how much she is still able to accomplish and that even severe Crohn's is not the end of the world.  

I also like to detail all the options we are given and what we try so if some day someone else is in our shoes they have something to reference to help them have conversations with their docs.  

O.K. maybe it is really more of a written record for me because my brain is a sieve and my recall crap.


----------



## my little penguin

Can you remind them of her history last summer ?
Outside the room 
Obviously


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## Lisa

I’ve been following along, and some of the things you are going through with O sound sooooooo familiar from when I was younger!!
Hopefully things will get sorted out and nothing more make occurs.... continue to be an advocate, listen and give your input and encourage her to listen to the doctors.... and as you are doing, be there. 
It took me quite a while, and quite a few hospital stays to finally ‘grow up’ and start taking better care of myself..... and here I am still, turning 50 this year and I’ve had severe Crohns for over 40 of those years.....


----------



## crohnsinct

More discussions, more info.

O was discharged tonight.

Attending came in to talk more. She explained that the ileocecal valve is likely a stenotic stricture.

More concerning was a small area of narrowing in the colon that was a little difficult to get through on way in but very hard to get through on way out.  This bothered her and she spoke with colleagues.  They now want O to get an ultrasound to evaluate if it is stenotic or inflammatory.  This info might change the surgery discussion and maybe a resection if just that part can bring her a lot of relief. They are hoping u/s will also be able to evaluate the valve

They didn’t biopsy the polyp because they were concerned about perforation given the condition of her colon. They also didn’t do a “turn around” (don’t ask me what that is) again because of risk of perforation.

So basically her disease has kicked it up a notch and on top of being severe refractory she now has stricturing disease.

They also did a calpro while she was there and it was >3000. So for three months her calpro is about 3000.

They want her to use rectal therapy to increase QOL but insurance is balking.

She will also undergo an MRCP for evaluation for PSC because she is high risk due to family history and colonic disease.

But we are home. And going on our trip. And she is talking calmly about colectomy.

G tube surgery scheduled for Tuesday after next.

Still waiting for path results of the biopsies they did take.


----------



## my little penguin

Many hugs to you and her 
Hope she has a safe trip and does a lot of thinking 
Really hope the ultrasound gives answers so the team/surgeons can present her with the best options available to improve QOL as well as her health


----------



## Maya142

Oh my goodness, things went downhill fast! Poor O!
I am REALLY concerned about her going back to school. Her symptoms are very similar to my daughter's - the ones she has because of adrenal insufficiency. The fact that  she needed a stress dose does suggest that. She needs to be see an endocrinologist and put on hydrocortisone. She also needs to be trained for give herself an intra-muscular (big needle) shot of Solu-Cortef in case of an adrenal crisis. Are they putting her on hydrocortisone at the very least?

I do honestly think she should be kept till things stabilize. Last time they let her leave and she became septic and spent what, about 30 days inpatient after that?

I think you're at the point where we were with M  - too malnourished to think straight. She let herself get really sick before she agreed to an intervention (an NJ tube and then a GJ tube). And she regrets it now. Also, I know a G tube sounds like a big step when we talk about EEN, but it's a lifesaver and honestly, much more comfortable than a nasal tube. It can be changed at home. I also think it gives EEN a fighting chance because otherwise she'll have to force herself to drink formula and that will be hard on  her. It's also an easy surgery to undo, should you not need it in the future. They just remove the G tube and it heals right up.

I am REALLY glad O is ok with a G tube (well, sort of ok). It really is a minor surgery. I do think she should be monitored in the hospital as you start feeds because that's when Refeeding Syndrome comes up. That's when it happened for M - she was about 80 lbs and so malnourished. She was supposed to be watched for 3-5 days for Refeeding syndrome but the first two days she did fine and they were talking about discharging her if labs were ok on day 3. 

Well, on day 3, labs were most definitely not ok - potassium and phosphate and she was put on a heart monitor that showed an arrhythmia. She was given IV electrolytes. She ended up being inpatient about 10 days I think. O is probably even more malnourished than M was, plus she likely has adrenal insufficiency and she has a colon in really bad shape.

I can't believe they are letting her even leave the hospital!! I don't blame her - yes, she's 21 but we all know young adults do not understand risk vs. benefit the way adults do - their prefrontal cortex develops later, around age 25-26 (my girls use that fact to now justify prior bad decisions LOL). 

But her GI is being downright irresponsible. If she needs TPN and he doesn't think it's safe for her to be at school with a port,  then he needs to tell her defer the semester/year!!! Or that her colon really has to come out NOW. That if she becomes septic at school and is hospitalized there, they may remove the rectum leaving her with a permanent ostomy, not do the surgery laparoscopically (increasing risk of infection) or may be unable to handle her complex case.

She needs to understand that she is really at risk here - just adrenal insufficiency can be fatal. M is told to stress dose whenever she has significant diarrhea, and by that I mean if she has more than 5-6 BMs, she has to stress dose - 30 mg of hydrocortisone 2x or 3x per day. Then you have Refeeding syndrome - if she's not watched for that, that could be fatal. And she's probably at big risk for sepsis, given that state of her colon. 

I think her GI needs to explain to her how serious the situation is - you don't want to get to the point where she's too sick to survive the surgery. What is the point of grad school then? He needs to tell her to stay home and get healthy because the world needs O - she's going to go on to do great things and I have no doubt she will make a HUGE difference to children with special needs, but she needs to be around to make that difference.

I think she's making great steps by at least talking about the colectomy. Her GI, on the other hand, is on my hit list. He needs to talk to O and insist she stay. That's how she got this point - he let her get here. O could have made better decisions, but her GI didn't help with that.

Sending hugs to you and O!!


----------



## Maya142

> O finished the prednisone last Friday. Over the weekend she lost her appetite, lost weight, frequency went up and more bleeding.
> 
> Yesterday and today she felt bad. Dizzy, lightheaded and bad headache.
> 
> Today she checked her BP and pulse and her pulse was between 123 and 144. She wrote to GI.


These are all adrenal insufficiency symptoms...she should really talk to her GI. He could at least tell her to stress dose and take a small dose of hydrocotisone or Pred (the physiologic dose is 4 mg pred, if I'm remembering correctly), though normally you're referred to endocrinology and they do a work-up. We had to really push to get M's GI to refer us to endocrinology and once we saw the endocrinologist, she went off on a rant about how GIs and rheumatologists overuse Pred and taper much too fast etc. It's really a lot better to have an endocrinologist handling that side of things.

You're going on the trip with her, right??


----------



## crohnsinct

Thanks @Maya142 

The attending did wonder about adrenal insufficiency so she tested her cortisol first thing in the morning and it was spot on. IDK if that one test is enough to cross it off the list but that’s what they said.

Ironically, this is how that horrible summer started last time. Blood transfusion for feeling icky. Low BP led to admit. Kept O/N for observation. Released next day and was in a plane to school that night. I went with her and that’s when the damn burst.

I am going with her this time also. To help with the moving/decorating. I asked her GI if he was ok with it also and he said yes and if she gets inflamed while there we will just go on steroids. BUT SHE IS GETTING G TUBE TO AVOID STEROIDS! and SHE IS HAVING SURGERY!

I just don’t get it.


----------



## Maya142

So there are two tests - one tests if you can make enough cortisol for every day. The other tests if you can make enough cortisol for when your body is stressed and that’s called an ACTH stimulation test. My daughter failed the first, so we never did the second - we just assumed that if she can’t make enough cortisol daily, she certainly can’t make enough to deal with stress. It sounds like O passed the first test but the second one wasn’t done. 
@my little penguin is the best person to tell you about the second test because her son had it. Or perhaps @xmdmom can chime in?

I really, really don’t understand her GI at all. I don’t get why he doesn’t tell her that at some point, you have to put your body before school. Get healthy first - that needs to be the priority for her safety!


----------



## my little penguin

So yes they checked her cortisol levels while inpatient but 
She just got a huge bolus of iv steriods during the scope the day before 
So they should know that’s in her system 
You can’t check for acth unless you have been off steriods for 8 weeks 
Cortisol draw has to be at 8 am exactly not 9 am not later 
Abd you can’t have steriods the day before by iv 
That’s in your system did at least 2-3 days


----------



## xmdmom

“An isolated serum cortisol is often insufficient to exclude adrenal insufficiency”. From this .article. 

A cortisol level on the lower end of normal would be abnormal low if the person was stressed/significantly ill when the sample was taken.

I think it would be worth finding out the actual cortisol value.


----------



## crohnsinct

She had the test done at 7:23 a.m. and it was the day of colonoscopy so before the stress dose of the steroids.  But she is also just off the 7 day burst of prednisone at 40mg so IDK if that might have interfered also.  

Her value was 12.2 and normal is >2.  So seems pretty o.k. but I am not a doctor.  

There was this warning: 

Clinical consideration: Biotin has been identified by the manufacturer as a potential interfering substance. Higher concentrations of biotin may be found in multivitamins, hair/nail supplements, and workout supplements. If the result does not match clinical observations and patient is taking a supplement containing biotin, repeat testing after patient refrains from the use of supplements for at least 12 hours.

They gave her a multi vitamin that contains 33% of the RDA of biotin but I don't know if that was enough to interfere with the test. 

Her GI is very nonchalant about adrenal insufficiency.


----------



## my little penguin

So normal cortisol one of doesn’t show how her body does when it’s stressed 
Ds produced enough cortisol on a day to day 
But failed acth (when stressed he did not produce enough extra cortisol )
This meant day to day he did not need hydrocortisone 
But any extra stress (ie scopes , broken leg , severe illness ) and he needed a stress dose of hydrocortisone for a few days 

that said you can’t test acth unless your off steriods for at least 8 weeks

he eventually passed his acth by avoiding steriods for over a year but any addition of steriods and he gets tested again .


----------



## Maya142

If she's just off a steroid burst, then usually they put a few weeks between stopping steroids and testing. But it does sound like she may need stress dose steroids even if she doesn't need them daily like M did.
I can't believe adrenal insufficiency is treated nonchalantly - we know two kids who went into adrenal crises and nearly died. One had JIA and the other had JIA and IBD. Pretty scary.


----------



## Tesscorm

I wish I could say or do more than just share prayers and hope that she feels better soon!  I do agree that she needs to put health first but we all know that... it's the 20-somethings that don't believe us!  Ugh!    I just hope that she understands that she needs to take care of her health right away, that her GI pushes her for the treatment she needs and that she has some improvement!!  Just feel so bad that she's dealing with so much.


----------



## Maya142

How is O doing CIC? Is her G-tube surgery still being done next week?


----------



## crohnsinct

O is pretty rough but staying out of the hospital.  She hasn't had fevers and isn't going off the rails so that is good.  But super thin and going about 15 times a day. 

G tube insertion is planned for Tuesday.  Might be outpatient.  They aren't really clear and I am not sure who is calling the shots orwho is directing the feeds right after the surgery.  Her R.D. gave us a plan for once she has transitioned but not clear on the "transitioning" part.  Her R.D. told us just to call her if they let her go home right away. 

The surgeon doing the tube is the same surgeon who would do the colectomy.  We all figured good for them to get acquainted/used to each other.  He is also going to do a flex sig while she is under.  This way he can check out the narrowing and let the GI know what he thinks.  GI isn't so convinced it is a stricture.  He thinks it is more just "tightness" do to extreme inflammation.  

Biopsies are back and no dyplasia.  Just inflammation in TI, transverse, descending colon and rectum.  Quiescent Crohn's in cecum.


----------



## Delta_hippo

Just wanted to wish you all the best for surgery tomorrow from here in the UK - hope it goes well and she can put some weight on.
I have had two surgeries one emergency bowel resection while septic and weak from weight loss and one ileostomy reversal whilst healthy and having eaten well albeit low fibre foods.  The first was traumatic and awful and I wouldn’t wish it on my worst enemy.  3 weeks in hospital, weeks at home before I could even hobble out to the garden, needed help to get upstairs or in the bath.  The second was an absolute walk in the park by comparison, one week in hospital, couple of days feeling wobbly at home.
So my strong advice is, depending on what things look like tomorrow and how it all pans out, push for the planned surgery/ Disneyworld/ kitten bribes and try and discourage the let’s-wait-til-I-fall-over plan.
I know it isn’t your call and I’m sure O doesn’t want to hear the risks but just throwing my experience into the mix in case it helps her not go through what I did xx


----------



## my little penguin

Good luck today


----------



## Maya142

Good luck O! Hope all goes well!


----------



## Jbungie

Thinking of you guys today!


----------



## xmdmom

Hoping it all goes smoothly!


----------



## crohnsinct

Awww you guys!  You are the best!  

She isn't scheduled to report to hospital until 1:50 so I figure tush on the table at about 2:30.  It will be a while before you hear from me tonight but I am feeling pretty positive today.  Looking forward to the surgeons view on the flex sig more than anything.

@Delta_hippo Thanks for your perspective.  I have taken to showing her the responses so that way the info is coming from other people and not just mom.   I think she is appreciating hearing it from others.


----------



## Maya142

Tell O we are all rooting for her! She is an amazing kid and I wish so much that she didn’t have to deal with this.


----------



## LuckyD

I have been lurking your post and following O's journey. Just wanted to wish her the best and hope she gets some relief soon. She sounds like quite the trooper.


----------



## Tesscorm

Thinking of you both today.  Wishing all goes smoothly for O!


----------



## pdx

Thinking of you all and hoping for good outcomes!


----------



## crohnsinct

Hi guys!  Your thoughts and prayers worked!  Nothing but good things to report here.  

Surgery was delayed.  Then she had blood pressure problems with anesthesia again so they had to stop everything, take a break, gave her fluids and steroids and then restarted.  After the restart she did great.  

Surgeon did a very good job.  The sites look great and he placed a Mickey button right away.  O was VERY happy about this.  

Surgeon was able to do the flex sig and said there are no strictures and that he got pretty far and things looked good.  That "good" I think is from a surgeon's point of view meaning no need to resect due to stricture and no emergency surgery needed.  He did say that the g tube is a very good first step toward the colectomy and that he felt O should be considering the colectomy permanent given the condition of her rectum but that we would try to reconnect and if it works then it will be a very nice surprise.  But for now he just wants her to concentrate on EEN, regaining her weight and getting healthy. 

She was admitted and is NPO until the morning when they will start her tube feeds. 

She is resting comfortably and refusing pain meds.   

She is in VERY good spirits and telling me that now she is not as afraid of the colectomy but that she is really hoping the EEN handles the inflammation and she can cycle on and off to mange disease activity until the new meds come out but she is at least willing to consider colectomy.  

Thanks for all of the support!


----------



## my little penguin

So glad things went as well as could be expected


----------



## Jo-mom

That is a great update (for a change).  Glad that she is also opening up to the fact of colectomy in the future.  She's is an amazing young woman who has an amazing mother.


----------



## Tesscorm

Hugs to you both!  I'm glad it went as well as possible.  I hope it brings her some relief!  And, it would be amazing if cycling EEN would mean the colectomy could be avoided!  All fingers crossed!!


----------



## Maya142

Way to go O!!! I hope she stays comfortable!! She is really amazing -  EEN is hard and she is so brave for trying it again.


----------



## crohnsinct

Doing o.k.  Bit of a mix up on "the plan" but got is straightened out and first feeding went in at 6:30 p.m.  

She is a little more sore today and getting up and down is hard but overall doing o.k..  Been 3 hours and tolerating the really slow feed well.  

Onward and upward!


----------



## my little penguin

Fingers crossed you go home today and feeds go well


----------



## crohnsinct

Feeds are going great.  She is at 50ml/hour so 5 cartons.  Goal is 7 so we could do the rest of the ramping up at home.

They are starting discharge paperwork and trying to find us supplies.  No sense in going home if we don't have a pump...duh! 

Pain is really bad and now she isn't so keen on colectomy.


----------



## Jbungie

Ah the excitement, I hope, of discharge paperwork.


----------



## my little penguin

Woohoo for going home  
She may change her mind again once she is home 
Tired /hungry in pain is never a good combo I for anyone


----------



## crohnsinct

Yeah but you know how THAT goes.  They tell you about discharge at 8 a.m. and you are home by 8 p.m.!  We should start a pool!


----------



## Jbungie

I'll say 2pm est.


----------



## my little penguin

So if they told you at 8 am 
It will be close 
Getting the pump /formula to your house by tomorrow is the sticking point 
3pm pacific time discharge at the earliest 
Probably noon pacific tomorrow given the pump need


----------



## Maya142

> Pain is really bad and now she isn't so keen on colectomy.


Abdominal surgeries do hurt. Have they been able to control her pain? She really should not be discharged unless her pain is controlled - and of course unless she has supplies for feeds! What formula is she on?


----------



## crohnsinct

Tried a bolus feed of a whole carton over 10 minutes and she vomitted.  Waited an hour or two and tried another bolus over an hour and she made it all the way to the end and vomitted. It looks like it is a volume problem and not a rate problem. So they want us to stay another hour and then we are going to try a half a box over a half hour and see how that goes. If that works then we have a good plan for 10 hours overnight and 5 bolus half hour feeds during the day. Not ideal. She will be tethered to the pole and pump most of the day. Even with this new plan the best she can do is 1,200 calories. But it is just the beginning. It will get better. Her stomach has probably shrunk and the inflammation in her intestines is likely slowing everything down.  

So we blew right by Jbungie's 2pm est estimate.


----------



## Maya142

Why aren't they giving you a backpack?? M has never done bolus feeds so has always had to be stuck to the pump. But with the backpack, it's very easy. 
This is the one M got - the mini for the Enteralite Pump: https://mdmaxx.com/products/moog-pc...ChNlnePnfV4mknLnYTEsmn-MgBmzYCCRoCSd4QAvD_BwE

Your DME should supply it and they pay for it. But they are available on Amazon I think. 

You can also buy modified backpacks on Etsy. There is absolutely no need for her to be tethered to an IV pole. M's feeds were 20 hours a day since  she couldn't do bolus feeds.

It is absolutely true that your stomach does shrink, so it will get better. The other option is replacing the G tube with a GJ.  That doesn't mean an extra surgery, just that there will be a tube threaded into her jejunum. M was throwing up continuous feeds so she really needed one. She was able to get to 100 mL/hour through the GJ and so she got 2000 calories. 1200 calories is very low. They could also try a denser formula like Peptamen 1.5. Some people have  trouble tolerating it and others don't.


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## crohnsinct

@Maya142 They are giving her a backpack but I think they actually meant tethered to the tubing.  They said she is going to want to get dressed, run around, shower, swim etc.  I feel like they are just trying too much too soon.  

She is on Ensure or Boost plus so I think it is a denser formula but given the stomach shrinking and the intestines being so inflamed it is just too much!  

I said, Just let us go and we will figure something out at home.  Even if I just keep her at 50ml/hr for a while...and they said, "no then she will have to be on it all day".  Ummm so?  Then we will slowly ramp up.  I think her ultimate goal is 1,680 which doesn't seem like a lot to me but just a forum reading mom.


----------



## pdx

Everything about this is crazy. They put in a G tube but they're giving her Ensure? She should definitely be on elemental or semi-elemental formula with the state of her intestines. No wonder she's feeling nauseated. Even if she can tolerate a really slow drip of Ensure, it's not going to be absorbed nearly as well as a broken down formula.

My daughter got super nauseated with polymeric formula. Next we tried Peptamen jr, and it also made her sick. Turned out her body didn't like the inulin that it contained. She switched to adult Peptamen 1.5 (which didn't have inulin) and could tolerate that as long as the rate was slow: 60 ml/hr. Her doctor wanted her to get 2000 calories a day, so she had to be hooked up for 22 hours a day to get that. She was 12 and just 70 pounds, so it seems like O should be aiming for at least 2000 calories.

Big hugs--hope this all gets worked out soon so O can get some calories in her!


----------



## crohnsinct

^YEP!

And that's all I have to say about that!


----------



## Maya142

They're giving her Ensure plus instead of a semi-elemental formula?!! Of course she's nauseous! I would definitely push for Peptamen if she cannot tolerate Ensure. There is Peptamen 1.5 - that makes more sense. Or even Pediasure Peptide. The advantage of the G  tube is that she doesn't have to taste the formula - they should give her something that is easily absorbed!! This is crazy!

M did better on a less dense formula but of course that meant a higher rate through the GJ tube. We first tried Peptamen 1.5 (adult), then went tothe regular Peptamen due to nausea and eventually ended up on Neocate. Neocate is for kids though, so once she switched to an adult GI they put her on Vivonex which is elemental.

I am a bit confused about what they mean about getting dressed - M did EEN for 16 weeks last summer and I promise you, she wore clothes! We stuck a command hook on the inside of the backpack, and wrapped the excess tubing around the command hook, so there was no tubing trailing on the floor - partially because I didn't want her to trip and partially because her kitten loves chewing on the tubing and loves Neocate   (that cat might be the only creature on the planet that likes the taste of unflavored Neocate!).

I agree - they need to take it slow. Let her put on some weight before starting to run or swim!! And of course you can disconnect to shower.

Ramping it up slowly is a good idea. It can be done inpatient or outpatient. Given how unhelpful the hospital is and that she'll rest better at home, i'd do it outpatient. They did make M stay until she got to the goal rate but that was because of refeeding syndrome.

1600-1700 calories seems really low for a kiddo who needs to gain weight. Has she seen a dietician? M was put on 2000 calories and we had to actually up it to 2200-2400 calories before she started gaining weight. She was 82 lbs when we started and 5 months later was 100 lbs. They should at least aim for 2000.


----------



## my little penguin

please call Gi before they put in orders for ensure to your dme 
It should be minimal of semi elemental 
Even elemental 
Since it a tube 
Wow


----------



## Maya142

I would definitely email her GI ASAP or ask to see the RD - this is just nuts. Poor O!! Please tell her it is trial and error when you're trying to find a formula. She won't always be nauseous- you will find one that works. She probably just needs a different formula!


----------



## crohnsinct

Staying another night.  She tried the half carton over half hour.  She didn't vomit but felt very sick.  They gave her the option to go home or stay.  She said she was just really scared to go home.  IDK why, what's the difference, you vomit at home or vomit here?  We can play more games with speed, length of time and have more control at home.  But here she has the comfort of the nurses thinking of options etc.  

I asked about another formula and they looked at me like I had three heads. 

The intern came in and told her there was no pressure to go or stay.  She also said there is no pressure to do the feeds any way or get a specified number of calories in.  She said go as slow as you would like, do continuous or bolus or whatever works for you.  She is sweet...but she is an intern so doesn't have much of a say.  

O decided she would rather stay.  She will be less nervous which will make her stomach calm and if the evening and night are uneventful then she goes home on a good note rather than unsure footing.


----------



## Maya142

Good for O!!! Could you try continuous feeds at a low rate for 24 hours? Once her stomach is used to that, maybe you can try bolus feeds again.
Can you ask the intern for a consult with a dietician? A dietician will know different formulas.


----------



## Maya142

I keep meaning to ask - how's her pain level? Is she feeling any better?

Also, is she taking pain medication (besides Tylenol)? Just wondering because that can certainly cause nausea and vomiting...If she is, they could give her Zofran with it.


----------



## crohnsinct

Time out!  The formula they are using is 350 calories per carton so 5 cartons (what they want her discharged on) is 1,750 calories.  The goal of 7 is 2,450 calories per day.  That sounds more like it.  

I have asked to see RD but of course they are not around.  I called her regular RD to see if she will intervene on her behalf.  

Pain is getting a tad better.  She is taking only Tylenol.  She did take an oxy night before last but that didn't help so she refuses to try anything again. 

As much as I wanted to go home, I think O is right.  Better to go home feeling like, "yeah I got this! let me go" than unsure and scared.  I think tonight will seal the deal for her. 

Ironically I spent my birthday in the hospital that summer she was really sick and I think she was just really pushing herself to get home for me.  Like who wants to go home and cook, clean and do laundry on her birthday?  No thanks!  I will stay here and continue getting my door dashed meals and quiet time.


----------



## Maya142

Oh that's a relief! At least she is getting 1800 calories now and you can go up to 2000+. That makes much more sense. I hope you are able to see the RD but if not, they can change her formula once you are home. 

I absolutely agree she should not go home when she's scared and unsure. I'm SO proud of her for staying. That shows maturity. M says she deserves a kitten (well, actually M said she deserves two kittens, but I didn't think you wanted to hear that  ).

If the pain is bothering her a lot, then I would ask to speak to the intern - they can switch pain meds. They could try Morphine, a higher dose of oxycodone or even Tramadol. She doesn't have to tough it out if she's in a lot of pain. I know she is insanely tough, but she doesn't always have to suffer. They can make her comfortable.


----------



## Pangolin

I would recommend the 1.0 rather than the 1.5 formula for proper hydration, unless she wants to have water in addition.


----------



## crohnsinct

Definitely going home!  Since MLP didn't specify a date I guess her 3pm estimate counts as closest!  We are doing her last bolus feed here now and then will hit the road as soon as paperwork is complete and formula arrives!


----------



## my little penguin

Woohoo for going home


----------



## crohnsinct

Weekly Humira was approved on appeal!  Woohoo!  The two hospital admissions helped no doubt.  But being fair, I am actually shocked that insurance keeps approving all this stuff and doesn't say, "enough already pull the plug and do surgery".  That would be so much cheaper for them.  

Home feeds going well.  Surgery healing going slow.


----------



## Delta_hippo

Glad things went well  yes vomiting after abdominal surgery is a special kind of misery, I hope that has settled down.  I remember oxy doing sod all and giving up then a nurse saying you have to keep going to get a good level in the body rather than one off so I did and then it was magic, to the point I refused to give up the machine that supplied it and sulked for a day when they refused to refill.  So yes the pain is miserable but it can be reduced a good amount with the right stuff.  
I hope O is managing to get some calories in and rest a bit.  In terms of her plan to stave off colectomy there’s also stelara stlll a possibility to assist if the een can wrestle the inflammation down.  Hopefully the weekly humira will kick in too.
I really hope things are starting to settle, she deserves a break xx


----------



## crohnsinct

Hey y’all!  A bit of up and down here. Mostly O losing weight and feeling faint/dizzy.  Did labs and everything was spot on so not electrolytes or anemia.  Left with nothing else other than a vagovasal response to increased BM’s.  

Things straightened out and she has gained 4 pounds (from her low after surgery). She was doing a 10 hour feed of 4.5 cartons overnight at 108 ml/hr and then a half carton half hour bolus at 8:30, 11, 1:30, 4 and 6:30. 


She was going to the bathroom too many times to count and still bleeding. Her RD said that sometimes the concentrated formula causes diarrhea for some people. So now we are trying the less concentrated formula but that means more volume. So she will be connected 19 hours continuous. She said she thinks that might actually be easier than the constant bolus feeds with all the filling, priming, flushing and washing.

infusion is next Monday so hopefully we will have a new calpro soon and be able to see if this is helping at all.

Thats it for now


----------



## Maya142

YAY for weight gain!!! Way to go O! We also had to switch formulas to deal with diarrhea. In our case, she went from Peptamen 1.5 to Peptamen and then to Neocate which she stayed on for several years. Now she is on Vivonex which is elemental but for adults. Neocate is formulated for infants and kids so it had more carbs and certain vitamins and not enough protein (I think  - not totally sure) so she was switched to Vivonex last year.


----------



## crohnsinct

Things are not better.  

Frequency still through the roof, still bleeding.  

She can't go back to school like this.  

Message in to RD and GI.  They advise to stay the course and hold overnight feeds at 170ml/hour.  She has an appointment on Friday so we will discuss more then.  Hopefully we will have labs back and can make some decisions.  I just don't see how asking the kid to continue going to the bathroom 20 times a day and hope the formula kicks in is a good plan.  Wednesday will be three weeks.  My patience is wearing thin.


----------



## Optimistic

Blows keep on coming. So sorry. I hope GI has a new plan.


----------



## Delta_hippo

Poor old O, this wretched disease.  I remember you thinking a while ago she might be steroid dependent I don’t know if it’s worth another short course to calm things down while een settles - I don’t know how long they expect een to take to start working.  There is a website by a retired English GI John Hunter where he writes about the different types of formula, I’ll try and find a link, but you probably know it all already.


----------



## Delta_hippo

Here you go




__





						crohns.org.uk
					





					www.crohns.org.uk
				




Depending what one she’s on says could take 6-8 weeks to kick in 

Will keep hoping and praying and sending love

I also wondered if she needs (or is on) vitamin or mineral sprays given how quick everything is going through her.  Garden of life do a good b12 one I haven’t tried their others.


----------



## Pangolin

Here's how I see the difficulty for O:

Ideally, you could take an incremental approach. You could start from a baseline and add EEN, see what it does and whether it's enough, then add another treatment, measure changes and adjust dose, add another, etc.

Unfortunately, right now it's very hard to take an incremental approach because you can't really get to a baseline and because O already has a number of treatments going on. So you're looking at turning multiple knobs at once, and it can become very difficult to isolate the various parts and really understand what's going on.

Maybe she needs EEN and Stelara/Humira and surgery and maybe even something else all in combination, but it's just hard to figure it all out at once.

I don't have a solution, just identifying a difficulty. I hope O can find a combination that works.


----------



## crohnsinct

Update:

- H&H are down...a lot...in two weeks .  Crit just under normal, HGB at the low end barely holding on
- Albumin down but right at bottom of normal
- CRP is up to 25...from 16 while inpatient.  Not terrible like when she was septic and 240 but not a good trend
- weight is 114.75...so little gain from hospital of 112
- she has granulation tissue that they burned off and she will treat at home
- they are switching her formula to peptamen because she is still going 20+ times a day.  If this doesn't work they will give her vivonex
- Calpro is 885.  Down from >3000....in two weeks.  GI is very encouraged about that
- they are letting her eat 250 calories a day.  CDED foods
- She will remain on 90/10 EEN until end of September.  If not in remission then, she will move to steroids with the plan to do colectomy in December
- She looks much improved.  Color in her face, no dark eye circles, more enthusiastic about things. 
- DC Sulfasalazine and Cipro so now just on Humira weekly and Entyvio 300mg Q4

So all in all, cautiously optimistic with plan B being discussed.


----------



## Pilgrim

This sounds like a solid plan all around. I'm encouraged for O, and for you. I hope you are through the hardest parts.


----------



## pdx

Really glad to hear about the formula change to Peptamen. I hope that helps!


----------



## my little penguin

Sounds like the plan at least is improving on discussions 
Nutrition helps them think straight as well 
Remember that


----------



## Maya142

Glad she at least looks better! I hope Peptamen or Vivonex will help her diarrhea - elemental formula (Neocate then Vivonex) made a big difference for M. How is she doing now?


----------



## crohnsinct

Not so good. She seemed like she got better for two days (frequency only 10 times) but went right back up and increase in bleeding.  
Friday was update GI and RD day. RD said to slow down the feeds and wait for GI to weigh in. He is on vacation. Back on Thursday …the day after she leaves.   I am hoping we switch the formula.


----------



## Maya142

Can the RD not switch the formula without him? Considering she’s doing so poorly? It’s not like it can hurt her…Why wait?


----------



## Tesscorm

She really is amazing, pushing ahead with all the setbacks.  So sorry that a smooth path seems to be so difficult for her to find.  Can she delay leaving?  I know there's only so much you can do but any way you can convince her to stay back until she's a bit more stable?


----------



## crohnsinct

IDK why the RD won't switch the formula without him.  Maybe because she is wondering if he is going to pull the plug on EEN and just stick her on steroids and wait until December to do surgery?  Either way this is getting ridiculous because she is getting a huge shipment of peptamen sent to her apartment by school.  If GI and RD decide to switch the formula she will have cases and cases of peptamen hanging out at school.  I will have to help her find someone locally who might need it but those chances are slim. 

She would never push back her return to school.  She was awarded a grad assistantship and it starts on 8/5 so her going back 8/4 was as much of a compromise as we are going to get   .


----------



## Maya142

You can always donate formula to your local children's hospital...that's one of the ways they get samples! We donated a LOT of Neocate in the past -  just took it to CHOP. I know O is far away from a children's hospital but does the adult one near her school have a GI dept? Because she could donate it there if she switches to Vivonex.

Just an FYI on Vivonex -  it comes both in the powdered form and a liquid form. We find the powder is easiest for M to travel with, but obviously that means mixing the formula (we just use a blender bottle). The liquid is in cartons just like Peptamen and that's quickest to use, but flying with it can be a pain. TSA gave us a hard time even though M had a letter, a NJ tube and a feeding pump and backpack. Now that she only supplements with formula, it's not really an issue.

I also wish she would slow down and take some time off...I really think she should give herself a chance to get better.


----------



## Jbungie

crohnsinct said:


> IDK why the RD won't switch the formula without him.  Maybe because she is wondering if he is going to pull the plug on EEN and just stick her on steroids and wait until December to do surgery?  Either way this is getting ridiculous because she is getting a huge shipment of peptamen sent to her apartment by school.  If GI and RD decide to switch the formula she will have cases and cases of peptamen hanging out at school.  I will have to help her find someone locally who might need it but those chances are slim.
> 
> She would never push back her return to school.  She was awarded a grad assistantship and it starts on 8/5 so her going back 8/4 was as much of a compromise as we are going to get   .


Does she have like an Amazon wish page or anything? Would like to send he a giftcard or something for some school shopping!


----------



## crohnsinct

That is so sweet of you to think of her.  Honestly, she has been at this school 4 years and has everything she needs.  She says, "Please make a donation to CCFA".


----------



## crohnsinct

@Maya142 No adult GI department at the hospital near her.  It is actually more like a big medical office than a hospital.  The nearest larger hospital is about 2 hours away.  That's why when she was septic that one summer they were going to transport her but they were able to handle it.  

There is not even an actual GI in her area.  There is a surgeon who removes terribly diseased colons and then puts you on a biologic and tries to manage you and a family practice physician who will try to manage your IBD for you.  It is really bizarre to me that there is not one GI in the whole area.  I am assuming most people just travel the two hours north or east for the next big city.  

So when I get there, I can try to drive the peptamen to CHOA or just go on Oley and see how to donate it there.  I could also reach out to the SCD families and see if anyone there needs formula as a lot of those kids cycle on and off.  

She is back at school.  Things straightened out a bit and frequency went back down to 10, bleeding is minimal and weight seems stable at 116.  So just keep on keeping on.  Her next infusion is 8/16 so we will have lab results sometime after that and more of an indication if EEN is actually working.


----------



## Delta_hippo

116 sounds like she is creeping in the right direction?  I am torn between feeling so proud she is so determined to persevere despite everything and also really wishing she would put all that aside and just focus on health.


----------



## Maya142

I think @Delta_hippo said it best! She is incredibly tough but I do wish she would put her health first. But I am very impressed she is sticking with EEN and the tube at school. That can’t be easy, especially since she is hooked up most of the day.

That does surprise me that there is no GI in that area…Auburn is such a big school! I guess that is why they have such a good health center for students - my younger daughter’s school would not even do a routine CBC on her when she needed weekly blood work on Imuran.

If O does switch, either of those approaches would work, though if you don’t know a GI at CHOA , I think probably mailing it through the Oley Foundation might be easier. You may also be able to get Vivonex through them.

Glad to hear she is gaining weight slowly but surely!  When are you going to see her? Glad she has labs and an FCP coming up soon!


----------



## Jo-mom

How's O doing? It's been a few weeks.  Hoping to hear good news.


----------



## Clash

You could check GI Care For Kids with the peptamen they're affiliated with Scottish Rite CHOA Sandy Springs. Out of touch with the peds world since C moved to adult GI.

Hope O's health is improving greatly. Tell her I said War Eagle!


----------



## crohnsinct

Sorry it's been awhile.  It's been a bit crazy.  

O was eventually able to tolerate the Peptomen and has continued on her 90/10 EEN/Food plan.  She is up to 119! But she still has a frequency of 7-8, occasion really bad days, occasion bleeding and always urgency.  

During her August virtual appointment GI changed the plan to if she is not in remission by end of October then maybe we drop Humira and try Stelara.  He also got 12 suppositories under compassionate use and said if they worked we would use that to get insurance to approve them.  Also during this visit they discussed her urgency and he mentioned that the rectum and sigmoid colon could have become fibrotic and lost their function after the years of inflammation.  He mentioned a possible MRI of the area to assess the damage. 

O continued to do o.k.'isn for a while but has had some bad days and actually was in the E.R. one day because she was running high fever and vomitted.  Reminiscent of "that" summer.  The E.R. put her in the COVID waiting room as she was technically symptomatic.  She tested negative but they kept her in there because now she had been exposed to them for 5 hours so could likely have caught it.  Her GI wanted her admitted for fluids and IV steroids but there was no room at the inn so she signed out AMA with her GI's approval.  She went home, super hydrated and straightened out. 

Her most recent calpro is 3120.  

She just had another virtual visit with the GI.  

- he is thrilled with weight gain and see's that as a great sign. 
- says her inflammation hasn't gotten worse so that's good (even though her calpro was 880 in July) 
- asked her to give EEN another 4 weeks to see if it will get her to maintenance.  Said, EEN has stopped the backslide so let's see if another 4 weeks gets her to reverse. 
- mentioned the possibility of fibrotic tissue. She will get an MRI of that area when she comes home for Thanksgiving. 
- He said the g-tube was worth it even if we declare EEN a fail as IF she needs to have surgery the tube will help us ensure she is nutritionally optimized for a better surgical outcome
- he mentioned insurance will likely no longer approve double Humira and double Entyvio and that at the end of her Humira approval (1/1) we will have to pick one. But we will deal with that when the time comes 
- he feels that E.R. visit was a cytokine storm due to IBD inflammation. Similar to what happened "that" summer but it is good it hasn't happened again.  

My take?  I don't see how one biologic is going to be able to maintain her if two with EEN or previously antibiotics or sulfasalazine or Uceris or SCD or..or..or has not been able to.  

If they want us to pick one biologic they will not likely approve Stelara with Entyvio and I hate to ditch Entyvio and Humira when they are keeping her somewhat out of the hospital for an unknown Stelara that might not work at all.  

It seems like he is trying to give EEN every shot possible to work because really what are our options.  If the next step is surgery we really was to know we exhausted the EEN option.  

She is away at school, Covid is rampant there so steroids are not really an option and if surgery is the next step steroids become even more of an issue.   

Seems to me the writing is on the wall and he is just trying to get her to December and to a point where she will admit surgery is next step.  

But the good news is she says she feels fine and is happy!  Her birthday is coming up and GI approved a birthday dinner with no restraints on calories so she is happy.  

Another infusion this week so more lab data to come.  Who knows, this calpro could be back down to 800's.


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## Maya142

I'm glad O has gained weight!! Just FYI, we have been able to get two biologics - one at 3x the normal dose and one at 2x the normal dose (Cimzia) for two years. It did take appeals but we got the high doses based on M having tried everything else and severe disease activity. We also got two different biologics (well, Cimzia was the same but a new one for her AS) both at 2x the normal dose for another 2.5 years. I should note that M was also on two immunomodulators used for arthritis, one of which is pretty expensive. 

It's definitely possible, you just have to fight for it.

That said, I wonder if it a way her doctor is preparing her for surgery because there is no way she'll be able to manage on just one biologic and Humira and Entyvio are only just keeping her out of the hospital.



> he mentioned that the rectum and sigmoid colon could have become fibrotic and lost their function after the years of inflammation. He mentioned a possible MRI of the area to assess the damage.


If this is true, does that mean her ostomy would be permanent?

Sending hugs!


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## crohnsinct

@Maya142 I think insurance is just really clamping down all over these days.  She has been on double dose (and at times quadruple dose) Entyvio since spring of 2019, and Humira for a year and half now.  I think insurance is saying, "fine we will approve it but only if it is working which it is clearly to because you keep asking for all this other stuff also" 

I also wonder if he is laying the groundwork. But this guy changes on a dime so I am not investing too much energy into thinking about it.  Taking it a day at a time.  

I am not clear on the fibrosis.  But I would think that would mean proctocolectomy but I know there is a lot of research going on right now with intestinal fibrosis and drugs to treat it so who knows.


----------



## Maya142

Insurance definitely is clamping down. We've had to fight harder and harder in the  past few years. It's been doable, but has taken months, which O doesn't really have.

I do hope she'll consider the surgery though I know it's a huge (and scary) step.


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## Pangolin

Stelara + entyvio + een + maybe an antibiotic for a short time might be a combination to try, if they would approve it. The switch from Humira to anything else could be rough, but you probably want to keep EEN going during that time in order to avoid making things worse.


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## crohnsinct

@Pangolin Yeah we would keep the EEN going IF it was doing anything but since her calpro is still sky high I honestly don't think it is.  It is just putting weight on her which in and of itself is a good thing.  IF Stelara really takes that long to kick in, she will likely end up in the hospital again if she is only on Entyvio and EEN.  The antibiotics had stopped working last fall so not sure that is an option.    

The other complicating factor is that Humira is controlling her small bowel disease to some extent, so the GI is leery of dropping it and going to Stelara because what if Stelara doesn't control her colonic disease or her small bowel.  Then she needs surgery and has a diseased small bowel.  It seems he and the surgeon would much rather go to surgery with a drug we know is some what controlling her small bowel.


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## crohnsinct

Hi!  Sorry been away for a bit.  Here is the update even though the future is a little muddy. 

O's most recent calpro came back at 1200...down from 3200 but still  hovering in the 1000 range.

Symptoms are improved but not great.

She is up to 121 so has gained 10 pounds. 

She has agreed to the colectomy and requested to have the surgery in December. She is tired and there aren't really any other options anyway.  She wants to control the narrative and not have it be emergent.

She is dropping EEN (been on it 13 weeks and if it hasn't worked by now....) and moving to eating what she wants and doing three overnight feeds per week.  This is in an effort to hopefully get her to gain an additional 10-15 pounds and get her to optimal nutritional status for surgery and better surgical outcome. 

She is still scheduled for the MRE Thanksgiving week.  The GI mentioned that beyond the fibrotic sigmoid colon and rectum the bigger concern is her TI.  He said the TI has to be healthy in order for a reconnect to be successful and she has disease burden in her TI.  So we will wait to see what the MRE says.  A reconnect in her case seems to be slim possibility.

Since we are withdrawing EEN and her inflammation is still high we are trying an experimental treatment.  He has been using interventional radiology to insert a tube through an artery in the groin that goes directly to the diseased area and injecting steroids right to the inflammation.  Some will be absorbed but not as much as if she took oral steroids.  Not sure if this helps with the washout period prior to surgery but I am guessing so.

He would like her to start Stelara.  I "think" the move is because her TI is still inflamed and Stelara works better in the small bowel than Humira. True that the colon is being left undertreated but it is coming out anyway.  Hopefully the IR injections keep the colon quiet. 

It sounded like he wanted her to put off the surgery while we get the TI under control and get some IR injections under our belt and improve her nutritional status BUT if she doesn't do it in December the next time she has time to do it is next December.  She only has a week here and a week there off from school. It sounded like the GI felt this December is too soon but next December is too late. Good 'ole O making scheduling impossible. 

She has another appointment in three weeks.  We are just taking it one itty bitty step at a time.  Who knows what will happen.  Maybe MRE will surprise us. Maybe Stelara will be a miracle....of course we have to get it approved first


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## Delta_hippo

I really hope the stelara exceeds expectations and also that it helps with her psoriasis.  Annoyingly it triggered psoriasis for me but my GI said it was originally developed for psoriasis so it would be nice to at least injure two birds with one stone.
The weight gain is really great news but I suppose the lingering high FCP despite literally everything she has tried does point to surgery and I am very relieved to hear planned rather than keel over and emergency.  I hope it goes well.  I’ve had an ileostomy before happy to answer any questions she might have (I’m in the UK so brand names might be different).
Good luck xx


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## crohnsinct

@Delta_hippo you literally made me laugh out loud at the "keal over emergency".


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## Maya142

I am so sorry O has to go through with this, but also so proud of her for making such an incredibly difficult decision - a decision no 21 year old has to make. I'm glad she will stick with some formula but will  get to eat and I hope that makes it easier for her to gain weight. She has had a restricted diet for so long now...I hope she enjoys her food!!

I still wish she'd take a semester off - then you could get her TI under control with steroids AND do the surgery. They won't want to do surgery right after she's had steroids, even if they're injected right? I remember when my daughter was having major surgery that they wanted no steroids for 3 months prior to the surgery. She had to stop her Cimzia and her Crohn's was flaring and the surgeon agreed to 5 days of Entocort - nothing more than that!

If her TI has to be healthy for a reconnect, wouldn't it make sense to get her TI under control with Stelara and steroids and then wait a few months and have the surgery? I'm guessing this is what her GI wants, but if it will give her a chance at not having an ostomy, isn't it worth deferring a semester of school?

Regardless, she is so brave and my daughter says she deserves a reward (and I agree) - I think Disney tickets are in order!


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## Catherine

Sorry to see O is still having such hard time.  Glad to see she has agreed to a planned surgery.


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## Carabop

This girl has been through so much. You all deserve a medal. I wish her the best. Not sure I could even make such a decision. After following you all I have nothing to even think of complaining about with my disease. The doctors say I am one of the lucky ones only having to have 3 resections and 1 stricturplasty In 31 years. The best to you all.


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## crohnsinct

@Carabop That is sweet of you to say.  IT sounds like you have been through your fair share as well.  It is warriors like you who set an example for our kids!


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## Carabop

Thank you crohnsinct. There wasn’t much info around when I was first diagnosed. C&CF was about it at the time. It is so nice to have forum like this.


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## crohnsinct

O got a call today to schedule the Interventional Radiology thing.  They said they will do the consult right after her MRE and then the procedure on Wednesday before Thanksgiving and she will stay the night.  STAY THE NIGHT?!  What the heck did we agree to?

In true O fashion she balked at the stay the night part especially because it is Thanksgiving so they said since she is technically an adult they will just keep her there for 6 hours and then she can go home.  6 HOURS?!  I have cooking to do!  LOL! KEEP HER!  I will send her dad for her in the morning! 

So looks like I have to do all my pre Thanksgiving cooking by Monday!


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## crohnsinct

OK this does not sound fun and certainly not a long term solution.  The procedure is done under anesthesia.  The tube is inserted in the groin.  It is listed as a visceral angiography.  She has to keep her leg straight for 12 hours afterward.  No hot showers blah blah blah....I just don't see how this is sustainable on a long term basis and why he said it is an option to surgery.  I am glad we are only doing it to get her to surgery.


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## Maya142

I was going to say that she will probably need to lie on her back with her leg straight for a while - that’s what they do after angiography. They do use anesthesia for those procedures or at the very least, sedation. My daughter has not had this procedure but she has a friend with pretty serious vasculitis and he has had similar procedures many times. I can ask her to ask him if he’s in pain after the procedure and what it’s like, if you’d like. 

I’ve never heard of this procedure used for Crohn’s - so what they’ll do is go in through an artery and inject steroids into her terminal ileum? Just out of curiosity, why wouldn’t they do that through a scope? Or is this for her colon?

this is a good excuse to get your other kiddos involved with Thanksgiving cooking!! Or even your husband!!


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## xmdmom

I googled (google scholar) and only found old papers ( 25 years ago and older) reporting intra-arterial steroid injection in ulcerative colitis but I saw none about Crohn’s.  I wonder how much experience this doctor / the interventional radiologist has with this procedure. Does not sound fun. Sending hugs to the both of you.


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## Tesscorm

I hope this helps O!  Not the same thing but I did have an interventional radiologist inject steroids and a nerve block through CT guidance into my spine approx. 3 years ago (when I was having problems with a synovial cyst).  I don't believe he went through an artery but I don't really recall the details, ie as to how he got to the site of the cyst but it did help incredibly.  Recovery was quick - I did not stay in hospital overnight but did need to stay still for a while (hours??) before I left hospital.  

I hope it brings O relief!!    Sending lots of wishes it does her well!!


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## crohnsinct

Consent form for surgery was signed today.  It will be a total colectomy with end ileostomy.  Surgery is scheduled for 12/30.  

Due to a miscommunication, I was not in the appointment nor did we know surgery was going to come up.  We thought it was just a tube change.  

O handled it all on her own, is confident in her decision and completely understands everything.  Although she is sad it had to come to this.  

Chances are it will be a permanent ostomy and she is prepared for that and actually says once she experiences life not revolving around the bathroom she is not so sure she will want to reverse it.  

Gives a whole new meaning to the term New Year New Body!  

She joked and said maybe this year she will actually stay up to ring in the new year because she never sleeps in the hospital.  

I am not quite sure what this means for the MRE or the interventional radiology procedure.  I imagine it doesn't change either.  WE have to know the condition other ileum before surgery so the MRE will give us that and we have to actually get her to the surgery and the the interventional radiology steroid injection will hopefully do that.  

Sorry.


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## crohnsinct

LOL Maya - I would get the kids or hubby involved in cooking if I wanted to eat Cheerios for Thanksgiving Dinner!  THat's a good question about why not during scope.  IDK.  It is her colon we are targeting.  And yes, please ask your daughter's friend about the procedure, what to expect etc.  

@Tesscorm Thanks...O had a steroid injection once but it was into her hip and much less of an ordeal.  Sounds like she just has to lay there for 6 hours.  She will be admitted to the short stay unit and then go home.


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## Maya142

That’s consistent with what M’s friend said. She’s in the hospital for (minor, arthritis-related) surgery so hasn’t talked to him about a lot but he pretty much said that he was sore after the procedure but it wasn’t too bad and he had lie on his back for 6 hours for observation. His experience is with MRAs though, not exactly what O is having done.
I am now even more confused - if she’s having ileostomy then why hit the colon with steroids? Especially a month before surgery.
I am beyond impressed with O’s maturity and with the grace she is handling this with. It is not an easy thing to come to terms with for an adult, and for such a young adult it must be immeasurably harder. She is an incredibly resilient and determined kid and I’m so proud of her!! Once this surgery is done, the sky’s the limit for her!!


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## Delta_hippo

Ah, feel sad and relieved at the same time.  Sending hugs and prayers xx
Might be worth starting to think about clothes.  With an ileostomy high waisted slim or relaxed fit jeans and yoga pants are your friend, anything that has a tight low waistband or super skinny fit is not.  Basically you don’t want anything digging in or cutting across where the stoma  will be.
You can also get special underwear, which is optional, the nurses should be able to give you a link to US companies.
Post op food is very soft you are looking to avoid any insoluble fibre or things that might get stuck/ cause blockages so think custard, mousse, smooth soup, scrambled egg, avocado, white bread, yoghurt, jelly, mashed potatoes.  Avoid seeds, stalks, nuts, skins, pips.  When introducing meat and vegetables cook it all to mush initially.
When they sort her out with stoma supplies make sure you get the “banana peel” stickers, they are like an extra banana shaped translucent sticker/ plaster you can put either side of the stoma bag for extra protection- I  found out about these from a friend and had to ask especially, but they really give you a bit more confidence in the early days when out and about.  As does scent drops to put in the bag.
Peppermint tea and ginger biscuits (dunked well) are nice to have post op when feeling a bit nauseous.
I don’t know if she drives but in UK you can’t for about six weeks after op.
I think/ hope she is going to find life a lot easier being freed up from the bathroom.  If she does have option of reversal there is no time pressure to decide- my surgeon said up to 2 years to think about it was normal and fine.
Good luck to her and to all of you.


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## crohnsinct

Well @Maya142 the thing is the GI doesn't exactly know yet so we will have to see if the IR therapy stays scheduled.  Yep, O just had her check in with the surgeon and she told him she wants the surgery and they went with it.  IDK if the GI could put the kabash on the whole thing or not.  Maybe if he really felt like she wasn't strong enough but otherwise I am thinking he has to honor her wishes and stop playing around with all these investigational therapies.  Maybe the GI asked the surgeon to meet wither.  Who knows.  But I also don't expect them to cancel the IR injection because her calpro has been in the 1000-4000 range since May...and that was with EEN.  We have to get her to surgery 12/30 without a massive flare so I am assuming the shot in November is still on...assuming a washout period is not needed.  I will keep y'all posted.  

@Delta_hippo thanks for all the hints.  I keep trying to look at ostomy info but it all gets a little overwhelming to me and makes me think, "why are we doing this?" It is hard to imagine life is better but everyone says it is so she is going with it.  Her main motivating factor is that she is just really tired of being admitted and not knowing when she is going to tank and the disruption to her life.


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## Tesscorm

I feel as Delta, sad and hopeful at the same time for her.  My heart breaks for her and I'm very sorry it's come to this!  But, I so, so, so hope that she is relieved of all worries once she adjusts to the stoma and can then move ahead with her life, with nothing holding her back.  She so deserves it!


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## LuckyD

I've come across and read so many stories of folks who have found a whole new meaning to life after a stoma. They are not strapped to the bathroom and for the first time feel "free" to enjoy life again. 

There's a gentleman on one of the groups I follow who comes to mind. His name is Keith Thomas. He's on several platforms and does a lot of outreach and post about folks with a stoma. I'm including a picture in case she is interested in checking him out. Very inspiring...

I wish O a successful surgery and hope that this will only be the beginning of a new happy life for her.


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## crohnsinct

Well her most recent calpro posted and it was taken just a week after stopping EEN. It is 4480.  Not totally sure what we do about that.  Oral steroids will interfere with surgery and risk surgical outcome.  She gets the steroid injection 11/24 so she just has to make it 4 weeks.  I guess going back on EEN is an option to slow things down.  

We have an appointment with GI on Friday.


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## Maya142

Oh wow, poor O!! The surgery really is necessary. Poor kiddo. I’m so sad she has to deal with this but I hope it will give her her life back.


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## Maya142

I hope the steroid helps and the procedure is easy enough to tolerate.M says the main thing her friend said was that it was long and boring (the wait after, I mean) so to bring something to entertain herself. A movie to watch or a book or something. 
I know EEN again may be very hard on her but hopefully it will be the last time if she has to do it. My daughter says she’s a superhero - she did 16 weeks of EEN last year and found it incredibly hard.
We’re going to keep O in our thoughts.


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## Delta_hippo

Wow that is some calprotectin score.  Ouch.  When they were talking about starting stelara is that happening any time soon?  As you say don’t want to be on steroids going into surgery.  Kind of confirms her decision to go for surgery though I guess.
Sorry for getting caught up in ostomy info while you all still trying to get your heads around things.  Half the challenge is mental rather than physical in that you have a bit of you that you normally keep inside on the outside, makes you feel a bit vulnerable/ fragile at first? Takes a bit of getting used to.  Then it’s just about the practicalities of getting into a routine that works, i.e. which supplies suit best, how often to change bag etc.  But I will add mine was in the context of sudden bowel perforation, I hadn’t had months and years of life revolving around bathroom, and everything I read at the time said for people in the latter group, it is a massive relief suddenly not having to constantly worry about that.


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## crohnsinct

Thanks @Delta_hippo I am definitely going to have to lean on you for advice on the practicalities! 

My biggest concern right now is that she is having the surgery at a pediatric hospital with a general surgeon who happens to do all the GI surgeries but he is not a dedicated colorectal surgeon. He does about 7 of these a year and has a great success rate at reconnects but 7 isn’t 70. And I have heard about ostomy nurses and how invaluable they are and about all the marking of the site beforehand and how that makes your life with the bag so much better. So I just wonder if her having the surgery at a pediatric hospital is the best thing.

It doesn’t much matter because I have suggested she explore having the surgery at a really great adult hospital by us and she refused. She wants me to be able to stay with her and the adult hospitals here won’t let that happen yet due to Covid. She likes the nurses at the children’s hospital. Familiar surroundings. Feels they are gentler with patients and she has a relationship with this surgeon and knows all the GI’s.

But I do still wonder about all the “ostomy” knowledge.  I will ask as we get closer. Perhaps the adult side of the hospital has their ostomy nurse help out?


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## xmdmom

These are the questions I have for GI, ped surgeon and your daughter:
What needs to be done to get her in the best condition for surgery?  
Should she be on EEN? I know it didn't solve her problem but if it helped some, might it be worth doing it before surgery?  
How will GI/surgeon judge if she's in good enough shape for surgery? 
What are the risks if she has a lot of inflammation at the time of surgery?
Does using the IR steroids so close to surgery increase the risks of surgical complications?

I'd ask her GI and also her pedi GI surgeon, why might an adult IBD surgeon and an adult hospital be best for her?
I have found that when you ask *why might* questions, you get some interesting information.
I would also ask her: why might having a consult with an adult GI surgeon be useful? She might say she can think of no reasons but maybe she could think of some.

RE:She wants me to be able to stay with her and the adult hospitals here won’t let that happen yet due to Covid.
I wonder if there might be exceptions to those COVID overnight visitation rules at the adult hospital. I know exceptions are made at the local hospital if a doctor asks with a reason (anxiety? PTSD?)

Sending lots of hugs to you and her!


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## crohnsinct

WOW!  Thanks @xmdmom. It really helps when you lay out the questions so logically.  As you can imagine I am a little all over the place and that helps me focus in a way that won’t be threatening to them.


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## Maya142

I just wanted to echo what xmdmom said - My daughter has PTSD and I was allowed to stay with her last year for 12 day hospitalization.

I would not assume that all adult hospitals are not allowing visitors. M was hospitalized 3 times last year - twice at adult hospitals and once at a pediatric hospital. In March 2020 she was at a adult hospital and since that’s when COVID was starting, she had to stay without me and I wasn’t allowed to visit at all - no visitors at all. However, by November, when she was hospitalized again, they were allowing visitors and allowed me to stay the night with her. In summer of 2020, she was hospitalized at a pediatric hospital and was allowed one parent to stay the night and one adult (a family member) was allowed to visit. She was not allowed to leave her room at all and the rules were very strict. They wouldn’t even let us keep ice packs in the freezer.

She’s just out of another hospitalization at that same pediatric hospital and now visitors are allowed during the day (so she had friend visit twice) and you can have up to two family members stay at night (though logistically speaking no idea how we’d even fit two extra adults in a hospital room!!). The rules are much more relaxed, she could walk around outside her room and visit the roof garden. 

So I really would not just assume that adult hospitals are not allowing an overnight visitor. The rules really have been relaxed a LOT. For all of 2020 and about half of 2021, she had to do outpatient procedures that required sedation or anesthesia by herself, despite the PTSD. But they took extra care of her and always let me stay outside, in the waiting room, so I wasn’t too far away (they weren’t even allowing family members in the waiting room at the time). She now does not need me there but those rules have also been relaxed now (and all her procedures are at adult hospitals) and I can go back with her before procedures, if she wants that. 

She has been hospitalized 15 times in 7 years so she is very sick of hospitalizations. But as she has gotten older, she has actually started preferring adult hospitals because she says they treat her like an adult and she feels like they listen to her more. Her voice counts more and she does really prefer being treated like an adult. But she is a few years older than O.

But at the same time, she definitely does feel that pediatric hospitals are friendlier and gentler. And her most major surgeries were done at a children’s hospital and she is glad of that, though in her case it was a surgeon who treated both adults and kids and had admitting privileges at both the adult and pediatric side of the hospital. We were very glad to have a surgeon with so much experience since her replacements were joints that are less commonly replaced (not hip or knee). At the time, she did not know him well - she was his patient just for 6 months before the surgery. But he was really the best option because he had so much experience and her joints were a mess.

I think there is no harm in exploring the option of surgery at an adult hospital with a surgeon who is a dedicated colorectal surgeon. But I do also recognize it is a lot easier to do a major surgery at a hospital you know and with a surgeon you know.

But I also wonder if there is a colorectal surgeon at the adult counterpart of the hospital she goes to who may be able to operate on her at the pediatric hospital. Or could at least consult. Or at the very least, could she be set up to see ostomy nurses at the adult hospital after discharge? It’s hard because there is not a lot of time before surgery and I know she either wants surgery this December or next December so not doing surgery this December is probably not a good or safe option. But at the same time, I’d definitely be more comfortable if she was seeing a colorectal surgeon, especially given the amount of inflammation there is. And I think a second opinion is always a good idea with a major surgery, though again, since she is home so infrequently I do recognize that’s easier said than done.

I think @xmdmom listed some great questions. I also wonder when the switch to Stelara is going to happen. Since it takes a while to kick in, I’m worried about inflammation going up if she’s switched to Stelara right before surgery.
Also, if she’s not willing to do EEN before the surgery, would she be willing to do supplemental feeds every night instead of 3 times a week? I know she’s gained weight but she still does not have much of a cushion.


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## crohnsinct

Wow @Maya142 poor M has really been put through the ringer.

It is amazing how different the regions of the country are. I can say that when we dropped T off at school we walked into a convenience store and we were the only people wearing masks. It was like they didn’t even know there was a pandemic. Where O goes to school it was a little better. We are in NYC now and there isn’t even an indoor mask mandate although many businesses are asking you to wear a mask.

On the west coast each hospital is slightly different but I Checked and both will not allow anyone to accompany a patient older than 21. They may have visitors after the surgery once admitted, but only for a very narrow period of time and no overnight visitors. I agree PTSD or other reasons are justifiable but I just don’t think O would fall into any of those categories.

I also found out that there are three dedicated wound care/ostomy/incontinence nurses at the children’s hospital. All three have been specially trained in ostomy care at Emory. So that makes me feel a bit better.

I don’t even know if the GI is going to approve the surgery in December so I am trying not to get too far ahead of myself. There isn’t time to find an adult surgeon for a December surgery but if for some reason it gets pushed off I am definitely pushing the idea of seeing some adult centers. I agree with M. I would like to be treated like an adult and I don’t necessarily think that adult care = cold.  But like you said if she has it done now and it is easier for her to have it with a surgeon she has an established relationship with and at a hospital she is comfortable in and with so be it.

I will know more Friday. Wish I could FaceTime you all in!


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## Maya142

She has definitely had a tough time. This was her 11th surgery. She does have major PTSD and is working with a trauma therapist now, and a large part of the trauma has been medical. 

Things are definitely in different regions - safer in the Northeast I think. Our town has 100% seniors over 80 fully vaccinated, 98% of 65+ fully vaccinated and 80% of 12 and over fully vaccinated. When you look at teens/young adults, of 12-17 year olds 95% are fully vaccinated and of all 18-29 year olds only 65% are fully vaccinated (I guess if you're under 18, your parents are making good choices for you, and with older younger adults, the numbers fall significantly, though both my daughters don't have any friends at all that are unvaccinated).



> I also found out that there are three dedicated wound care/ostomy/incontinence nurses at the children’s hospital. All three have been specially trained in ostomy care at Emory. So that makes me feel a bit better.


I think this will make a huge difference. And honestly, if you are doing the surgery this December, then it does make sense to do it with the surgeon she knows and the GIs she knows, since surgery is such a huge step.

But yes, exactly as you said, all adult hospitals aren't awful. All adult providers aren't unfriendly or unkind - I think you just have to look a little harder to find good ones sometimes. My daughter has a great team now, but it took us a while to put it together. It should be easier for O since her care is largely just managed by her GI and now surgeon. So if, for some reason, the surgery is put off, I would definitely try to convince O to seek another opinion, especially since she will have to transition soon.


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## Delta_hippo

Hope the appointment goes well today, thinking of you all x


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## crohnsinct

Had the appointment with GI.  He feels strongly that her low BMI was keeping the drugs from being able to work well and that now that she is on an upward trend she will reach a weight where the drugs will work.  Umm ok but then why didn’t we try this sooner?

He says she is medically stable and looks good (over telehealth).

He see’s good results with intra arterial prednisolone as it is very targeted. Some patients feel good right away.

He asked her if she gains weight and gets good results with the shot will she still want surgery. She said “yes”.

He asked again if we postpone the December surgery when would be the next time she could have surgery. Answer is still next December.

I reminded him that insurance told us in January we had to cut back to 1 biologic. He admitted our roads are closing.

He said the November MRI will give us a lot more info ie: is the colon fibrotic or just inflamed and state of ileum. And what we find might help us make our decision. 


O is frustrated. She has made her decision. But now he has her second guessing herself. She is concerned that she will flare massively and end up in the hospital before next December. She also says that if a doctor is fighting so hard to avoid colectomy is must be really awful

Nit doing anything right now about the continued high calpro. 

I guess we will just wait and see what MRI says and take it from there.


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## xmdmom

Her GI  "feels strongly that her low BMI was keeping the drugs from being able to work well "
Did he mention the mechanism for this?  (I'm curious.)
What weight/BMI does he think she needs to be for the drugs to work?  

I believe she's on Humira and Entyvio --- forgive me if I'm wrong!
When did she start Humira and increase to weekly injections? Do you think she has or had a good response to it?
When did she start Entyvio? Do you think she has ever had a good response to it?
What has her BMI (or weight) been during the time she's been on these drugs? 

She looks good to him.  How does she look to you? How does she feel?

What do you/does she think is responsible for her most recent weight gain? May it continue!


----------



## crohnsinct

No, he didn’t mention the mechanism. He has said in the past that when body weight goes too low all the body’s energy goes to everyday functions and there is little left over for healing but IDK if that is what he meant this time.

He did say he wanted her at 130/135 but yesterday the RD said they talked about 125 being a good weight. She is 119.5.

I honestly don’t buy the weight argument. I mean when she is really low at 111 sure but she has been 120 before and been fine.

She started Entyvio spring of 2019. Never had a strong or good response to it. Humira was started spring if 2020. Increased to weekly June 3021. She had somewhat of a response but not great. Then they added back an antibiotic cocktail fall if ‘21 and that’s when she really took off but quickly went bad again.

It seems every little tweak he makes she gets a little better but then turns back down or tanks.

Honestly her weight has been 117-121 for years now. Often dipping due. Into the low teens when she gets really sick.

She us finding it hard that they keep pressuring her to maintain the weight. As if it is her fault she keeps tanking. At one point he blamed her stress. Not just emotional but physical. He kept telling her she had to rest more to allow her body to heal. That also made her feel like her tanking was her fault.

She does look the best she has in a long time. Stronger and more endurance also. I owe all of that to the nutrition. It all has to do with formula feeds. As long as she gets enough formula in she gains and looks great. She is only doing supplemental formula three nights a week (9 cartons each of those nights so 2250 calories on top of whatever food she ate that day) and gas list about a pound or 2 but stabilized.

She says she feels good. BM’s down to 6-8, little urgency and no blood. So really the best she has been in years but just not getting better and has had calpro over 1000 since December 2020 and tanked over summer and inpatient. So who knows now that she is consistently over 3000 how long she will stay this good.

She is being very logical with the surgery decision. If she could wait and see she would but with no time off from her program until next December she doesn’t want to take a chance. If she tanks and ends up inpatient again it means dropping out of her program for a whole year because they only offer the classes once a year. She has already had to drop her head assistantship because of her health. She doesn’t want to have to lose more.


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## xmdmom

Glad she looks good and feels good!

I will preface the rest by saying that I don't know a lot about these medicines while her GI is an expert and has a lot of experience and knowledge.

It's true that really malnourished people don't heal well but I agree with you that it's not clear that that's what's going on with her given her past weights and BMI now that is .84,  based on 121 lb/5'8 (underweight  BMI < .85 )

So the drugs not working could be due to low BMI/malnutrition (his theory), or the drugs could just not be working for her.  The latter would not be unusual.  If she started Entyvio in 2019,  and she hasn't had a good response, why does he think it will start working now? Again he may have experience and/or knowledge that makes him hopeful?

However, I think we can get lulled into thinking that drugs should work but when you look at the Entyvio website, only 39% of patients with Crohn's disease achieved remission at one year compared to 22% of patients on placebo at 1 year.  In addition,  I've read that people with Crohn's for longer duration, more severe disease, and/or prior TNF antagonist use/failure generally have a lower response with Entyvio.  So if it's not working or not working well, it wouldn't be surprising.  [https://onlinelibrary.wiley.com/doi/abs/10.1111/apt.14550 + others]

Given the very high calpro levels, can the MRI and steroid injection happen sooner?

Last question; If she continues to have this level of inflammation, will that affect the surgery?

Wishing her improving health!


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## crohnsinct

@xmdmom your input and insight is invaluable!  

I truly think that these drugs just aren’t working. Even if it was true that malnourished patients don’t respond well, we have doubled and quadrupled dosing if Entyvio. PLUS added weekly Humira PLUSadded antibiotic cocktails and budesonide and sulfasalazine and uceris and EEN and SCD…..and we are still at this point. Even malnourished with everything we threw at this thing I would think something would work.

We can’t get the MRI or steroid injection sooner because she can’t come home from school until Thanksgiving.

Good question on doing surgery with untreated inflammation for so long. I mean I imagine it “could” be done because they do it all the time with hospitalized patients but whether or not it is ideal is a whole other story.

I am trying to just be patient and see what the MRI reveals and what her response is to the injection. Then we could discuss how realistic the steroid injection therapy is.

We also have the impending insurance denial on double biologic so even if the steroid injections work now, will they once she is on a single biologic?

Ugh.


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## my little penguin

Hoping she gets the surgery she needs in December.
That must be so hard on her to have finally made peace with it and a decision only to have it second guessed .
Hugs to you and her


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## crohnsinct

Hey y'all  Been a minute.  

O continues to report status quo.  Weight pretty steady at about 120/121.  

She came home.  Looks pretty good.  Frequency seems to have ticked up a bit and a little bleeding.  Her appetite is trash and she can barely get 4 bottles of formula in without being woken up due to nausea. She can't eat without feeling full super quick and she is losing weight slowly.  

Calpro is now 4700. 

She had her MRI yesterday and Interventional Radiology consult.  The Radiologist told us that it seems the EEN healed her TI and most of her rectum looks good.  Her sigmoid colon is very, very inflamed.  He explained the procedure and what they have been trying to do at length.  We like him.  Straight shooter.  

So the basic premise is that oral steroids go everywhere and of course we don't want that but also because they go everywhere even less is actually getting the colon.  The fact that she has been in this flare for 6 years now and hospitalized multiple times means it is pretty bad.  The goal with this steroid injection is to get the drug delivered right to where it is need and to bring down inflammation quickly so hopefully then the drugs have a fighting chance.  Similar to what we did when she was first dx'd and Remicade could get her to remission without steroids.  We induced a good remission and mucosal healing with EEN and then Remicade worked like a charm.  He described her disease as a run away car that we. just can't catch.  We need an obstacle to stop it. 

They will go in through the artery in her groin, insert a sheath, go to her abdomen and then take one of the hundreds of branches off that down to her sigmoid.  They are going to inject 100 mg's between two locations and maybe save a bit for the rectum.  But this involves traveling to the first spot, backtracking and going to the second and then to the rectum.  Think of it as exits off a highway.  He created a map last night based on her MRI.  Super cool. 

She is actually in the procedure now.  It is 3 hours long and after that they usually keep the kids but since she is 22 they said 6 hours laying flat in short stay and if all goes well she can go home. 

She is only the 5th or 6th patient they have tried this with.  He said so far everyone has gotten immediate relief but it won't last for ever.  He is thinking 2-4 weeks.  Then we see if the drugs can maintain her. It is definitely a study of sorts and they have her keeping a detailed symptom log and asked for permission to use her images, video of procedure, info etc, for research and teaching purposes which is pretty standard at a teaching hospital anyway.  

This guy is hoping that down the road, they can use this technique with newer drugs that will be developed for this application.  He also said that for some patients this might be an episodic application, so you just use it when you are flaring as opposed to EEN or Steroids.  He is also big into stem cell therapy and mentioned something about that. 

He is really hoping it helps her avoid the colectomy but says that we all have to just be cautiously optimistic.  

The good thing is she is a great steroid responder.  The bad thing is as soon as we withdraw the steroids she goes right back.  

The other wild card is that she is currently on double Entyvio and double Humira and we have to withdraw one of the drugs starting 1/1.  So if it works with both double biologics there is no guarantee that a single biologic will continue to hold her.  

So at best avoid colectomy, at mediocre postpone colectomy to spring (which we all know in her mind is not an option) and worst; colectomy 12/30 which she has already signed up for.  

I will keep y'all posted.


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## crohnsinct

OK well she is out. IR doc came to talk with me.  

He said her colon is very abnormal.  He has never seen one this bad.  There is severe vasculitis in her rectum and sigmoid colon and while he hates to use the word dead, there is a section that is not likely to be rescued.  Apparently this is a new discovery...vasculitis as it relates to IBD.  They didn't know this occurred in the bowel until they started using interventional radiology to actually go in and look.  

At this point we are not looking at the steroid injection helping the drugs work.  He feels she is beyond that point.  But he did say now that they saw what is going on they have some other ideas of what might work for her.  Stem cell therapy being one of them but they would all fall under that category of compassionate use and require hospital approval and significant fundraising etc.  

He feels she is definitely going to have a colectomy but these things could postpone it another 10 years and maybe medicine will catch up at that point.  However, he said while this is all fascinating to us, has serious implications for moving IBD care forward, and we all feel she should take every shot she could take, we are not a 22 year old girl trying to have a life and finish her degree.  

At this point we are not speaking with her about any of this.  We are just seeing if she gets relief from the injection and taking it one small step at a time.  But yesterday I was 1000% thinking colectomy end of month and now I am thinking maybe let's try and if not then next December?


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## Maya142

Hope the procedure goes well. That's amazing that the EEN has healed her TI and most of her rectum - does that mean that if she has the colectomy, she may be able to reconnect, since her rectum looks a whole lot better?

About the two biologics - M was on two biologics for 4 years and we may go back to 2 biologics soon. Could you appeal? She was also on a double dose of both biologics but because she had literally tried everything else, it was approved. It did take some appealing, but we were successful.

In terms of the formula causing nausea, have you tried slowing down the rate? I know O doesn't have Gastroparesis, but when you lose so much weight and your body goes into starvation mode, that actually slows motility because your body is trying to hold on to every bit of food. So just being malnourished can cause nausea. One option is to slow feeds and to do them over a longer period of time. The other option is to try a GJ tube and a third option is to a motility med like Erythromycin before feeds.


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## Maya142

I wrote that before I saw your second post...poor, poor O. It breaks my heart that it has gotten so bad. 

I'm somewhat confused though. If a section of her colon is essentially dead, doesn't it have to come out ASAP?



> But yesterday I was 1000% thinking colectomy end of month and now I am thinking maybe let's try and if not then next December?


When you say postponing the surgery, do you mean so you can try the stem cell transplant? What were the other ideas? I guess I'm just concerned that if her colon looks so bad that waiting a year to do surgery and trying very experimental treatments may do more harm than good.

Sending big hugs. Poor kiddo.


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## crohnsinct

Thanks @Maya142 The issue with insurance is that they have approved these double biologics and the disease has continued to advance so we don't really have a leg to stand on with an appeal.  Maybe if this injection gets her to a point where the drugs could do something they would consider?  

She has slowed the rate down to in the 70's.  When she was inpatient they kept playing with the rate but her nurse figured out it is a volume issue.  She said less cans more frequently and that worked.  So I think the goal is to try that but we are waiting to see what happens with symptoms after this injection.  They said the last 5 patients all saw immediate benefits.  Like literally while they were in the hospital, same day, they suddenly got hungry and were not running to the bathroom.  

Yes, the improved TI and rectum increase the chances of a successful reconnect.  They would just remove the diseased portion of the rectum.  But this guy also said just like the colectomy is likely at some point he also feels it will be permanent.


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## crohnsinct

I think the idea is trying to regenerate that "dead" portion because they can still see a few vessels running to that area.  If they can't, but get everything else healed I think then the surgery becomes a colonic resection.  

Yes, I meant postponing so they could try the stem cell and "other" (sorry can't remember what they were) therapies.  BUT getting approval and funding for that sort of thing would take at least 6 months.  

I agree!  The reward is great if we postpone and all these other things work but the risk is also high.  I just don't know what the right answer is.  I guess O will let us know.  But right now it is just a waiting game. 

Her BP is really low so she might not get out today.


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## my little penguin

Sorry things are so very confusing right now 
Hugs to you and her .


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## Maya142

What about getting dermatology to prescribe Stelara and GI to prescribe Humira? Or vice versa, with derm doing Humira and GI doing Entyvio? That's how we do it - my daughter has not come close to remission but her doctors have fought for two biologics because having multiple surgeries (she's had 11 so far) and hospitalizations are more expensive than biologics! 

I'm sorry things are so confusing. I hope your GI is able to guide you and figure out a good plan for O. And I hope her BP comes up so she can go home soon!


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## crohnsinct

We’ll derm prescribing Humira won’t work because Humira isn’t helping her psoriasis what so ever.

Maybe Stelara but the derm dose is so much lower than theIBD dose so not sure.

That is a good point in hospitalizations BUT in O’s case the colectomy will actually stop that more than drugs will.  no colon;no worries.


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## my little penguin

We have one doc prescribe two biologics 
Both injectable’s and both through prescription benefits 
But they are use to treat two separate conditions (actually there -Stelara does the crohns and arthritis) 
Even then it took a big long fight for many months .
Two biologics for one condition would be extremely difficult to stay approved


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## crohnsinct

It's been a year and a half on Humira and 2.5 on Entyvioand we are still at this point.  It would be hard to convince them to poor more money into this option.  I guess there is always Stelara but not likely that will rescue her colon at this point.  Same with Cimzia.  Her old GI doesn't even use it anymore.


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## Jmrogers4

Just want to give big hugs,  haven't been on the forum for quite some time.


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## xmdmom

How is she feeling?  Did she get any relief from the injection?


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## crohnsinct

She recovered nicely.  She did get her appetite back a bit and ate a good amount for Thanksgiving and gained back the two pounds she lost.  Her frequency was down to only 4 with only trace amounts of blood.  So it was either a random good day or the shot really improved things.  

She went back to school yesterday.  No clue how today is going.


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## xmdmom

I'm glad she recovered well and really hope she gets at least a few weeks of improvement from the steroid injection. 

I'm wondering if the doctor(s) talked to her about postponing the colectomy and trying experimental treatments.   I can't imagine 
how it would feel to have it in your mind that you're having a colectomy in a month and then have doctors reopen the discussion about trying other treatments first.

When the doctor talked about stem cell treatments, do you know if he was talking about an intra-arterial targeted injection or a systemic injection?
Do her doctors have experience with stem cell treatments? 

From skimming this 2021 review, stem cells seem to work for Crohn's perianal fistulas but there seems to be much less info about stem cells efficacy and safety in the treatment of luminal disease (ex. colitis). 

The authors say: "In conclusion, recent studies on local MSC injection for PFCD (perianal fistula) continue to support long-term efficacy while maintaining a favorable safety profile. The evidence for systemic MSC (mesenchymal stem cell) infusion in luminal IBD remains mixed due to marked methodological heterogeneity, and unclear safety profiles. Although further studies are needed to better establish the role of this novel treatment modality, MSCs are proving to be a very exciting addition to our therapeutic armamentarium for IBD". 

Unless I'm missing something, stem cell treatment could only be used as part of a clinical trial or perhaps compassionate use.  I can definitely understand her doctors wanting to preserve her colon and thinking, "Stem cells might work here," but I'd want to know about the safety and what the likelihood of benefit would be.


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## Maya142

Really glad to hear she is feeling better!


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## Delta_hippo

Such a lot for her to get her head around and especially confusing when she had made some peace with surgery and it’s not far away.  I don’t know what the implications of the steroids injections are for adrenals, bone density etc. in terms of can they keep doing it, bearing in mind how adamant she is school comes first.
Stem cell as far as I know is exploratory and potentially a game changer but comes with a big risk that they run the immune system right down and revamp so you have a decent period of serious germ avoidance because you are so immune suppressed that an unlucky encounter with a germ or fungus spore can be extremely serious. So it is a big risk for a big prize.  
I think I would still be wanting a conversation about stelara either on its own or as an add on especially given her psoriasis- it is super expensive but she is surely a candidate having tried so many other options.
So difficult to know what to do for the best.  I’m glad that at least the injection seems to have helped.


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## Maya142

> I think I would still be wanting a conversation about stelara either on its own or as an add on especially given her psoriasis- it is super expensive but she is surely a candidate having tried so many other options.


My daughter's rheumatologist prescribed Simponi at the IBD dose for M - the arthritis dose is half the IBD dose. Her reasoning was that while she was prescribing it for M's joints, M also had IBD, so needed the IBD dose. I wonder if O's dermatologist could do something like that - the Stelara would be for her psoriasis, but since she has IBD, she would need the IBD dose. Since the other biologic O's GI prescribes is an infusion, insurance may be ok with it (or, well, they may not notice).

But I can't imagine her switching biologics if she is stopping one - I feel like that would lead to hospitalization if you stopped Entyvio and Humira and tried Stelara, unless she was on high doses of steroids and/or EEN and maybe even then. But if you switched Humira for Stelara and did EEN/steroids and continued Entyvio, then maybe that would work - IF she wanted to try it while waiting for funding for any sort of experimental treatments. 

But to be honest, to me it sounds like she really does need the colectomy, though I'm very glad she is feeling better.

But if you do decide to pursue something experimental, I would definitely get a second opinion before proceeding with any sort of stem cell treatment - at Mayo or Cleveland Clinic or some big IBD program that has treated a lot of patients.


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## Tesscorm

Just saw your updates now.  Poor O... she really has battled lots!!  I hope this gets her feeling decently for a little while at least!!

With your talk of stem cell, I recalled a member here who had had a stem cell treatment and had a great outcome.  It was when S was initially diagnosed, so many years ago but you might be able to find his posts.  From what I recall, the member had very severe crohns and the stem cell treatment gave him an incredible improvement.  I believe his name was Patrick??  He had the treatment done at a hospital in Chicago...  I even recall his insurance covered the cost!  He posted daily updates after his treatment and gradually extended the time between his posts as all was going well...  Is this ringing any bells for any of the older members??  tagging couple of the other members who may remember...   @David @Jennifer


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## Tesscorm

I think this is the thread….  Or, at least, I think it’s talking about the same treatment and dr.






						Most exciting breakthrough that you're MISSING!!
					

Most of you may remember my blog from last year, where I underwent a stem cell transplant. At the time the protocal was to use your own blood, to get your stem cells for later use at the end of chemo treatment. This would grow a new immune system without the active crohns memory B cells that...



					crohnsforum.com


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## Tesscorm

This is the member’s blog detailing his experience 






						My Stem Cell Transplant
					






					mypsct.blogspot.com


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## xmdmom

Patrick appears to have had a hematopoietic stem cell transplant in which they give chemotherapy to kill off your bone marrow and replace it with stem cells that create new bloods cells ( red, white, platelets). Apparently it changes your immune system such that crohns can be cured.  However there are a lot of risks with this type of stem cell transplant. 
See https://pubmed.ncbi.nlm.nih.gov/28147358/.


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## crohnsinct

Hi guys, sorry I haven't been around.  

To answer @xmdmom: 

- yes it is very difficult to come to terms with surgery only to have them say "wait".  She is right now not interested but we got the pre cert for the surgery and things are getting real and I think she is getting nervous. 

- they have not spoken to her about the "other" things they could do. It is a lot to process and she has finals and they just want her to get through exams and see what the steroid injection brings. When she comes home they will present their findings and thoughts. 

- not really quite sure what stem cell treatments they are considering but they did say it would be under compassionate use and need hospital approval.  They said that could take 6 months, then finding the stem cells and then the fundraising.

- we haven't gotten to the risk/reward discussion yet but the doc who treated that Patrick person definitely had some deaths in his study.  I also think Patrick had some other reasons for the Stem cell therapy and it helping his Crohn's was just incidental but I could be mistaken, I haven't read his blog that closely.  

To answer @Maya142 

- I think the double biologic ship has sailed. Insurance has approved way more than anyone could ask them to. They have been stellar. They have told us that they will no longer approve double biologics for her. Not really sure they will even let her continue Entyvio Q4 going forward. You are 1000% right though, switching to Stelara mono therapy would be a bad idea with steroids or EEN and EEN hasn't worked this time and steroids are a no/no this close to surgery. 

-  The IR doc said that IF she does these other treatments, in his opinion she is still going to end up with a colectomy eventually...maybe we could extend it out 10 years.  I just don't know if it is worth it.  

So O had a really rough day yesterday.  Frequency and bleeding up.  Tried a second O/N feed at 4 cartons and nearly threw up at the end.  Her weight is back down to 119.  

Not sure where this leaves us.  

Her next appointment with GI is 12/10...right after her last final.  

Insurance has approved the surgery and hospital stay.  Gulp!  Things are getting real.


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## Maya142

They could switch her G tube to a GJ tube... that would prevent the vomiting and should help with the nausea. IR would do the switch since it has to be done with fluoroscopy. But she's back at school, right?

Honestly, to me the colectomy seems like the right path for her. But I can't even imagine how scary it is for her and you. I will hope that this time next year the ONLY thing she has to worry about is exams!!

Sending big hugs!!


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## crohnsinct

Thanks @Maya142 Honestly it is awful.  First semester grad school.  She is a Grad assistant.  She is looking for an externship site, taking exams, wrapping up the semester with her grad assistant program, studying, meetingsetc.  Then add on not feeling well and updating the docs on the details following the procedure and wondering what they are thinking, waiting to hear what the path forward is and whether or not the GI will approve the surgery and whether or not you are going to massively go off the rails before the last final....It is all really a lot.  

As for how I am feeling?  I still can't believe we are here.  I am a bit numb with disbelief and holding my breath waiting for the team to decide if we are actually going to do this.  I am sad for her.  I know that most people go on to live perfectly normal lives and are very happy with their ostomy but just sad it had to come to this.


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## crohnsinct

Hey y'all...not so quick update. 

O has not had any response to the injection.  What little glimmer of hope we experienced on Thanksgiving was just that...a glimmer.  She went right back to her old ways and actually started bleeding more and losing weight.  Her CRP is increasing.  We are waiting for her cal pro. 

We had her appointment with the GI today.  He is not proposing any of those compassionate use measures.  He has researched it and spoken with various department heads etc and in the end the risks far outweigh the benefits.  Sorry if that got everyone's hopes up.  

He would like to throw one last Hail Mary pass at this thing.  He wants to change her dx to UC and order Tofacitinib.  He and I were talking and I am sure that this move is due to all the positive results being presented at AIBD this week.  Ofcourse, discontinuing her other drugs and moving to Tofa leaves her TI unprotected but he will pursue getting Stelara also approved but that won't be a game changer as far as the surgery goes because he is not expecting Stelara to rescue her colon.  Besides, he can't very well order Stelara for Crohns of the small bowel if her dx is U.C.  

O was upset and pushed the surgery but in the end agreed to try Tofa.  The GI said we would know within three weeks if it was going to work.  That puts us past the surgery date.  So he agreed that we would assess at 2.5 weeks.  But that is only if she starts taking the pills today...what are the chances it gets approved and orders today? O was very concerned and said, "But what if I respond now and then tank later...then it is another hospital stay and losing school etc".  They said then you have the surgery in March during spring break and miss a week of school.  That set her off.  She said she can't and they offered to write all kinds of letters etc. Her GI also said that Tofa doesn't have a very high secondary loss of response rate like the anti tnfs. 

On top of this we are trying Zofran a half-hour before tube feeds, periactin, Live Leaf and Pro Butyrate for her nausea and lack of appetite.  All in an effort to get some weight on her and put her in a better position for the drugs to work and for surgery.  

Yes, I am mad.  I don't understand why Tofa wasn't presented sooner.  We could have been so much further along by now.  I don't understand why we wasted our time with the steroid injection, or the g tube for that matter.  But what's done is done.  Being mad won't help anyone.  I am trying to be gracious and give him the benefit of the doubt.  O was fighting the surgery vehemently.  It wasn't until October that she came around.  Maybe it just took him time to catch up.  

O is sort of hoping Tofa doesn't work.  She just wants an end to all of this.


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## Maya142

Poor O!!! That is so confusing and hard to understand, particularly since she has fought so hard to avoid the surgery and has only just come to terms with it.

My daughter and my husband have been on JAK inhibitors. In fact, my husband did a Tofacitinib trial for AS. He was convinced he got the placebo but EIGHT weeks after starting it, he started feeling better. And his incredibly damaged and fused ankle actually became more flexible and less swollen. And he regained some spinal mobility. After the trial, he had to switch to a different biologic and has lost those gains. 

M is on Upadacitinib and was similarly told that she might see improvement in a few weeks, but it would really take 6-8 weeks for her to know whether it was really working. She's doing ok now...she's on a double dose with MTX but is still seeing swelling in her fingers and ankles. BUT her IBD, which was flaring when she was on Cimzia, is now a lot better. But that really did take about 8-9 weeks. Upadacitinib or Rinvoq is the one in trials for Crohn's and is actually doing very well in trials. It's also doing well in trials for UC but an even higher dose (arthritis dose is 15 mg, UC dose is 45 mg induction for 8 weeks and then 30 mg. M is now on 30 mg). Tofacitinib or Xeljanz didn't do so well in Crohn's.

But the dose of Xeljanz used for UC is much higher than that used for AS. I believe it starts at 10 mg twice a day for induction and then 5 mg twice daily for maintenance, though the prescribing info says that 10 mg twice daily can also be used for maintenance if necessary.

Poor O. I'm so sorry she has to try one more thing. I'm going to hope it works for her.

As for Stelara, well, it should still be an option with a UC dx because it's approved for UC too!

Did she agree to surgery in March? I know she really, really doesn't want to miss school. 



> On top of this we are trying Zofran a half-hour before tube feeds, periactin, Live Leaf and Pro Butyrate for her nausea and lack of appetite. All in an effort to get some weight on her and put her in a better position for the drugs to work and for surgery.


We tried Zofran and Periactin before tube feeds without success. Then Erythromycin. What worked for M was switching to a GJ tube, but she does have Gastroparesis. But I suspect O does have slow motility from being malnourished for so long. 

Did you discuss moving to fewer cartons every day instead of more 3 days a week? I really think that is much more likely to help than anything else you are trying. I know it's a pain, but 2 cartons daily or even 6 days a week is more likely to work than 4 cartons 3x per week, based on all the motility research I've done.

Sending BIG hugs to O. I know she is tired and she is such a trooper. I still wish she'd consider taking next semester off. That would give her lots of time to try Xeljanz, get her weight up and to have surgery, if necessary. She's home soon, right? This weekend? Any chance they'd consider switching to a GJ tube?


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## crohnsinct

Thanks @Maya142 
She can’t just take a semester off.  It would have to be a whole year as they move through the program in a cohort and the schools only offer the classes once a year.

Sorry I forgot to say, she is going to try 3 cartons 4 days a week. Then take it from there.

I think her GI is thinking she will do the 10mg indefinitely.

She agreed to try the Tofacitinib but is still really resisting postponing the surgery to March. Match surgery is just very inconvenient. She wouldn’t have much time to recuperate and they say 6 weeks to be back full strength. She literally just has a week off and they want her in ca for another two weeks after. She would have to cancel all her clinic hours and give her clients to other therapists. It’s just very bad timing. But she did agree to let the GI and social worker at least try to work something out with the university.

I have t done exhaustive research on Tofa but it being a JAK inhibitor makes sense that it might work.Plus the news coming out of AIBD is so so positive about remission results.


----------



## WiscoMom

This all sounds incredibly frustrating. A last-minute new plan is always so jarring. You have to deal with the new information along with the frustration that it wasn't presented sooner. I know our doctor can often be so linear in her thinking and actions, and I feel like sometimes she doesn't fully take into consideration the dynamic, longer term challenges that come from presenting a new plan so abruptly.


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## xmdmom

I'm very sorry that the injection didn’t work, that she is losing weight and feeling ill and that the plan keeps changing.

I had never heard of Tofa so I googled.   I see Tofa is approved for UC and not for Crohn's and that "studies in CD patients were disappointing and the primary end point of clinical remission could not be met in the respective phase II induction and maintenance trials."   I would very much like to know if the positive results at this weeks conference were about Crohn's, and what specifically was found. It would not be surprising for drugs to work differently in UC and Crohn's given that they are two different diseases.   If the new studies are in Crohn's, I'm wondering why the results are so much better than before-- what are they doing differently?

I saw an article entitled "Tofacitinib Induction Therapy Reduces Symptoms Within 3 Days for Patients With Ulcerative Colitis" so apparently it can work fast for some in UC.  

This retrospective observational study of real word life experience in mainly UC patients found 36% had a clinical response at 8 weeks. Of the 26 patients followed for 12 months, 27% were in clinical, steroid-free remission.  32/58 discontinued because of lack of response or adverse effect. [All patients but 4 had previously failed treatment with anti-TNF (93%) and 81% had failed anti-integrin. ]

In a retrospective study of real world experience with Tofa and Crohn's, 46% had a clinical response at 8 weeks. "Tofacitinib was discontinued in 54.5% of the patients (42/76), most frequently because of no response (30.3%) or loss of response (15.8%)." [Most patients (98.7%) had previously been treated with a biologic therapy before initiating tofacitinib, with 48.7% having failed at least 2 prior classes of biologic therapy.]

The watch for 2.5 weeks is nerve-wracking. Did patients with Crohn's respond that fast in the new reports?

I also saw reports of "excess risk for herpes zoster (HZ) in patients who receive tofacitinib" at least in RA, especially with steroids.  I don't know if this is an issue in a 20 year old but something to ask her doc about if she takes Tofa.

Sending hugs!


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## crohnsinct

Thanks @xmdmom.  Your perspective is invaluable.

The conference presentations are mostly about UC but there have been a few that presented CD data. 


I get they they are super excited about 21% remission rate in a population previously medically refractory but those links do mention at the end of 8 weeks etc. I am concerned that 2.5 weeks just isn’t long enough to assess and we are going to find ourselves on 12/29 with him badgering her again to give it more time. At that point, she will likely feel like,”well I came this far so mine as well see it through”. Eight weeks will bring her to February and you know her, she tanks  fast when totally unprotected and then she still isn’t in good shape for surgery and we risk it being emergent.

I get that her Crohn’s acts more like CD but we tried other great UC treatments that have proven to rescue patients prior to colectomy; CDED and Entyvio. And they didn’t work.  I just don’t know why he thinks we should give Tofa a try.  Why is he so determined to avoid surgery?  I think because she is not in the best shape to have a good outcome right now.  I am very glad she is coming home today.  This way we could hopefully make all her favorite foods and maybe help her gain weight. I am thinking of cooking some of her SCD favorites because it did help a little.


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## xmdmom

21% only sounds good to me if there's no other option.  I'm concerned too that her condition seems precarious.  If Tofa doesn't work quickly, 
she would seem to be continuing to be at risk for serious deterioration.  How much risk there is, I don't know.  If he said, the new studies were using a different dose or schedule, and the results with CD are so much better than previously,  I think I might be more interested in trying Tofa.

"Why is he so determined to avoid surgery? I think because she is not in the best shape to have a good outcome right now." Can you ask him (and surgeon) if he's worried about her having surgery in her current condition?

What kind of therapy  does she do?  Is it a type that can be done virtually? I know speech pathology students has been doing virtual work with clients on line where I live (at least w pronunciation).  If it's two or three weeks of an absence, it seems like the school can figure out how she could make it up or get credit another way. People get Covid and are out for weeks or have accidents. Life happens. I know she doesn't want to miss school but I'm guessing it is doable if necessary.  It's not an elective procedure.


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## crohnsinct

^ THAT!  We all explained to her that the university must understand that things happen...people get unexpectedly sick, accidents, deaths in the family etc.  They can't really expect you to never ever miss a day?  But her school is notoriously inflexible.  They would allow her to take medical leave and come back the next year but she's scared that's about it.  They tried virtual therapy this past semester and they decided it doesn't work so all therapy has to be in person.  

I could totally ask him but I think I am afraid that the real answer is, "No, I just want to use your daughter as a lab rat and prove that I can succeed" so I would rather think he is just really thinking of O.  

He did keep saying that she is putting an artificial constraint on her treatment...the constraint being her schedule.  I think that is totally unfair.  This kid has gone along with the plan for 6 years now.  He dragged his feet and then played with this and that therapy.  QOL has to be a consideration!  He should have moved sooner on Tofa...well on a lot of things but I am trying to be understanding.  

She is just frustrated.  Last. year he was begging her to get the colectomy and now this.  

Oh well. We should know soon enough.  Heck if it works he will be the best doc ever  

OH!  I did think of one little option I am going to float by him.  The surgery is 3-5 days inpatient.  They said they want her local for another 1-2 weeks for follow up.  Well she goes to school 1.5-2 hours away from a major children's hospital and a major adult teaching hospital.  Maybe just maybe he could call over there and get her in for surgery for her break and then I will go down and drive her back and forth for her follow ups while she is in school.  Ambitious I know.  Many adults don't return to work for 4-6 weeks but you know O.  She would do it.


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## xmdmom

I think it's actually a disability issue.  If you/she talks to the disability office, I bet the university would be more flexible.
I like your idea about surgery nearby if there's a good surgeon, team, hospital.

It would be amazing if Tofa works well!  He's not going to be the best doc ever though from what you have written.


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## Delta_hippo

I am so sad to read your update I wish the injections had helped and the constant changes of plan must be really messing with her mind.  
I know O is super hard core but try and discourage her putting any more pressure on herself in terms of assuming she’ll push through recovery faster than planned to get back to school if she has the op in spring.  My experience (albeit a bad emergency septic one) was slow and steady is the name of the game.  For context, I wasn’t able to get to a new job induction a month after the op which cost me at least £10,000 in lost earnings.  She is 20 years younger so may well bounce back faster, but there is something about listening to your body and going at the pace it needs not forcing a schedule.
It’s such a hard situation.  The scd snacks and feeding up sounds such a good idea.  
I am not sure why doc is looking at all this experimental stuff not surgery unless he is really sure he can’t reverse down the line but I thought that was still at a far from guaranteed but not absolutely ruled out stage?
If she is not in great shape for surgery in December how does that change by spring?  
I would just emphasise the being kind and not putting on extra pressure.  Even just the practicalities of getting used to the bag, trying a couple of different brands, getting her confidence up with the new regime.  I can’t imagine doing that with an inflexible college demanding get back and perform by a certain date.  Where is their compassion?
Maybe just focus on getting the most healthy calories in, what else can you do.  I really hope the stelara does something for her. Poor thing.


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## crohnsinct

Thanks @Delta_hippo Important feedback coming from one with experience.  

BTW - it is Tofa not Stelara that we are resting our hats on now.  

I do think they are thinking surgery will likely be permanent based on the results of the angiogram and MRI.  Which reminds me.....I wonder what on earth he thinks Tofa is going to do for that basically dead segment of sigmoid colon....


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## my little penguin

Ohh I would point blank ask on that one 
Also why delaying the surgery 
Response rates for crohns since regardless 
She has crohns and 
Crohns affects the FULL thickness of the intestine cvs UC which only affects top layer 
Huge difference in what the med may due if they only had success in UC 
Sooo sorry she has to deal with all of this insanity again


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## Maya142

I know a whole year sounds really long, but she could volunteer and get some valuable experience. But I understand that at 22, a year feels like a life time. My girls cried and cried when they had to miss school for a semester or year. But as they got better, they both said it was the best decision and the right decision. S only took a semester off. M took a year off and then some.

But she has given up a lot. She shouldn't have to give up school. This is a very last minute change and honestly, how likely is it to work? 21%? For a Crohn's patient? Isn't he also risking the fact that her TI disease could get worse? AND would he be taking her off two biologics and putting her on Tofa? Without EEN or steroids??

I am worried. Quite worried. I think surgery is truly the safer option. It may be, though, that he does not feel she is healthy enough for surgery. But then the priority should be to get her healthy enough for surgery ASAP. It should not be to try something new where the risk of tanking is much higher.

I second and third and fourth using the Office of Disabilities at her school. M would not have gotten through school without it. She also went to a very inflexible and challenging school, with a very inflexible and challenging major. She had some professors that were truly awful to her and blatantly discriminated. But the Office of Disabilities director fought for her. Advocated for her. Made them make accommodations for her. Some that we really thought were impossible - like actually switching a course in the major because it was only offered in the fall and she had to take the last fall semester before she graduated off.

She had open abdominal surgery in her first semester to place a J tube. She did this while taking Organic Chemistry. It was tough - she missed 3 weeks of classes AND three 5-6 hour labs. But with accommodations, she was able to make up the labs (even though she wasn't allowed to lift more than 10 lbs) and her organic chemistry class (as well as her other classes). The lab professors were incredibly kind. She had some very bad experiences at school - I won't lie. But she also found professors who really supported her and really fought for her, in addition to the disability director. 

For one class, they even got her a graduate student tutor and the department paid for it, to help her catch up. There are all sorts of resources. She just needs to talk to them, with a letter from her doctor, explaining the situation. It's now also VERY possible for schools to record lectures - they did online semesters! M's school did not accept online courses/credits before COVID. And they first said recording lectures would be too hard, they didn't have the technology etc. But then COVID happened and they HAD to do it for ALL kids. So that showed professors that it was very possible to record lectures.

So even if she has to have surgery during spring break and misses two weeks, they should be able to accommodate her. By law, they are required to accommodate her!

The thing that is more challenging is that this is grad school and she has clinic hours and clients etc. So I'm not quite sure how that would work.

I am also not sure going to a local hospital will work - she would have to be an established patient there, wouldn't she? I mean, if he could get her in some time soon and she could meet their team, it may work. But they may also have different criteria for surgery (higher weight for example) and they don't know her history the way her regular GI and surgeon do. I'd be worried about switching to a different hospital for such a major surgery without really getting to know a GI and colorectal surgeon there.


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## Maya142

> He did keep saying that she is putting an artificial constraint on her treatment...the constraint being her schedule. I think that is totally unfair. This kid has gone along with the plan for 6 years now. He dragged his feet and then played with this and that therapy. QOL has to be a consideration! He should have moved sooner on Tofa...well on a lot of things but I am trying to be understanding.


That is ridiculously unfair. She is trying to live her life. He is supposed to help her do that. She has tried MANY therapies that he came up with - some experimental. Ideally, she would be ok with deferring for a year. But she isn't. And in the past, he has pushed the surgery! So now she's ready to do it and he comes up with a last minute idea that might derail her whole grad school plan? And it's not as if it's a very effective treatment he's trying - 21%! That means roughly 80% of patients fail. 

I'm sorry but that is just cruel to put on a 22 year old who is not feeling well, trying to juggle grad school and her disease and all that it requires and who is also trying to come to terms with the idea of a permanent ostomy. I think she should be allowed to think about Tofa, do her own research and then tell him whether she's willing to try it. She is an adult now and it is her decision. It's not like there's an 80% chance it will work - there's an 80% chance it will fail! And then she could really tank and the surgery could become emergent and the recovery much harder. It just does not make sense. 

It's also an unfair amount of pressure to put on a young adult who is finishing up finals and her first semester of grad school. She should know this is 100% HER decision. Not his. Hers. If she's ready for the surgery and doesn't want to try a drug that worked for UC (which she doesn't have!!!), then she should be allowed to say no. Enough. 

Sending BIG hugs to you and O. And I would like to be the first of the committee to say I'm willing to fly to CA and tell her doc what I think of him...if he's lucky, that's ALL I'll do.


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## Pangolin

This is a relatively uninformed opinion in relation to O's particular case, but if you ask me I would think that EEN plus surgery to get out whatever parts are beyond salvaging would be the best path going forward for now. You're already attacking the immune system on multiple axes, so I'd be surprised if adding tofacitinib would help.


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## Jo-mom

I'm so sorry for what O and you are going through.  This is such a difficult situation.  I am sending hugs and wishes for good health in whatever route that is taken.


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## crohnsinct

Thanks guys.  

O does have Office of Disabilities involved in her education.  She has an accommodations plan and the letters the GI and Social Worker are writing on her behalf are going to the director of her program, the clinical director and the director of the office of disabilities so check, check and check. 

She can not do telehealth for her clinic sessions because she can't practice across state lines even during Covid (I know some specialities they lifted that restriction but apparently not for SLP students).  The university speech clinic did try Telehealth for local people and they say it just doesn't work. But oddly, O does have one Alzheimer client who they allow to do Telehealth so who knows. 

I "think" the university's idea of accommodating her will be "letting" her drop out this semester and still rejoin the program next year.  They typically do not let you rejoin unless it is a health issue.  Of course that dropping the semester in March does not come with any credit of tuition what so ever. 

O is home and she looks pretty good.  Thin.  We went to dinner as a family and calmly discussed the option of dropping the semester and rejoining the program next year...IF she had to.  We talked about her working as an SLPA during her time off and then maybe reapplying to other schools closer to home even...but switching schools delays her education 2.0 years because they only admit to speech for fall so she would be admitted for fall 2023 (she missed the deadlines for fall 2022) and then join the class spring of 2024. So that wasn't very attractive but she does now admit that a year detour isn't the end of the world. 

I would feel better proposing a detour for a drug that has a better success rate and safety profile though.  

I need to stop researching.  Things are getting more and more dismal.


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## Maya142

> I "think" the university's idea of accommodating her will be "letting" her drop out this semester and still rejoin the program next year. They typically do not let you rejoin unless it is a health issue. Of course that dropping the semester in March does not come with any credit of tuition what so ever.
> 
> O is home and she looks pretty good. Thin. We went to dinner as a family and calmly discussed the option of dropping the semester and rejoining the program next year...IF she had to. We talked about her working as an SLPA during her time off and then maybe reapplying to other schools closer to home even...but switching schools delays her education 2.0 years because they only admit to speech for fall so she would be admitted for fall 2023 (she missed the deadlines for fall 2022) and then join the class spring of 2024. So that wasn't very attractive but she does now admit that a year detour isn't the end of the world.


I'm SO incredibly proud of O for even considering taking time off. I know that is the last thing she wants to do. It shows maturity and strength and resilience.

But I have to say,  I agree with you. If it were for a drug with a better success rate, it would make more sense to me. Or if it was to let her gain weight to get her ready for surgery in March, then it would make sense to me too. But Tofacitinib just...well, it hasn't done very well in trials. 

Has her GI considered Rinvoq (Upadacitinib) at all? It is apparently doing very well in trials for Crohn's patients - M's GI says she has patients on it who failed absolutely everything else and are now doing great. It is also supposed to be safer than Tofacitinib. But it's not approved for UC or CD yet, so getting it would be a challenge. That said, we were able to get it for AS when it is only approved for RA. It did take some appealing, but it was possible.

Just so you know, M wants to send O a puppy for Christmas  !


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## crohnsinct

Yes, Rinvoq is not approved yet and we don’t have time to fight nor do we think they will approve it. However, if Tofa works then as soon as Rinvoq is approved we will switch over to that due to the better safety profile. If it doesn’t work then switch back to Tofa. Because the JAK inhibitors are small molecules there is no concern about immunogenicity.

That M made me laugh out loud and O thinks that idea is spectacular! Remind me to thank her.

Pre Tofa blood labs show low WBC of 3.1 and elevated LDL. But he says still ok to start. We are trying diet and exercise to manage the LDL and if that doesn’t work start a statin if Tofa works and increases LDL further. If Tofa doesn’t work or it doesn’t increase LDL Then just continue trying diet and exercise. 

Tofa is coming today and she starts tonight. Holding our breath.


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## crohnsinct

Well it seems the steroid injection did something.  O's calpro from last week was only 1170!  

She started Tofa yesterday. She had both doses yesterday so today is the second full day.  We are watching that toilet like hawks!   

I think we could pretty much rite off t he surgery on 12/30.  She had her infusion and Humira last week.  She is only 3 weeks post steroid injection.  Her tank is well topped off.  So in essence Tofa is the third drug on board right now and I suspect likely to make a difference.  Even if only a little difference atto weeks post infusion, I really don't think the GI is likely to vote to move forward with colectomy. I think we are looking at postponing the surgery until March when we really know what Tofa can or can't do all by itself.


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## Delta_hippo

I am so pleased to hear that the FCP has come in much lower albeit still off the charts.

Saw this link and thought of O - just because she is so complex that could there be a level of IBD on top of the IBD or complicating it - and she has a weird response to diets where they look like they’re starting to help them they don’t.  Anyway this is basically some research suggesting that if you do a microbiome test it can predict to an extent if a low fodmap diet will help.  I don’t recall if she’s done low fodmap I know she’s done ibdaid scd and vegan and een.... honestly my heart breaks for her and she is regularly on my prayer list.  So if we are in the game of trialling Hail Marys for a few months instead of op in a couple of weeks thought I would throw it into the mix.  








						Microbiota May Predict Success on Low FODMAP Diet
					

Distinct markers were associated with greater response to a low FODMAP diet in adults with irritable bowel syndrome.



					www.medscape.com


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## Delta_hippo

IBS on top of the IBD - stupid auto correct


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## crohnsinct

For a very long while her GI was convinced her issues were IBS.  He had her try numerous things.  He even had her on Rifaxim for SIBO.  Then that one infamous summer where he had her get a scope and saw the damage.  Since then with all her sky-high cal pro's he has dropped the IBS theory although he does say that she still has some level of IBS overlay but thatcher issues now are clearly her IBD.  We have discussed low Fodmap on many occasions but he has actually had us hold on it until her IBD is well controlled and in remission that way we will really know if it is working for any IBS she might have.


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## Maya142

Oh boy, I would not go down the IBS rabbit hole right now. She clearly has very high levels of inflammation...that fact that you're saying her FCP is "only" 1170 tells me that! I think once her disease is controlled, hopefully with Tofacitinib or possibly with surgery + Tofacitinib, then you can explore that avenue. But for now, I'd focus on getting the inflammation under control and gaining weight so that she is ready for surgery - whether it is a colectomy or a resection.
I'm actually quite surprised her LDL is high - she's a normal weight (still very thin, in fact) and isn't her diet pretty healthy because she's been on the SCD? Is it only a little high or significantly high?
I'm REALLY hoping the Tofacitinib helps - fingers and toes are crossed. I guess we won't know till her Humira and Entyvio start to wear off though.


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## crohnsinct

Pretty sure surgery on the 30th is not going to happen.

O has been sick with some cold/virus thing.  I took her to urgent care on Wednesday.  They tested her for Covid and it was negative. Gave her cough med, decongestant and ear drops. Cough is getting worse. She has been taking Tofa for 3.5 days.  Tonight she ran fever of 102.7 so she has to hold Tofa until she is fever free for 24 hours.

Pretty sure this interruption to her dosing is going to mean they ask her to give it more time with consistent dosing.


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## Pangolin

I hope things go ok. When was her last Humira? Sometimes there's a rebound effect with these drugs, when the immune system is finally able to activate and make a fever again.


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## xmdmom

I would retest for Covid. Was the test pcr or rapid antigen? The antigen tests have a lot of false negatives. The pcr can also be negative early in the illness. 

I think cugh and fever and immunosuppression warrant an X-ray.

Hope she feels better very soon and this ends up being nothing serious.


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## my little penguin

Second that -get swabs for
Flu 
Covid 
Ebv 
Again 
Colds don’t cause fever 
Hugs to you and her


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## xmdmom

If it’s Delta Covid or Flu, there is treatment out there: Regeneron antibodies or antivirals ( tamiflu and the like). These both work best when given early on after symptoms appear.


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## crohnsinct

Thanks guys. Yeah I am taking her to another urgent care today. The last one didn’t even listen to her lungs.

The Covid test was done 5 days into her illness maybe more because she came off the plane coughing. It was PCR at urgent care. 

Temp down to 101.9. Not great but not awful.


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## crohnsinct

Ugh. Her weight is down to 114.  We are going to hook her up to a really slow feed all day.


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## Maya142

Oh wow - yes, I would do slow feeds and since she’s home, I would even consider asking about a GJ tube. That should help the nausea. Her motility is likely slower than normal since she has been malnourished for so long.
When M was at her lowest weight, we did feeds for 20-22 hours a day. Not super fun, but she did gain weight steadily…at least 10 -15 lbs in two months if I’m remembering correctly. BUT her crohns was well controlled so she was absorbing formula probably better than O is.
Really sorry to hear she is sick. Poor kiddo. I would definitely get her re-tested because of the new variant.


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## xmdmom

Not listening to her lungs is negligence in my book. Was it a doctor or a PA/NP?  

Earlier this year,  a PA told my son he had a mosquito bite on his wrist when he went to the office with a developing cellulitis even though he explained he was on Remicade. My son called me from the office and handed the phone to the PA so we could talk. After speaking with me, she reluctantly wrote a script for antibiotics. By the time I saw him (right after the visit), there were red streaks going up his arm. I called to speak to the PA who said she had seen the red streaks and insisted he should wait for the oral antibiotics to work. We went straight to the ER. Well long story short, it was a fast moving bacterial infection that required a few days of IV antibiotics. * PAs and NPs are often unaware of the severity, rapidity and diversity of infections in immunocompromised people and the need to evaluate carefully and treat promptly.  I hope she sees a doctor and in any case, make sure the medical provider gets that she is immunosuppressed.  (BTW, when was her last Humira shot?)*

If she had respiratory symptoms for several days and then developed a fever of 102,  bacterial infection (pneumonia) on top of a virus is a possibility. Ask if she should have a chest Xray.

A map of how much flu is in each state: https://www.cdc.gov/flu/weekly/usmap.htm

PCR test should be positive after 5 days of symptoms but there still are some false negatives in any test;  unlikely though.


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## crohnsinct

I know right @xmdmom?!  I thought that was a pretty standard thing.  Flu swab, covid swab, strep test, maybe even mono.  Look in the ears, check the lungs.  

She saw an MD.  

I wasn't allowed to go in the building with her due to Covid.  

Interesting map.  The rate of flu minimal is low BUT where she came from is low so who knows.  

The only thing that has my ears perked is that she is getting worse and the fever came on 7days after first symptoms.  And she started Tofa on Wednesday.  

She almost fainted when she got up so I have her hooked up to a really slow feed 80ml/hour and 500 ml's.  She needs to shower before leaving the house because we did a psoriasis treatment last night.  I was hoping the GI would weigh in by now but nope.  So I might disconnect her, get her showered and head over to another urgent care. GI is on vacation so waiting till tomorrow won't do me any good except maybe she will turn around by then.


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## xmdmom

I'd also let them know her WBC was low last time they checked.  With "almost faint"ing , does she need ER?

Sending hugs.


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## crohnsinct

I think the almost fainting is her lack of nutrition.  She barely ate anything yesterday.  Her BP is 90/60's.  Her pulse 90's.  So not the worst it has been but I am afraid we have a very skewed sense of bad.  

The GI checked in this a.m. and asked about other symptoms and said, "nothing respiratory?" Which I thought was weird because she told him about the cough Wednesday before starting Tofa.  She answered him and we were waiting to hear from him in case he wanted her to go to his E.R. where he could order labs, X-ray and fluids but nothing back yet.  

She is sleeping with her feed going.  She is not coughing in her sleep right now and that is amazing.


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## Pangolin

I don't know exactly if she's coming off Entyvio and Humira right now, but if she is this could be the immune system waking up and either fighting off all the things it would have been fighting off for some time or just overshooting as it wakes up (see Immune Reconstitution Inflammatory Syndrome). Of course, all of that could also be unrelated to what's actually an ordinary infection, which she may be extra vulnerable to right now.

When my son came off high doses of Remicade, he had a fever for a week, esophageal pain, and he could barely eat/drink for a while. A very distinctively similar thing happened when coming off Entyvio, except without the fever. Things did get better, mostly on their own (although he did get some amoxicillin the Remicade time, but it may not have done much), but it took a couple of weeks.

Be careful, and I hope things get better soon.


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## Maya142

Does her BP usually run that low? I'm asking because M's does, so if we saw that number we wouldn't panic. BUT if O's is normally 120/80 and she has cough and fever and is unable to eat, I'd definitely report all of that to the GI. The fever is what's worrying me - with a regular cold I wouldn't expect a fever or at least only a low grade fever, not going up to 102 F. 

When was her last Humira shot? Because we found that within two weeks of combining a JAK inhibitor with an anti-TNF, M got an infection (in her case, it was a bad UTI). I wonder if the addition of Xeljanz when she already had Humira on board could have led to pneumonia or something. When we told one of the researchers M sees about how many infections she got when she was on an anti-TNF + JAK inhibitor, they said now there are studies showing that that REALLY increases the risk of infection. He said she was "proof of concept" after hearing about all those infections.

With O being malnourished and on a double dose of Xeljanz (well, double the arthritis dose) and exposed to so much infection at school/traveling, it could have happened faster.

Hate to say this, but if she gets any worse, I'd call her GI or even head to the ER...


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## my little penguin

Given the upper respiratory symptoms
More than likely a secondary infection causing the fever
Never once had any symptoms Such as fever when switching Ds from remicade to humira to Stelara


When he switched from kineret to ilaris (autoinflammatory condition) he did flare since there was a gap due to insurance
He did get a fever during the gap but
Big but that’s part of auto inflammatory syndrome (sweets syndrome in his case )

really hope the Gi responds quickly
If not head to urgent care for swabs /chest xray
Labs


----------



## crohnsinct

Temp 103.4 and she just vomitted everything we managed to drip into her (300ml's)...off to E.R.


----------



## crohnsinct

Ok we are at urgent care attached to ER. She is more comfortable with that. She just went in. I can’t go in with her. Darned Covid.

So to answer some questions her last Humira was 12/8. So still a fair amount left in her when she started the xeljanz on 12/15. Her Entyvio infusion was 12/9.

She does get fevers when terribly inflamed with Crohn’s. Her GI says it is a cytokines storm.

Just heard from GI. He said take her in to get chest x ray and to be listened to. Maybe other swabs as they see fit.

He also warned that if significant respiratory issues persist the surgery schedule will be affected. So he got his way.  Not the way he wanted but still what he wanted.


----------



## crohnsinct

Chest x ray clear. She fainted twice in x ray room. BP low and they won’t let her go. Giving her IV fluids now. She should perk up nicely.

Md said likely viral and just have to wait it out. Or knowing her Crohn’s could be inflammatory. No way to tell except wait and watch I guess. We’ll see what GI says.

Either way surgery likely off for December. I wish she would stay home and work on her health. I know it means a year delay but this is getting ridiculous.

The only ways I see her going backare:

1 wait for virus to clear then restart Tofa and cross our fingers. Work on nutrition. 
2 go back to Humira and Entyvio because at least that was holding her. Maybe another steroid shot. Work on nutrition. 
3 go back on steroids and wash out prior to surgery in March. Work on nutrition.

The tofa and steroid options concern me with omicron circling.


----------



## Pangolin

I'd be thinking about TPN and no food to keep up her nutrition and reduce inflammatory stimulation for now. I'd also be thinking about antibiotics just in case there's a bacterial component.

Check out the IRIS following infliximab and natalizumab withdrawal sections here: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3507517/


----------



## crohnsinct

She can’t get a picc line outpatient.  Plus he would not let her go back to school with one due to infection risk at college.  

He did give the ok to start the antibiotics. Waiting to see if she should restart Tofacitinib once fever free for 12 hours (he reduced wait time).

O just stopped her Humira and Entyvio but is still within the dosing period so not technically withdrawn yet.  Her chest x ray is clear so no tuberculosis.

I honestly think she has run of the mill, run down from finals, college crud.
I am glad we ruled out scary infection given the pandemic and tofa start up.  

The fevers could also very well be inflammatory fevers due to her Crohn’s inflammation and the cytokine storm. She has definitely had this before.

Hard to Susa out which it is, viral, bacterial or inflammation. So we will methodically work on each and wait and watch.

GI and surgeon are both on vacation but GI started an email thread for the GI team to post updates and thoughts to.


----------



## xmdmom

Is she in the hospital or at home?

Who prescribed the antibiotics for what?

Hope the IV fluids helped and that whatever is causing this will settle down soon.


----------



## crohnsinct

She is home. The md at the urgent care prescribed them and to answer for what….because she is stumped and wants to treat “whatever” it is.  

GI said start them in the morning.

She got a bag of fluids and felt a lot better.

At 3am woke to go to bathroom and was cool as a cucumber and ready to party.

This is so weird. Just like that time in the fall when she was in the ER. High Fever, vomitted. Next day fine.

So now I am leaning towards blaming her Crohn’s and the cytokine storm from inflammation and of course don’t want her to take the antibiotics.


----------



## my little penguin

If no fever I would check in with Gi first 
Even pcp in a pinch 
Glad the fever broke


----------



## xmdmom

I don't like the idea of taking antibiotics for an unknown source of infection.   [Yes this is sometimes done after drawing blood cultures and checking for other sources of infection (sputum, urine when indicated) in people who are neutropenic (neutrophils <500) source.]  I could not find an algorithm for acute fever in non-neutropenic immunosuppressed person.  I really would like to see some recommendations for the evaluation and treatment of fever in patients with IBD on the various meds that are immunosuppressants. That would be very useful.

Did they check a CBC and blood culture? 

I'm not very familiar with cytokine storm and not at familiar with c.storm in Crohn's.  What causes it in Crohn's and what is its usual course and treatment?


----------



## crohnsinct

Me either @xmdmom !  

No reason given other than she wants to try to help O get better and she has been sick for awhile. No tests done. Just chest x ray. I am annoyed.

As for the Crohn’s inflammatory fevers she had them that summer she was in the hospital. They were awful. They had her in broad spectrum antibiotics via IV and searched and searched for infection but found nothing. So in the end they chalked it up to Crohn’s inflammation fevers. I never really asked about the mechanism but will definitely ask when the GI gets back.

Just what we needed two weeks before surgery!  Grr!


----------



## Maya142

> O just stopped her Humira and Entyvio but is still within the dosing period so not technically withdrawn yet. Her chest x ray is clear so no tuberculosis.
> 
> I honestly think she has run of the mill, run down from finals, college crud.
> I am glad we ruled out scary infection given the pandemic and tofa start up.


Well, from our experience, I think the infection could be from her immune system being too immunosuppressed with Humira in her system and then starting Xeljanz on top of that. And then add in being run down with finals, malnourished and extremely inflamed.

In terms of a cytokine storm, I read a little about it after M was hospitalized in the fall. She felt ok, besides severe joint pain, but her routine blood work came back with a high WBC and a CRP of 130. Her rheumatologist said they do not see CRPs that high in psoriatic arthritis or AS and she and her PCP and the GI on call (her GI was away) were all concerned about an infection, so she was admitted and they did a billion blood tests.
But over the course of 6 days (she was only admitted for 2), her CRP fell from 130 to 60 to 19 to 11, when 0-3 was the normal range (11 is high but hers is literally always high due to uncontrolled arthritis). 

She did NOT have fever like O, but the doctors at the hospital thought that she had had a mild virus and that caused an overreaction of her immune system considering she was already quite inflamed (arthritis has been flaring for months) and has an over-active immune system. They did not start abx because all the blood work and cultures they took did not grow anything and her WBC went down to normal.

 Now in her case, it was not severe enough that it would be considered a cytokine storm, but that's essentially what a cytokine storm is, a severe immune reaction, and in O's case, it could be just that she's so inflamed that her inflammation is through the roof and causing fevers and vomiting but given that she has a cough, I'd guess she has a virus too.


----------



## Maya142

> Either way surgery likely off for December. I wish she would stay home and work on her health. I know it means a year delay but this is getting ridiculous.
> 
> The only ways I see her going backare:
> 
> 1 wait for virus to clear then restart Tofa and cross our fingers. Work on nutrition.
> 2 go back to Humira and Entyvio because at least that was holding her. Maybe another steroid shot. Work on nutrition.
> 3 go back on steroids and wash out prior to surgery in March. Work on nutrition.
> 
> The tofa and steroid options concern me with omicron circling.


I wanted to add - I REALLY wish she would consider taking time off. If not, then is she masking at school? I know her school has not had strict masking or testing requirements - at M's school, ALL students are masked, vaccinated and tested once a week (though now with the new variant, they might be going back to twice a week). And now they are mandating boosters as well as the first vaccines.

We were told that JAK inhibitors like Tofacitinib essentially disable the body's "first line of the defense" to the virus. So if M (or O) were to get COVID, it could be very, VERY bad. I know O has had COVID before but this variant is extremely transmissible and her body is not in the best shape because of the inflammatory load. And she is malnourished and her weight is going down very quickly.

I know she really does not want to miss a year, but at this point, given how sick she is, I think it makes the most sense. She could very easily end up having emergent surgery at a hospital by school and lose the option of a reconnect in the future.

If that's not something she will agree too, then perhaps EEN till Tofacitinib kicks in (I know, she'll hate me for this!!). Or another steroid shot. I would stay away from systemic steroids (i.e. Pred) because of the additional risks of infection.


----------



## xmdmom

I don't know what risk Tofa poses in terms of getting sick with Covid-19 but it apparently can be helpful in hospitalized people sick with Covid-19 pneumonia according to this New England Journal of Medicine study which says:  "In this randomized, double-blind, placebo-controlled trial involving hospitalized patients with Covid-19 pneumonia, tofacitinib was superior to placebo in reducing the incidence of death or respiratory failure through day 28."


----------



## crohnsinct

Well O’s fever broke last night. Woke up today and perfectly normal. She was going to start Tofa this am.  
She got a call from our county health department. She immediately freaked thinking she actually does have Covid. But guy said they got a call from a health provider in the state she goes to school in. Apparently she tested as having severe chicken pox.

Results never posted to her portals and GI said start even though results not back.

GI has spotty reception where he is but said hold tofa cuz tofa and chicken pox don’t mix well.


----------



## crohnsinct

Meanwhile her Crohn’s is getting worse and worse and she is down to 113.


----------



## my little penguin

Big hugs 
Is she starting the anti viral for chicken pox ???
If I remember there is one 
Ds was exposed to shingles while on 6-mp so Gi at the time mentioned the anti viral would be given if he ever tested positive ..

is she doing 24 hour feeds with the pump in a backpack ??
That can help with the weight some  while your Gi figures things out


----------



## my little penguin

> If you or your child are at high risk of complications, your doctor may suggest an antiviral drug such as acyclovir (Zovirax, Sitavig). This medication might lessen the severity of chickenpox when given within 24 hours after the rash first appears. Other antiviral drugs, such as valacyclovir (Valtrex) and famciclovir, also may lessen the severity of the disease, but might not be approved or appropriate for everyone.
> 
> In some instances, your doctor may recommend getting the chickenpox vaccine within three to five days after you've been exposed to the virus. This can prevent the disease or lessen its severity


From





						Chickenpox - Diagnosis and treatment - Mayo Clinic
					






					www.mayoclinic.org


----------



## crohnsinct

I have no clue what he is doing…on vacation…spotty reception and all.  

The weird thing is she has been sick for so long but no rash yet. Plus she was vaccinated although I know that isn’t 100%.


----------



## xmdmom

So how many days ago was the positive varicella test? Was it a nasal swab?

How high was her fever yesterday? How is she otherwise feeling?

If her doctor is not available, is there a covering doctor who answers calls for her doctor at night?  She needs a physician to figure out
whether she needs antiviral therapy (IV or oral) and/or more evaluation.  I would think her GI doctor should call an Infectious Disease specialist to find out what to do.  If there's a choice, I'd choose antiviral therapy.

Varicella can occur without rash (You know that!)--- and usually poses a diagnostic dilemma.

Sending lots of hugs!


----------



## xmdmom

"Varicella zoster immune globulin (human) (VARIZIG) is recommended for post-exposure prophylaxis to prevent or attenuate varicella infection in high-risk individuals." https://link.springer.com/article/10.1186/s12879-020-05656-6


----------



## xmdmom

https://www.cdc.gov/chickenpox/hcp/index.html has info on immunocompromised  and varicella.

My mistake: It seems VARIZIG is only for post exposure prophylaxis not for someone who already has it.


----------



## Maya142

She should REALLY do 24 hour feeds - or 20 hour feeds (to give her some time off the backpack - that helped M feel a little freer) daily to get her weight up. I don't think there is any way to do the surgery till she gets her weight up and I'm quite worried she will lose more weight if she tries to go back to school. Though I guess if she has chicken pox she'd have to quarantine anyway?

Is there no covering GI who can give you advice about the chicken pox? Or refer you to Infectious Diseases? I'd call the on-call GI or if absolutely necessary, take her to the ER.


----------



## Maya142

How is O doing? Any news from her GI?


----------



## Pilgrim

Thinking of O. Hopefully, she gets some good news.


----------



## Jo-mom

Keep thinking about O.  Hoping for a decent update, one with some good news.  I think all of us parents are on the same page here - after years of following this thread, there's a connection of some sort.  Feel like some sort of big crohn's family.  Hugs.


----------



## crohnsinct

Hi guys!  Sorry to disappear like that.  I got really sick with some unknown virus (probably caught it from O) and working with the homeless during Covid, winter and rainy season while sick left me crawling into my bed at the end of every day.  Also this situation with O is VERY frustrating and it has been hard for me to actually sit down and recap nicely.  

For starters, the chicken pox result that the GI had was the IGG test that just tells you if you have had chicken pox, been vaccinated or have an active infection.  That was positive.  But there is another test the IgM test that tells whether there is active infection or not.  No one looked for those results and GI said based on the Igg good to restart Tofa and she did.  That was 12/21.  Not nearly enough time prior to surgery to accurately assess whether or not the drug was working but we stuck with it.  

Her weight stayed stable at 114 isn so that was decent news.  Bleeding decreased.  BM's down to 4 or so a day.  Tofa cleared her body psoriasis so that was very exciting.  

Day before surgery the GI pressured O to cancel.  Not enough time on Tofa and early results were encouraging blah blah blah.  She was VERY conflicted but in the end cancelled.  

Next day she went 12 times and since has been up and down but even the fact that she has some  4 a day days is good.  Bleeding is picking up.  Psoriasis is back. She is eating better and had gained to 115.5 but not sure if she maintained that. 

Warning getting graphic here...the thing with her 4 day days is that her stool is flat ribbons.  So even if she is down to 4 there is still obviously a lot of inflammation.  Last summer when O was admitted I told the inpatient GI that I was surprised given she was going on 4 times a day and she said, "that could be because the inflammation is stopping things up and not because she is healed".  So I wonder.  

GI says plan if Tofa doesn't really kick in is to go on steroids to get her through her semester.  Plan after steroids?  Stelara (yes the drug he avoided because he highly doubted it would rescue her colon), if Stelara doesn't work then maybe Stelara and Tofa.  Clearly this guy will not give up.  IDK why.  He was begging her to get the colectomy last summer.  

We asked him to help us get in to another doc for a second opinion.  He presented her case  (not what we wanted and we didn't see what he said) and other doc wrote his "opinion" via email.  He agrees with Tofa use and has had it work in some similar patients.  He says give it three months and if still not working surgery is indicated.  

O is very upset.  She feels like this is just going to be another year of limping along until next December when she can have surgery.  

We are pursuing a second opinion at a hospital about 2 hours from school.  Well known adult hospital.  She just hasn't gone there previously because she was scared adult docs would say surgery but since she is there already and has accepted it se is willing to try another doc

O goes back to school Sunday...we hope...if flight isn't cancelled.   

Thanks for checking in on us.  I am going to go get caught up now.


----------



## Delta_hippo

Thanks for the update had been wondering about you and your little girl.  I am relieved at the idea of the second opinion at adult hospital as toga before stelara did seem a little odd to me and I also feel they have got a lot caught up in the whole school-comes-first, O is super resilient and can cope with anything narrative (cancelling major surgery the day before?!) and I think she needs an opinion from an expert who will just look at the health side and then say “this is what I would do if I was in your shoes”.
So staying hopeful for tofa.
If she goes back on steroids please ask about calcium and anything it needs to ensure supports bone density she has just been through too much already to have those problems turn around and bite her down the line.
Hope you are feeling better and on the mend.
There is new research ongoing all the time- maybe keeping going and especially if tofa helps will turn out to have been the best thing.
I’m rambling because I feel so mixed with your update - sorry she keeps getting put through difficult situations and worried and hopeful and unsure what’s best.
Lots of love to you all.


----------



## Maya142

I think the second opinion is an excellent idea. I don't know why her GI has gone from pro-colectomy to anti-colectomy - did you ask him why?
Studies have shown that combining JAK inhibitors with other biologics causes infections...although IL-23 inhibitors are not very immunosuppressive, so that would probably be the safest drug to combine Tofacitinib with. But it might be hard to get both approved since neither is an infusion.

I'm worried @Delta_hippo is right and also hope her GI is not pushing this because she has wanted to put school first in the past and has been incredibly, incredibly resilient. I am sure she is exhausted by now.

On steroids...is that not a worry with the new COVID variant? We were told that JAK inhibitors put you at high risk for COVID because of the mechanism of action. Therefore if you do get it, it can be very bad...even though Omicron is a mild variant for the most part. And of course, they have to be stopped for a week after the COVID booster (in case she has not gotten her booster). Tofacitinib is even more immunosuppressive than Upadacitinib which M is on, so I do worry about that. I hope O is wearing a mask at school, even if her school does not require it. 

Hope she will continue her tube feeds to gain some weight though I'm glad she has gained a little. Poor kiddo. She has been through SO much. Sending big hugs.


----------



## Maya142

How is O? Any news?


----------



## crohnsinct

Hey y'all….here is a not so informative update 

O went back to school.  She appears to be doing pretty o.k..  Frequency stuck at 4-6, some bleeding and weight went up to 115/116 but is stuck there.  

She had been tolerating food much better and some formula feeds but recently lost her appetite and is getting full quickly.  Could just be run of the mill type stuff or maybe her IBD.   

Her labs two weeks after starting Tofa were much improved. Her calpro was 957! We were cautiously optimistic because…well….this is O. And 957 is high. And there is variability in that test. And there could still be some synergistic effect of the leftover Humira and Entyvio and steroid injection. 

She recently told me she had another one of those days with the chills and sweating and fever.  The cytokine storm type thing.  She just stuck it out at home and it passed.  Maybe it was kid yuck, maybe her IBD….who knows.  

Her next set of labs is coming up within the next week so I will have a lot more info then. 

She has a second opinion booked for first week in March.  However, if calpro drops significantly we might cancel and wait and see. 

Thanks for checking up on us!


----------



## Pangolin

Is O on only tofacitinib now, plus some formula? When were the last doses of Humira and Entyvio?


----------



## crohnsinct

Yep. Just Tofa and formula.  Last dose of Entyvio and Humira was December 8th.

Blood labs posted. H&H are lowest they’ve been in a long while. CRP is elevated as are platelets.

Waiting to see what calpro is.


----------



## Pangolin

Sounds concerning, good luck.


----------



## Maya142

Is the second opinion a televisit or an in-person visit? I would honestly keep it, even if she’s doing well. It might be useful to have another set of eyes on her case. We’ve seen multiple rheumatologists/researchers for my younger daughter’s very refractory arthritis and it has helped a lot. 
In terms of losing her appetite - does she get full fast? Being malnourished slows your motility. Perhaps she could increase the number of days she’s doing tube feeds?


----------



## crohnsinct

Yes. She has a second opinion set up for her spring break.  Two actually. We are trying to choose between 2 docs.


----------



## asadmom

Pangolin said:


> I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse. My son had red eyes and eye pain from Remicade. We went to an ophthalmologist, and nothing but dry eyes was diagnosed. Everything went back to normal after Remicade. Still, I wonder if it would have progressed to scleritis if he'd stayed on the Remicade.
> 
> Don't let them tell you "this is just the disease getting worse" when it's really a drug side effect.


This is exactly what my son has! He has red eyes, constantly, and also his eyes get so dry by the afternoon. His eye doc said his eyes are fine, just allergy so give him allergy drops. I kept asking them if it's a side effect of Humira and the response was "never heard of it". 

I am so glad to have come across your post. How did your son come off of Remicade?


----------



## my little penguin

@asadmom 
Crohns can cause inflammation of the eyes 
Especially is gut inflammation is not under control which sounds to be the case for your son 
Every child with crohns has to see an ophthalmologist - eye MD(not optometrist )
They will screen for iritis ,uvetis and epi- scleritis 
Yes allergies can cause eyes to be red 
But an ophthalmologist needs to rule out the more serious things 
You need an eye specialist 

there is also sicca syndrome (dry nose,mouth and eyes )
Ds and dh (no ibd) have sicca syndrome 
They both have severe allergies -so eye drops for allergies 
He and dh also have  limbal vernal keratoconjuntivitis - another inflammation condition which can need steriod drops 

In addition if Ds has epi scleritis when his crohns is not under control - that requires steriod drops 
when flaring 

my point is Red Dry eyes even in the same person can be from a variety of reason
And most of the time drugs are not to blame 

please have your child see an ophthalmologist MD


----------



## my little penguin

Did want to add once Ds gut /joint inflammation were under control - all extra eye inflammation requiring steriod drops has been gone 
Only needs allergy eye drops and dry eye drops


----------



## crohnsinct

Calpro is back. 7840. So my guess is Tofa isn’t working. I am not even going to play our favorite game of outguess the GI.  The way I see it we have two choices to make:

1 - EEN (which last round didn’t even work) or steroids
2- add mtx, add or switch to Stelara
3 - try to hold out for new drug while on EEN or steroids. But really what’s coming?  Rinvoq but not likely to work if Toda didn’t work. 
4 - cancel spring break plans and have surgery.


----------



## my little penguin

My vote is a strong #4 
Surgery as soon as possible so it’s not emergent


----------



## asadmom

crohnsinct said:


> Calpro is back. 7840. So my guess is Tofa isn’t working. I am not even going to play our favorite game of outguess the GI.  The way I see it we have two choices to make:
> 
> 1 - EEN (which last round didn’t even work) or steroids
> 2- add mtx, add or switch to Stelara
> 3 - try to hold out for new drug while on EEN or steroids. But really what’s coming?  Rinvoq but not likely to work if Toda didn’t work.
> 4 - cancel spring break plans and have surgery.


I was going through your journey this morning and you, your daughter and your family have been so incredibly brave and resilient. This type of burden is not suitable for a human yet you continue to march on, share and help others learn. I feel ashamed for not being able to help but I will continue to pray for you and your daughter.


----------



## Pilgrim

#4 a year ago. 

If it's out guess the GI? He'll probably try #2


----------



## asadmom

Someone mentioned this before: https://crohnsforum.com/threads/my-stem-cell-transplant-blog.16284/

Is this worth looking into?


----------



## my little penguin

@asadmom 
Stem cell transplant is beyond risky /unproven 
Only works in certain types of disease (not proven at all for crohns -1 case only noted here not a study )
Wipes your immune system out so minor colds can be deadly .
Not an option


----------



## crohnsinct

They looked at stem cell transplant for her and the oncology department at Stanford said it was too risky when colectomy is a perfectly acceptable and safer option.  But thanks for trying.


----------



## Maya142

Wow I didn’t even know it could be that high!!
As for what’s coming out, Risankizumab should be approved in the next year. It’s brand name is Skyrizi and it is approved for psoriatic arthritis and psoriasis so far. It’s an IL-23 inhibitor and beat Stelara in terms of arthritis and psoriasis. But the IBD dose is a 600 mg induction IV and then 360 mg every 8 weeks. But the current approved dose for psoriasis is 150 mg…so it’s not like you can really use it off-label at the right dose. 

It might be a great option for O but I don’t think she can really wait for it. According to my daughter’s doctor, the FDA is very behind in terms of approving drugs, so it could easily be more than a year. BUT it may be a great option for after surgery when it’s approved - it’s supposed to be magic for psoriasis too.

I do think her only option left is surgery…Stelara could take 6 months to work and if Entyvio AND Humira don’t work then I’m worried Stelara won’t by itself and she’ll end up septic.

I do think a second opinion is a good idea - are those before spring break or after?

I know she really doesn’t want to miss school but I think doing it during spring break is the best option. Plus, this is what her accommodations are for. M missed 3 weeks of college when she had her J tube placed - an open abdominal surgery and even went back to organic chemistry lab and her professor worked with her to make up all the labs she missed. 

O’s surgery is more major but with support, I am SURE she can do it. I wish she didn’t have to though. Poor kiddo.


----------



## Pangolin

my little penguin said:


> @asadmom
> Crohns can cause inflammation of the eyes
> Especially is gut inflammation is not under control which sounds to be the case for your son
> Every child with crohns has to see an ophthalmologist - eye MD(not optometrist )
> They will screen for iritis ,uvetis and epi- scleritis
> Yes allergies can cause eyes to be red
> But an ophthalmologist needs to rule out the more serious things
> You need an eye specialist
> 
> there is also sicca syndrome (dry nose,mouth and eyes )
> Ds and dh (no ibd) have sicca syndrome
> They both have severe allergies -so eye drops for allergies
> He and dh also have  limbal vernal keratoconjuntivitis - another inflammation condition which can need steriod drops
> 
> In addition if Ds has epi scleritis when his crohns is not under control - that requires steriod drops
> when flaring
> 
> my point is Red Dry eyes even in the same person can be from a variety of reason
> And most of the time drugs are not to blame
> 
> please have your child see an ophthalmologist MD


I know you're just speaking in general, but in my son's case it was 100% Remicade-induced, without any doubt. Fortunately it did go away shortly after stopping Remicade.


----------



## crohnsinct

Thanks @Maya142 Her appointment is set for the first day of her spring break 3/7.  It isn't actually a second opinion as much as we are meeting with this GI to transfer her care.  We chose them because they have a top notch colorectal surgery team.  Fingers crossed.  

As for accommodations, we checked with the school.  They will "allow" her to withdraw from the program for a year and then rejoin next spring.  That IS the accommodation.  Because usually if you withdraw you can't come back. A lot of the restrictions are because she is seeing clients in clinic now and there are strict requirements with regard to licensing about how many hours they have to practice with supervision etc.  She has her set 4 clients a week and an eval slot but if she misses three weeks she will be short about 15 clinic hours and will have no way to make that up.  So while the program is very sympathetic to her predicament, they have only granted her permission to withdraw (losing her tuition for the semester) and rejoin next January.  

She will be devastated as she also just found an internship close to home that was supposed to start next January.  This internship is the last thing they do before they graduate.  She didn't like the placements that the school had and went out and found this amazing place by us, contacted them, interviewed and they agreed to take her on as an intern.  They even said if it works out, they would keep her on for her fellowship year!  But if she has to drop out, she also loses that internship. 

This all stinks because she was ready for the surgery and he pulled the rug out from under her.  Now, I am not even sure her heads in that space anymore and she would have to do a lot of work to get back to that place.  Especially given he stakes are a lot higher now.  

She has been talking to other ostomates and they tell her she is really dreaming if she thinks she will have the surgery and return to school and clinic in two weeks.  They are telling her it took them almost a full 6 weeks to get to feeling capable of handling full days at work etc.  But if I had to bet anyone would do it, my bets would be on O.  I would probably go back to school with her and help her for couple of weeks, until she is eating regularly anyway.  

I can't wait to hear what her current GI has to say about the situation.  It honestly could be anything from stress to surgery.


----------



## crohnsinct

@Pilgrim your response literally made me LOL!


----------



## Delta_hippo

Yowzers.  That is high and has quadrupled in a short time.  Poor O.

In her shoes I think I would be seriously revisiting the idea of surgery. I am a stelara fan but I am wondering if the malnutrition/ damaged bit of bowel is going to be too much for any drug and perhaps that all needs dealing with to then give stelara a chance of working?
My other thoughts are... drop out for a year versus have a glorious successful year is one choice.  But what if it’s postpone a year versus limp along in and out of hospital feeling crap with the risk of have to pull out later in the year anyway?  Which I know was part of her thinking at Xmas.
Secondly - two weeks recovery from an ostomy  - I would not want that pressure or expectation and just the thought makes me feel stressed all the way over here in England!
Finally and I know we are in long shot territory but I might be thinking if tofa not working, which means surgery probably inevitable? I would go sooner rather than later to limit further bowel damage to minimise a no reversal possible decision later.  Unless new doc says already definitely impossible.  
I agree stem cell really high risk when surgery and stelara still not tried.
I’m glad you’ve got a new doc.  I would be asking very much along the lines of what would you do if you were me, my age and history with these symptoms and test results and go in with an open mind but prepared for a imminent surgery recommendation.
What a frigging horrible disease this is to put your little girl through so much.  Thinking of you all xx


----------



## xmdmom

Sorry to hear about the high Calpro and very glad to hear about her apt with the new GI.

That there's no way to make up 15 hours of clinic time really frustrates me.  There should be a way! They really do not seem to be very accommodating.   Is there any possibility of doing this internship at another time in the future at this amazing place? The amazing place wanted/wants her (because she is amazing!!); she might be able to defer her internship given her medical issue. I think she should ask.


----------



## Maya142

> As for accommodations, we checked with the school. They will "allow" her to withdraw from the program for a year and then rejoin next spring. That IS the accommodation. Because usually if you withdraw you can't come back. A lot of the restrictions are because she is seeing clients in clinic now and there are strict requirements with regard to licensing about how many hours they have to practice with supervision etc. She has her set 4 clients a week and an eval slot but if she misses three weeks she will be short about 15 clinic hours and will have no way to make that up. So while the program is very sympathetic to her predicament, they have only granted her permission to withdraw (losing her tuition for the semester) and rejoin next January.
> 
> She will be devastated as she also just found an internship close to home that was supposed to start next January. This internship is the last thing they do before they graduate. She didn't like the placements that the school had and went out and found this amazing place by us, contacted them, interviewed and they agreed to take her on as an intern. They even said if it works out, they would keep her on for her fellowship year! But if she has to drop out, she also loses that internship.
> 
> This all stinks because she was ready for the surgery and he pulled the rug out from under her. Now, I am not even sure her heads in that space anymore and she would have to do a lot of work to get back to that place. Especially given he stakes are a lot higher now.
> 
> She has been talking to other ostomates and they tell her she is really dreaming if she thinks she will have the surgery and return to school and clinic in two weeks. They are telling her it took them almost a full 6 weeks to get to feeling capable of handling full days at work etc. But if I had to bet anyone would do it, my bets would be on O. I would probably go back to school with her and help her for couple of weeks, until she is eating regularly anyway.


Is finding someone to supervise her the issue? We had that issue when M needed to spread out upper level labs over 3 days (they're 6 hours long 2 days a week which was too much for her) and she had to be supervised in the teaching labs at all times...unfortunately, she had to withdraw from that lab and do it the next year so that the department was able to arrange with a professor/lab instructor to supervise her...but her school was NOT the most accommodating till the end of her degree. In the end we wrote a letter to the President of her university and that got us an appointment with the Provost and after that, they were VERY accommodating. Worth a try, though I think it probably works better for undergrad vs. grad school.

I do agree with @xmdmom - I would tell the internship about her medical issues and I bet they will offer her a spot for next year. She is very bright and motivated and honestly, I bet they would be impressed by her passion and determination in the face of so many challenges. 

Poor O. I'm furious with her GI for making her try Tofacitinib...I'm SO glad you're getting ready to transfer her care. She should have had the surgery over winter break. 

I do hate the idea of her going back to school after two weeks - if anyone can do it, it's O, but I don't think she should have to. She should give her body time to recover. She's already underweight and she's likely to lose more weight with surgery - I hate the idea of pushing herself to get back to school ASAP. I watched M do it after her joint replacements and she did not give herself nearly enough time to recover. 
Taking two weeks off when other ostomates say it should be 5 or 6 weeks  ...I'd be a lot more comfortable if she could at least give herself 4 weeks.

Ugh...this makes me want to kill her GI. He pushes surgery for over a year and then when she finally agrees she needs it, he suddenly refuses?! Your poor kiddo.


----------



## crohnsinct

Hey y'all.  O saw the guru GI this week.  Quick recap: 

- he doesn't think she has been in remission for years other than maybe her first year or so after dx 
- she is at the end of pharmaceutical options - surgery is the next step
- she doesn't qualify for any of their clinical trials
- Tofa is a fast acting drug and if it isn't working by now it likely won't 
- He wouldn't consider Stelara - too slow and she doesn't have that kind of time and only works in 30% of rectal cases and that is all rectal cases not the severe refractory ones so really not likely to work for her 
- he ran labs, asked her to meet with surgeon and dietician 
- this center is so big that they literally have an IBD Colo-Rectal Center so the surgeons only do IBD surgeries.  Pretty cool. 
- GI said he wanted scopes after she got out of school in May but her calpro returned at >3000 and they called and said scopes asap.  
- she met with surgeon.  He was very nice.  Has IBD himself and a colectomy.  Did the same thing she is doing.  Delayed, delayed, delayed and it ended up being emergency surgery and he lost a year of school but said it is now a blip on the timeline of his life.  He stressed to her to put health first.  
- lots of thinking out loud on surgeons part but really needs to look at MRI and hear from GI what he sees at scope but he is thinking IF her ascending and transverse are good she might be able to get by with a resection and temporary ileostomy but that might mean more surgeries if disease spreads but at least she could get a few more years out of her colon but also increases risk of colon cancer.  We aren't getting our hopes up. 
- she needs an iron infusion and higher doses of vitamin D 
- she really liked the dietician 

She isn't sure if she actually wants to transfer care just yet.  I am letting her sit with it for a bit.  But she did schedule the scopes for 4/18 with new guy.


----------



## my little penguin

Great news 
like scopes so she knows where she is at


----------



## asadmom

crohnsinct said:


> Hey y'all.  O saw the guru GI this week.  Quick recap:
> 
> - he doesn't think she has been in remission for years other than maybe her first year or so after dx
> - she is at the end of pharmaceutical options - surgery is the next step
> - she doesn't qualify for any of their clinical trials
> - Tofa is a fast acting drug and if it isn't working by now it likely won't
> - He wouldn't consider Stelara - too slow and she doesn't have that kind of time and only works in 30% of rectal cases and that is all rectal cases not the severe refractory ones so really not likely to work for her
> - he ran labs, asked her to meet with surgeon and dietician
> - this center is so big that they literally have an IBD Colo-Rectal Center so the surgeons only do IBD surgeries.  Pretty cool.
> - GI said he wanted scopes after she got out of school in May but her calpro returned at >3000 and they called and said scopes asap.
> - she met with surgeon.  He was very nice.  Has IBD himself and a colectomy.  Did the same thing she is doing.  Delayed, delayed, delayed and it ended up being emergency surgery and he lost a year of school but said it is now a blip on the timeline of his life.  He stressed to her to put health first.
> - lots of thinking out loud on surgeons part but really needs to look at MRI and hear from GI what he sees at scope but he is thinking IF her ascending and transverse are good she might be able to get by with a resection and temporary ileostomy but that might mean more surgeries if disease spreads but at least she could get a few more years out of her colon but also increases risk of colon cancer.  We aren't getting our hopes up.
> - she needs an iron infusion and higher doses of vitamin D
> - she really liked the dietician
> 
> She isn't sure if she actually wants to transfer care just yet.  I am letting her sit with it for a bit.  But she did schedule the scopes for 4/18 with new guy.


Thank you for sharing your journey. May God smooth out the rough edges for your family going forward. Lots of prayers. 

Where is this new GI office? Still in Cali?


----------



## crohnsinct

No. We traveled  out of state. I know one of the big adult gurus is in SoCal but she goes to school back east so it is easier for her to get to this guy than come back west.


----------



## xmdmom

The new GI sounds rational to me.
 IBD Colorectal center.
Not easy decisions for sure.
Sending hugs her way.


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## Maya142

Big hugs to you and O!


----------



## Jo-mom

How's it going?   Thinking of you and hoping O has been doing well.


----------



## crohnsinct

No news.  Things are status quo. No new labs. Scopes still scheduled for 4/18.  I guess things will move after that.  She is supposed to have an appointment in the next couple of weeks but they had to cancel and haven’t rescheduled.


----------



## crohnsinct

Hey y'all!  Update time. 

O had a follow up with the GI last Monday.  He feels she is very sick and given her cal pro result that he is likely to find significant inflammation at scopes on Monday.  He wanted to check in with her and let her know that his suggestion is to move to surgery next.  He really doesn't feel Stelara is an option and Rinvoq is a cousin of Tofa and if Tofa isn't working then…..He mentioned a J-pouch and that their hospital is doing J-pouches on highly selective Crohn's patients. 

O told him she knew we were heading in this direction and that she is o.k. with it BUT she only had April as in right after scopes or December.  He felt waiting for December was taking too many risks and he said April would be better and he would talk with surgeon. 

She had an appointment with the surgeon last Monday.  Surgeon does not feel she is a candidate for a j-pouch as she has had ileal disease.  He "could" do a pouch but disease will just return to the pouch and she will have symptoms and need to be put back on meds and quite possibly have a failed pouch and need a third surgery (first would be colectomy, second pouch formation) to reverse the pouch.  O and I agreed that we have heard more regrets about getting a pouch than an ostomy. Surgeon said, "just because we "could" do a pouch doesn't mean we "should"". He also said, "a good ostomy is better than a bad pouch" 

So in surgeon's opinion her only options are a total proctocolectomy with permanent end ileostomy or a partial procto colectomy with permanent colostomy.  A colostomy output is a little easier to handle BUT they fail 50% of the time when the Crohn's attacks the rest of the colon and you end up having the rest of the colon removed and end up with an ileostomy anyway. 

The third option was to wait for colonoscopy and biopsies to assess the health of the ileum.  If it looks visually good and the biopsies show no disease then we could maybe try a total colectomy, wait the 3-6 months and then try a j pouch in December.  The only problem with this is biopsies won't be back for a bit and surgery would have to be put off to May or June and she would need to take a year off. 

She has gotten approval from her professors to miss the last three weeks of the semester and take her finals in the hospital so no interruption to school. 

He left the choice up to O.  She opted for the total procto colectomy with end ileostomy.  She just wants to be done . 

Colonoscopy is Monday. After colonoscopy the surgeon and GI will come in and present the findings and their opinion.  MRI, to further assess the TI is Tuesday.  Surgery is currently scheduled for Wednesday. 

They are of course still hoping that the scope might show healing and we can cancel all this surgery talk but say it is a slim chance.  She looks great to me and her symptoms seem to be pretty good so I am not so sure how slim this actually is. 

I will let you all know what transpires on Monday.


----------



## Tesscorm

I'm sorry it's come to this decision.    I'm sure O is disappointed that her options are so limited but it sounds as if she has comes to terms with it and wants to move on.  Who can blame her for this?  She has so much to do and so much to experience, her illness is doing nothing but holding her back.  

I am glad she's coming to a resolution and I hope she comes out of this full throttle and ready to go!  (But, still, upset for her and you that these are her only options.)


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## crohnsinct

Wanted to add that when I refer to GI and surgeon, these are the new providers at the new hospital not the old joker.


----------



## my little penguin

Wanted to send hugs to you and O 
Hope all goes well with the surgery 
And she finally gets some relief so she can move  forward


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## pdx

Hugs from me too. Hope everything goes as well as it can this week and that she has a clear path forward.


----------



## crohnsinct

Thanks @pdx How is your daughter doing?  You haven’t updated us in a while.


----------



## pdx

crohnsinct said:


> Thanks @pdx How is your daughter doing?


Not great, unfortunately. On the positive side, she is 4 weeks into EEN via ng-tube (her suggestion!) and symptoms are much improved. I'll do a real update on her thread once things are going better and I have a little more time.


----------



## Pilgrim

I've said it before but can't help repeat that O is amazing. I hope she heals quickly and honestly the world will need to watch out when this young woman emerges full power. It will be incredible.


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## Jo-mom

I echo Pilgrim's words.  She will be unstoppable!


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## Delta_hippo

So sad for you both but hugely relieved at the same time, it has just felt unsustainable and risky for so long.  
If op goes ahead then yoga pants (wide stretch elasticated waist - think supportive enough to hold things in place but no hard waistline- low slung jeans are not an ostomy friend) and long loose tops help at least in the early days.  There is special underwear to make you feel more confident.  There are numerous brands of ostomy bags and supplies so a bit of trial and error.  Hopefully you will get an ostomy nurse to go through it all with her.
I really hope she gets her life back after all she has been through.  
Best of luck with the scopes and lots of love to you both xx


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## Delta_hippo

Also soft food in the early days - insoluble fibre is to be avoided as you don’t want to block the bag.  Custard, rice pudding, white bread good, tomato seeds, cabbage stalks, berry pips bad.  Think the opposite of scd!


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## crohnsinct

Thanks @Delta_hippo .  The hospital she is at is one of the leading colo rectal surgery hospitals in the world.  They literally have an IBD colo rectal surgery department and her surgeon is the chief.  All they do day in and out is colonic surgeries on IBD patients.  They have an entire stoma team and O has an appointment with the team for her first lessons on Tuesday.  Later that afternoon she will meet with the ostomy nurse to mark the placement of the stoma. She will be inpatient 4-6 days and they assured us that there will be plenty of opportunity for education.  

The whole thing happened too fast for us to order all the free kits and such but you better believe we will get to that.  

I will likely be tapping you for advice on all the questions we are sure to have!  We have trolled an ostomy forum and man oh man are there a lot of things we are sure to come across.  Just when I became an IBD expert I get thrown into something new grr!


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## xmdmom

So glad she is getting care at a leading IBD colorectal surgery hospital!


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## crohnsinct

Thanks @xmdmom   I can’t believe we almost let her get this surgery at the childrens hospital that does maybe 4 a year.  We LOVE that surgeon but really if a reconnect is in her future the quality of the first operation is key and we really like the adult guy. He is just weird and quirky which if you are going to be digging in peoples bowels all day you sort of have to be


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## WiscoMom

crohnsinct said:


> Thanks @xmdmom   I can’t believe we almost let her get this surgery at the childrens hospital that does maybe 4 a year.  We LOVE that surgeon but really if a reconnect is in her future the quality of the first operation is key and we really like the adult guy. He is just weird and quirky which if you are going to be digging in peoples bowels all day you sort of have to be


I hear you on the "quirky" personality! It seems like in the medical field, the more specialized the area of expertise, the more "interesting" the personalities become! 

So much credit goes to you for finding the absolute best place for such an important step.


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## Maya142

You and O have this CIC! You have a wonderful team who will take great care of O. And imagine, once all the nasty IBD symptoms are gone, who knows what she’ll be able to accomplish!!
M suggests “world peace” and that while she knows it’s a tall order, she says she’s fairly certain O can do it - while finishing grad school, no problem!

We’ll be rooting for you, every step of the way….Sending big hugs!!


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## crohnsinct

Lol that M!  At this point I would settle for just peace in our hotel room!  She is quite cranky.

Surprised M didn’t suggest I adopt a whole animal shelter for her!


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## UKmum

I've read this whole thread throuought my time lurking on this board and i think both you and your daughter are amazing, I wish her all the very best with her op, sounds like you are in the best hands!


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## crohnsinct

WE HAVE A NEW PLAN!  This is why you travel to these high volume gurus. 

GI said sigmoid and rectum are very very severe severe.  Rest of colon and TI look good.   

Upadacitinib just got approved a few days ago. It is the strongest IBD drug yet. They are seeing a 70% success rate. Having her try yet another drug in the state she is in is too risky. He would like her to:

- have a diverting ileostomy now.  
- start Upa

The diverting ileostomy will help the colon heal and will let her try another drug without all of the risks associated with a massive flare should it not work.

We will reassess in December with scopes. If:

- the TI remains good and the colon and rectum heal, reconnect the TI to colon and maintain normal continuity. The only risk is Crohn's likes to attack anastomosis sites and once the fecal stream is back will the drug continue to work?  

- the TI remains good and the rectum heals but sigmoid remains diseased, perform a colectomy and make a j pouch. Of course there will always be a risk of disease attacking pouch or returning to the rectum

- regardless of what the TI does if the rectum and sigmoid don't heal, total proctocolectomy with permanent end ileostomy.

Pros: 

- lets her try the absolute last drug without the risk of flare and emergency surgery so if in the end it all has to be permanent there is no “what if we tried”
- gives her time to come to terms with ostomy so if it later has to be permanent it isn’t such a shock 

Cons: 

- possibly another 2 surgeries…the take down or pouch formation and then if those don’t work the colectomy/proctocolectomy 
- disease spreads or cancer forms but we will catch it quick enough and then just do the colo/proctectomy anyway.
- Upadacitinib is immune suppressing, unknown longterm risks 
- insurance might not approve it 

While she would rather not have to have an ostomy at all, she thinks this is a pretty good plan.  

She got her stoma tattoo today. 

She has to remain on clears only until Wednesday which stinks but oh well.

MRI tomorrow to assess TI health so we have an idea of what might be possible in December.

Manometry test tomorrow to assess sphincter function. This is just another piece of the puzzle that we will need to know to decide what is possible in December.

They are cautiously optimistic and given everything O has tried they won't be surprised if it doesn't work but we have to try.  

There ya go!  All caught up.  I think this is the best possible plan and feel really good about it.  O also but she wants to eat!


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## my little penguin

Woohoo  
Sounds like a great plan and gives her options 
And time to adjust to the idea if it’s permanent 
Hugs 
Big hugs to O 
Being clear stinks 
But makes sense since she has MRE Tuesday and then surgery for ostomy Wednesday


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## pdx

That sound good. Fingers crossed that the surgery goes really well with a quick recovery.


----------



## xmdmom

What a rollercoster!

Was Upadacitinib approved for Crohn's?  

I see nothing on Abbvie's website or in the news.  The only recent approval I saw was the approval for UC last month.   Could it be that her doctor is in the know and heard it's going to be approved or was approved but not yet announced? Or have I lost my googling abilities-- I'm a bit sleep deprived so that's definitely possible.

I am thinking of her and hoping things go very smoothly for her. She deserves some smooth sailing!


----------



## crohnsinct

I am thinking they are keeping the UC dx or like you said he knows something.  You are definitely NOT losing your skills.  

BUT I uncovered a host of other questions…namely Rinvoq is enteric coated and you are not supposed to take enteric coated meds with an ileostomy because they are made to release in the colon so basically all that money will be spent to treat her ostomy bag with Rinvoq.  

Can crush it.  Maybe they have a different formulation?  But my forum angel uncovered that ostomy patients were excluded from the trial.  Likely for this reason.  

Soooo not sure what this means for us.


----------



## Maya142

> Was Upadacitinib approved for Crohn's?
> 
> I see nothing on Abbvie's website or in the news. The only recent approval I saw was the approval for UC last month. Could it be that her doctor is in the know and heard it's going to be approved or was approved but not yet announced? Or have I lost my googling abilities-- I'm a bit sleep deprived so that's definitely possible.


It was approved for UC...it is in trials for Crohn's. I don't know if it's been filed for approval yet though. My kiddo was on it for her arthritis (15 mg) once with an anti-TNF (caused a lot of infections) and once at a higher dose by itself (30 mg - which is what the maintenance dose is for UC, the induction dose is a whopping 45 mg). It worked for her Crohn's (we think, she wasn't scoped) but it unfortunately failed for her arthritis.

Upadacitinib is enteric coated and CANNOT be crushed. We asked the pharmacist and then actually contacted drug manufacturer (since M's Gastroparesis means she does not absorb oral meds well - everything goes through her J tube, so we need liquid meds or meds that can be crushed) and they said the same.

Xeljanz does have a liquid formulation and I think a non-enteric coated pill form, but I don't believe Rinvoq does. But perhaps the UC pills are not enteric coated?

It is also light sensitive, so it can't be put in a pillbox - you have to keep it in the bottle they provide.

Glad they have a plan but I'd check with them on Rinvoq.

How is O feeling about the new plan?


----------



## crohnsinct

The only thing O says is she wants to eat  She will be 3 days on clears only.  She has done this before but she had TPN so that helped a lot with the nutrition aspect.  This water and gatorade is not satisfying her.  She can't do broth.  Lemon Italian ice was meh.  Hates Jello.


----------



## xmdmom

Popsicles?

I definitely would ask about the med in an ileostomy tomorrow cause if it can’t be given then what is the plan?

Would she only be to Upa?

"the TI remains good and the colon and rectum heal, reconnect the TI to colon and maintain normal continuity. The only risk is Crohn's likes to attack anastomosis sites and once the fecal stream is back will the drug continue to work?"<--- what does the doctor say?  How likely is this?

I want to know about the study where there was 70 percent success. Was that severe Crohn's and endoscopic remission?

That it is approved for UC and they'd treat her with it, reminds me of the old doc with Tofa.  My understand it that Crohn's and UC are different diseases that respond differently to drugs.  Calling her illness UC won't make it respond like UC...


----------



## crohnsinct

I haven't found popsicles but will keep trying.  Maybe the cafeteria has something.  

I had her send the message to the GI cuz he will handle the med side of things.  I will be so miffed if then we are back at postpone surgery to try Upa, especially after he said earlier today that this wasn't a good option.  

Crohn's attacked the anastomosis…pretty likely but no way of really knowing. But if we get good control over her disease then less likely. 

I can not find 70% anywhere. Granted my google skills and access to studies is no where near your level but the rest I can find is 40%. I think the 70% figure is antidotal among GI's at conferences etc. 

So true on your last point, however, Tofa failed miserably in Crohn's and they discontinued trying to market it for Crohns and Upa is doing well (by IBD drug standards) in the Crohn's trials.  But I did read the criteria and while they had people exposed to multiple biologics none of them could have abandoned the drug for non response.  It had to be insurance issues etc.  This isn't to say that they didn't have non responders in the trial…I think they did but if you aren't studying true multiple non responders then…..

My mood just took a sharp turn.


----------



## Maya142

I don't know about the 70% rate but I know M's GI had patients in the Upa trial and was very pleased with how it was going. These were patients who had failed other drugs and she said had been really sick. So perhaps there's hope? I do think the enteric coated thing is going to be an issue unless there is a different version of the drug for UC? M was getting it for arthritis, so she was taking 2 pills of the normal arthritis dose (2 x 15 mg) and those were enteric coated.

O has a tube still, right? How about pumping in some broth? It might help feel less hungry. M is the opposite - she only drinks broth before scopes. And she will sometimes have a popsicle. So I do the opposite and put plenty of gatorade in her stomach through her G tube!

Poor kiddo...I hope she has a good TV show to watch to distract her.


----------



## xmdmom

They are the experts and this is the plan they came up with so one would hope that they have thought it all out.

In any case, this is the time to ask all of your questions.

(((Hugs)))


----------



## crohnsinct

I am concerned that we are going to be asked to postpone surgery and give Rinvoq a try and face the risk of it not working and surgery in July or August.  That would stink.  

I am hoping there is another formulation or that the say a good amount gets absorbed sooner.  

Great suggestion on the tube.  I will try that.  

No TV.  Just sitting here doing school work and watching Tis Toks.


----------



## crohnsinct

Well she asked the question so we will see what they say.  It could simply be a matter of, "oh yeah that's what they say but it really doesn't matter"…how many times have you heard that before?


----------



## Maya142

Hmmmm...well all we were told it really definitely cannot be crushed and if with an ileostomy she cannot absorb it, I would hate for her to have to waste months trying it. 

I REALLY hope they don't delay the surgery - she would definitely have to take a year off then, right? And she really does not want to?

Also, MRE contrast can go through the tube - to save her from drinking it!


----------



## crohnsinct

OH!  You know what I forgot to tell you guys….I know you all think O is tough but…She was awake for scopes!  EGD and COLO!  She said the EGD was rough and she gagged a good amount.  I think they gave her some local but she said he hit a point where she said "ohh" and the pinches for the biopsies were REAL pinches.  She misses pediatric scopes. 

Yes @Maya142 I think if she tried Rinvoq without the ileostomy we would give it 3 months max and hen surgery and that means a year off and she is loathe to do that. 

She packed her bolus tubing etc because she fully plans to do the contrast through her tube.  She digit that way last time and only had a problem at the very end.  After she has to do two doses of milk of magnesia to get the contrast to clear her system in time for surgery the next morning.  He is going to try to do her first or second.


----------



## Maya142

What?! Awake?! Seriously?!! That's insane! M has had adult scopes and was very asleep - that's standard at the hospital she's at. Heck, I have had adult scopes and was very asleep. O IS tough - there's no way I'd EVER do awake scopes - I'm way too much of a chicken! They always use Propofol for M's and that's what they used for me too.


----------



## my little penguin

I had a scope and was asleep but dh had a scope same adult hospital as me but different office etc … was awake but medicated (so he didn’t care ) 
So it does depend on the place


----------



## Maya142

Yes, I've heard of using Versed and Fentanyl so you're awake but out of it, but never completely awake scopes. Yikes .


----------



## Pangolin

Wow what a change. Diverting away from the very severe area and trying upadacitinib actually sounds like a really good plan to me.


----------



## Maya142

Any news CIC? How did the MRE go?


----------



## crohnsinct

At the MRI now. Just finished the manometry. She said it was just weird but not terrible. All her results posted and none are within normal limits…shocker.  So maybe pelvic floor therapy heading her way to prepare for if/when she reconnects. 

Her original GI from CT has stayed updated on her case through a nurse I stayed friends with. He feels this is not a bad plan and that she needs to get on with her life. Said there is very limited data on Rinvoq for Crohn’s and that he really thinks the ostomy will be permanent but baby steps.


----------



## Maya142

Glad the manometry wasn't too bad. She really is a trooper. Many years of inflammation and diarrhea probably led to low muscle tone and/or pelvic floor dysfunction. She'll have to work with a physical therapist who specializes in pelvic floor PT. 
My daughter actually has a friend who has severe pelvic floor dysfunction due to years of constipation from Crohn's (hers is primarily in her small bowel and rectum) and she ended up with a uterine and rectal prolapse, so it's definitely better to treat it before it gets bad.


----------



## GirlwiththeCurl

Popping in from the hinterlands. I hope things go well for O and that there's no delay in surgery.

I thought enteric drugs were coated to not dissolve in the acid environment of the stomach, but then dissolved and were absorbed in the small intestine. Is Rinvoq specifically designed not to release until the large intestine? I tried to look it up but didn't find any specifics about where it is released/absorbed (other than just that it has the enteric coating).


----------



## xmdmom

Thinking of O today and sending best wishes.


----------



## my little penguin

Hugs for you and her today 
Fingers crossed things go well as can be expected


----------



## Maya142

Big hugs and lots of good luck to you and O. We’ll be thinking of her today.


----------



## Pilgrim

Hoping for all the best today. Good news, good results.


----------



## Maya142

GirlwiththeCurl said:


> Popping in from the hinterlands. I hope things go well for O and that there's no delay in surgery.
> 
> I thought enteric drugs were coated to not dissolve in the acid environment of the stomach, but then dissolved and were absorbed in the small intestine. Is Rinvoq specifically designed not to release until the large intestine? I tried to look it up but didn't find any specifics about where it is released/absorbed (other than just that it has the enteric coating).


We were told it dissolves lower than the stomach (which is too acidic, as you said) - my understanding is the small bowel but honestly that’s just an assumption because many drugs are absorbed there.

I think a pharmacist who has experience with ostomy patients might be the one to ask. Or someone from AbbVie.

Sending big hugs to O!!”


----------



## xmdmom

I have had luck calling the inpatient pharmacy and asking to speak to a pharmacist snd asking my questions. Just say you are a family member of a patient there.


----------



## crohnsinct

She did great!  

I always laugh when surgeons say that. Like ummm of course she did you knocked her out!  What they mean is “I did great”

The surgeon checked in with us before and said they reviewed her MRI. TI looks good. Sigmoid and rectum maybe a little bit better BUT the sigmoid is getting dilated so we know we are doing the right thing.  

After surgery he said TI even looked good when he went in.  This will be key to reconnect. We just have to sit and wait to see how the sigmoid and rectum do on Upadacitinib. I didn’t ask how long we are going to wait to evaluate that. I am just concentrating on the here and now. 

He also did say that she has a beautiful ileostomy…haha if he does say so himself.  But that will also be key to her feelings if this all actually ends being permanent which there is a big chance it will. 

She can’t eat until tomorrow.


----------



## my little penguin

So glad it went well 
Ugh on no food 
But her is too healing


----------



## xmdmom

I hear people name their ostomies. Does she have a name picked out?


----------



## crohnsinct

Lol yeah they do but she doesn’t have a name yet. She did say if she gets the reversal she is getting a tattoo at the stoma sight.


----------



## crohnsinct

The hospital is booked solid.  The only bed they had for her was in a short stay unit and apparently everyone else here is also not short stay patients.  She is in one of 10 bays.  The little princess is definitely not used to these accommodations!  She misses her resort pediatric hospital. 

That said she is laughing, smiling, sitting up doing homework.  Has already looked at her bag and stoma (they use see through bags in the hospital), when I got upstairs to her bay she showed it to me and has already walked down the hall to the bathroom. 

So all in all a pretty good day. Just supes loud in here and distracting and no shower etc. but it will give her the motivation she needs to get outta here.


----------



## Maya142

Way to go O!!!! That’s incredible!!!
The short stay unit does not sound fun - we’ve done it for two nights but I can’t imagine doing 4-6.


----------



## my little penguin

Hopefully they will find a more permanent longer stay room tomorrow or the next day 
Good to hear she is up and walking


----------



## pdx

So glad it went well!!


----------



## crohnsinct

O.K.  y'all. Bragging Mom Alert 

O hasn't had a stoma nurse visit yet but her bag was filling with air and getting pretty big.  So little miss thing picked up the bag, opened the bottom valve and squeezed out the air.  I said, "maybe you shouldn't be playing with your bag until they teach you" She said, "I watched the nurse do it earlier, I am just letting out a little air. Relax mom".  

So I would say that for today she is pretty well adjusted.


----------



## my little penguin

Love  it !!!


----------



## Jo-mom

Wow, so amazing.  She is quite remarkable.


----------



## crohnsinct

Lesson time - they did a loop ileostomy not an end ileostomy.  I will let you look them up but the loop is where they take a piece of ileum up and make a loop, cut it and fold it back to create the stoma.  The end they just cut the TI from the colon and pull the end out.  

The difference is that the loop is intended for temporary surgery.  For O specifically the loop was used so IF they reconnect the anastomosis is in the ileum rather than the colon.  Remember Crohn's likes to attack anastomosis sites and her Crohn's is worse in her colon.  

Have I told you how much I appreciate the new team.


----------



## crohnsinct

Day 1 post op - no sleep too loud but she tells me her bag was full and no nurse around do she just walked down the hall and emptied it herself. 

They have to measure all output. Dehydration is one of the big issues with an ileostomy so they are taking labs and measuring everything. 

First nutrition lesson. On soft GI diet for 4-6 weeks. 

Surgeon came in and said she and her stoma look great.  He may approve releasing her early because she will get more rest in the hotel than in short stay but we could talk more about that tomorrow. 

Oh yeah and she went to the bathroom and came back saying and I quote,”I pooped!  Like out my colon!  Thought I wasn’t supposed to do that anymore!”  She is being funny. She understands that obviously there was some stuff in there that needs to go but she thought it was funny. 

Surgeon said it’s going to take months to get the upadacitinib will take months to get approved. 

Waiting for them to get her xeljanz added to her med schedule so she can start taking it again. 

Sorry to bore you all with the details but figure this could be useful for someone else down the road.


----------



## Jo-mom

You are never boring and this information is really good to have.


----------



## crohnsinct

Oh and as for the enteric coating, he said her ileostomy is so far down that she will likely get most of the medicine and that she could just watch her pouch and if she sees the pill totally intact then we can worry about it.


----------



## my little penguin

Good to know on the rinvoc 
Ds had pills that came out whole (even with a colon ) 
Asacol was one and Pentasa another


----------



## crohnsinct

LOL Asacol and Pentasa are famous for that BUT from what I have heard from UC peeps is you can get all the medicine and just the shell of the pill comes out.  They call that a ghost pill….but you sorta have to fish it out and feel it to make sure which it is….They skipped that chapter in What To Expect When You're Expecting.


----------



## Pilgrim

Oh my goodness!


----------



## Delta_hippo

She is doing so well!  Amazing girl.  Yes you do continue to poo occasionally, the colon makes a kind of mucus can’t remember if it’s a self cleaning lining thing or something like that so a (small) clear poop every few days.  
She is doing so well.  I’m so glad.  Hugs to you both xx


----------



## Maya142

Wait, why would the Rinvoq take months to get approved if her dx is UC? They approved Xeljanz fast enough and that’s for UC.

You do see what we think is the shell of Rinvoq in your poop. Either that or it was the whole Rinvoq…we couldn’t tell. We did not try fishing it out…I skipped that chapter too in What to Expect When You’re Expecting. 

Just FYI, we were able to get Rinvoq approved for M when it had only been approved for RA - based on the fact that she had failed everything else. O has failed everything else too (well,  except Stelara but they don’t want her on that) and so I would hope it’ll go through. We did have to appeal for it but it didn’t take that long as far as I can remember. Especially since there were trials that showed it worked in psoriatic arthritis and AS.

When would they consider discharging her?


----------



## crohnsinct

@Delta_hippo They told us they only give her about 2 or 3 bags and related supplies and that this should get her to her first delivery.  So we went on the Hollister site and immediately got overwhelmed with all the choices of products.  

We decided to wait to meet with the WOC nurse because maybe se will have some advice of where to even start and sizing etc but yikes there is a lot to get used to and to consider. I sense quite a few shipments coming her way. 

How long did it take you to find your favorites and what worked best for you? 

You would think they would make some sort of contraption with a screw top that attaches to you and then you could just unscrew disposable bags whenever you wanted and screw on a new one.


----------



## crohnsinct

@Maya142 Hmmm IDK, they are just saying from their experience.  Also, I think it might be a little different for UC considering, surgery is a cure and then the insurance company stops bleeding money, well except for ostomy supplies but still nowhere near the cost of these meds.  M didn't have a surgery option.  

He is already saying she maybe able to get out tomorrow.  He said she will rest better in the hotel and as long as we are close and can run back he is amicable to letting her go…assuming her labs trend well, the stoma looks good and output looks good.  Oh and stoma training is complete.  

All her numbers took a quite a hit with the surgery.  H&H, CRP, albumin etc.  I am hoping they come up a bit before they let her go.


----------



## Maya142

That does make sense - no way you can replace every joint involved, you have to be on a medication.

 So will they then have to get it approved for her Crohn’s? I still think with appealing it will be doable but yes, then it could take a while.

 I hope the stoma training goes well!


----------



## crohnsinct

I think they are keeping the UC dx because the ileum looked good and it will be easier to get the Rinvoq (upa) approved that way.


----------



## xmdmom

I am not sure what you meant by “All her numbers took a quite a hit with the surgery. H&H, CRP, albumin etc. I am hoping they come up a bit before they let her go.”

Exc for bleeding, transfusion or hemolysis (destruction of red blood cells), any rapid changes in H/H numbers are related to hydration status. Higher numbers are usually dehydration.

Same with albumin. “*Albumin levels can rise* when a person is dehydrated. This is a relative increase that occurs as the volume of plasma decreases.”

CRP rises a lot after surgery (in everyone) and can take a while to go down. The IBD team should be very  familiar with the usual postoperative levels and time course of normalization of elevated CRP.

Ask the doctors if you have concerns or just want to know!


----------



## crohnsinct

Yep. That’s what I was thinking. Her last tests were day after scopes and she had to be pretty dehydrated so they were artificially high.  That rather than blood loss with surgery. 

So now H&H are really down but she is getting round the clock fluids so finally hydrated.  So maybe this is actually where she would normally sit. Who knows. But yeah. The team is watching them and the fact that we are staying close by means a simple stop into the lab so likely no reason to keep her longer.


----------



## Delta_hippo

So yo u want bags that you cut the hole yourself rather than precut because as swelling goes down and area heals the stoma can change size. The idea is get hole as close to aroma size as possible to protect the skin around it because the liquid poop being higher up is quite acidic.
Here in the UK I just got issued with bags which worked fine.
The stuff that wasn’t automatic and I advise getting hold of are:
1. Banana skin stickers- these are a clear plaster shaped like a banana that you stick over the edge of the bag to your skin advert an extra layer of protection to minimise risk of leaks
2. Scented drops - you put these in a bag and neutralises any smell or odour so feel less self conscious 
3. Special pants or waist band - you can get stoma underwear which has a built in pocket to support the bag - either these or a stretchy waistband type thing - again makes you feel more supported and confident
Get loads of wipes you will get through a lot in the early days
Keep an eye on skin around stitches for post surgery infection.  Any new onset back pain is a warning sign too
A bag lasts 2 or 3 days depending how often you change them
You can get a spray to loosen the bag before changing.  A friend with UC just soaks in a hot bath for a bit.  
I hope it is all going well.  No question too silly or gross


----------



## Delta_hippo

...as close to stoma size....


----------



## Delta_hippo

The naming thing is about how do you come to terms with it.  Some folk find it helps.  I didn’t bother but mine was temporary until I recovered enough


----------



## Delta_hippo

Pants - I mean knickers - sorry forgot you Americans use pants for trousers


----------



## Scipio

Delta_hippo said:


> Pants - I mean knickers - sorry forgot you Americans use pants for trousers


Americans normally don't say knickers either.  The more common terms here would be underwear or underpants, or sometimes panties for girls' or women's underpants.


----------



## crohnsinct

LOL!  Our forum is also a fashion forum now.

@Delta_hippo she is thinking of wearing spanks for when she feels like she needs a little ore support to hold the bag.  

SHE IS BEING DISCHARGED! 

The surgeon said she did amazingly well. He said top 10%! He is on call all weekend and we are staying in a hotel on the hospital campus so if anything he said just have them page him although as good as she is doing he doesn't anticipate we will need him. More like we will need a stoma nurse for pushing issues

We will stay here for about two weeks, have her follow up with his NP and the stoma team and leave from there. 

This is so amazing.  We are used to being the patient that doesn't get to go home on time ever and now we are leaving a day early.  If that doesn't say this needed to be done, IDK what does.


----------



## my little penguin

woohoo
 love it


----------



## Maya142

So incredibly impressed with O and SO glad she's being discharged!! I hope she is able to get some rest at the hotel!!

I think stoma specific underwear or pants or knickers or whatever you call them are a great idea. Spanks might be hot...I'm just thinking that as it gets to be summer, she may be very uncomfortable in them, if she's going back to school. 

When does she go back to school?


----------



## crohnsinct

Yep!  That’s why it is so important to do these surgeries when it’s not an emergency and you can do it laparoscopically. 

Lol Maya…IF she is going back to school. She of course is!  Classes start 5/18.  We hanging out here till post surgical follow up with surgery and stoma nurse. Then will drive to where T goes to school and watch her play ball.  After that it’s up in the air whether or not she will come to ca for a week or go to school.  She doesn’t want to go to school because then she will have a week and half all alone.


----------



## Maya142

LOL - oh I know she's going back to school eventually  ...this is O we're talking about! I just didn't know when (you also mentioned an internship in CA, so I thought that might be before she goes back to school). I figured if she was going back in the summer she would be very hot in spanx. Would high waisted underwear work because my daughter tells me that is a thing and she should look at Aerie if that would help.


----------



## crohnsinct

Yes where she goes to school it is like a swamp in the summer. I hadn’t thought of that.  I wish she would wear a nice flowy sun dress.


----------



## crohnsinct

See?  You come here for the IBD but stay for the fashion!


----------



## Maya142

Well M even says that she may be able to find a bikini that covers her stoma - she showed me a whole bunch of high waisted bikini bottoms (we don’t have a good sense of the size of her bag though). M has managed to find a bikini that covers both her g and j tubes!
See, it’s all about the fashion now…no IBD!


----------



## crohnsinct

Lol!  Yes!  And O needs two dresses to wear to weddings so tell M to get on it!  

OK so the thing with the bag isn’t so much how high it sits but how low it goes. O and I were really quite surprised at how long the bag is. She actually said it will likely hang out of the bottom of her shorts a little yeah she has some really short shorts!  

Then for now anyway the bag is pretty big and bulky but I think that’s a function of her stoma still being pretty big (they shrink down over time) and the institutional bag. I think we can shop around to find a more comfortable bag. I think they make smaller ones also but then you just have to empty them a lot more frequently and she is already emptying hers like 8 times a day. 

Will send a fashion update as soon as she feels up to going out. For the weekend she is going to lay low and study for finals which are this week.  Probably a good idea to heal a little more before dragging around malls and such. I will stay in the kitchen whipping up GI Soft Diet culinary delights


----------



## Delta_hippo

So the thing with Spanx is they just squish everything so okay for a night out but too much wear and the stoma might get sore.  You can get special swimwear and underwear (thanks Scipio!) have a look at siilostomy.com or similar but if she decides to go that route get ready for tears when you get the credit card bill


----------



## Delta_hippo

In terms of emptying all the time if the output is too watery and that is why filling up a lot talk to the stoma nurse they might recommend porridge or similar to slow it down.  And watch out for dehydration especially in hot weather (remember the colons job is to extract water and some nutrients).  If she is on vitamins (d?) look for a spray or liquid version any regular meds check with pharmacy if they can be crushed.  Depending where they operated she might need to supplement b12 (I want to say terminal ileum but not sure) there is a specific bit of bowel that absorbs it so need spray or injections instead.


----------



## crohnsinct

Oh thanks @Delta_hippo today is a rough day. None of her clothes fit with the bag and location of the stoma. Some pants pull on the bag and hurt. Her leggings look ridiculous with ginormous bag going down the leg.  I think she is really going to want one of those belts.   I think she also really needs a different bag. These are so cumbersome.  And she definitely does not want clear bags.  So that is one change we have to make.  

Quick question.  When you say lots of wipes, what are they for?  They taught her to clean the skin around stoma with paper towels soaked in a water/gentle soap solution. No moisturizers or scents.  So the appliance sticks better to the skin.  BUT emptying the bag is awkward. Any tips?  We already figured out toilet paper in the toilet to avoid splashed. But lots of effluent gets on the opening and she wants to clean that before rolling it back up.  Also, effluent doesn’t come out easily when it is thicker.  So she has to squeeze it out. I am sure she will get into a rhythm and routine but if I can help her with tips and tricks from others that will help learning curve go faster.  

We went out for breakfast (hospital cafeteria). She had to go. The old fashioned way. Didn’t make it and had an accident.  Back at hotel and back on toilet pooping and bleeding. If this doesn’t say the surgery was necessary….


----------



## crohnsinct

Oh yeah and dehydration is definitely going to be an issue with her because she only likes to drink water and they told her no water. It thins the stool out too much and makes things move through too fast.  So it is rehydration solutions. She has tried 2 so far and they both gave her massive headaches because of the artificial sweeteners which apparently are also necessary because sugar thins the stool out too much also.  

They did give us some make your own recipes so going to try cranberry juice, water and salt when we get to the air bnb. Vitamin water and salt is another but idk what is in vitamin water. Gotta check it out. 

But for now, her output was pretty thick thus am so I am thinking she needs fluids and will hook her up with the Liquid IV stuff at a very slow drip and hope it avoids the headaches.


----------



## crohnsinct

So I am figuring the active colonic issues are because even though we diverted. She still has disease.  And they held her meds for a few days.  And she didn’t fully clean out for the surgery and the contrast must have still been in there.  We will give it time.  She got back on Tofa last night.  Surgeon did say she might see mucus/blood for quite awhile.


----------



## Delta_hippo

Ah poor girl. She will get the hang of it.  Clothes are a real issue because the normal stuff like low rise jeans will really cut across the stoma and be sore - high waist jeans however are lovely and also as denim is thick kind of disguises the bag.
Wipes are like paper towels and for same purpose but made out of a softer material- not sure what now I think of it - but yes soak in warm water to clean the skin.
Emptying the bag is tricky because toilet is the wrong height! Thicker is easier than very watery which splashes everywhere. It is not glamorous. Also be warned the stoma has a mind of its own so if showering without the bag e.g. during a bag change it may spurt stuff out.
I got told to drink squash (cordial?) which I did - you could try a little coconut water in water with a slice of orange and pinch of salt.  Get the proper sea salt which has all the minerals in.  
I hope things settle down for her xx


----------



## crohnsinct

LOL yep!  She had all male nurses inpatient and her stoma nurse was a young guy.  He took the bag off and was talking to her and that thing just kept dripping poop all over the place.  Luckily she laughed out of embarrassment.  He was great.  He said, "you either laugh or cry and I am glad you are laughing".  He told her eating a big marshmallow a half hour before she changes her bag will help calm it down also.  Also said she will get used to when it is the least active and maybe can shower without the bag on at that time but not even necessary, his father showers without the bag any time he wants.  He also told her it was one of the best looking stomas he has seen so there is that. 

What do you do about how low the bag goes?  It literally goes a little down her leg so would go down the jeans pant leg a bit. Maybe she just has a really small torso?


----------



## Delta_hippo

So from what I remember, in hospital you got an enormous see through bag so they could keep an eye on output and didn’t have to change it too often, once set up with ordinary supplies it was smaller and not see through, grey as I remember.  So this might be a short term problem.  Have a look online at people modelling ostomy bags and see if they look smaller than hers.  The underwear I mentioned has a pouch inside so the bag sits in that, definitely not trailing down a leg.  I think she is still on hospital bags.  They don’t discharge you until food has gone in at the top end and poop into the bag at the other end so it lets them just glance and see to check if things are working!


----------



## crohnsinct

Ahhh.  That explains it.  I am going to have her call around to the various companies and get some free samples. Hopefully they can get them to the airbnb in time for us to try shopping.  No sense shopping with this big, loud bag.


----------



## Tesscorm

Lots of hugs to O!  As amazing as she is, this is still quite a lot to process, learn, etc.  Thank God she has you to help her get through the first little while.

I'm sure you know this but just in case... I've seen quite a few posts on TikTok re stomas.  There was even a girl on there who makes covers for her bag and matches the fabric to outfits!  Maybe it'll help O with the 'fashion' side.

Thinking of you guys!


----------



## Maya142

O is such an incredible kid. I'm so very proud of her. I'm sorry to hear she's having bleeding and diarrhea but I guess you're right that things won't heal overnight (though I really wish they would!!!). Could rectal steroids help? Just temporarily?


----------



## crohnsinct

That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested.  Said just to watch it and if it doesn't get better to call.  

Did her first bag change on her own today.  Man the WOC nurses make it look so easy!  Just hoping she got a good seal and she doesn't spring a leak.  In the Air BNB all day taking finals so if she does not the end of the world.  

She is super comfortable with the stoma now.  Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc.  It is like a new pet!  So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.  

Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there!  However, they needed an in person appointment to tick all the boxes.  The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole.  Boy am I glad we came to these guys.  

So she should be getting her upadacitinib by the end of the week.  

Shingles and pneumonia vaccine given in the office.  Hep A & B to be gotten at home (no antibodies on testing they did in hospital).  They are trying to get her the iron infusion for while we are here.  

Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.  

So, post op check with NP and stoma nurse on 5/3, then we can leave.  Lipid labs in 8 weeks. F/U with GI in three months.  December scope and next surgery.  Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.  

That's it!  No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom.  Just go out and live your life and we will see you in December!  How freeing!  Yeah there is the whole endless stoma management questions but that's what forums are for 

Try not to miss me while we are gone. JK you know I will be here.


----------



## my little penguin

That is such great news
She gets her life back 
 woohoo


----------



## Jbungie

crohnsinct said:


> That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested.  Said just to watch it and if it doesn't get better to call.
> 
> Did her first bag change on her own today.  Man the WOC nurses make it look so easy!  Just hoping she got a good seal and she doesn't spring a leak.  In the Air BNB all day taking finals so if she does not the end of the world.
> 
> She is super comfortable with the stoma now.  Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc.  It is like a new pet!  So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.
> 
> Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there!  However, they needed an in person appointment to tick all the boxes.  The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole.  Boy am I glad we came to these guys.
> 
> So she should be getting her upadacitinib by the end of the week.
> 
> Shingles and pneumonia vaccine given in the office.  Hep A & B to be gotten at home (no antibodies on testing they did in hospital).  They are trying to get her the iron infusion for while we are here.
> 
> Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.
> 
> So, post op check with NP and stoma nurse on 5/3, then we can leave.  Lipid labs in 8 weeks. F/U with GI in three months.  December scope and next surgery.  Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.
> 
> That's it!  No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom.  Just go out and live your life and we will see you in December!  How freeing!  Yeah there is the whole endless stoma management questions but that's what forums are for
> 
> Try not to miss me while we are gone. JK you know I will be here.


You girls are amazing honestly. Your determination and positivity is unbelievable!


----------



## xmdmom

So she will be getting Upa by the end of the week but does she need to wait a certain amount of time after surgery or vaccines to start taking it?


----------



## crohnsinct

Yes, she should be getting the upadacitinib by the time we leave (5/3).  The hospital has a specialty pharmacy and a good supply of it.  She is taking the xeljanz while we wait even though it didn't get her to remission, it did keep her from disaster zone so they want her to keep taking it.  They didn't say anything about waiting and she is taking her xeljanz so…..

Hydrating is still a little bit of an issue because she can't drink straight water and can't process artificial sweeteners.  I think we might have hit on a recipe that will work.  If so, I will post it here for others who might be following the ostomy diary. 

So here is some ostomy humor courtesy of O. 

While in the hospital she went to the bathroom to empty her bag and came back and said, "just think…all those years of potty training wasted" 

Today she is still having some activity per rectum.  She came out and exclaimed, "Mom, I am still going to the bathroom…the old fashioned way!"

And last but not least, some young guys moved into the Air BNB under us.  I met them in the laundry room and told her about them.  She wanted to know if any of them were "cute" so I am guessing girl got her groove back.


----------



## my little penguin

O is hilarious  
Love the comments 
And glad she is accepting the bag a little more each day


----------



## Maya142

She’s really too much ! It kind of sounds like she feels FREE - as she should!!! I know she still has surgeries and scopes ahead but hopefully she will have more normal days that don’t revolve around the bathroom.


> She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.


Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?

M has been asking if O has named the stoma?

Really hope she gets Rinvoq soon!!


----------



## crohnsinct

Maya142 said:


> Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?


O.K. that made me literally LOL!  Potty training not an issue.  

Well she hasn't 100% settled on a name but it is definitely a she.  She says, "she is pooping, she is being loud, she is quiet".  

She originally wanted to call her SAB which is an acronym for…well I will let you figure it out. But it made it seem like O was angry at it.  Then she said how about Sabrina and when I am mad at her I can call her Sab.  But really it is just her and she for now.  

I am starting to get concerned because ostomy supplies haven't come and we haven't heard about Rinvoq and we leave Tuesday.  I actually think the supplies got sent to CA because O talked to the guy on the phone and she said he said the supplies will be shipped in a couple of days.  I asked her what address and she said, "oh, he didn't say". I then asked, "well did you give him the Air BNB address?" and she said, "oh, no". For a 4.0 student she can really have some brain farts sometimes.  She said it is post surgical fog.


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## crohnsinct

Stoma/fashion update!  

O had her surgical follow up with NP and WOC nurse.  She passed with flying colors.  Physically looking good, ability with pouching system A+ and mental attitude and adjustment really great!  She is cleared to travel away from hospital city. 

She did have some skin separation around the stoma that the WOC nurse taught us how to treat.  Sprinkle a little stoma paste, cover with a dressing then put on appliance. in a few changes skin will fill in. After that they advise she start using barrier rings to protect the skin around the stoma and increase the life of the appliance.  

More importantly, high wasted mom jeans work with her ostomy!  And she tried on high waisted bikini bottoms and with some adjusting the pouch fits nicely.  She also bought two dresses because dresses are easy. She never wore dresses before so that was interesting. 

She is really anxious to get rid of her g tube so she can at least wear crop tops but GI won’t approve that until well after December surgery so stuck with it for a while. 

This morning she said if In December she can’t do a straight reconnect she thinks she will choose total proctocolectomy with end ileostomy.  She feels like this isn’t so bad and the j pouch will be worse.  We’ll see.  

Still waiting for Rinvoq and ostomy supplies.  WOC nurse gave her a couple of extra pouches and appliances.


----------



## xmdmom

I love hearing all of this positive news!


----------



## my little penguin

Wow  
Just wow !!!
Way to go O !!!


----------



## pdx

Thanks for the update! So glad to hear how well everything is going.


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## Maya142

I love the good news!!! O deserves to enjoy her life now. She is one incredible kid!


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## crohnsinct

Still traveling and bored so thought I would send a quick little update. 

O had her first leak.  It was after our first time changing the appliance with the new procedure of putting stoma powder on the damaged skin and applying the protective barrier etc.  Operator error.  I think we cut the flange too big for the size other stoma (she's shrinking).  She handled it very well.  Woke up to the leak but laughed, cleaned up and we just tried to do better.  The stinky part is we are running low on supplies so an appliance/bag change 1 day after the last was definitely not on the schedule! 

She also ran a fever of 102. On call surgeon was not concerned with infection 3 weeks out. It broke over night so I am thinking it is one of her infamous inflammatory fevers. She fainted the next day so assuming dehydration from ostomy, fever and Crohns is at play. I tanked her up and she got better. 

She is STILL visiting the restroom the old fashioned way 6-8 times a day and often urgent.  Doesn't seem fair that she had the surgery and is still dealing with the other end.  One time was a pretty sizable amount of stool and blood.  Her old GI says this is not abnormal.  

Insurance denied Rinvoq but her new docs got her into a program where she can get it for 24 months for free.  I guess this is the perk of being at a center with 4000 IBD patients most of whom have failed multiple drugs and needed surgery…the companies are anxious for them to get experience with their drugs.  Plus they run a lot of the clinical trials and are speakers at many conferences so good to get in their good graces.  We only need 6 months for now to get us to scopes and the next big decision.  

She goes back to school Monday.  

Overall we are good, good, good.  She gets to start adding back in fiber foods next week!  So excited!


----------



## Delta_hippo

I’m glad she is doing okay and Sab not playing up too much.
Re the leak, don’t know if you managed to get hold of the banana peel stickers, but I had a horrible overnight leak once and that’s why I started using them for extra reassurance (I do a lot of client facing work or at least did pre covid)
If staying away overnight and anxious then just put a thick towel on the bed, better to feel confident than stay awake anxious.
Sorry to hear she is still needing the lo so much.  Hope that settles soon.
Re the skin problem some evenings I would sit without the bag fully attached just to let the skin gets some fresh air for healing/ respite.  It does depend who you live with and freaks out an unexpected amazon delivery 
For dehydration maybe a little heavily diluted coconut water?
The other thing I wanted to say is not to feel pressure to definitely make decisions in December, my GI said you can wait a year, 2 years and still successfully reconnect, so if things are not clear cut/ new hopeful drug imminent/ a bit more time would make the right decision clearer then it might be possible to defer final answer.
Re the fainting is her blood pressure low generally?  I struggled with that and the advice was always drink more but a psychiatrist friend told me you should also eat salt to push it up (licorice helps too) so I started carrying salty crisps as a snack.
I so wish she didn’t have all this to deal with, she is doing amazingly xx


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## xmdmom

What did her doctor say about fainting? Is her ileostomy output quite high?  Is she losing much fluid per rectum? Did her doc/team recommend an oral rehydration solution or some fluid with electrolytes?

Did her current doc or old doc say how long to expect BMs the old-fashioned way?  I hope not long because of the inconvenience but more importantly, I thought the purpose of the ileostomy was to give her colon/rectum a rest.

Curious, was the fever just one day?

Hoping her return to school goes well. No more fainting please!


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## crohnsinct

Thanks guys!  @Delta_hippo we did get some banana peel stickers in a welcome sample kit from Coloplast but she is currently using a square flange from ConvaTec so they don't really work with that. However, the WOC nurse gave us some sort of tape that I think will work.  The leak started from the stoma though and tunneled through the flange so I really think not much we could have doe about that except cut the hole a little more snug as I think it was too big and gave the effluent some place to sit and work its way through the adhesive.  Does that make sense?  I cut it more snug the next time and it stayed for 3 days.  Today I was shocked to see that her stoma shrunk even more so sized it down yet again!  The skin around the stoma is still pretty slow to heal.  She still has something that looks like a moat around the stoma.  

Good point on not feeling rushed to make a decision in December.  I mean if the scope shows Mayo score 3 then clearly the Rinvoq isn't working and we need to either move to more permanent surgery or try a new drug if one comes available.  I doubt they will let her hang around waiting for another drug though.  Not if damage is still present.  

As for the fainting, yes she has low blood pressure normally.  Has been a fainter before.  It always coincides with her Crohn's acting up more than usual so likely dehydration.  Years ago she was sent to a cardiologist (when her original GI didn't want to admit that she was inflamed) and he said just eat more salt.  So between that and the ileostomy causing dehydration issues she has really upped the salt intake and tried to drink more of the ORS solution.  I think the fever added to the struggle this time. 

@xmdmom we haven't told her new GI about the fainting or the fever.  The fever broke the same night so I really think it was one of her weird inflammatory fevers.  Yes, the team gave us a list of ORS formulas to try to mix ourselves but also told us Drip Drop or Liquid IV would work but since she can't process artificial sweeteners we have to mix our own.  The winner so far has been 4 cups of water, 3/4 tsp of salt, 2 tablespoons of sugar and a grape Kool Aid packet.  

Her ileostomy is a low to medium output and not terribly liquid.  Per rectum she is loosing mush…maybe a 1.5 cups per day so not terrible but certainly not what we expected! Especially the frequency and urgency.   The rest of the time it is just blood and mucus.  No one has said anything about how long it would continue but she has an appointment with the surgeon 6/5 virtually and I will make her ask if it keeps up.  Maybe she is a little lucky though because now at least she will be able to tell if Rinvoq works since she is still having symptoms.  I totally agree with you though because if it keeps up what was the point of the surgery?!  Seems like a lot of aggravation for little return.


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## Maya142

I really think she should tell the surgeon or her GI about the fever and the BMs. Poor kiddo - this is just unfair!! She went through with this huge surgery - she deserves some relief!


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## xmdmom

And the fainting.  I know it's sometimes a hard call to know when to tell the doctor something's going on.  I think it's best to keep the doctor/team informed.  It helps them get a truer picture of what's going on.  It sounds like you and she are used to the fainting but fainting is not nothing!
It's great the fever  was only 1 time and you may be right about the cause but why not share it with the doctor?
Wishing her smooth sailing at school!


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## crohnsinct

I will see if I can convince her to message him just at least so he can get used to her goings on.  I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes.  I think she doesn't update them because she is afraid of being called in, sent to E.R. etc.  She has developed this don't ask don't tell philosophy with regard to her health.


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## Stressedmom

crohnsinct said:


> I will see if I can convince her to message him just at least so he can get used to her goings on.  I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes.  I think she doesn't update them because she is afraid of being called in, sent to E.R. etc.  She has developed this don't ask don't tell philosophy with regard to her health.


I understand her mentality wanting to avoid the ordeal even if it's needed. I hope you can convince her. It's good that you are coaching her to be her own advocate. Please keep us posted.


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## crohnsinct

crohnsinct said:


> She has developed this don't ask don't tell philosophy with regard to her health.


LOL!  So I ask!  Over and over! So it's her own fault! haha.  

Putting this here because we are talking about Upadacitinib on this thread and there isn't a lot of info but interesting none the less.



			Upadacitinib (RINVOQ®) Achieved Clinical Remission and Endoscopic Response at One Year in Phase 3 Maintenance Study in Patients with Crohn's Disease | AbbVie News Center


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## crohnsinct

So O went public with her ostomy.  Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all!  I guess she is handling it well then huh? We will see what happens when she returns to real life.


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## Jo-mom

That is so great!  Way to go O!


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## Stressedmom

crohnsinct said:


> So O went public with her ostomy.  Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all!  I guess she is handling it well then huh? We will see what happens when she returns to real life.


She's awesome just like her mother! Think of all the other young people in her position she is helping by doing this! I applaud her! Standing ovation for O!


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## crohnsinct

My little ostomate has left the nest!  She is on her way back to school!  

When going through airport security they pulled her aside because of her bag.  They had to pat her down and test her hands.  It was fine, it just took her by surprise and she wasn’t prepared for it.  

She had to urgently hop off the security line twice to use the restroom and is starting to get peeved with this nonsense.  Hopefully the Rinvoq helps with this but I am going to once again suggest she mention it to docs.  Her manometry test results were definitely not normal so I am thinking that has a lot to do with it and wondering if there is some sort of PT etc that she could do or maybe just rectal topicals.  

I can’t believe it’s been 6 years and over 12 semesters and we have never dropped her off at the airport in remission. But she does it!  Just proof Crohn’s and UC don’t always get to win!


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## Maya142

They've never pulled O out because of her tube? M gets pulled out all the time, though it's usually for her J tube she says. Don't know why because they're both buttons. Also, if she needs to carry specific liquids on the plane (liquid meds, liquid ORS solution) she can do so with a note from the doctor. M takes all liquid meds onboard and sometimes milk if she needs to eat before having a med. They usually have her taste it. Oddly enough, they will allow milk but not water - I suppose because you can buy water after security.

I would definitely tell her GI that she has diarrhea and urgency.

SO incredibly proud of her for the way she has handled this surgery!! I hope she is able to really enjoy school now!!


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## crohnsinct

Hey y'all!  I am always so full of bad news, I thought I would post the good.  

O has had great luck with her ostomy. No leaksShe has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side. 

She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest.  Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.  

She told her old GI she is fully transferring her care to the new hospital.


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## Stressedmom

crohnsinct said:


> Hey y'all!  I am always so full of bad news, I thought I would post the good.
> 
> O has had great luck with her ostomy. No leaksShe has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.
> 
> She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest.  Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.
> 
> She told her old GI she is fully transferring her care to the new hospital.


Thanks for sharing the good news! It made me smile. O is awesome! I love how secure she is with herself. (Product of good parenting of course!) Glad she is gaining weight and doing well!


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## Maya142

> But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.


Love the fashion updates! Ironically, M purchased a one-piece swim suit with a cut-out for the opposite reason - so she can reach her J tube without taking her swimsuit off! M says whoever designed these clearly had stomas in mind .
So glad to hear O is doing well. REALLY glad to hear she is switching to the new GI. I don't remember if I mentioned this (we weren't told this till M had been on Rinvoq for months!) but Rinvoq is light sensitive so you can't put it in a pill box.


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## crohnsinct

Oh wow @Maya142 !  No one told us that!  And I can 1000% guarantee that O did NOT read the prescribing information pamphlet that likely came with it.  Details!  I am super surprised that the Rinvoq ambassador didn't tell us that.  She LOVES her job and can talk Rinvoq all day.


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## Maya142

If it makes you feel better, we spent well over 6 months putting Rinvoq in a pillbox (a colored one, though it was still translucent) and kept the pillbox in a drawer. We didn't know till M actually listened to one of the long boring calls from the Rinvoq ambassador. She says she won't ever make that mistake again of not being thorough but she think they should hand out a big notecard saying "LIGHT SENSITIVE, do not remove from bottle" with the Rinvoq bottle.
She was especially annoyed because she was on the phone for 30 minutes before the rep mentioned that!


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## crohnsinct

Hey guys!    

Nothing much to report except O is gaining weight nicely and doing rather well. She is still on the 45mg loading dose of Rinvoq. At 8 weeks (mid July'ish) she will get labs and go down to maintenance dose of 30mg.

Her bleeding has pretty much stopped and she is only having to go twice from her bottom, mostly mucus.

She has recently had issues with leaks.  We THINK it is because her stoma shrunk a little more so she starting cutting the flange opening smaller because that is when it started.  The leaks led to a breakdown of the skin around the stoma.  So she went back up in size of the flange opening and is back to using her stoma powder and barrier ring to help fill in the crevice left by the broken down skin.  

Another theory is that her output has been somewhat thick so it isn't falling into the bag as freely, so when she sleeps it gathers around the ring/flange and the output could be eroding the seal.  

So she went back up in opening size and is trying to thin output and so far she has 2 days with the same bag and no leaks  

She is just so anxious to be able to settle on a stoma size so she can order precut wafers which will make bag changes so much faster!  

Sorry if TMI - just putting this here in case any other ostomates follow O's journey.


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## my little penguin

So proud of O
Yippee on the weight gain


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## Stressedmom

Glad to hear about the weight gain. I am learning a lot from this thread.


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## Delta_hippo

Glad she is gaining weight and sounds like things are settling.  Wondering if it’s worth trying to sleep on her side so gravity helps output down into bag not on top?  Also the underwear I was banging on about ages ago kind of holds up the bag so puts less pressure on the bag sticking to skin and the weight of the bag pulling on it if that makes sense.  Powder and barriers help.  I presume they have given her the spray to dissolve the glue when changing bag to avoid extra stress to the skin?  My only other slightly gross tip is to let the skin breathe when changing bag by just not attaching the new bag straight away and just watching tv or something with a disposal bag to collect output.  You need to live alone or with someone very understanding.  And not answer the door


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## polly13

Well done O on weight gain


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## Jo-mom

How's O?  It's been another month gone by.  Hope all is well.


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## crohnsinct

Hey y'all.  Thanks for thinking of us @Jo-mom.  

Things are pretty good.  O continues to gain weight and is up to 125 now!  She feels great and went for a 4.5 mile walk the other day.  A task she never could have attempted pre ostomy.  

She is still struggling with leaks and might have found an ostomy paste that helps.  Once we have more data, I will post about it here.  It is hard for her to figure things out without an ostomy nurse nearby but she is trying lots of different techniques, products etc.  

Her most recent labs were all over the place. Anemic but normal CRP for the first time in a long time. Her vitamin D was very low and her WBC's returned as a critical value which prompted the lab to call the doc's office as soon as it resulted. O's GI was on vacation and covering doc said no need to do anything. When the report posted it listed the value as critical/life threatening and documented the covering doc's orders, which was interesting to say the least. I figure it is the Rinvoq doing too good a job at suppressing her immune system. The lab did a smear and lots of alarms going off. O's GI returned today and he requested she supplement again with 5,000 IU's of vitamin D and retest CBC now that she is on the maintenance dose of Rinvoq. So that test should be done in the next few days. 

In the good column is that her cholesterol is nice and normal and that is one of the things they need to watch closely with Rinvoq as it does tend to raise lipids. 

She is thinking about asking to postpone scopes until May, after her internship.  Which must mean she doesn't mind the ostomy too much.  She said she would rather keep her ostomy than have to recover from major surgery during her internship.  I reminded her the surgery might to as major as she thinks (maybe just a reversal) to which she reminded me that all the disease might return once continuity is restored.  We will see how her GI feels about this request.  I can't imagine he issuing to want to pump another 6 months worth of this med into her if he doesn't even know if it is working.

She doesn't have anymore bleeding and very little output the old fashioned way.  She did forget her med one night and the next day or two experienced quite a little flare so she thinks the med is doing something at least.  

Meeting with GI in September to decide next steps so stay tuned.


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## xmdmom

Thanks for the update. The weight gain, 4 mile walk, “feeling great”,normal CRP, no more bleeding all sound really good.

Sorry she is dealing with leaks. That can’t be any fun. Could a video visit w an ostomy nurse be arranged? Would it be helpful? Obviously not optimal. Are there visiting nurses who deal w ostomies in her area or a nurse at the local gi office?

I hope her wbc return to normal on the maintenance dose. I read in the prescribing info that interruption of this medication is recommended for absolute neutrophil count less than 1000 or absolute lymphocyte count less than 500. ( See section 5.8 herehttps://www.rxabbvie.com/pdf/rinvoq_pi.pdf#page11)   I’m curious to know what her values were —labs vary in terms of what they call their critical values.

Wishing her stability, good health and no leaks!!


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## Stressedmom

Glad she is feeling great, can enjoy long walks and she has gained weight. I wish she didn't have to deal with the other stuff.


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## crohnsinct

WBC is 2.4
Abs Neutrophil 1,200
Abs lymphocytes 900 

Lots of weird stuff on the morphology but just sitting tight and figuring that the lower dose will straighten it all out.  She actually took an unintended three day break right after that test due to an insurance snafu and not being able to get the med on time so her numbers should bounce back nicely. 

Oddly enough for such a bustling little town the closest ostomy nurse is 2 hours away and well you know college kids…life is too important to actually tend to such mundane issues as their health.


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## Maya142

That's a low WBC! When you say maintenance dose, do you mean 30 mg? I'm guessing she has been on 45 mg of Rinvoq?

M was on 30 mg of Rinvoq + 15 mg of MTX. Her WBC was thoroughly normal - it was 5.2 once and that was the lowest it was. Hers tends to be around the upper limit of normal (8-10) and her CRP is also always high - although it did become normal on 30 mg of Rinvoq, but only once. 

Her Abs Neutrophil count did drop from 9,200 (right before starting 30 mg Rinvoq) to 3,200 while on 30 mg of Rinvoq, but it did stay in the normal range. Abs Lymphocytes dropped to 2,200 from 4,300.

I hope her numbers will stabilize on the lower dose of Rinvoq, as M's did. So glad to hear she is feeling better!!


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## crohnsinct

@Maya142 yes, maintenance dose is 30mg for UC and that is what she is on and yes, she was on 45 for 8 weeks.  

UPDATE: 

O got her repeat labs done and WBC solidly in the normal range so all is well. 

Her H&H are improved also ut not buying that yet as I think she was very dehydrated and they are artificially raised but since those weren't the critical values, I will leave that alone for now. 

She is having massive leak issues, called me crying (which we all know O doesn't do), threatening to shove her ileum back in her body herself. She is over the ostomy and in a very bad mood. It was 3 a.m. and she is away visiting a friend so I think she was tired and just super disappointed. 

She is coming home on Sunday and staying for a week.  She asked me to write to her old GI asking if he could gether in to a WOC nurse which gave me serious PTSD.  The thought of letting that man anywhere near back in gives me hives but she does need to be seen.  She has been trying to fix this thing herself for too long.


----------



## GirlwiththeCurl

That sounds miserable. Are home health visits or telemedicine consults possible? I guess I'm just wondering if the new doc could order her something like that so you don't have to go back to the old one.


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## my little penguin

Yes and can’t the adult side of the hospital have an ostomy nurse …
I would call them before reaching out to old Gi 
There have to be plenty of ostomy folks in your area.


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## Maya142

Poor O! I definitely think she should see a wound care nurse. Even if she does see one at home, it makes sense to set something up with the one near school. I know it's a 2 hour drive, but she's at school much more than she's at home, right? That way she can try things out and if they don't work, she can always go back to the nurse to try something else, relatively easily. A 2 hour drive beats a long flight home!

Seeing someone from adult wound care at Stanford also makes sense to me. Does she have a PCP at Stanford? If she does, I bet they could refer her.

Also really pleased to hear her WBC went up when she decreased her Rinvoq! There was a recent study that found that Xeljanz does increase the risk of infections more than anti-TNFs, and so the FDA has mandated that all the JAK inhibitors have to have a warning stating that they may cause serious infections and you have to have tried an anti-TNF before you can try a JAK inhibitor. 

Hope the 30 mg dose works well for her - fingers crossed!


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## Delta_hippo

I’m so sorry to hear about the leaks and hope she can access an ostomy nurse to figure it out.  How long is she leaving it between bag changes?  I would look at every other day maybe if struggling.  I did have a leak in the early days - well a couple- the banana peel stickers sorted it for me but I know she’s tried already so not sure what else to suggest.  There was an ostomy product I was looking into if I hadn’t got reversed - kind of used a belt round the waist instead of sticking on - mainly because my skin hated the bag - don’t know if worth asking the nurse about.  She does need expert advice.  The problem with leaks (for me) was once it’s happened you never know when it might happen again so you go through your day and maybe in a client facing role never knowing when you might glance down and there is liquid poo everywhere.  So I really feel for her.  My big leak was at night and I couldn’t sleep for ages as I was paranoid it would happen again/ solved that by putting a thick towel on the mattress to sleep on so if it did could just throw in the wash.
I think try and get her in with an ostomy nurse rather than hold out for reversal - when I got reversed the consultant said I should get a few years before any more problems and the Crohn’s was back and rampaging within six months.  If she can find a way to cope with the stoma then more chance of new research/ drugs etc.  Is part of the problem that it’s too liquid? Just wondering about eating oats or similar to thicken it (sorry if TMI).
Wow.  I feel like screaming on her behalf.  At least the weight gain is a positive and hopeful sign xx


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## crohnsinct

Let's see if I can address each thing or if my age is getting the better of me and I forget a bunch 

- Ostomy nurse by school is a two hour drive BUT crosses time zone also so she has to leave 3 hours prior to the appointment AND she is so busy between class and her clinical fieldwork it really is difficult for her to get to appointments. 
- her surgeon has a whole staff of WOC nurses and they said they will do a virtual visit but it is very hard because they have to really see the stoma and skin around it to really figure out where the problem is. 

-she typically changes her bag every 3rd day because our insurance only covers 10 bags a month so that's 2 a week with 2 for emergency changes. P.S. we have paid out of pocket for many bags because of these leak problems and the bags cost about $10each! 

- changing more frequently won't fix the problem necessarily because the leaks are happening shortly after the bag change. One was 6-7 hours after and the other only 3 hours later. There is definitely something going on with her skin or possibly her stoma shrunk ands needs to cut the flange opening smaller. 

- leaks are always in the same spot so my guess is she has damaged skin there that is keeping the bag from properly adhering to her skin. 

- she has tried stoma paste and rings that are supposed to fill in any divers etc in the skin.  The paste seemed to work well until it didn't.  

I would say maybe she isn't cleaning the glue off well enough and that is keeping the new bags from sticking well but it is always he same spot.  It has to be something about that spot.  

She did end up reaching out to the pediatric GI and he said their ostomy nurse left the hospital and he didn't know where to send her. This is EXACTLY why I wanted her to have the surgery at an experienced adult hospital. I am so so glad left. He and his nurse did some research and calling around and the surgery NP thinks she can help her, so she has an appointment with her on Wednesday. Meanwhile, No leaks since Friday a.m. so fingers crossed. But like @Delta_hippo said, even when you are not getting leaks, you are waiting for the next time and it is super stressful. She has even started to turn down opportunities to go because "what if". So we really have to get this thing fixed. 

@Delta_hippo Your reference to the reversal was very interesting.  Her pediatric GI told her to be prepared and that even if she is healed on Rinvoq and with the temporary diversion that when they reconnect the Rinvoq might not be able to hold her.  Is this what happened to you?  That the temporary diversion fixed things but then after reconnect and the return of the fecal stream things went south? I wonder if waiting until there are other drugs approved might be a better time to attempt the reconnect.  Or maybe it will take a while for the reconnect to cause trouble and by that time another drug will be approved?

@Maya142 yes!  The infection risk is real!  They really hammered that home with her when they put her on Tofa and the prescribing literature and FDA approval all states only use Tofa after failure of the other biologics.  Rinvoq's warnings are even scarier.  Interestingly, after the missed three days and the drop in dose her psoriasis started coming back, so it seems maybe she needs the 45 mg dose for her psoriasis and that makes me wonder about her Crohns.


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## Delta_hippo

So when removing a bag they should have given her a spray that melts all the glue but having a bath also helps to get the area totally clean and glue free.  Wondering if an ostomy belt would help (see attached) I am thinking like you is there something about that little bit of skin


			https://badgut.org/information-centre/ostomies/ostomy-belts/
		

Personally I would drive a six hour round trip to try and sort leaks but appreciate it is another day out of her schedule.  She really wants to see someone who is very experienced with stomas.
My ileostomy was an emergency fix after I suddenly got very ill and one of the consultants correctly guessed a perforation - surgeon had hoped to do a resection but when I woke up with a bag he said I had been so unwell he feared the resection wouldn’t hold and would come apart inside which he said is a very bad situation.  Firstly they had discovered sepsis when they opened me up and second protein level in my blood was too low for healing.  So it was a temp fix to allow me to get well enough for the resection to be completed.  But, the surgeon who did the reversal in November said no sign of any Crohn’s and by the first stool/ blood monitoring the next Easter things were not looking good and a subsequent colonoscopy (May I think so six months later) they saw patches of Crohn’s in 4 different places at which point they switched from hoping a heavy course of prednisone would settle things down to azathioprine and hence began the merry go round of immunosuppressants.  So the depressing point being, healthy pink gut can quickly go wrong once sewn back together. Although I was on no drugs at the time as I was in denial about having Crohn’s having been perfectly healthy until the year before- since discovered there is such a thing as silent Crohn’s and I did have warning signs but coincided with pregnancy so all dismissed as hormonal weirdness.
Reversal is a big call.  There is something about knowing you can that helps cope with the stoma I think although mine was better behaved than poor O’s.


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## crohnsinct

Yeah, she uses the spray and wipes.  Then she washes that whole area around the stoma with a wet paper towel and soap.  Rinses it with a few wet paper towels, then dabs dry the area.  Lets the whole area dry open for another 5 or so minutes and then applies the bag.  She is coming home tonight so the next bag change, I will get a good look at Sabrina and will be in a better position to comment but the last pic she sent me still had that broken down skin at the exact place she is getting leaks.  And when I say leaks they aren't little bits of stool leaking out.  They are more like blow outs.  Oh yeah, you had asked…her output is pretty thick.  So I am also guessing that maybe it isn't dropping down into the bag nicely but rather sitting at the top thereby giving it an opportunity to eat away at the seal?  

I was going to ask if you had been on meds.  I guess that is a plus for O as she is on meds so hopefully any reversal would stand a better chance but we are talking O here so not getting our hopes up.  If Tofa couldn't hold her. Rinvoq has an uphill battle but maybe because it is more selective.    

Gee!  I am so sorry you had to go through all that and so soon after having a baby.  It must have been really rough.


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## Maya142

We were told (by M's GI and 3 rheumatologists/researchers) that Rinvoq is actually safer (because it's more selective) and works better than Tofacitinib. So I'm hoping it will work for O. 
Do you know if they use 45 mg of Rinvoq indefinitely for UC? We were told it was only the loading dose and if it dropped her WBC so low, it's probably not a good long-term option for her, is it? I know Skyrizi has been approved for Crohn's at a much higher dose than for psoriasis - perhaps that's an option after the reversal? I know IL-23 inhibitors work like magic for psoriasis but I don't know much about how well the work for Crohn's, though they're certainly less immunosuppressive than Rinvoq and so safer.
A 6 hour round trip is LONG in grad school but perhaps she'd only have to do it once or twice to find the right products? Then it's worth it - better than not going out because she is afraid her stoma will leak.


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## crohnsinct

Her new GI said the "theory" is that RInvoq is safer because it is more selective but that it is too new to actually say it is and that time will tell.  

45 mg is the UC loading dose.  After 8 weeks you drop down to 30mg maintenance.  It worked wonders for her psoriasis but then it all came back.  I am not sure if it came back after the three day break and then the 30mg maintenance dosing or before.  My guess is after the break and then maintenance.  

She has forgotten a dose twice and she says that the next day or two she has increased discharge from her bottom and bleeding so my guess is that means it is working.  Although I would hope one night wouldn't make symptoms return but maybe she just needs more time on the drug for it to heal her more.  She was in such bad shape that I am sure it is going to need more than 2 months to heal her to the point that a missed dose won't do much.  

We talked about the IL23's and er GI said he doesn't hold out much hope for it to heal her colon but we were specifically talking about Stelara and I believe that is an IL 23 and IL 12 so maybe a more selective IL inhibitor will be better?  I also read a paper that said that for some reason using Stelara after anti tif failure actually made Stelara work better than if you tried it first.  Something about the anti tif's priming your system for Stelara.  It was interesting and I wonder if RInvoq doesn't work if her GI would consider Stelara then.  I know before Rinvoq was approved and we just had Stelara, he said no to Stelara and wanted her to have the colectomy.  But now with this new info who knows.  I feel like we have come so far and tried so many things that at this point we mine as well try them all.  

This is all getting way ahead though.  First step is get her to scopes in December and see what they show and take it from there.


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## Maya142

If I’m remembering correctly, for skin disease and arthritis, the IL-23 inhibitors seem to work better than Stelara. But they do take a long time to work - M tried one and after 6 weeks it was doing nothing and she was in so much pain and had such swollen joints that she switched to a different drug - she did not think she could manage like that for 6 months till it kicked in.
But for Crohn’s, I know Skyrizi has quite an impressive loading dose - three 600 mg infusions and then 360 mg injections for maintenance every 8 weeks. In contrast, the arthritis dosing is two 150 mg shots 4 weeks apart for the loading dose and then 150 mg every 12 weeks. So perhaps it would work faster for Crohn’s.


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## crohnsinct

Mystery solved!  

O saw an ostomy nurse at her old pediatric hospital today and one look and the nurse knew exactly what the problem is.  It seems her stoma has shrunk quite a bit and actually so much so that it is almost flush with her skin.  In these cases you need a convex flange and a belt.  The belt tightens the flange against the skin and there is a little rim type thing that pushes down on the skin around the stoma and this helps the stoma protrude so the stool can actually drop down into the bag and not sit up top eating away at the seal.  

Her skin around the stoma was broken down quite a bit but the nurse said not as bad as she would expect given how flat her stoma is.  Also, she said she is shocked that O is getting the wear time she is given the shape of her stoma.  We are hoping the convex flange will get the stool dropping down into the bag and this will allow her skin to heal.  

So she gave her a couple of convex flanges and belt to try.  O doesn't like the belt but she dislikes leaks a lot more!  

The real bummer is she just got her new order of the old flat flanges so she has to wait a month to get a supply of the convex flanges.  She is going to call all the companies and request samples to help her get through the next month.  

O looks great.  Like a totally different person.  However, she did go to the bathroom a lot today and passed stool "the old fashioned way" and she said there was quite a bit of blood.  She says she doesn't think she missed a dose.  I am wondering if the bits of stool slipping past the stoma are aggravated the colon and making it bleed which doesn't bode well for reconnection but we still have 4 months and anything can happen.


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## crohnsinct

*stoma retraction* – where the stoma sinks below the level of the skin after the initial swelling goes down, which can lead to leakages because the colostomy bag does not form a good seal; different types of pouches and appliances can help, although further surgery may sometimes be needed


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## xmdmom

Glad she was able to see an ostomy nurse who could see what the problem was and knew what to do.  Is there any way she could exchange her recent shipment of old flanges for the correct ones?


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## crohnsinct

No. Unfortunately once the equipment leaves their warehouse they won’t take anything back.  So annoying because with all the leaks, when we were away at my niece’s wedding she ran out of bags and flanges and I had to find a medical supply company that carried them and was open to the public.  They only carried one kind and of course not a kind she used and they were ridiculously expensive.  I am going to have to try to find someone who Carrie’s this kind and buy her a box of 10 to have as back up.  Idk why the insurance company only pays for 10 a month. Like don’t they know people have leaks?!  That is only a safety net of two a month and O went through that in a day!


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## Maya142

CIC, this is great news!! I really hope it solves the leaking problem. So glad the nurse was able to help so quickly.
Is there something like the Oley foundation, which has a feeding tube equipment exchange, for stoma equipment? People with new feeding tube supplies they no longer need (formula, bags, extensions etc) send them to people who do need extras.

In terms of taking a daily medication, how about an old fashioned pillbox? She's only on one med, right, so you could get a small one that even fits in bag or backpack. There are also apps where you can check off when you've taken a dose. Missing a dose of Rinvoq also caused symptoms for M. I hope her colon with heal with time - like you said, she has 4 months!

In terms of buying extras, I've had luck with Health Products For You - it's a website. We have to buy M's J tubes because for reasons I don't understand, insurance will only pay for her G tubes. It'll probably be expensive but hopefully you can find something.


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## crohnsinct

Maya142 said:


> Is there something like the Oley foundation, which has a feeding tube equipment exchange, for stoma equipment? People with new feeding tube supplies they no longer need (formula, bags, extensions etc) send them to people who do need extras.


I haven't found anything but will ask around on the ostomy boards.  Maybe that is a new project for me…to start a supply closet etc.  

Interesting you should mention Oley because I have a garage full of Peptamen and listed it on Oley and called our pediatric hospital and no takers.  It makes me sad every time I walk into my garage ands it sitting there.  It is going to expire soon and it kills me because I just know that someone out there needs it. 

As for remembering meds we tried the pill box but you actually have to remember to look at it for it to work  

She has gotten sooooo much better about her meds.  She rarely misses a dose anymore except for like I said when we hot insurance snafus like we are about to hit now.  

We tried alarms and those don't work for her because she just snoozes them or says, "oh, yeah, I have to take my meds" turns then off and then forgets.  

Her newest method is to put it in reminders on her phone.  This works because the notification pops up on her phone and won't go away until she completes it and she HATES notifications on her Home Screen.  This way if she isn't home the alarm doesn't keep going off and she see's it while checking her phone…ya know for important things like tic Tok, instagram etc…before bed.


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## xmdmom

We had the same experience with the phone alarm being ignored. The notifications idea is a really good one I’m going to suggest to my son. Thanks!


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## crohnsinct

OK.  I don't expect anyone to be able to help with this but thought I would document it as part of O's journey in case those who follow ever have this happen.   

I researched the whole poopng the way nature intended thing and every single site I looked at said there was no way that you could actually pass stool after an ileostomy even a temporary loop ileostomy.  They all say you could get a build up of mucus and that sometimes it is brown and can look like stool but it is mucus.  So, I assume that is what is going on.  

However, today again, we were out and about and the poor thing was urgently needing a bathroom.  We were at a parkland not a restroom in site.  It was one of those panic and run moments that were such a part of our old lives.  She also had a few of these on Wednesday.  I had a friend come pick her p and drive her to the nearest grocery store. 

Discussing it at home I explain to her what I read and she said, "No Way!  This is actual poop….like remember my flat ribbons of poop?  that's what this is!"  

No clue what to make of this.  I suggested she write to the surgeon but she says it has only been two days and that we should wait to see if it happens a third time.  I had earlier suggested that she write to the surgeon and just let him know about the flat stoma thing.  Not that I am concerned about it but just in case down the road it causes problems, I don't anthem to be surprised. But now with this development, I just don't know what to think.


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## my little penguin

Have ileostomy, stool going other way HELP - The Colon Club
					

Colon cancer (colorectal cancer) support forum. Please feel free to read, share your thoughts, your stories and connect with others!



					coloncancersupport.colonclub.com
				



Discussed here 
Explained very well 
If you scroll down in the discussion on “temporary ileostomy “
How overflow manages to get in the second hole that is resting which is which she sees it occasionally


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## crohnsinct

Thanks @my little penguin !  I read that and it helps and reinforces what I thought was happening.  A lot of it references "mucus" poops and we are fine with that and the surgeon told us to expect that but she swears this is an actual BM and some posts in that thread say it can happen.  Ironically, when she woke up today her bag was so full of gas it looked like it might pop.  So I am wondering if the pressure from the gas might have forced the stool through the other hole.  Sounds like we have a fun experiment ahead of us!


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## my little penguin

Love experiments
Just make sure she lets the surgeon know as well.


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## Maya142

She can vent her G tube to get rid of the gas - that might help somewhat. There are lots of videos on how to do it. M has a drainage bag and occasionally it will truly fill up with gas when she attaches it to her G tube and presses on her stomach. You can also use a large syringe: https://www.feedingtubeawareness.org/gas-bloat/


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## Maya142

I found this on Medscape while trying to understand that thread MLP posted: 





> A loop stoma is created by maturing a segment of bowel over a rod or tube without completely dividing the bowel. Loop stomas provide excellent decompression and have the advantage of simple closure without the need for a separate laparotomy in most cases. However, loop stomas are not completely diverting, because proximal contents can spill over into the distal limb. Therefore, they should be used with caution in patients in whom stool in the distal bowel may be problematic.


It sounds like this does happen but I do think she needs to tell her surgeon.


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## crohnsinct

We thought about venting the ostomy bag if she wakes in the middle of the night but never thought about doing it through her g tube before the gas even gets to the bowel. I am going to tell her to try that before going to bed at night and then maybe venting the ostomy bag if she wakes in the middle of the night.  

You two are champion gogglers!  How the heck did you find these references.  I swear I looked everywhere and found nothing about stool slipping through with a loop ileostomy although like I said it was always my theory that this happened because it is logical if you think about the way the surgery is done and the anatomy.  

So she has also had a few days with more blood so I am wondering if the increase in blood is because stool even a small amount is going through her colon?  

I am also wondering if the shrinking and flat stoma has anything to do with why she is seeing the increase in stool per rectum.  

Things that make you say hmm.


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## Maya142

LOL here is the full article but really that paragraph is the most relevant: https://emedicine.medscape.com/article/939455-treatment#d10

The flat ribbon poops also concern me because that means that her rectum is still inflamed. And of course, the blood supports that. I wonder if she should tell her GI as well as her surgeon?

The other thing I found while googling is that there are products you can use without a belt even if your stoma is flush with the skin. I know O wasn't thrilled about the belt, so I wonder if it's possible to get samples of those: https://www.hollister.com/-/media/f...using-convexity-care-tips_na_923066-1217.ashx

I would definitely vent the G-tube before bed. Could she vent her ostomy bag before bed too? I didn't even know you could vent from there! Perhaps if she does both places, there will be less gas in her gut.


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## asadmom

Delta_hippo said:


> So when removing a bag they should have given her a spray that melts all the glue but having a bath also helps to get the area totally clean and glue free.  Wondering if an ostomy belt would help (see attached) I am thinking like you is there something about that little bit of skin
> 
> 
> https://badgut.org/information-centre/ostomies/ostomy-belts/
> 
> 
> Personally I would drive a six hour round trip to try and sort leaks but appreciate it is another day out of her schedule.  She really wants to see someone who is very experienced with stomas.
> My ileostomy was an emergency fix after I suddenly got very ill and one of the consultants correctly guessed a perforation - surgeon had hoped to do a resection but when I woke up with a bag he said I had been so unwell he feared the resection wouldn’t hold and would come apart inside which he said is a very bad situation.  Firstly they had discovered sepsis when they opened me up and second protein level in my blood was too low for healing.  So it was a temp fix to allow me to get well enough for the resection to be completed.  But, the surgeon who did the reversal in November said no sign of any Crohn’s and by the first stool/ blood monitoring the next Easter things were not looking good and a subsequent colonoscopy (May I think so six months later) they saw patches of Crohn’s in 4 different places at which point they switched from hoping a heavy course of prednisone would settle things down to azathioprine and hence began the merry go round of immunosuppressants.  So the depressing point being, healthy pink gut can quickly go wrong once sewn back together. Although I was on no drugs at the time as I was in denial about having Crohn’s having been perfectly healthy until the year before- since discovered there is such a thing as silent Crohn’s and I did have warning signs but coincided with pregnancy so all dismissed as hormonal weirdness.
> Reversal is a big call.  There is something about knowing you can that helps cope with the stoma I think although mine was better behaved than poor O’s.


What is silent Crohn's?


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## crohnsinct

Crohn's that doesn't cause any symptoms so you don't know you have it.  There are usually symptoms but many Crohn's symptoms can be explained away and so you don't seek a GI until it is a full blown flare.  If you are already diagnosed and the GI is checking your labs, fecal cal etc, silent Crohn's usually isn't an issue.


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## crohnsinct

Hi guys!  Sorry we have been away for so long.  Dealing with a lot of non Crohn's issues but also enjoying some time with Crohn's not dominating every day of our life.  Breaks are good!  

O continues to do really well. She has now gained 14 pounds from her pre surgery weight and 22 from her all time low. 

She had another bout of leaks which were really discouraging but we got those sorted out. Seems it was a matter of cutting the flange a little too big. Sabrina is like the "mood" stoma. She gets big and shrinks constantly. Poor O hasn't been able to take advantage of the handy pre cut flanges yet. 

She was supposed to have her scopes in December to assess if the diversion and or Rinvoq have healed her colon enough to attempt a reversal. However, she starts her internship in January and she is concerned that once reconnected the Crohn's will return and the cycle of admits will interfere with her completing her program on time. She asked her GI to postpone the scopes until May and he agreed. One would think that this means she doesn't mind the bag so much but she is very much looking forward to the prospect of a reversal. However, she is not yet sold on the prospect of a j-pouch so if scope results aren't great then we will have quite lengthy discussions with surgeon and GI. 

OH!  AND!  She hasn't used her g tube since surgery so she asked the GI if she can have it taken out.  He was a tad concerned about it but in the end approved it saying that if her nutritional status took a dive due to disease activity they wouldn't wait as long this time before going in and taking out the colon.  He made sure she understood she is on a short leash and she was fine with it.  The only other hitch is pre surgery they want her to up her protein as it provides better outcomes so she will have to drink 3-4 shakes a day for 2 weeks prior to surgery now that she won't have her g tube…again, she was fine with it.  

Rinvoq is really screwing with her WBC's and she is still getting very low and critically low values but only had one really bad viral thing.  Cholesterol is elevated again.  We are watching both and will probably decide in December if we are going to move on any of these issues.  

Also still a bit anemic which is weird because no visible blood per rectum in a while.  We are also watching that and likely moving on that in December.


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## Maya142

Does she know that the G tube scar will kind of look like a belly button? M wasn't pleased about that. It has to heal from the inside out, so typically they just remove it and if it hasn't been in too long, it closes by itself. But if it doesn't close and is leaking a lot, they sometimes have to surgically close it. M was told she could have a scar revision surgery by a plastic surgeon later, if she wanted the scar(s) (since she has two tubes) to not be so prominent. 


> Rinvoq is really screwing with her WBC's and she is still getting very low and critically low values but only had one really bad viral thing. Cholesterol is elevated again. We are watching both and will probably decide in December if we are going to move on any of these issues.


Remind me, is she on 45 mg now or 30 mg? M didn't have any WBC issues or cholesterol issues on 30 mg. But I remember O having WBC issues on MTX too, that M never had.

So glad she is feeling better and hope scopes look good next May!!


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## crohnsinct

Ummm no, I am pretty sure she has no clue what the scar will look like.  I wonder if that would make her change her mind?  

She is on 30mg.  You are right.  She is very sensitive to drugs and even had low WBC's on Methotrexate and then again on just Remicade.  But at least with Remicade they occasionally came up into range. Not so sure with Rinvoq.


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## Maya142

Maybe have her google g tube scars…She can have a scar revision but that’s another surgery and probably not one insurance covers (it’s not something we’ve investigated since M needs her tubes, so I’m not sure).

Remicade is less immunosuppressive than Rinvoq (at least, that’s what we were told), so that does make sense.


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## Delta_hippo

So glad to hear your news and the weight gain and chance for a break from Crohn’s stress.  If I were O I would be in no rush to reconnect straight away because so much of the Crohn’s research seemed to go on hold with the emergence of the more attention seeking covid, if she reconnects now and struggles there isn’t much on the table to try but give it time and more chance of more options.
When I had my ileostomy the surgeon initially said 3 months and then 3 months later said “we tell patients 3 months when they wake up from unplanned surgery and find themselves with a stoma to stop them freaking out but we much prefer to wait the full 6 months so they are better recovered”. I asked if there was any risk of the disconnected bit of bowel losing tone or becoming weak through disuse or whatever and he said very relaxed about leaving things a couple of years before reconnecting but potentially an issue longer term.  Don’t know how patient specific that advice is and O a lot younger and fitter than me.
The protein thing is important though as low protein levels = more chance of bowel resection coming apart rather than healing together which is a get very poorly very quickly emergency.  So again more unsolicited advice from across the pond, it might be worth her monitoring and upping protein intake generally as well as shakes nearer the time (I assume she’s not still doing the vegan diet?)
But so happy to hear this.  I’ve been hoping she’s been able to just get on with life a bit.  Hope the leaks weren’t too awful and have settled now xx


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## crohnsinct

Hi guys!  Just popping on to say g tube is out and healed up. Definitely looks like a second belly button thanks for the warning @Maya142   it doesn’t seem to bother her in the least.

She finished the didactic part of her program and is coming home for 6 months to do her internship.

I flew out to her to pack up apartment and we are driving home across the country!!! This is something we never could have thought about doing prior to her ostomy. We are actually laughing at the thought of it. We are taking our time and sightseeing andexploring cities along the way…also something we could never have done pre ostomy.

Still dealing with leaks and such but small price to pay for having freedom from Crohn’s and hospitals!


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## Maya142

That’s wonderful!!! Is she warming up to the idea of an ostomy because of the freedom she has or is she still really keen for the reversal surgery?
Glad the tube healed up without any issues! I’m a bit worried about M’s healing (whenever we take them out) because her G tube has been in for 7 years and the J for 6. She will have 3 belly buttons when she gets them out lol.


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## crohnsinct

Yeah @Maya142 endnote to scare you but they told us the longer they are in the more likely they won't close on their own and you will have to go in ad have it surgically closed.  They prepared O for that possibility but hers healed up super fast.  

I told O about revision surgery and she has a faster and cheaper option….Tattoo to camouflage it.  UGH!


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## crohnsinct

Update and lesson for those interested in ostomies: 

O is still doing good. Dealing with leaks but oh well. The blow outs are less so getting better there. 

Tuesday, she woke with lower left abdominal pain and having to go "the old fashioned way". This continued throughout the day and she went 20+ times. She also started bleeding. My chart message to GI and surgeon. 

Met with NP yesterday who was thinking diversion colitis. This is a condition where because stool is not carrying the regular bacteria etc through the colon rectum, theses diverted areas are not being fed. This leads to inflammation and diversion colitis. Apparently 70-100% of people with diversions get it but only a small percentage experience symptoms. The treatment is to reconnect but if you can't then they try short chain fatty acid enemas or mesalamine enemas etc. But people usually do not pass the volume of stool that O was passing. 

She improved with no intervention. Only going about 3 times a day which is still weird for a diverted person but a huge improvement. 

Met with surgeon this a.m. and while initially he wanted imaging he is suggesting we wait and see.  He said this could be a form of reflux.  The stoma has two holes.  One connects to ileum and the other to the colon.  He said sometimes stool works its way into the second hole.  Perhaps she had a bug which would explain the frequency, urgency and volume and it just worked its way into that second hole.  If it keeps happening, we can stitch up the second hole, or do enemas or have a radiologist clean out the area with contrast inserted through the stoma.  But for now we will wait and see what happens.  

Sounds like a good plan to me and definitely a good plan to her because she wasn't willing to try a reconnect at this time.  

I am only left wondering if the fact that she started bleeding as soon as stool was introduced into the colon/rectum is a poor indicator for reconnection success.  But that would be getting way ahead of ourselves.  Just gonna sit and wait until May.


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