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Heard from Doc today

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.
 
^: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!
 
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

Moderator
Staff member
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
 
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

Moderator
Staff member
O is going to murder me :eek:, 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!
 
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

Moderator
Staff member
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.
 
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.
 

Maya142

Moderator
Staff member
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 

Maya142

Moderator
Staff member
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:.
 
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.
 
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.
 
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.
 
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.
 
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.
 

Tesscorm

Moderator
Staff member
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:
 
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.
 
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.
 

Maya142

Moderator
Staff member
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

Moderator
Staff member
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

Moderator
Staff member
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

Moderator
Staff member
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.
 
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.
 
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.
 
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

Moderator
Staff member
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.
 
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!
 
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.
 

Tesscorm

Moderator
Staff member
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! ;)
 
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!
 
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.
 
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!
 
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.
 
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.
 
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.
 
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

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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!
 
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!
 
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.
 
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

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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.
 
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?
 
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

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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

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^^^^ 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
 
^^^ 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.
 

Maya142

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Staff member
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.
 
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.
 
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.
 
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;)
 
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.
 
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