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Heard from Doc today

Maya142

Moderator
Staff member
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...
 
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.
 

Maya142

Moderator
Staff member
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!!!
 

Jmrogers4

Moderator
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)
 
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.
 
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:
 

Jmrogers4

Moderator
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.
 
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.
 
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;)
 

Jmrogers4

Moderator
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.
 
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😂 ).
 
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!
 

Tesscorm

Moderator
Staff member
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:
 
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.
 
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.....
 

Jmrogers4

Moderator
Is it wrong to hope for IBS and new probiotic works and she has a fantastic year. Crossing fingers and toes 🤞🤞 for O.
 

my little penguin

Moderator
Staff member
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
 
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.
 

my little penguin

Moderator
Staff member
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/
 

Maya142

Moderator
Staff member
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.
 
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.
 
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

Moderator
Staff member
Never an MRE
Or pill cam seriously ???
Regardless of numbers
She needs monitored
Crohns inflammation patterns change and shift in kids
That’s 😡
 
Glad you got to see her! I think you should push for a scope and MRE when she next comes home (at Christmas?)
 
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.....
 
I bet he wouldn't need to do the scope himself. E's doctor has never been the one to do hers...
 
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.
 
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.
 
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

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
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.
 
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:
 

Tesscorm

Moderator
Staff member
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. :eek:

Btw, at our hospital, it’s S’s GI who has done his scopes thus far...
 
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.
 

my little penguin

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
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...
 
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.
 
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.
 

Maya142

Moderator
Staff member
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:?
 
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:/
 

Maya142

Moderator
Staff member
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.
 
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...
 
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.
 

Maya142

Moderator
Staff member
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:.
 

my little penguin

Moderator
Staff member
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

Moderator
Staff member
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.
 
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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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!
 

Maya142

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:eek: 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:.
 

Maya142

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Staff member
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:
 

my little penguin

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Staff member
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
 
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.
 

my little penguin

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Staff member
🤯
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
 
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.
 

Maya142

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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.
 

my little penguin

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Staff member
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
 
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.
 

Maya142

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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.
 

Maya142

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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.
 

my little penguin

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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
 
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.
 

Maya142

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Staff member
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:
 
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.
 
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.
 

my little penguin

Moderator
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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 🤯
 
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!
 

my little penguin

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Staff member
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
 
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.
 
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.
 
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.
 

Maya142

Moderator
Staff member
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.
 
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

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Staff member
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:
 
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

Moderator
Staff member
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
 
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

Moderator
Staff member
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

Moderator
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!
 
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;)
 
...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

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Staff member
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!!
 
...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

Moderator
Staff member
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
 
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

Moderator
Staff member
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.
 
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

Moderator
Staff member
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!
 
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?
 
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.
 
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.
 
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