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Struggling and confused mom

Thank you in advance!! I've never posted in a forum so thought I'd give this a try. My 21 year old daughter was diagnosed with Crohn's in January. She has started Remicade and is doing pretty well. My concern is now for my 18 year old daughter. She started with stomach pain and diarrhea in April, but I thought it might be anxiety from a stressful freshman year at college. Long story short, she continued with stomach pain, nausea, diarrhea, occasional rectal pain and intermittent lack of appetite. Has gotten to the point where eating causes increased pain which lasts anywhere from minutes to hours. Colonoscopy showed inflammation in the ileum, but biopsies were normal. Bloodwork was normal. VCE showed aphthous ulcers, but otherwise normal. Her endoscopy biopsies showed Ultra Short Segment Barrett's so she is being treated for that as well. She was in the ER this weekend due to massive diarrhea and stomach pain, dehydration and losing 8 pounds in three days. A CT Scan and ultrasound came back normal. At this point her GI is leaning towards Crohn's even though many tests have come back normal. Has anyone experienced this pattern of tests and symptoms not aligning? The process to a resolution was easy and straightforward with my older daughter. I'm very worried about the younger one and how we get to a definite diagnosis. I would appreciate any thoughts, suggestions, etc. (my apologies for the long post!)
 

my little penguin

Moderator
Staff member
Welcome
So to recap
Colonoscopy - visual inflammation
Capsule showed ulcers
Biopsy pathology - did it show any inflammation(chronic or acute )?
Some times there is patchy inflammation that may be missed by biopsy
Or pathology won’t check the crohns box unless granulomas are found (typically on 30% of the cases )

Any nsaid being taken ?

Ct scan was that woth barium ((cte?)

Any other symptoms - skin rashes ,ulcers pathergy?

Joints ??

More than a few things can mimic crohns so it’s hard to dx and even then a lot of times they question it
Ds was dx at age 7 with crohns
Changed to working dx
Then back to crohns
Then working dx
And now back to crohns
So ......

He is 15
 
Oh no...I'm so sorry it's been back and forth for you!! (Thank you for making sense out of my rambling post :))

Biopsy pathology showed "mild inflammation" "not significant" (I would think any inflammation would be significant)
No nsaid's
CT scan with barium
No other symptoms besides fatigue and joints are fine

Also she started Prednisone on 4/11 at 40mg. Tapering by 10mg every week. Her first time on Budesonide helped the nausea and pain, but her second time did not help and she ended up in the ER.
 

my little penguin

Moderator
Staff member
Not significant depends on who is reading it
Get a second opinion read on the biopsy slides at another hospital
So you have inflammation seen and documented in the intestine (visual and biopsy )
Plus inflammation (ulcers ) seen on the small intestine

Question for the Gi
If it isn’t crohns what is causing that inflammation

As far as pred
Sounds like it was working
Buesonide only reaches certain parts depending. On the version and may not have been enough
Might have been the pred the first time

What is the Gi planning for longer term treatment ??
 

my little penguin

Moderator
Staff member
My kiddo vomited on and off every week before and after dx until he was een
Then once foods were back vomiting again
Even on 6-mp
And mtx
Once on remicade vomiting stopped
But he was mild the whole time 🙄
 
Based on our phone conversation with the GI last night his thoughts are...

The ER doc gave her dicyclomine 10mg (4-5 times/day as needed) which she took once on Tues and once on Wed. GI told her to not take any more dicyclomine and only take the prednisone. If the prednisone stops her symptoms then he believes it is Crohn's. If she gets worse and/or needs dicyclomine to manage the pain then he thinks it might be more IBS related. If the prednisone works then he will most likely put her on Entyvio. My understanding is doing another round of bloodwork won't help at this point because she's on prednisone.
 

my little penguin

Moderator
Staff member
Realize pred can help and may not take away the pain right away
It can take weeks for that pain to go away
Typically entivyio is not the first choice of biologic for crohns
Normally it’s humira or remicade
Due to insurance and better track record for pediatric crohns
Entivyio does better with UC (or crohns that behaves like UC -rectal involvement and large portion of the intestine .)



Is it a pediatric Gi ?
 
Hmmm this is pretty convoluted.

Most if her symptoms line up with Barrett's but not necessarily the diarrhea/rectal pain. But those could be IBS which many people with Barretts also have.

Did the GI run a fecal calprotectin test prior to scopes? It is pretty reliable for differentiating between a functional disorder vs an organic disease.

It is not usual to see inflammation visually but then not have something show in biopsies. Much more common to not see inflammation yet find it in biopsy.

I do know that "some" level of inflammation and even "some" ulcers could be due to prep or irritation from the previous diarrhea but not knowing what the GI is looking at it is hard to say. CT and MRE is pretty reliable as to inflammation but if you had those done after she was on prednisone fir awhile it is entirely possible that orednisone healed her.

I second MLP's comments about Entyvio. Especially if she has small bowel disease. You want to choose your first med carefully as with Crohns you have your best shot at responding to a biological when you are biological naive. I would ask about Remicade or Humira because A- they work for small bowel and B- they have a much higher success rate oh and C- they kick in faster.

Things in GI land usually take a very long time to diagnose. Sounds like you were lucky the first time around.
 
Thank you for the feedback. She is not seeing a Pediatric GI; he's the same one that diagnosed my older daughter.

The CT and MRE were done prior to starting Pred.

No fecal calprotectin test was done

A bit frustrated as I feel like results are a bit "backward" if that makes sense. The pred seems to be helping a bit so we will see how that goes as doc will re-evalute after she's tapered off.
 

my little penguin

Moderator
Staff member
Adult Gi are a completely different ball Game than pediatric Gi
:cry:

Kids tend to have much more aggressive disease
Can you get a second opinion
Fecal cal is a std test for all undergoing a crohns evaluation and monitoring

Crohns waxes and wanes
You don’t get a “hey look I am fixed” one day
It’s more gradual
Like one day you realize hey kiddo looks better abd is eating
Pred takes time
Weeks months not days

Good luck
 

Maya142

Moderator
Staff member
I would consider a second opinion at this point. I'm surprised she hasn't gotten an official diagnosis, considering she had inflammation that showed up on the scope and ulcers on the capsule endoscopy and there's a family history of Crohn's. There are several members on this forum who have multiple kids with IBD.

My daughter was diagnosed with mild Crohn's when she was 16, and she had ulcers in her colon and a friable terminal ileum, but since biopsies showed both acute and chronic inflammation as well as granulomas, she was diagnosed pretty quickly. She was put on Remicade and within 8 months, her scopes had improved dramatically - she had mild inflammation in her TI but her colon looked perfect.

The ER doc gave her dicyclomine 10mg (4-5 times/day as needed) which she took once on Tues and once on Wed. GI told her to not take any more dicyclomine and only take the prednisone. If the prednisone stops her symptoms then he believes it is Crohn's. If she gets worse and/or needs dicyclomine to manage the pain then he thinks it might be more IBS related. If the prednisone works then he will most likely put her on Entyvio. My understanding is doing another round of bloodwork won't help at this point because she's on prednisone.
Prednisone should help a lot but the bowel does not heal overnight, so it will take a while for the pain to go away. Think months, not days. Additionally, it's possible that she has both IBS and IBD. However, just because an anti-spasmodic helps, that doesn't mean it isn't IBD! My daughter takes Levsin (which is similar to Bentyl - dicyclomine) occasionally for cramping.

I'm also concerned about Entyvio - it sounds like she has inflammation in her small bowel mostly (ileum and higher up). But Entyvio really works best for Ulcerative Colitis or Crohn's colitis - NOT Crohn's in the small bowel. As others have said, for Crohn's in the small bowel, Remicade or Humira are the best options. Stelara would also work but it takes longer to kick in than Remicade/Humira.

I really do think a second opinion might help clarify things.
 
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