Crohn's Disease Forum » General IBD Discussion » Crohn's active in small bowel only?


05-10-2016, 07:03 PM   #1
xostepho
 
Join Date: May 2016
Location: Maryland
Crohn's active in small bowel only?

Hello!

I'm new to the group, so if this has been discussed already, I apologize. I tried to sift through the other threads as best as possible.

I am 27 years old and was diagnosed with microscopic (lymphocytic) colitis a few years ago after a colonoscopy. One of my initial symptoms was nausea/ vomiting that would only occur once I was asleep at night. At least a few times per week. Even though I tested negative for celiac disease, I chose to go gluten free to let my stomach rest. This helped for about a year and then I started noticing lower GI symptoms. The abdominal cramps got pretty intense, on a scale of 1 to 10, I would probably go with 15. The pain had me almost passing out (vision would get blurry, hearing would go in and out, body temp would rise). Luckily it didn't last too long and then I would have bouts of diarrhea.

Fast forward to today, I just seen a new GI doctor because of new health insurance. My main concern was joint pain/ arthritis. For the most part, it seems there's no association between joint pain and microscopic colitis. At least that's what other docs have said. I was shocked by this visit though. I'm so used to GI doctors looking at me like I have 5 heads when I explain my symptoms, they brush it off and i'm send on my way. This doctor, however, said that I could have Crohn's disease in my small intestine ONLY, and microscopic colitis in my colon.

He said that my symptoms don't match just one diagnosis or one type of colitis. But that a dx of Crohns and microscopic colitis would justify the joint pain (which has affected my lower back, then my hip, then knee and ankle *with swelling*) that has been hanging around with me since August of 2015. He also said this would justify my mouth ulcers. I've had lip swelling w/ fever that I forgot to mention to him. Apparently the extreme abdominal pain is more common in small intestine crohn's then it is in microscopic colitis and my age doesn't quite fit the criteria for microscopic colitis either.

So my question to you wonderful people, is there anyone out there with just crohn's in the small intestine only? Do you have microscopic colitis with it?

AND

If there were ulcers previously but say I were in remission (I've been on Lialda and entocort recently and haven't had much stomach symptoms), would there still be signs of previous ulcers like scar tissue or something? Something that would indicate that there was active inflammation previously there?

I'm scheduled for the pill endoscopy next week. Wish me luck!
05-10-2016, 07:29 PM   #2
Clash
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My son had CD in his small intestine only. It remained that way until after his first surgery. Last colonoscopy showed there was now active disease in colon as well. But it was located in his small bowel only at dx and remained only there for around 3 years.

As far as scopessential, there's a possibility that there is scar tissue left or even active inflammation still at the cellular level. Hopefully you will get answers soon.

My son also has arthritis with his CD. It is often an extra intestinal manifestation (EIM) of CD. His is actually JSpA (juvenile spondyloarthropathy) and he has to have treatments for it as well. Luckily, there are a number of drugs that treat both.

Good luck
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-10-2016, 07:41 PM   #3
xostepho
 
Join Date: May 2016
Location: Maryland
When your son was first diagnosed, did he have any rectal bleeding?
I've always thought that was one of the main things to look out for with Crohn's.

And out of curiosity, was he diagnosed by the pill endoscopy? From looking at the pill endoscopy's website they claim that the pill goes where traditional colonoscopies/ EGD's don't go.

Sorry, I guess I had more questions to ask after all hahaha.

thank you so much!
05-10-2016, 07:54 PM   #4
Clash
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He did have a bit of bleeding, he was anemic, but for months you couldn't see it in his stool because having traveled from small bowel it wasn't bright red.

A colonoscopy can see throughout colon and the last part of the small bowel (terminal ileum) the upper endoscopy sees down through stomach and the first part of small bowel. So the pill cam can give the GI a visual of all of the small bowel left unseen (which is a majority of it). My son didn't require a pill cam because colonoscopy can reach the last part of small bowel where his disease is located. Also he had and MRE(imaging similar to an MRI) to visualize it as well.

CD can be located anywhere from the mouth to the anus so different people have active disease in different areas.
05-11-2016, 10:34 AM   #5
Scipio
Senior Member
 
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Join Date: Oct 2015
Location: San Diego

My Support Groups:
"So my question to you wonderful people, is there anyone out there with just crohn's in the small intestine only? Do you have microscopic colitis with it?"

Crohn's in the small bowel only is very common. About 30% of Crohn's cases are confined to the ileal portion of the small bowel - including mine. However, I do not have any colitis, microscopic or otherwise. My Crohn's was first diagnosed by capsule endoscopy (pill cam), since no ulcers or inflammation were visible by regular upper and lower endoscopy. The pill cam spotted aphthous ulcers in the ileum.


"If there were ulcers previously but say I were in remission (I've been on Lialda and entocort recently and haven't had much stomach symptoms), would there still be signs of previous ulcers like scar tissue or something? Something that would indicate that there was active inflammation previously there?"

I'm guessing it would depend on how severe and long-lasting the previous ulcers had been. Severe disease that lasts a long time will leave strictures and other visible scar tissue behind after healing. Milder and more short term disease may heal completely if the therapy has been very effective.
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