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Has anyone else had capsule, colonoscopy AND MRE normal untreated?

Hello everyone,

I'm confused and uncertain of what to do. I have had mild bowel problems for around a decade. I typically have 3-4 soft but formed bowel movements per day that are very pasty and require a ton of wiping. About once or twice per year I also get horrible cramps and diarrhea that do not appear related to any food poisoning. I had a perianal abscess 8 years ago, but was told it was cryptoglandular in origin (the most common way perianal abscesses occur). However, due to my symptoms, tests were ordered. Over the course of the past 8 years since I have had two colonoscopies, both times with biopsies and terminal ileal access. Both were normal endoscopically and histologically. Then I had an MRE, which is apparently the gold standard in terms of radiology for Crohn's. It was also normal. Then I had a capsule endoscopy, which found no sign of Crohn's, but did find two non-bleeding AVMs. I also had two fecal calprotectin test 6 months apart. The first was 32 and the second was <17. I understand <50 is normal. Upper GI found mild villous blunting and inactive gastritis, but nothing specific for Crohn's and its not celiac. Ive been to four GI doctors and they all say that Ive had every single test possible. Yet Im still having mild symptoms. I take Imodium daily to keep to one bowel movement and I am on the SCD diet, but I have never taken any IBD medication. What else can I do? Should I demand a second capsule?
 

my little penguin

Moderator
Staff member
The thing to understand
Crohns causes damage not just symptoms
No damage was found during your testing
That’s a good thing
You can have irritable bowel syndrome
Which causes symptoms similar to crohns but does not cause damage to the intestine
You do NOT take IBD meds for irritable bowel syndrome (IBS)
There are IBS meds which are different depending on if you have ibs C (constipation)
,ibs -D (diarrhea ) or ibs -mixed (combo of the two )

pushing for more crohns testing when it had all been normal wont help

Symptoms do not equal inflammatory bowel disease

Please talk to a Gi about ibs
Some use ibs meds
Some use fodmaps
Or other diets for ibs
 
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