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Anybody here have isolated small bowel disease that doesnt affect the terminal?

Hello everyone,

I was wondering if anyone here has isolated small bowel Crohn's that didnt show up in colonoscopic biopsies? If so, what are your symptoms and what has your disease progression been like? Do you have pain? What complications have you had?

I ask because I am currently undiagnosed and the only place issues could be for me is deep in the small intestine because biopsies from the terminal ileum, colon, cecum, and rectum are always normal. I dont have much in the way of chronic symptoms- I dont have any pain and never have. I typically have 2-3 bowel movements per day (4 if I have a ton of caffeine and eat a lot). However, over 6 years ago I had a perianal abscess and I let it go too long so it became a fistula. I had a fistulotomy, which successfully eradicated it and I have had no further anal/rectal problems. My uncle had the same problem and he doesnt have Crohns (he later had his gallbladder removed though). I understand the over 90% of fistula-in-ano is cryptoglandular in origin and not Crohn's related, but I have a few other questionable issues. For 9 days in August of 2020 I had unexplained severe diarrhea (without blood). It subsided on the 9th day and hasnt returned. All stool cultures came back normal. All of my inflammatory markers are also all normal (my CRP is <0.5).

Do these mild symptoms sound like hidden small bowel Crohn's? Can you feel great and still have serious asymptomatic damage occurring in the small intestine? I have been tempted to just go on living my life and not worry about it since I feel fine, but I keep worrying that something horrible is happening my small intestine that I cant feel and that my mildly higher stool frequency (2-3 per day) is a sign of it.

What do you guys think? Should I just relax and not worry unless I start feeling pain? Or should I demand an MRE and a pillcam?

I honestly dont feel like I would need any meds since I feel great, so Ive been hesitant for that reason. But Im torn on what to do.


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