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Question regarding isolated small bowel Crohns and progression (and diet)

Hello everyone,

I am undiagnosed but I am unclear as to what to do next (or if I need to do anything at all). Ive had very mild gastrointestinal issues for nearly 20 years and theyve never really gotten worse. If I eat a ton of fiber and calories I tend to have a lot of flatulence and normal looking stools 2-4 times per day. However, just over 6 years ago (October 2014) I developed a single perianal abscess which became a fistula. It was surgically removed through fistulotomy and I have had no further issues since. However, my mild gastrointestinal issues remained. I am a paranoid person with health anxiety, so Ive had two colonoscopies (both with biopsies all over, including at the terminal ileum) 4 years apart and both times everything came back normal. However, on my most recent EGD I was shown to have mild chronic gastritis in the stomach and mild villous blunting in the duodenum. Both non-specific and could be caused by any number of things. I am aware that 95% of perianal fistulas are not related to Crohns (and my uncle had one 10 years ago and he doesnt have Crohns...as far as he knows), but Im still concerned.

Does anyone here have isolated small bowel Crohns that is outside of the view of the colonoscopy? And, if so, what had your disease progression been like? What were your symptoms like at the beginning and how long did it take to surgical intervention? Like O said, its been many years for me and I havent noticed much change. I rarely get diarrhea and I have no pain (other than occasional transient gas pains).

I have been doing the SCD diet "just in case". I find it fairly easy to follow since I usually cook my own food anyway. Im just torn about if I should just roll with things since I feel fine or if I should keep going to different doctors. Is it possible that the disease is spreading and causing more damage even though I feel fine?

Colonoscopies are usually very indicative for Crohn‘s as they usually come up with *something* if one has it... you had 2 clean scopes 4 years apart. Sounds good.
If you are really worried, you have to determine what is *the* thing that will calm you; is there such a thing, or will you still be worried after ?
You may want to consult with your doctor about pillcam which shows the entire GI tract.

Lady Organic

Staff member
I rarely get diarrhea and I have no pain (other than occasional transient gas pains).
... along with 2 clean scopes and biopsies and probably clean blood tests, I would not worry:)
Stress does cause mild or (sometimes even bad) gastrointestinal issues in healthy people. Some people have headaches, stomach ache, insomnia or GI issues with stress or anxiety. All these symptoms associated with stress are far more more common in the general population than IBD. Meditation, relaxation, (can be guided on youtube) are excellent ways to reduce stress on a daily basis.
I have heard of people who have needed to get a diagnosis via a pill cam so that could be an option. I have the thing you describe with the blunted duodenum however my disease is visible at the terminal ileum. They did wonder whether coeliac disease may cause the upper GI problems. Have you had a blood test for this? Along with a lactose intolerance test? I would get these and a pill cam.
That is me, I needed a pill cam to get diagnosed. Scope down the throat and through the other end showed nothing.

my little penguin

Staff member
Pill cam (capsule endoscopy) and MRE (mri with entography) show the small intestine to determine is there are any issues there
For me all my tests were normal, everything, blood, stool, ultrasound, you name it I made them do it. I made my gastro test everything and he said I have IBS. So then I got a new gastro and he did an endo then did the pill cam. The pill cam showed inflammation.

My symptoms were sudden urgency. Like, I would be walking around feeling normal then all of the sudden had a find a bathroom immediately which was normally accompanied with diarrhea. No blood, just urgency out of nowhere.

I did a follow up MRI (MRE) a year later and it showed me 100% normal, no instance of crohns. Though I was still having issues.

Today, urgency is 99% gone. I made some small diet mods and I am a supplement nut job. Hearing other stories on here, I feel blessed and have nothing to complain about.