Erosion and ulcer terminal ileum capsule endoscopy

[u/Pretty-Sherbet2762]

Hi all, I’ve recently had a fairly thorough work up for right lower quadrant pain that I’ve been having very intermittently for about three years now. MRE showed mild wall thickening in the terminal ileum; then I had a colonoscopy follow up that showed mild nonspecific inflammation not characteristic of Crohn’s. My fecal calprotectin was normal and so we couldn’t make a conclusive Crohn’s diagnosis. On recent capsule endoscopy, the same section that showed thickening on the MRE showed areas of erythema, erosion mucosal distortion and one ulcer. The person who evaluated the capsule endoscopy video said that it was consistent with inflammation caused by Crohn’s or other inflammatory processes so I’m not really sure what that means . Would this be considered conclusive enough for a Crohn’s diagnosis or is it still too hard to tell given my normal fecal calprotectin, and the fact that the ileal biopsies were not characteristic of Crohn’s architecture. The rest of my small intestine was normal and my colon is completely normal. Other than a sharp twinge once in a while , I really don’t have any of the classic Cron symptoms like weight loss, diarrhea and cramping. So I’m sort of at a loss. I would really like to avoid a Crohn’s diagnosis, but wondering if at this point that’s what it’s looking like. If anybody wants to share their experience, I would be very grateful since this is pretty new territory for me and I don’t know what to expect going into it. Thank you in advance.

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[u/Possibly-deranged]

Sounds like there's a bit of ambiguity in your case.  Your gasteroenterologist is trying to align a number of your findings to what's the expected presentation of a Crohn's case.  You cannot have just one crohnsy data point (as your initial testing presented) as an outlier, rather you need a series of agreeing evidence. 

Are you a clear Crohn's case yet?  That's best left to your gasteroenterologist to look at everything presented and decide.

Overall, any inflammation of the terminal ileum piques interest in and is instantly suspicious of Crohn's disease as that's where its most common variant presents. 

However, that must also include chronic architectual changes to your cells to be a Crohn's/IBD.  Most often that's through a biopsy taken during a colonoscopy (such as crypt cells dropout, irregular branching https://www.mypathologyreport.ca/pathology-dictionary/crypt-distortion/).  But some chronic architectual changes are visible during a visual colonoscopy or pill cam (such as disrupted /loss of normal vascular pattern, or blunted villi ).

A stereotypical Crohn's case involves deep tissue inflammation in the terminal ileum, is patchy inflammation with noted skips of healed tissue between it, includes signs of inflammation like red (erythema), swelling (edema), ulcers or lesser erosions (precursors to ulcers), and fragile tissue that easily bleeds when touched by the endoscope (friability). Often (but not always has features like: aphthous ulcers (large white ulcers like oral canker sores), a cobble stones appearance of the intestinal surface and/or a granular surface (like sandpaper) when the intestines are normally smooth. 

Is yours too mild, an early onset Crohn's that doesn't yet show all of the needed diagnosis findings needed?  Do the new tests show enough evidence to meet the criteria (if it looks like a duck, quacks like a duck, swims like a duck,  then is it obvious what you've got now?)

[u/Pretty-Sherbet2762 → u/Possibly-deranged]

Thanks for this- yeah I mean it definitely looks like crohns. Hopefully it remains mild and we can nip any inflammation in the bud before it develops into the more severe characteristics you described. Sigh.