colonoscopy results, please help

Hey guys, looking to crowd source some opinions/experiences on the likelihood of a standing UC diagnoses actually being crohns based on the information below.

(back story) When I was first diagnosed with ulcerative colitis (7 years ago), my inflammation/ulcers were continuous from the rectum up. Same with the second time (flare - one year later). Upper endoscopies were done, and no inflammation was found in the small intestine nor was any found in the colon discontinuous from the rectal inflammation.

fast forward to now, I've had 3 colonoscopies over the last 3 years. The oldest had discontinuous erthyma (redness) in a couple different spots in my colon, as well as some friability (fragiliness of mucosa?). The second one was completely clean. The latest one (today) also had one spot of erythema (proximal descending colon), but was otherwise clean. No upper endoscopy was done for these three. It is worth noting that no inflammation or ulcers were found during any of these three times, although both the times the erythema was found my stomach was hurting (no dihherea).

(Question) My greatest fear is that I'm going to be diagnosed with/have crohns disease because of the way the erythema is presenting. Do any of you guys who have had multiple UC flares ever have colonoscopies with erythema that is discontinuous or does not start with the rectum? I definitely have IBS as well...could that cause some erythema that doesn't fit with the UC pattern?

(Dr. Opinion) I kind of got a non answer from the person who did my colonoscopy (my normal GI doctor was sick, so his coworker did it). He said that the erythema he saw was more typical of crohns pattern presentation BUT that it is extremely rare to have 2 flares that are strictly UC pattern only to be later diagnosed with crohns. Like I said, non answer.

Thanks for reading the TL'DR. Opinions and experiences are greatly appreciated

I'd say you have UC, no worries!

Erythema (redness) is a very. very superficial thing, so much so that that gallon of awful tasting prep you drank could have caused that erythema. It's like a sunburn in color, and can have no depth to it at all. That happened to me once, doctor said post-scope, you either are in a remission or have very, very minor inflammation from the prep, we'll see what the biopsies say! Biopsies came back remission. I'd wait for your biopsies before giving that one any more thought.

Friability means that the intestinal wall bleeds when touched with the endoscope, and that is suggestive of inflammation.

There's also a lesser-known variant of UC, where only the rectum and descending colon show inflammation, with a big skip.

If you said my colonoscopy showed "aphthous ulcers" (that is large, white ulcers much like canker sores in the mouth), saw a cobble-stoned texture, or strong and repeated skips, then it'd pique the crohn's interest.

Thanks for all the responses guys. I'm lucky enough that it doesn't matter too much rn. I just know it changes my 'end game' options, and that's for the most part what scares me.

Yes, you can have patchy presentation and still have a UC diagnosis. I know this because that's what happened to me. It took them years to decide if I had Crohn's or UC. Eventually I got the diagnosis "indeterminate colitis". It's because my UC was discontinuous, but the tissue biopsy showed a UC tissue pattern. Also my terminal ileum was mildly involved.

Some cases don't land neatly in column A or column B. I've also met people whose UC progressed to Crohn's later. They then get told they had Crohn's all along but such a statement is controversial in the medical community. Don't worry though, that's rare. Most people who only have large intestine involvement stay that way for life.

Anyway, short answer, yes, you can have patchy UC that doesn't start at the rectum. Mine was at the rectum, the start of the transverse colon, and the beginning of the ascending colon. The bowel tissue in between all those areas was totally healthy so the term "pancolitis" did not apply.

I wouldn't think too far into things. If the pathology said UC, it's likely UC. If you're using rectal medication it can treat the areas it reaches, making it look like it's skipping or patchy.

Sam1996 said...
Thanks for all the responses guys. I'm lucky enough that it doesn't matter too much rn. I just know it changes my 'end game' options, and that's for the most part what scares me.

You can surgeon shop for the ‘end game’, some surgeons will perform j-pouch surgeries for patients with crohns-colitis. It’s not an absolute disqualification.

Everyone was certain that I had UC even after my colectomy pathology reports. My surgeon said that I had UC and he’s a famous crohns surgeon who has a crohns surgical procedure named after him. I never gave it a 2nd thought - two years after my takedown surgery they are telling me that I have crohns because I have ulcers at the inlet to my pouch.

I love my jpouch even though I have to take meds for it, I’d do it all over again.

I wouldn’t worry too much about the diagnosis or lack there of, they really aren’t worth the paper that they are written on.

I think in a lot of cases, the pouchitis is more treatable. I know with my UC, nothing was able to keep it managed. I haven't dealt with pouchitis, but I know Keith is able to control his pouchitis quite well. I personally would have been happy if my UC were well-controlled with meds (except the cost and the time-consuming appointments), I'd also be happy if I had a well-functioning pouch, and I am sure I'd be happy if I had a pouch that was responsive to medication. Anything is better than living in a permanent flare-up. Of course, there are no guarantees. That's what's so scary.

Sam...yes, the results are read by a pathologist. 2 weeks is good. 😊

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Hi....I suggest you call to have a copy of the pathology report sent out.

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