Could it be Crohn's?

Personally, I'd put more faith in your gasteroenteroligist, history of colonoscopies and biopsies than I ever would a naturopath....

This indicator was from a stool test. But yes, I also never heard of this method of diagnosis for Crohn's. Ah never before did I think that having UC would actually be a good thing, and something I would hope to have...

Post Edited (Katerina-b) : 10/27/2017 2:54:39 PM (GMT-6)

unless the biopsy shows ulceration deeper into the tissue, there is no basis to diagnose chrons unless there is patchy inflammation

even if small intestine is mildly inflammed currently, that does not mean it is chronic.

i would not put too much faith in an odd test.

besides, how would treatment differ?

What was the reason you went to the naturopath? And do you actually believe him?

q

You could get a small bowel mri and/or get a "prometheus ibd sgi" test to rule out Crohn's. Frankly, I'd call bs on this naturopath's test. It just doesnt make sense given your histological testing

Go back to your GI and ask for a small bowel MRI or capsule endoscopy test. That's the only way to clear up this up. If there's no sign of small bowel inflammation, then I wouldn't worry about having Crohn's. And I would stop seeing naturopaths who order dubious tests that regular GIs have no truck with. If the blood test you had was a reliable marker of small bowel inflammation, GIs would be using it, just like many of them use the faecal calprotectin test.

Post Edited (NiceCupOfTea) : 11/1/2017 7:18:00 PM (GMT-6)

That's fantastic. I guess everyone was right to tell you not to take that nautropath too seriously. I don't know about UC turning into Crohn's but I have heard of people having surgery for UC and developing Crohn's many years later. I don't think it changed though, I think they ended up developing Crohn's in addition to UC. It's certainly not something I would wish on anyone, and I am happy your MRI looked good. Did they see anything in the colon? I know you said your UC is very well managed at the moment. My MRE showed all sorts of inflammation in my colon. I was flaring badly at the time.

I'm actually not sure if they looked at the colon, I think it was just the small intestine. Here is what the report said: Stomach and duodenum are normal. Bowel loops are normal in caliber. No abnormal bowel wall thickening or enhancement. No stricture. No bowel obstruction. No fistula/sinus tract. No abscess. No perianal fluid collections. Ischioanal fossa is normal.

I had an MRE in the past and it did not show small bowel inflammation or colon inflammation at the time (I had mild proctitis so it did not pick it up). It certainly does look at the colon as well. I have Crohns colitis which is Crohn's in the colon only.

There is also the scientific view that some people start with UC and it develops into CD and it's not just a misdiagnosis. I have been reading a lot about MAP theory lately in my spare time and if the theory is true then people who go from UC ---> CD are probably infected. The last thing I read talked about how the immune system gets worn down over time and then the infection goes deeper causing CD but not in everyone.

My question is... does it really matter if you have CD or UC? The only differences in treatment are your surgery options. Otherwise all the drugs they use are the same.

Katerina-b said...
Oh wow, that's good to know iPoop! Should I take it as there is no inflammation at the time, or is a colonoscopy still needed to conclude that?

MRI/XRAY would only detect moderate to severe inflammation within the intestine. It's looking for wall-thickening, which is a sign of moderate/severe inflammation. Should you have something very mildly inflamed, or microscopically-inflamed then upper and lower endoscopy with biopsies would be necessary to find it. So, technically, yes, you would need a colonoscopy and upper-endoscopy to be 100% certain. I'd say being mostly sure is fine enough, where you are now. Often not worth the invasive scoping and awful 20-gallons of prep, to know though (unless you have bad symptoms or are part of the annual c-scope for CRC after 8/10-years club).

Katerina-b said...
To me it matters which one I have, as there seems to be hope for a normal life after surgery. Always good to think that there is light at the end of the tunnel...

Yeah, it's nice knowing that if the crap-hits-the-fan and we no longer respond to anything that there's an out from this whole thing, get a colectomy/IPAA/Jpouch and say "sayonara large intestine" and be free of it all. Certainly go that route myself, if I ever cannot control my uc. Remicade has worked well since 2012 *knock on wood* and there's more meds to try should it fail me. So, I'm not that close to that outcome now, but who knows what the future holds *shrug*. I'm mentally-prepared for all possible outcomes/eventualities. Quality-of-life is what it's all about and I'll do whatever becomes necessary to retain as much QOL as humanly possible.

Post Edited (iPoop) : 6/29/2018 2:44:38 PM (GMT-6)