Were any of you with a Crohn's diagnosis originally diagnosed with UC?

I am just curious and trying to learn what I can.

I was diagnosed with UC officially in 2016 (but first flare was actually 2008) and I am trying to learn anything I can about it. My aunt has Crohn's, but she was never diagnosed with UC at all.

I am also trying to learn about the MAP virus. One thing I read is that those diagnosed with UC have it morph into Crohn's often at about the 10 year mark. I am approaching 10 years myself and have become curious about this. I do have a friend who had this scenario play out......so I wonder how often it happens?

Thanks, MK

Thanks for responding aimz, so from original UC dx to the new one 3 years elapsed?

My doctor also ran a Promethius test recently to differentiate from crohn's (due to familial history) and it came back pointing to UC. Was that also a test you had run?

She also intended to do a small bowel biopsy during my scope last month, but couldn't do it for some reason. I see her for the report tomorrow and need to find out why.

I used to believe MAP was behind the diseases, but have since changed my mind. I found out that 46% of healthy, non-IBD controls test positive for it.....so that kind of shoots that theory to bits for me.

Even if MAP was behind our getting sick, it seems there is immune system involvement that allows it to happen. But like you said, who knows what science will turn up next?

I was diagnosed with a parasite, then "it's all in your head", then IBS, UC, PG now CD. I was 9 years into my UC diagnosis when it became fistuizing CD. Sucks more than I ever imagined.

MAP is bacteria, not a virus.

UC doesn't change/morph into Crohn's. If a diagnosis changes from UC to Crohn's, it's because the initial diagnosis of UC was incorrect.

I think my GI always suspected Crohn's, so kept looking for it, as in 2010 I had a perianal abscsess, and in 2012 had a fistulectomy to address the resulting fistula. At the time the surgeon said there was no sign at all of IBD (I have since moved areas, and was diagnosed with UC within two months of moving - my faith in my previous care givers has all but disappeared!)

I'm not sure which tests I had to convince the GI to change the dx, but I'm glad I had them - the meds for UC weren't touching me! They have also since found another fistula, that we're just monitoring for now.. Oh the joys!

I've no family history of IBD, or indeed any other auto immune conditions. I had seriously considered MAP, but like you, read several reports that stated similar figures in non-IBD patients, and turned my back on that as a theory. I guess it's just rotten luck for some of us...

You're probably right that there is a spectrum, and that's it's a little more subtle than what I said.

Sometimes that grey area disease stays in the gray area. But to me, when it clearly turns into Crohn's, it was Crohn's all along; it just hadn't made itself clear yet.

At last year's conference they presented a case where a person had really conflicting presentation, with features clearly indicating Crohn's colitis (including fistula, skip disease, and narrowing of the colon), but biopsies that were reviewed by multiple experts kept coming back as UC. So yea, it's not always one or the other.