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Just finished colonosc. New DX

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Ulcerative Colitis
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Posted 8/9/2012 5:15 PM (GMT 0)
Well, just got back from my colonoscopy and upper scope. Good news is I'm 95% better in terms on inflammed areas, as I was apparently completely inflammed during my first scope back in June (to the point they couldn't really get in there and get a good look). Also, the upper scope came back clean, meaning the ulcer in my esophagus is gone. Other news is that now my GI thinks it's Crohn's. I'm not sure if that's a good thing or a bad thing, I haven't really looked into it. I am just a little suprised at the change in diagnosis. I hadn't realized that the first dx was, what, like a guess or something. The doc acted like the difference wasn't that big of a deal, and is wanting to put me on Humira, which he thinks will fix me right up. I'm not mad at my GI, just a little caught off guard. And I hesitate to think that this new drug will be some kind of fix-all I've been waiting on. Then again, I haven't researched it at all yet. Hope everything in here is coherent; I'm still a wee bit loopy I think. turn That said, any thoughts, suggestions, etc.? Anyone else misdiagnosed like this?
Posted 8/9/2012 5:20 PM (GMT 0)
my uc skips all around my colon.  from 1991-2006 i was told i had crohns sicne uc does not skip around like that.   in 2006 i switched GIs and she thought my symptoms were more compatible with uc, i had the prometheus test which pointed towards uc and my gi  dx me with uc.  the first gi said that uc and crohns are treated the same way so it didnt matter. he was an idiot though..... from what i underdstand alot of the treatment is the same.
Posted 8/9/2012 5:33 PM (GMT 0)
My reality is totally cracked... not shattered, but cracked. I mean, I know docs aren't all-knowing gods, but I didn't realize there could be so much back and forth and uncertainty like that. Huh. I don't want to think my GI is incompetent. My first one was; that idiot about killed me (I should have left him when he laughed off probiotics as nonesense). But my current one is super nice and seems to really care, with an equally awesome nurse practitioner who always calls me back and answers my questions. Should I be concerned about this misdiagnosis thing, or should I just let it be water under the bridge and stick with my GI that I like?
Posted 8/9/2012 5:56 PM (GMT 0)
I don't think you should be concerned about your Doc just because of the change in diagnosis. If you Google search Crohn's versus Ulcerative Colitis, you will see that the diseases are sometimes hard to tell apart. People report a diagnosis switch quite often. In addition, there's "indeterminate colitis" or "crohn's colitis" - in which case they are just saying "it's IBD but we can't tell which."

If you had an upper scope and your GI found symptoms indicating Crohn's from the upper scope, then I think you should be fairly comfortable believing the new diagnosis. I think alot of the UC/Crohn's confusion comes when there are only symptoms in the colon, as both can affect the colon. However, only UC is supposed to affect the upper GI tract (with the exception of some "backwash" ileum inflammation when your whole colon is affected by UC).

I haven't researched Crohn's treatments precisely, but one big difference between UC and Crohn's treatments is the 5ASA/ Mesalamine type treatments. For UC they will prescribe Liadla, Asacol, etc. but I don't think that happens as often for Crohns unless there are colon problems. Humira is actually FDA approved for Crohn's and is being investigated for FDA approval for UC. I think it may help Crohn's more, but it's definitely used to help UC as well.
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