Hi everyone, I was originally diagnosed with UC and had my j-pouch surgeries back in 2001. In the 4 years afterwards I had problems with fistulas and abscesses, so my doc considered that I might actually have Crohn's. He did a blood test, but said it was not positive, although it has a high false negative rate. Then I had basically no problems for 5 yrs, until now.

I am currently 20 wks pregnant and have been going through severe exhaustion and terrible diarrhea for 5 wks now. They just scoped me on Friday and found ulceration in the pouch, but not outside of the pouch. The doc is convinced that I have Crohn's disease and not pouchitis. The biopsy results are not back yet, but I am curious about what makes the diagnosis Crohn's vs. Pouchitis. I have been put on prednisone and am hoping to be able to come off of it within 6 wks. Please give me any insight you might have about the different diagnoses. Thanks a lot.

Much of the time it is just a preponderance of the evidence, but no real definitive "aha" moment. Since the blood tests are not that accurate and biopsies usually do not show evidence of granumomas (a more confirming finding), they just have to give their best guess. You could have a camera pill endoscopy to view the entire small bowel (when you are no longer pregnant). Sometimes, small bowel lesions are found that way, when no other method is revealing.

Jan

Hi...my diagnosis was also changed when I developed a fistula that was supposedly only seen in Crohns. I never really got better after my j-pouch surgery. I had (what they treated as) pouchitis from day one. But, I never had a whole lot of the inflamation that is seen in pouchitis. My doc at Mayo guessed it might be Crohns early on, but didn't want to rediagnose it until further evidence came about. The fistula was that evidence. Now I have had my j-pouch disconnected and gone back to an end ileo. Without the bm's to measure what my output is like, I wonder how to tell if I'm in a Crohn's flare...?

Cat, I think more than likely you would feel poorly. I know symptoms can vary but I imagine you would have fatigue, abd pain and cramping, increased output, etc.
I have never had any remarkable inflammation in my pouch, either.

Hi all...I too was just diagnosed with Crohns after three years of a great pouch. And most of you know I freaked. In my case the pouch was very ulcerated. I am on pentasa, the diarahea the many bms stopped. BUt I have a little cold and I am so tirreeeddd. Sue

Thanks for the comments, I kind of thought it was not an easy diagnosis. I think that my issues with fistulas and abscesses is what really makes them think it is Crohn's. This is my first time on prednisone in FOREVER and I hope to get off of it ASAP (before my surgeries, I was stuck on it for over 3 yrs and I hated every minute of it). I will just wait and see what they find out from the biopsies. Thanks again!

Hey BUtteryfly...My blood test showed negative to Crohns..But, prednisone worked great. And I think the Pentasa is working (fingers crossed) My Gi & I both saw the scope (I was completely ulcerated!), she said if it looks like and quacks like...it is! It is just terrible!!! Sue

Thanks Shelby...good to see you.

I need your good attitude Catja!! Sue