Yeah I'm in the same boat. They thought I had UC, now I've had a Jpouch for over 7 years and now my GI suspects I have Crohns. I've just started taking Humira as treatment, along with 1000mg of Cipro/Flagyl daily, which I'll taper off eventually and the Humira should keep my symptoms at bay hopefully.

Interesting that I also have just been semi diagnosed with Crohns. My pouch was done in 98,because of UC, and I recently had a stricture dilation (2 wks ago @Mt. Sinai)with a finding of a fistula (seton done, ouch), went back to surgeon yesterday & he said my biopsies indicated pouchitis. However he said he still believes it may be crohns, He said that the options are go with a Canasa supp. (mild) or start Humeria (severe). I have been drug free since 98, only now using lomotil. So I will start the Canasa and see how that works. I would like to know if anyone has good results with Canasa? Scared of returning to the days of heavy meds. Any good advice on what meds help with pouchitis/crohns?

I'm another example of one whose diagnosis was switched to Crohn's, after 24 years as UC, and 12 years after the pouch creation. Mine was based on my records, endoscopy, blood test. I'm still not convinced, but it doesn't matter that much to me what they call it. I still have pouchitis anyway. I've started Remicade (no effect after 3x), and I've been taking Canasa for a few months--it works really well.

I too had a UC Diagnosis changed to Crohns. I had my J Pouch done in July 1994 and completed in Oct. 1994. I ended up developing a Pouch vaginal fistula after a successful pregnancy in 1997. By that time I had left the Cleveland Clinic area. In relocating I had to find a new doctor. Unfortunately with that came a new diagnosis. I was told that it had to be Crohns since fistulas did not occur in UC. I made a trip back to Cleveland for a second opinion and attempt to close the fistula with surgery. My old doctors felt the diagnostic tests were inconclusive about it being Crohns but said they would probably treat it the same way as my new doctors. The surgery was not successful so I live with the inconvenience of a fistula and a Crohns diagnosis.

I had UC for 27 years before my j-pouch. Several years of pouchitis, then cleared up spontaneously. But still had ulcers in the pouch. GI started me on Remicade and improvement was dramatic. She says the best way to decide whether it is chrohns or UC is to remove the colon . So I'm not sure what all this means, but it is interesting how many former UC sufferers have been diagnosed with chrohns after years with a j-pouch. I cannot believe all those initial diagnoses were wrong.

Removing the colon may or may not prove anything, since chronic pouchitis may or may not be UC or Crohn's. I think what they are finding is that IBD is not just two diseases, UC and Crohn's, and there are a number of subtypes. Of course, it is a moot point if the treatment is the same...

The initial diagnoses may not have been wrong, but just based on limited information. It can take a lifetime for IBD to fully develop. No one has implied that I have Crohn's because I developed enteropathic arthritis after colectomy and biologics improved my pouch function.

Frankly, I don't even care what it is called.

Jan

Docs at CC state that even though you may have had UC before surgery, that new autoimmune diseases, like crohns can develop after. So it does not mean your pre-surgery diagnoses was wrong. Its that surgery triggered another autoimmune disease.