Hi! I was diagnosed and treated for ulcerative colitis for 11 years before they realized that I really had Crohn's disease. The Crohn's diagnosis was made at the Cleveland Clinic when they did a colonoscopy. They went through the large intestine and into the bottom part of the small intestine. There they found more ulcerations...hence the Crohn's diagnosis.
Several years later, my colon was cobblestoned with ulcers and I was scheduled for the total colectomy. Having the ileostomy was one of the best decisions that I made. I now am not "chained" to the toilet and can live my life freely. It hasn't kept me from doing anything that I want to do. I swim daily, been snorkling, parasailing, etc. The only thing I can't do is move my piano during spring housecleaning!
It isn't a surgery to take lightly, but it can be a God-send, too. I fought the idea for such a long time and then, when I HAD to have the surgery, I realized everything I worried about could be handled easily.
I had Crohn's colitis and I haven't had any intestinal ulcerations since I had my colon removed...18 years ago! I have gotten a vaginal fistula, which caused me to be written up in the medical journals since that's not supposed to happen after a colectomy, and I do get iritises occasionally, but I'm generally pretty "free" from the terrible effects of Crohn's since I had the ileostomy. I just wanted to share this for any who are having to make that type of decision. I hope this helps some.