According to the doctors at the Cleveland Clinic, ulcerative colitis is only located in the large intestine...no where else. If you have ulcers in other parts of your intestinal tract, you have Crohn's. I had nearly all of the ulcers in my colon and only a tiny ulcer in the beginning of the ileum. So, that's how they knew it was Crohn's disease. Also, ulcers from ulcerative colitis don't go as deep as with Crohn's disease. Crohn's ulcers can go all the way through the intestine involved and then start burrowing into other organs.
I did eventually have the ulcer chew though the bowel into the vagina...hence a vaginal fistula. They then ran tests and checked other organs, and I think checked it thoroughly during my surgery, too, and I didn't have any more fistulas anyplace other than the vagina. I was having bowel movements throught the rectum and the vagina! Infection time! LOL
They said that sometimes Crohn's patients have what is called "Crohn's colitis". That means that the ulcers are pretty much in the large intestines and, when the colon is removed, they may not have much problem with Crohn's after that. Apparently that is what has happened to me. Now, I still could have problems happen down the road but I'm praying that I won't. As I said before, I'll get other things that are related to Crohn's but I haven't had the terrible ulcerations in the small intestines that many people with Crohn's have. (They probably removed that diseased portion of my ileum during the surgery.) My rectum was removed, too, during the surgery and the opening was stitched closed. I have a permanent ileostomy. I was told that pull through surgery doesn't work well with Crohn's patients because they tend to get ulcers again. But, I don't have a problem having an ostomy so I wouldn't even consider it now.
Princess, I don't understand why they want to take your entire colon out if you don't have any ulcers there. Why can't they remove the diseased rectum and give you a colostomy? Doctors always want to save the good tissue. I'm just puzzled.
I do hope I have answered some of your questions, though.
Well then the docs at the cleveland clinic are wrong because UC can also affect the rectom and often will start in the rectom, not always, but often.
There seems to be some other mixed up info here as well, it's inflammation that can go beneith the many layers of the intestinal lining which leads to fistulas not the polyps (which is what it's referred to with CD, and ulcers for UCers).
And you can definitely still have issues as a crohnie when having your colon removed because CD can and usually will appear in the small intestines and/or other parts of the GI tract even after colon/rectom removal, but if you're wearing a bag the issues from active CD in other parts will not be as life altering compared to not having a bag.
Also, not all crohnies suffer with polyps (similar to ulcers) some or many deal with inflammation only...there's alot to the knowledge of CD..there are types of CD that vary from patient to patient, some suffer with inflammation only, some are prone to fistulization, some are prone to stricturing crohns.
Having ulcers alone is not the only issue with UC, if the inflammation is bad enough and your colon resembles hamburger because of severe inflammation, that's reason enough to have it removed, regardless if it's inflammation from CD or UC.