You really have been through a lot. Like you said on my thread, we are in similar situations as they have listed me as indeterminate colitis as well. I have always had every sign pointing to UC; whole colon involved, no patches of healthy colon, no small bowel involvement (except for recent biopsies), rectal involvement, pain, blood, urgency etc. I also got the Prometheus test and it pointed towards UC, but again it cannot be 100% for certain.
Surgery would seem like the obvious choice in your situation if it weren't for the uncertain diagnosis. I know there are a few other tests that can be done to try to get a confirmation.. I have had a CT enterography and I am going to get some other fancy test done soon where I have to drink some barium contrast and they take pictures of the sm. intestine. I am not sure of the name of that one but there is also a capsule endoscopy, where you swallow a pill that has a camera and takes pictures of your sm intestine as well.
Maybe some of those tests could help and I hope your colonoscopy coming up gives you some answers!
Diagnosed with Ulcerative Colitis in August 2011.
Changed to Indeterminate Colitis when upper endoscopy biopsies showed giant cells in my stomach and duodenum which indicate Crohn's.
Failed many meds..searching for one that works...
Tired of prednisone!