Aww, i am so sorry to read this. I was rooting for you to have an easy time. So frustrating. I can't imagine how annoyed you must be with all of this. You were doing great with the ileo. I understand preserving but I also understand your side and wanting to live your life. Maybe the trial med will work for you and you can get back to good health without any more surgery. NCOT had her colon removed and has Crohn's. I am not sure who else :(
lots of people with Crohn's but none of them post any more or only once in a blue moon.
I can only hope it's because they are Crohn's-free and enjoying life with an ileostomy. Larasmom was one who posted recently, and it was to say how well she's doing.