I just wanted to say I've been reading all this and - I empathize with you. It's horrible to have a sick kid, worse than being sick one's self.
I consider myself lucky that my son didn't develop UC until he was 13... well, wasn't diagnosed until then, anyway and although it was severe pancolitis at that point, it's been very quiet since and it has responded beautifully to lower-level meds.
Keep us posted on what you decide. It's a huge weight of a decision to have to make on behalf of someone else, and someone so young..... I'd likely opt for the surgery. (I'm saying this but I have not done the research in regard to a young child.) But, the idea that he would be able to recover and enjoy his young life better, and he'd adapt to being without a colon as a normal part of his life....sounds very tempting, from the psychological aspect.
Do follow up on Suebear's suggestion at jpouch - I hope you can find some additional help there.
Keep us posted - you are in my thoughts.
Co-Moderator, UC Forum
Age 54. Diagnosed UP 1983, UC 1986
Asacol - down to 13 pills/day,
almost off Cortenemas. Rowasa 2x a week.
Metamucil - 2 doses/day
VSL#3DS, Multivitamin, Calcium and D
homemade yogurt each day
Son, 17, dx pancolitis 2007, in remission
Post Edited (songlady) : 9/16/2010 10:25:16 AM (GMT-6)