Posted 12/2/2021 6:48 AM (GMT -8)
So I met with my GI specialist yesterday and it looks like surgery is going to be the way to go.
I've been through all the mesalamines early on, (diagnosed 10 years ago) and failed cimzia, simponi, humira, entyvio and now remicade. Also been on 6mp and Imuran to no avail. I've currently been in a flare for about 14 months now. I can't get off pred and hydro cort enemas. Currently having 8-10 bm's a day. (I've only had 1 period of about a year and a half in remission from entyvio.)
Last scope was a year ago and it revealed a worsening of my condition with severe inflammation throughout the left side of my colon. Going to be getting another scope in the next month.
I'm going to switch to xeljanz or zeposia while waiting to meet with the surgeon. (My insurance currently doesn't cover him, switching health insurance plans and will be covered after Jan.1) My Doc wants to give me zeposia over xeljanz mainly because a history of arrythmia in my family, and because she said its basically impossible for people to get off the starting dose of 10mg a day. She is still doubtful that it will work, based on the fact that I've failed all the other medications.
I didn't know if the day would ever come where surgery was on the table, but I think I'm at peace with it. I'm nervous about life style changes. I love exercising, lifting weights etc., and I'm not sure I'll be able to continue this. I'm a 39 year old male. I'm the primary provider for my wife and 3 small children.
I'm not sure about just keeping the bag (after colectomy) or getting the j pouch. I've heard so many horror stories surrounding complications of having a j pouch.
Any feedback is appreciated! This forum has helped me feel at peace countless times over the last decade.