Heading to Surgery

Hello,

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.

Thanks

Ks1905 thanks for the response.

I see you still take stelara?? Is this for the pouchitis or do you have chrons?

I have been on xeljanz for nearly 3 years. 2.5 of those on the 5mg dose. I started to flare 3 months after dropping from 10mg to 5mg, but we caught it early and i got back in remission with mesalazine enemas (salofalk). Weirdly enough the enemas never worked for me before I took xeljanz.

I went on xeljanz after having limited response to remicade and entyvio. We didn't try any of humira/simponi/etc since they work by the same mechanism as remicade so the chance of them helping was small.

While waiting for xeljanz to work I made an appointment to see a surgeon to discuss colectomy but by the time i got to the appointment (week 7) the xeljanz had started to work.

Xeljanz is fast. It often works for people who failed everything else.Most people notice a change in the first week. Definitely worth a shot if it's safe for you.

Thanks guys.

Seems like pretty much everyone doesn't regret the decision to get surgery, when at the point when nothing else is working.

If the zeposia or xeljanz work while waiting to meet with surgeons, (Meeting with 2 surgeons. One from Cleveland Clinic and another from the University of Miami.) than that would be great too.. At this point I'm so tired of dealing with this disease..

My husband was 10 days away from surgery when he went on Xeljanz. He had tried remicade, humira and Entyvio. He knew within a few days after starting that it was a gamechanger, and has been in full remission for 5-1/2 years. Surgeon was dubious that Xeljanz would work, but surgeons like to operate, so...

Hew was at 20 mg / day for about 5 years but recently tapered down to 15 mg with no problem. Will probably try to go down to 10 at some point. It's a good idea to get ready psychologically for surgery, and to have a good doc lined up. But there are some drug options for you in the interim. So far no apparent side effects from the Xeljanz.

Good luck

I agree Keith, I'm just ready to be done with this stupid disease!

Hopefully something works in the meantime while waiting for surgery.

Thanks everyone!

I had to have surgery to let the bowel heal. My CRS thought that eventually we would hook me back up. That didn't happen for me. BUT... Having a colostomy has been a game changer for me. Surgery saved me. Your mindset will play an important role in how well you do regardless.

Sending positive thoughts your way. Good luck.