Missthepeepster

My first post here...Diagnosed with UC in 1985 and asacol worked for years, then didn't. Seems the beginning of each year for the past 3 years brought a flare and they got impossible to control. I was in almost a constant flare in 2018; on prednisone and humira until April when I started remicade. Because the "normal" dose and frequency of infusions wasn't really working and I was desperate to get off prednisone, remicade dose was doubled to every 6 weeks. Had my second double dose infusion yesterday, off prednisone last week--forever--it really makes me crazy and I'm apparently steroid non-responsive now. Remicade seems to be working for now but it (along with long-term steroid use) has caused body fat I've never had. Because long-term side-effects can be deadly (I'm 66) and long-term doesn't actually mean 20 or 30 years. Anyway, I have an appointment at UCSD Monday to consult about colectomy with end ileostomy--complete removal of the colon--this requires an ostomy and a bag and a sewing up of the rectum. Many of you have had such surgery and since I don't know anyone who has had this surgery I would love to either talk to you directly or hear from on here. As I know, I'll never be younger than I am now so I'm healthier and stronger than I will be in a year or decade or two. How does the rectum get sewn up? The surgeon does laproscopic robotic surgery. Anyone had their surgery that way? Ok, that's it for now and many thanks for any help.

Missthepeepster
diagnosed in 1984 with UC, on remicade, double dose every 6 weeks

Good luck! UCSD is a great place to go, keep us posted.

If remicade works and gives you are remission, then that is preferable over a surgery. Yes, there are risks to medications like remicade, the 'deadly' ones are 0.04% (or 4 in 10,000), if you are talking lymphomas. But of the 0.04% who get that, 66% are able to put the lymphoma into a remission and it is a non-issue going forward, so that absolute odd of a fatality gets quite a bit smaller in the end. To put this into perspective, one's odds of death from heart complications is 1 in 5, and death in a car crash in the usa is 1 in 133. So, yes it's possible but extremely unlikely. Some of the more recent research puts the blame of the lymphoma squarely on the thiopurines (6mp/azathioprine/imuran), as everyone who got the lymphoma during the remicade clinical trials was concurrently on both remicade and a thiopurine. Nobody got a lymphoma while taking just remicade during the clinical trials.

The source of these statistics, and a greater in-depth look is this, a good and recommended read from the CCFA:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

There's legitimate reasons to get a colectomy, but don't let a fear of remicade killing you be the driving factor. As the odds of death are actually much, much higher during colectomy surgery then via remicade. Still small odds on the death in colectomy, but it is present (as there's risk in everything). We had a poster die in 2018 during colectomy surgery.