My doctors really wanted my colon to calm down before surgery. I was in the hospital extremely sick with a severe UC flare-up for two weeks and was declining quickly. All my regular maintenance drugs had stopped working and they had tried up to 80 mg of Prednisone with no luck. My doctors gave me the Remicade or surgery option. I knew I was done with UC after going through that nightmare and firmly decided I wanted surgery eventually. The doctors did have a general surgeon ready to do emergency surgery in case things didn't get better, but they really wanted to avoid surgery at that point because I was weak, on 60-80 mg of prednisone and my colon was in horrible shape. Also, they knew I was leaning towards a permanent ileostomy, and the surgeon would not remove my rectal stump when I was on such high levels of Prednisone due to the likelihood of complications, so I knew I would eventually have to go back in for another surgery to get it removed down the road. I much preferred to have everything done in one operation, including having my butt closed up. Therefore, I agreed to try Remicade to hopefully get me to a better place for the surgery outcome I wanted with a top-notch colorectal surgeon at another hospital that my GI highly recommended.
The Remicade did work and ended my flare in about
5 days. The plan was to aim for three infusions while tapering off Prednisone, and then wait several more weeks for the Remicade to leave my system and then get my surgery when I was in remission and not on any immune system altering drugs. I ended up having a horrible reaction to 1st infusion of Remicade though and all my future infusions were cancelled. Fortunately, that one infusion held me over for about
a month and I was able to go into surgery in a fairly healthy state, with my colon much more healed and on only 30 mg of Prednisone.
My CR surgeon said he avoids doing surgery when people are in bad flares if at all possible because it makes things much more difficult. Had I slipped back into a flare while waiting for my surgery, he said we would have postponed the surgery and tried Humira to try to calm it down. Of course, if there is no possible way to get a flare under control, surgery will be scheduled when people are very sick and weak... it is just not ideal. Yes, it did feel weird to work to get my colon healed only to have it removed, but I knew by the history of my disease that it would only be a matter of time before I entered another flare. I knew I didn't want to take Remicade the rest of my life... and had a bad reaction to it anyway which ruled it out regardless. With Remicade off the table, what would happen if I fell into another dangerous uncontrollable flare? I would likely have to get emergency surgery when I was in a bad state. No thanks. I was done playing the UC game and taking risks with my health. I wanted my colon out of there. It has been the best decision I have ever made.
I am sure your surgeon will give you some thoughts as to what they want to do based on your situation. It is going to be different for everyone. Like Blueglass said, it is a balancing act between dealing with current symptoms versus complications etc.
-39 years old
-Officially diagnosed with UC in 2006, symptoms since 1999
-Took Asacol, Rowasa, Canasa and various rounds of Prednisone, tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had mild/moderate UC continuously until severe flare in autumn 2010 which led to permanent ileostomy surgery 11/8/201
-Visit my blog at http://ostomyoutdoors.wordpress.com/
Post Edited (Blueheron) : 2/20/2012 8:36:47 AM (GMT-7)