Hi,
Just a brief history. I have UC. I started experiencing symptoms in Feb of 2011 and was diagnosed in July of 2011. I started with Asacol (failure), ended up in the hospital (steroids, Lialda, azathioprine started) in Novemeber (while eating the Paleo diet for a month). Had a BRIEF 1 to 2 week remission around January at the end of my steroid taper. And then a reflare. After I started having trouble getting the flare under control with steroids, I started Remicade. It seemed to work the first time! After the second time, I got really sick (throwing up) and ended up having slightly abnormal pancrease/liver levels. Pulled of the azathioprine. The third Remicade infusion did NOTHING and I had tapered off of steroids again. Back on 25 mg of steroids. Had a scope about three weeks ago (so about 7 weeks after the third infusion), and despite being on Remicade and Pred, still had sever UC in my rectum and moderate in my sigmoid to the descending. I should also add that over the past year, my UC has spread from 10cm to 26 cm. I had to delay my fourth infusion due to shingles and just had the maximum dose today. In the meantime, I had to go back on 40 mg of pred as I was going to the bathroom 7x's a day, lots of blood, clots, and usually diarrhea. My GI brought up surgery 3 times - and this past time I agreed to a consult. I feel very fortunate that my case has been referred to the Cleveland Clinic and I have a consultation in about a month.
At this point, even if I'm seeing improvement on the higher dose of Remi, I feel like it's just putting a small band-aid on a gushing wound. I still haven't tried 6MP (although I lacked an positive reaction on azathioprine) and I have not tried Humira. Given that I'm barely responding to steroids and that Remi and steroids are the "rescue" drugs in the hospital, I'm obviously a bit concerned. The two pieces of advise I keep seeing come up on messages boards are 1) don't wait so long - have the surgery while you are healthy and 2) find a good surgeron. Given that my consult is with Cleveland, I think #2 is taken care of (ooo, there's a pun for you!). I'm trying to figure out how to handle one - whether to experiment a bit more or not. I'm would not be surprised if I would need 3 operations given that I've been on pred at about 25 mg. since Nov. 2011.
Anyway, now for the question. One question I haven't seen addressed yet is...what were you unprepared for with the surgery? Were there little things they didn't tell you to expect? Anything you wish you had known? Etc. Thanks for reading and thanks for any input you could provide!
Just a brief history. I have UC. I started experiencing symptoms in Feb of 2011 and was diagnosed in July of 2011. I started with Asacol (failure), ended up in the hospital (steroids, Lialda, azathioprine started) in Novemeber (while eating the Paleo diet for a month). Had a BRIEF 1 to 2 week remission around January at the end of my steroid taper. And then a reflare. After I started having trouble getting the flare under control with steroids, I started Remicade. It seemed to work the first time! After the second time, I got really sick (throwing up) and ended up having slightly abnormal pancrease/liver levels. Pulled of the azathioprine. The third Remicade infusion did NOTHING and I had tapered off of steroids again. Back on 25 mg of steroids. Had a scope about three weeks ago (so about 7 weeks after the third infusion), and despite being on Remicade and Pred, still had sever UC in my rectum and moderate in my sigmoid to the descending. I should also add that over the past year, my UC has spread from 10cm to 26 cm. I had to delay my fourth infusion due to shingles and just had the maximum dose today. In the meantime, I had to go back on 40 mg of pred as I was going to the bathroom 7x's a day, lots of blood, clots, and usually diarrhea. My GI brought up surgery 3 times - and this past time I agreed to a consult. I feel very fortunate that my case has been referred to the Cleveland Clinic and I have a consultation in about a month.
At this point, even if I'm seeing improvement on the higher dose of Remi, I feel like it's just putting a small band-aid on a gushing wound. I still haven't tried 6MP (although I lacked an positive reaction on azathioprine) and I have not tried Humira. Given that I'm barely responding to steroids and that Remi and steroids are the "rescue" drugs in the hospital, I'm obviously a bit concerned. The two pieces of advise I keep seeing come up on messages boards are 1) don't wait so long - have the surgery while you are healthy and 2) find a good surgeron. Given that my consult is with Cleveland, I think #2 is taken care of (ooo, there's a pun for you!). I'm trying to figure out how to handle one - whether to experiment a bit more or not. I'm would not be surprised if I would need 3 operations given that I've been on pred at about 25 mg. since Nov. 2011.
Anyway, now for the question. One question I haven't seen addressed yet is...what were you unprepared for with the surgery? Were there little things they didn't tell you to expect? Anything you wish you had known? Etc. Thanks for reading and thanks for any input you could provide!