I am scheduled for a consult with a surgeon at Cleveland Clinic in two weeks to discuss and schedule the surgery.
I am fully on board with having surgery. Let me explain how I ended up with making decision to have a consult for surgery:
I was diagnosed 2002. I took Asacol for a few years (slowly had to increase the amount). It stopped working while I was at 3 pills, 3 times a day. Doc then prescribed prednisone to see if we could achive remission again. In 2007 I started Lialda. It worked for a bit but was never totally in remission. Always had flares (not daily, but maybe twice a week). I'm always anemic and tired and most of all, worried about 'accidents'. By August 2011, I was put on Prednisone again which didn't put me in remission but did assist in that there was less blood, more formed bm's, less mucus, more control over accidents.
After the Prednisone attempt, I started back up with the serious flares. Very bloody, not able to hold bm's, couldn't make it to the bathroom alot, when I did make it, I was in there for sometimes 25 minutes, and worse than that was the pain from what felt like spasms in my colon. She prescribed something for the spasms but it didn't make the other symptoms any better.
June 2012, doc recommended Imuran. Was good at 1 pill a day for two weeks, but when I started on the 2 pills a day, I immediately starting having serious pains in stomach. Doc immediately stopped the Imuran and the stomach stabbing pain stopped in two days. I was off Imuran for about 3 weeks then started it back up (this was my doing because I noticed a SERIOUS DIFFERENCE in my UC symptoms. Symptoms were resolving! I wanted to give Imuran another try but once again, after taking 2 a day for two days, I was in so much pain I thought I would have to go to ER. I went back to doc and she recommended Biologics (Remicade and some others). I don't want these. Nonetheless, she explained that it stops working in 2/3 patients in short period of time. Regardless, I do not want those types of drugs in my symptom. It was bad enough to allow Imuran.
Now, with all of this being said, am I really ready for surgery? I've read stories of some seriously sick people. They have it sooo much worse than I do. To top it off, after I refused the Remicade and told the doctor that I just wanted surgery, she told me "I have alot more patients that are worse off than you". So that has me wondering now. Does she mean that I should not be considering surgery? Does this mean she feels I should try the Biologics? That I'm not bad enough internally to require surgery. I do know that my UC only affects the lower left side of my colon.
Please give me your thoughts... Should I be embarrassed to be seeing a surgeon when I'm apparently not suffering as much as other patients or that my colon isn't in as horrible condition as others?
Thanks for any input....