This is my first time on this site. I am contemplating having the surgery. I have mild symptoms from UC. I never missed a day of work due to it and have never been hospitalized. I've had UC for 5 yrs now. Mid transverse. I refuse to try Remicade, my GI thinks I'm crazy because of this. I had my third dose of entyvio, which is not working. My DILEMMA is to have surgery or not. I don't want prednisone ever again. I have small amts of blood and mucus with every bm. Some days I go 7 times and some only 2. I worry about cancer in the future and can't stand the ups and downs of this disease. I have a booked surgery date for December 4th and have already had a consult with the surgeon. Any advise would be awesome. Thanks.
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I'm happy to have my pouch, but I *absolutely* tried Remicade first. You have no idea what sort of a trade-off you are planning to make.
There are other biologics besides Remicade if you don't want to try that. How about Humira or Simponi? They are also approved for UC and do not require IV infusions. However, I would question your diagnosis if you only have mid-transverse colitis. UC starts in the rectum and moves upward without skipping, and your pattern sounds more like Crohn's colitis. It could change what surgery you should have.
Jan 
I was at the same point you were at one time.
I tried remicade.
It worked like a charm.
That's me.
I was so greatful for the time remicade took this all away.
I had to stop using it because I had a unrelated hernia surgery and I was told I could start it up after a certain time. But it never worked after that. But I look back on that and wish I stayed on it. No regrets using it and that was 15 plus years ago.
Good luck. I wish you the best and hope it gets no worse than what it is.
Humira and Symponi are also good options.
They never worked for me as I think they are similar to remicade. Biologics.
Richard.
I tried remicade.
It worked like a charm.
That's me.
I was so greatful for the time remicade took this all away.
I had to stop using it because I had a unrelated hernia surgery and I was told I could start it up after a certain time. But it never worked after that. But I look back on that and wish I stayed on it. No regrets using it and that was 15 plus years ago.
Good luck. I wish you the best and hope it gets no worse than what it is.
Humira and Symponi are also good options.
They never worked for me as I think they are similar to remicade. Biologics.
Richard.
Thank-you for your replies. I wanted to clarify that I have UC starting in my rectum to the point of mid transverse, 2/3rd's of the way. I never wanted to try immunosuppressants. I have never been in full remission since diagnosis. I am a nurse and have a lot of exposure to infectious diseases, plus i am a pretty "natural" person. Has anyone elected to have surgery without it being decided for them? Any regrets?
I elected to have the surgery after trying so many different medications with little to no improvements in my UC. There were a few other biologics I could have tried after taking Humira for one year, but I had pretty much given up hope that anything else would work. I really wanted the surgery and the timing worked out well with insurance, employment, and all the other various factors that went into my decision.
All that being said, my j-pouch is relatively new (4.5 months) and though I don't regret the decision to have a major organ removed, it is certainly not a walk in the park. Before surgery, numerous j-pouchers reported to me that their "worst day post-surgery was significantly better than their best day with UC." So far I can't say that's true for me, but I know that I still have a lot of healing to do. I am prepared to wait for as long as it takes to get to my new "normal."
Best of luck with your decision!
Emily
All that being said, my j-pouch is relatively new (4.5 months) and though I don't regret the decision to have a major organ removed, it is certainly not a walk in the park. Before surgery, numerous j-pouchers reported to me that their "worst day post-surgery was significantly better than their best day with UC." So far I can't say that's true for me, but I know that I still have a lot of healing to do. I am prepared to wait for as long as it takes to get to my new "normal."
Best of luck with your decision!
Emily
I had my surgery electively, and I have no regrets. Also, we have a few working nurses here who are on biologics. So far (unless I missed it) we haven't seen any reports of infections that seem to be biologic-related.
I am a nurse, but retired, so I see your concern. There are plenty of nurses who do work full time on biologics. But, that is a personal choice.
Biologics were not even available when I had my surgery and other immune modulators (Imuran, cyclosporine, etc.) were in experimental stage. I had colectomy because I was in a severe flare that did not even respond to high dose prednisone. I wound up in surgery on 80mg/day, which was not a good thing.
That said, do not have surgery solely to avoid medications. I wound up on biologics a decade post colectomy due to inflammatory arthritis. Been on them over a decade and had surgery while on them without issue. Stuff happens. You deal with it and move on.
Jan