I have been dealing with UC for a little over 10 years. Was diagnosed when I was 20. I have bounced around with every medication possible for UC and some keep me on the fence from not feeling terrible but not feeling great. On a good day I might have 3-4 BMs a day but still most of them come with quite a bit of urgency. Then I also have my bad days where the BMs could range from 5-12. I am at the stage now where I am back on Remicade and I also take 15 mg of Prednisone a day and like a said keeps me on the fence but still have the urgency factor when I need to go. I also take 2-4 pills of Imodium a day just to get through the day.
Its looking more and more like surgery might be my only option at this point but I am terrified of being stuck with a colostomy bag for the rest of my life. I am not trying to paint a bad picture about colostomy bags, I just live an active lifestyle and just don't want that for my life right now. My dad was diagnosed with colon cancer in March of 17 and had his colon removed and has a colostomy bag but I feel as though he is at a more comfortable stage in his life to have one. (He also had UC) I have been doing a lot of research on the J-pouch surgery and I see a lot of positives and negatives with it. I feel like with my luck, I will develop pouchitis and be force to have a colostomy bag (which is my worst fear at the moment to proceed with the J-pouch surgery).
So I guess I am just looking for some advice/experience with the J-pouch surgery. The biggest thing I want back in my life is the ability to control my BMs. The urgency is a consent worry. I find myself excluding myself from joining friends going to events/road trips due to the fact that I know I might have an episode where I need to go and no where to go.
Another factor that would be nice about the J-pouch is that it sounds like you can return to eating normal again? There are a lot of foods/drinks that we all have to avoid and it sounds like from what I read that you might get some of this back with the J-pouch surgery? I also workout pretty regularly and would like to gain muscle weight but with UC its very hard to pack on the weight when the more you eat the worse you will feel or more BMs that you will have.
I also have been diagnosed with PSC of the liver. Wondering if that plays a factor into the J-pouch surgery at all? My dad also had PSC of the liver and has had two liver transplants to correct it.
I am just reaching out for any experience bad or good and get some advice. Thank you for taking the time to read this and respond. You can only learn so much by talking to doctors. Real life experiences are much more helpful.