Posted 9/13/2020 10:04 AM (GMT -6)
I knew I didn't want to take steroids ever again. That made the decision easy for me. I was carrying a lot of extra weight and I hated the way I looked. I didn't want to commit to a life of being overweight and the struggles associated with that. Granted, I was still average size by medical documentation, but the weight looked terrible on my petite frame...
I have been very lucky, no issues since surgery. The surgeries themselves weren't easy and the loop ileo was the worst, but the end ileo was quite easy. If you do a one-step to a proper end ileo, you might end up very happy and feel like you've gotten your life back. One thing you might want to try is wearing a ostomy bag under your clothes to see how you feel.
Ostomies have their challenges, as do jpouches, as does living with uc. Ostomy can make noise, fill with air, need emptying at changing at inconvenient times, requires supplies... Jpouch, you go a lot and people have issues with looseness and anus burning, I clean the toilet a lot but I did that with uc too. With uc, it's drugs, doctors, expenses associated with those things... Uc also means unpredictable, potential for accidents, pain, symptoms, frequency, cramping... They all have ups and downs but living with uncontrolled uc, and steroids, for me, wasn't something I was willing to do. Good luck and let me know if you have questions.
Another thing to think about is age. Surgeries and healing only get more difficult as you get older, so if you think it's only a matter of time, might as well do it sooner. I always felt like I was headed to surgery, and I am sure if I had somehow squeezed my way out of my last flare up, it would have only brought me a short time of remission, then I'd be back at it without anything working and back on steroids and overweight. Not how I want to live my life.
Living with UC there are some positives. The potential for a cure, or a long remission, new drugs. You have to be willing to accept never being back to 'normal' to have surgery.