I am sorry to hear that you are dealing with this too & I‘m glad that finding this forum offered some comfort. I thought I was alone in this too before so many people started responding saying they are having the same issues.
I’m so sorry to hear you had another episode and had to go to the ER! Hopefully you were able to get some rest today and are feeling a little bit better. I understand your frustration with all of this. I sometimes wonder if I would have chosen to have the jpouch surgery if I knew things were going to end up the way they are now. I think a lot of people who have jpouches do okay with them and doctors don’t want to scare us by telling us everything that could possibly go wrong but then it is really frustrating when things go wrong that you never expected. I don’t have any regrets because my choices were to stay sick with ulcerative colitis, have an ostomy forever or do the jpouch surgery and I couldn’t continue the way I was being so sick and I knew that if I opted for a permanent ostomy I would always wonder if life would have been better with a jpouch so even though I’m dealing with some really hard stuff right now, I feel that I made the best decision I could. If I could have chosen to be totally healthy & not deal with any of this I would have chosen that of course but it wasn’t an option. The biggest lesson I’m learning is how to accept my reality and make the most of it, it’s so hard sometimes but it seems to be the only way to keep moving forward. Have you tried reaching out to the Crohn’s & Colitis Foundation to find out if any research is being done about all of this? It would be great if someone was able to figure out better ways to help all of us!