Did anyone develop this and if so, what were the early signs?
I've had my pouch since 2011 and while there were a lot of complications to get there, once it was over I ended up doing very well. The pouch is still objectively pretty good. I actually have semi formed stools and don't go to the bathroom very much at all relatively speaking - like 2-5 times a day.
While this is still true, I've had some puzzling symptoms. I would get these INTENSE cramps that would last about 5 to 6 hours. It happened only in the Spring and Fall. I blamed it on school stress since I was home in the Summer. At first I connected it to the fact that I'd had milk before all of the episodes. So I stopped drinking milk and was in the clear for a while. Then it would happen after drinking soda - I blamed the carbonation and stopped drinking that and was okay. Then I ate some dried fruit and it happened again! The pain is awful, and I can't stand up straight when it's happening. I burp and fart but not much. Once I threw up and immediately felt better so I thought it was stomach acid. But even the most potent antacids do not help.
I realize that dairy, carbonation, soda, and high fiber/low water content foods are all risky as it is. But, now I feel like I've made enough bad diet choices that I've set something into motion that I can't stop. It hurts now and I haven't eaten anything since last night and it's 11am. It's granted only 1/10 the level pain I have during a real episode, but I can still feel like something isn't right.
I also had some blood come out of me, but my period is also coming and I can't tell where the blood is coming from. My poop seems normal otherwise. No diarrhea, no fevers, nothing else.
I don't know what to do. My life was nearly ruined by ulcerative colitis and the j pouch let me finally go back to school and fulfill my dreams at 38. I do not want this taken from me, too. I'm only a year into my PhD - haven't even gotten to start my lab research yet. I don't want to have to start the hospital life again and never get to pursue this dream. I don't want my husband to divorce me because he's tired of me not being healthy.