Been doing so good. I had some weird episodes over the past couple of years that felt like my pouch would twist and cramp like a charlie horse just INSANELY painful. Well it happened a couple times then would stop after 15 minutes. Nobody could figure out why and thought maybe gas.
Fast forward to two weeks ago. I got one in my lower left side of my bowel so not in my pouch. It was the worst ever! Felt like my bowel had an alien twist it and it popped. It lasted about an hour, no idea what labor feels or sounds like but I would think this was worse. By the time my ride to the ER go to me it mellowed out. days later I had acute pain in the super low part of my abdomen. I thought maybe it could be a hernia. Well nobody is certain what is going on, still feels like it wants to happen and I hold my left side tight when I go to the bathroom with a lot of anxiety.
Got a CT done and my lymph nodes have nodules in my mesentery so I am going for a PET scan and biopsies. They think it is desmoids but either way it is not good. My fear is I would lose my pouch, but guess I can't jump to the worst case scenario just yet. My GI isn't sure it is cancer since my blood work is good across the board but is still thinking it looks bad. My Oncologist didn't tell me it was in my mesentery. Read through this interesting article
I honestly rather die than live with an ostomy bag so I hope this thing can not be an issue and mess up my pouch! 
