Hi,
I wonder if anyone could help me as I am at the end of the line regarding my pouch. I have had my pouch for 10 years and it's had a few problems along the way, but over the last year I have had real trouble emptying my pouch and severe rectal pain. I have had numerous eua's into my pouch and have tests done to watch the emptying of my pouch. They confirmed that my pouch wasn't emptying as it should. I then got referred to a gastro team who taught me how to use an irrigation set. I am supposed to use this nightly with 500ml of water going into my pouch. Not only does this cause stomach cramps, but it makes the pain in my bum worse. (Obviously not to mention it's embarrassing and time consuming). The pain in my bum is unbearable. It literally sends contractions of pain through my whole body and makes me want to empty my pouch there and then. If I am near a toilet this is good, as it means my pouch will empty (with pain), but if not near a loo, the pain is unbelievable and I have to stop and grit my teeth till the pain passes! Sometimes I need to empty my pouch and can sit on the loo for half an hour, but all it makes my body do is heave and then when I do finally empty, my body shakes with the pain. I do get a couple of good days a month, but that's it. It is taking over my life and as a single mum to a 13 year old boy, it's hard! My surgeon has talked about removing my pouch and a permanent bag, but I'm trying to hold off for as long as I can. Has anyone experienced anything similar or can help me in anyway? I am willing to try anything and wNt to explore every avenue before I have to set my mind on having it removed! Thank you x