Hi Laura,
Approx 6 months after takedown (after my j pouch had been functioning fine) I started going the toilet in excess or 20 times per day and in excess of 5 times a night. It’s was quiet explosive and I was really sore down below, due to the fact of how many bowel movements I was having. I could hardly leave the house at times because of this. I went to my consultant countless times over a 5 year period. Only to be told by him “ I should be grateful I’m alive” and “count myself lucky I haven’t got chrons disease” and to give him the word and he’d give me permant bag. My mum suggested getting a second opinion (something I would never of thought to do). My GP referred me to a different consultant and hospital (Royal Liverpool) and I haven’t looked back since. He scoped me and showed me a picture of my pouch, which was riddled with ulcers. I was then diagnosed with Pouchitis. I tried a few different antibiotics, which didn’t seem to work that much. I was then put on Invanz, which is usually taken IV. I make it up with a syringe and sterile water and then take it orally ( it gets to the gut quicker this way). My new consultant said this has only been trialled on a few patient, but they had had fantastic results. That was 3 years ago and I haven’t suffered with Pouchitis since, it completely cleared it. I am still on it now and its still working. I now take it every other day, as I’m worried a may become immune to it and stop working. I have ran out a few times and not taken it for about 5 day’s max and I’ve noticed a change with my pouch, frequency and urgency increasing again. Although not sure if that’s just me stresssing, as I’m so scared of the Pouchitis coming back and going through the same again.
Thank you