Although I have browsed this post over the years, this is my first post here, so hello all!
I have had a J-pouch for about 25 years and just lived with the results. Every 2-3 years (NHS - UK), I get checked with a pouch-oscopy, which has consistently shown mild pouchitis. The last test 2-3 years ago showed terminal ileitis too. So I received some antibiotics for a few weeks and had a reference point for how good the pouch could feel for the first time. The antibiotics stopped, and the symptoms returned.
Below I will characterise my symptoms. Even though it is a sliding scale, there are three main sets.
A) 1% of the time - Very Good. Stools are well formed, there are no feelings of having to push, and the pouch feels empty. It needs emptying less frequently, to 6 times daily. This was just after two weeks of Cipro & Metro and a revelation
B) 95% of the time - Average. On average, go to the toilet 9-10 times daily, mixed consistency, from solid paste to diarrhoea. More urgency as well as often having a feeling of having to push. More gas, smaller deposits.
C) 4% of the time - Poor. Visit the toilet 10-15 times daily, real urgency, small amounts, constant feeling of pouch not being empty, cramps and pushing whilst on the toilet. Diarrhoea, accidents.
I have lived mostly at level B) above. That is normal, and I never knew otherwise. I have a high tolerance for pain and discomfort. My main worry is that I may put the pouch in danger by putting up with B), and it is more likely to go wrong. The big fear is colo-rectal cancer.
What is normal for one person is not for another, so I would love to hear if you have a middle ground you put up with and what level that is. What would you consider a flare-up? Should I be more concerned with chronic mild pouchitis with the B) symptoms above?