I have had my j-pouch for 16 years and have had pouchitis for the same amount of time, although I've only just diagnosed it. If you, like me, can't pass wind unless you lie down or sit reclined with your legs up, you have pain in the backside, mainly around the anus, and running down your legs, you feel like you could go to the toilet all the time, your bottom and stomach cramp up when you really need to go and then it all gurgles and goes away for 5 minutes until the next bout - repeat until you finally seek the solace of the Devine toilet. Yes, yep and yer you have pouchitis!!
I've had all the tests done and they all come back that everything looks fine. However, they do say that it is slightly inflamed or slightly this or that but nothing obvious. It is blooming obvious to me however! When you wake up after 2 hrs sleep and need the toilet and then can't get back to sleep because you are waiting for the meds to kick in.
Diet is a big factor, if you don't believe me eat a nice big pizza or tomatoe based pasta dish with lots of preservatives and then see what happens!
Currently, I am playing around with meds and diet. Best results seem to be psyllium husk and loperamide 1/2 hr before eating. Then fresh food, meat and two veg. Washed down with some pepto bismal.
This is a brilliant site and I will be donating some money shortly to keep it going as it is the only site I've found where people know what they are talking about! On that topic here's what I've found so far (copied from my note pad):
J-POUCH