In all my years of pouchitis on and off, I never had bleeding. It isn’t that common, but it does happen if the pouch is really pissed off. Bleeding is more common if you have cuffitis to go with it... Anyway, bleeding is not a requirement for it to be pouchitis.
Pouchitis, on the other hand, is super common and is a possible cause of your symptoms. When the pouch acts up or the bowel is inflamed from something, it can’t absorb water (just like when you had colitis). You have looser stools with more volume, and it’s not easy to hold it in like it would be with a more formed stool. Ergo, runs and troubles.
Pouchitis usually comes with cramping pain when you need to go, or tenesmus. It’s super unpleasant, and usually pretty clear to diagnose, if you have this...
Some people improve greatly with probiotics—higher doses than on the bottle, and taken daily/multiple times daily. I was always able to stop my crazy bouts of pouchitis with probiotics.
Dietary modification if you notice triggers can help. Dairy, sugar substitutes, fruit juices, and other high osmotic loads can set you off. You can develop an imbalance of the small bowel bacterial flora that causes this as well.
When that doesn’t work, antibiotics are a next step. Beware, though—Flagyl is horribly nauseating for some and can cause neuropathy. Cipro is associated with long term problems also. For short courses, they are probably worth it, but not always in the long term. That’s ignoring the problem of developing resistant flora, too. There is always rifaximin (Xifaxan), which doesn’t get absorbed into the body, and just kills off everything in the gut so you can repopulate it with better bugs. But these only work if you have SIBO or pouchitis.
If you don’t have crampy pain with your need to go, it may be something you’re eating, and not true pouchitis. Beware the GI who wants to scope first and ask questions later... I don’t know about you, but I’m getting tired of everyone wanting to stick things up there!!!
Oh, and sometimes you’ll find that there’s a ‘magic food’ that helps the runs stop. Mine was fried rice. I never liked fried rice until I got it one day by mistake, and it halted my bout of post-pouch diarrhea... then it became my ‘rescue meal’ for whenever something else had thrown my gut off kilter. Very useful when traveling to have something reliable you know will help you get back to your baseline. I’m not saying it wasn’t bizarre that fried rice helped me—but who am I to argue with something that worked every time???
There is something else, by the way, that doesn’t get discussed much. It’s called irritable pouch syndrome, because it reminds people of IBS. No one knows what to do with it/about it. It’s when you don’t have pouchitis, so no crampy pain when the pouch fills up, but you are going all the time with urgency (that ‘right now’ feeling) despite the usual meds and a normal scope... it sucks, basically, because no one knows what to do for it right now.
Anyway, good luck, and I hope you get sorted out soon.
