Although some surgeons provide extended ongoing care for their J-pouch patients, most J-pouchers get care from a gastroenterologist. It can be hard to find a J-pouch-knowledgeable GI unless you are in the same area as at least one active J-pouch surgeon.

Accidents are one common sign of pouchitis, which usually doesn’t clear up without treatment (typically a couple of weeks of Cipro or Flagyl). I wouldn’t expect loperamide to help much, for most of the causes of accidents.

thank you for your response.  I have taken cipro and it helps but only when I'm actively taking it.  Not a 2 week round.  I actually took it for 6 weeks trying to get a skin rash under control and it helped til I stopped.  I do know that I need a gastro with Jpouch knowledge.  And I know they do the surgery at Ocshner Hospital in NOLA.  Hopefully someone on this site can give me a rec.

Hi!

Well, I hope I can help; I lived in NOLA when I first came down with UC, and had all my initial treatments there, including meds and surgeries. I had my initial pouch surgery there in 2011, so I can tell you who NOT to see as a surgeon—Dr. Sean Mayfield. He messed my pouch up badly, lied to me about his (in)experience with them, ignored my allergies, and I have suffered from his incompetence for years.

Ochsner wasn’t great either—I had to go there to clean up the mess Mayfield made (he was their former fellow), and the guy in charge of colorectal surgery at the time, who seemed very knowledgeable (has since retired), actually did the wrong thing to relieve my abscess. Instead of going in and cleaning it out through the abdomen/pelvis, he created a fistula from the pouch into the abscess, which is the exact wrong thing for a pouch patient, though it’s fine for normal GI patients. (I only found out how wrong all my treatment was when I made it to a real expert in NYC to fix the mess after my pouch failed pretty early.)

When I lived there, they really didn’t have the expertise they should have, though they will not of course tell you that. My Ochsner guy was actually the president of the colorectal surgical society nationally at the time. I trusted that he’d know what to do. He didn’t, though. And he and the others didn’t train Mayfield properly, either.

My best suggestion is to find someone who trained at the Cleveland Clinic for their colorectal surgery fellowship, although that’s not foolproof—I had one of those when I moved away from NOLA, and he was a dud as well. But perhaps the biggest name in the field, Dr. Feza Remzi, trained people at Cleveland Clinic for years. He’s at NYU Langone now and was the one who had to clean up the mess in my pelvis from what they did in NOLA. (I learned my lesson and decided I’d go anywhere I had to for the best care, after the debacle in NOLA.)

I did have a GI doc I liked a lot in NOLA. Daniel Raines at Ochsner Kenner. He was LSU faculty at the time, I believe, and my boss recommended him to me, saw him for other stuff. I liked Dr. Raines a lot, though he was the one who sent me to Mayfield. (I personally think you can’t know everything about whom you refer patients to, but you do your best. I told him how things went with Mayfield, so I hope he doesn’t send people there anymore.) For his part, he diagnosed me appropriately, took good care of me himself, and was good about personally checking in to make sure I was okay. He wasn’t so wedded to any one course of treatment that he’d stick to it stubbornly, either. He realized I didn’t go into remission on prednisone, so he stopped it after three months, didn’t want me to be on it too long. Same w Remicade, when it didn’t make any difference after two rounds. He is very practical and thinks about logistics, too; I would go to him again if I moved back there.

As for accidents, it depends on what kind you’re having, as to their source. If it’s because your food doesn’t have enough fiber in it, and you have runny stools, they can happen even without pouchitis. J-pouchers very commonly have frequent leaks of liquid stool because the anal sphincters are not as competent after the surgery. Sneezing, nighttime, even just sitting around, and we can’t stop them. But if it’s solids you’re losing control over, definitely see someone. GI to start with; they can do a workup and see if you have pouchitis or if it’s a sphincter problem.

I found that eating whatever I wanted (even w meds) created more problems than it was worth in my case, so I started balancing soluble fiber with the rest of my food, and it helped decrease the number of accidents/improve control. As Scott said above, loperamide can only take you so far. It slows down intestinal peristalsis, and that’s how it ‘thickens’ stool—by giving you more time to absorb the liquid. But it isn’t foolproof. I can’t eat thin soups in large quantities now—they stream right out, despite the meds. But if I have less broth all at once, incorporate noodles and veggies and meat with it, it goes down a lot better. If you don’t have pouchitis, you may just need to figure out some dietary tweaks.

I have a list of foods that are ‘helpful’ for myself—so I use those to help me be able to tolerate the ones that aren’t. Like, instead of eating just a couple of slices of pizza alone, I’ll have one smaller slice and a lot of salad or vegetable with soluble fiber, or else I’ll have runny stools that are harder to control. Some people use Metamucil or something like that as their go-to with every meal; I couldn’t make that work for myself, find it easier to use real food to control texture. Like, yogurt alone is a disaster. But add berries and granola made w whole grain oats, and that’s one of my best meals, the one I use the night before I have to try to go anywhere long distance in the car.

Best of luck to you in your doctor search—I’m biased that it’s really important to find a good one, because of my terrible experience in NOLA, and being a doc myself and finding that it certainly didn’t protect me from bad outcomes. But at the same time, it’s also terribly difficult to find good ones, because there’s no great way to figure out whom to trust, and the best you can do is crowdsource data, like you’re trying to.