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Hey everyone, I am a 21 year old male and have had a J-pouch for about 1 year and 3 months now. Things are slowly getting better. Emphasis on the “slowly.” I’m writing today looking for a recommendation on a supplement or product that soothes the intestines/stomach. Currently I take peppermint oil capsules, oregano oil capsules, and probiotics. These three combined help with discomfort and abdominal cramps, however I’d like to know if there is anything else that helps.
Thank you

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I’m not sure “soothing” is a clear enough target to get useful suggestions. Most effective interventions are intended to treat specific issues, and they work best when those issues are well-defined. Most J-pouchers have perfectly average stomachs - plenty are normal, and some have the various issues that plague stomachs. Things get more complicated in the lower intestine. General issues that can most commonly challenge J-pouchers (who don’t have a diagnosed problem) are hydration, gas and stool consistency. Perhaps one or more of these are issues for you? Many folks find fiber (e.g. psyllium) to be overall helpful - it will bulk up stool but if used in reasonable doses it won’t cause constipation (heck, it’s used to treat constipation). You could start off slowly and see how it goes.

If you further clarify the problem(s) I think you’ll probably be offered more useful solutions.

Thanks Scott for the reply. That makes sense, but it’s hard to pin point a problem for me. Pouchitis seems to be it, however I’ve tried all types of antibiotics, probiotics, fiber, and anything else GI drs have recommended. Also the stricture is a constant problem. The best I can explain it is that after eating, no matter what I eat, I get abdominal cramps, gas and bloating, and trouble completely emptying the pouch. I had a scope in November 2020 which did show pouch inflammation along with ulcers. I am in the process of getting a new GI doctor, and I’m thinking biologics might be the next step. I did remicade for a few months when I did have my colon back in 2019, which worked great until my colon burst. It’s all so complicated and hard to describe.

That’s a lot clearer, Pedro. You have two significant things going on, and either one alone could make you miserable. Regarding the stricture, do you know where it’s located? Has your doctor ever suggested that you self-dilate? For strictures at the bottom (exit) of the pouch regular (properly trained!) self-dilation can maintain the opening that you need, after the doctor dilates it. Whether or not you end up self-dilating, is it possible that you’re waiting too long between dilations, and thus getting backed up?

For the pouchitis, sometimes it’s “refractory,” and antibiotics just don’t work. Which antibiotics have you tried? I’m currently doing well on Cipro and Flagyl together, but I tried a bunch before I found what worked for me. If I’d been unable to find an antibiotic treatment that worked I’d have promptly started trying biologics. Pouchitis is just too unpleasant to leave untreated, even if finding an effective treatment is a time-consuming nuisance. The probiotics tend to work best in very high doses, according to the research I’ve read. I take 4 double-strength VSL #3 packets per day. It seems to be pretty helpful for me, and when I’ve reduced the dose I notice a difference. The probiotics are very expensive at those doses, though, but sometimes insurance will cover it.

Thanks again Scott for the reply, I appreciate it. Regarding the stricture, I am not sure where it is located, and have had three dilation procedures in the span of the last four months. I will talk to my Dr about self dilation when we have a follow up appointment if that is something she thinks would be beneficial.
For pouchitis, I have done cipro for two different 14 day rounds and it seemed to help but my tendons in my shoulder and ankles felt like they were going to explode so my dr advised to try something else. Flagly made me really constipated to the point where I had to stop taking them after a few days. Than was Tinidazole which I did twice, once for 28 days then 14 days but it didn’t seem to work. And most recently augmentin once for 14 days, and again for 14 days. Augmentin helped a bit, but the good feeling only lasted about a week, and I don’t want to overdue the same antibiotic. What other antibiotics do you know of for pouchitis? Also what is your experience with biologics? And for me personally, I have tried VSL probiotics and they made me feel worse, for some reason lower dosage probiotics help me more. I use a generic store brand that is only about 10 billion live cultures.
thanks again

@PedroMadruga Another antibiotic that might be worth a try is Xifaxan (rifaximin). It tends to have fewer side effects because it isn’t systemically absorbed, but it’s very pricey. While it’s best to rotate between several antibiotics,  that’s only an option if you find several that work (and don’t create unacceptable side effects). They can lose efficacy over time, but at least in my case that concern is insignificant compared with feeling well. I used Cipro alone continuously for about 6 years with excellent results, and for the last 7 years I’ve used Cipro in combination with Flagyl.

It sounds like you probably have chronic pouchitis. Chronic pouchitis usually needs to be treated continuously, not in 10, 14, or 28-day courses. Doctors who are unfamiliar with this shy away from it, since for most diseases continuous antibiotics are avoided.

If the antibiotics all fail *with continuous use*, or if they create some other concern, then biologic medications are usually the next step. Plenty of folks here have transitioned from antibiotics to biologics, often with excellent results. I’m not there yet, but I know it’s a real possibility in the future.

If you have chronic pouchitis but your doctor won’t treat it continuously then you may need to look for another doctor. I’m assuming that you’re seeing a gastroenterologist rather than a surgeon.

Thank you both Lauren and Scott for your replies. My surgeon who created my J-pouch and my GI doctor work in the same team together. I am however in the process of changing GI doctors. For these long term antibiotics, what is the usual dosage and how often are they rotated?  

Your welcome honey!! Be careful with staying on antibiotics for long periods of time, it can cause CDIFF, just be sure to get probiotics in you but spread the probiotic and the antibiotic apart at least 2 hours

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