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Hi everyone,

I've had a J-pouch for 15 years, with my diagnosis changing to Crohn's about 5 years ago. I've recently discontinued Remicade after an allergic reaction after ~5 years, and am looking in to starting up some probiotics again.

I don't think my insurance will cover VSL, so I'm interested in hearing any other recommendations for OTC probiotics, especially form those of you with a J-pouch & Crohn's situation.



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Thanks for the reply, Jan. I was doing well with Remicade, but my reaction would likely occur with other drugs of the same class.

In any case, I'm interested in hearing other's experiences with J-pouch + Crohn's + probiotics as a compliment to other treatments.

I want to know if any Crohnie Jpouchers have had good experiences with probiotics, and if so, which ones they'd recommend.

you can try drinking water kefir as it has more probiotic in it than a bottle of probiotics. I have a pouch with crohns also, and it seems to be helping me. I drink milk kefir too. so that is an option. I bought mine off ebay and have been making it at home ever since. Some people swear by vsl #3, but its MUCH cheaper to make my own probiotic drink. You could also look into lacto fermenting vegetables too. It's not very hard, and again, you can get a WHOLE LOT of probiotic that way also.

Huh - 1 capsule is a pretty small dose, so it probably isn’t the dose.

What *exactly* do you mean by constipation. True constipation is when the stool gets hard and that makes it difficult to eliminate. J-pouchers more often experience difficulty emptying the pouch, which is a very different thing. Is that what’s going on?

@George Shaikh The variables to consider: is the pouch actually full, or do you just feel like you need to go? Is the stool liquid, soft, or firm?

If you’re getting a sensation of fullness/urgency when the pouch isn’t full that can be a sign of pouchitis, and antibiotics would likely be the thing to try. If the stool is too firm then more water, psyllium, and perhaps MiraLAX are worth considering. If the pouch is actually full and the stool is soft then it’s sometimes pelvic floor/muscular issues, but pouchitis is also still a possibility.

I still don’t think it’s the probiotic. Have you tried psyllium?

Hello Scott. It is an urgency to go and the stool is soft. But I don't get much out. I do have pouchitis but the antibiotics Flagyl or Cipro then make it very hard to have bowel movements, even with half a pill per day and happens right away. The issue with the antibiotics has been for 15 years and my J-pouch was done in year 2000 in Toronto.

I take pysllium husk twice daily. That helps but I am still at ~12 bowel movements per day. I was at ~6 bm/day, taking imodium, 5 years ago and that was manageable.  I don't know what happened 5 years ago and neither does my G.I. This shit has ruined my life and put my job on hold.

Many thanks for your responses, George.

Do you have any sense of exactly how the antibiotics cause difficulty in pouch emptying? Do they make the stool more solid? Do Cipro and Flagyl both cause this? Have you tried even lower doses? Have you tried adding MiraLax? Have you tried other antibiotics? Is pouch emptying really just fine if you stop the antibiotics? Have other pouch emptying problems been ruled out (e.g. pouch prolapse, pelvic floor issues, etc.)?

If I stopped getting relief from antibiotics, after methodically trying all of the reasonable combinations and accommodations, then I'd move on to biologics. I don't think you'll feel right until your pouchitis is reasonably well controlled?

Both Ciporo and Flagyl make the stool more solid and very hard to get out. When taking even that low dose, I can't do anything. I have not tried a lower does of 1/2 tablet per day. I will start that and see how it goes.

I tried something like Miralax, did not help. Without taking antibiotics the pouch does not empty well, which leads to ~12 bowel movements. But with the antibiotics it is worse.

I did move on to biologics but they reduce my immune system such that I get about 3 colds/flu per year. And I got Covid last year which lead to long covid when I was taking biologics. I have tried different kinds. Given that I got long covid, my GI is not going with biologics anymore and I agree with him.

If the only problem the antibiotics cause is stool that is too firm for you to easily pass you should be able to control that, though you would likely have to tinker with multiple things. Some combination of increased fluid, increased fiber (psyllium or other), and perhaps MiraLax would likely work, though it’s hard to find the right dose of multiple interacting interventions. Good luck!

I had the same problem with higher dosages of antibiotics often thickening up the stool too much so that emptying became a problem. Fortunately, because I have been on Remicade for years now, I no longer need high dosages of antibiotics. But when I did, I didn't think Metamucil helped so much because it also thickened my stool. At one point we tried a stool softener/laxative. I can't recall the name of it but it was a clear very sweetish tasting, syrup. And I took very little of it (like a teaspoon) and had to scale down the dosage because it did not soften the stool but made it watery if I took too much. Even a teaspoon of it was a dangerous dosage as far as liquefying stool. Scott will probably know what I am talking about. I never did find a perfect balance on offsetting the thickening from antibiotics with loosening from other stool softening substances.

Maybe drinking some natural laxatives like prune juice would help. My Grandma used to always have a bottle of prune juice in her fridge to help with constipation and swore by it. It doesn't seem too popular now like it was before Grandma died in 1975.

Last edited by CTBarrister
@Scott F posted:

I think CT is referring to lactulose.

Correct! I found a powerful reaction from even a teaspoon of it.  My post was meant to suggest very careful experimentation with it starting at a lower than recommended dosage. I think they wrote the scrip as 2 tablespoons and this produced an explosive watery diarrhea. It was probably the recommended dosage for coloned persons. I remember going way, way below what the prescription dosage was, and still having a noticeable, pronounced effect from taking it. I think my bowels were sensitive to the med. It definitely worked, just a little bit too well.

Last edited by CTBarrister

It's helped to know that people still genuinely try to help. Although, we may not be a random sample.

Yes, I'll be careful with the doses of antibiotic and the psyllium etc. I like the idea of prune juice. I use to take prunes and they helped a bit. I think with the juice my system will have to do less work. I started on half a pill of flagyl this morning.

I'll try and keep you posted. Have pleasant day, George.

I've not taken packaged probiotic products, but I am taking Cipro and Tinidazole in low doses and I also have an issue with stool not being soft enough.    I suspect Cipro is the culprit. I did not experience this with Rifaximin. And for a brief time on Tinidazole alone my recollection is that stool was softer.  Have you tried other antibiotics?

Hello all. I started Flagyl with 1/2 a pill per day, which reduced the bowel movements but made going for a B/M (bowel movement) harder. I increased it to 1 pill a day after 4 days. It became a lot worse than without Flagyl. I stopped for 2 days. Then started same regime again for another week. Last 2 days on 1 pill of Flagyl have been horrible. Increased B/Ms (from 12 to 20), more leakage at night, and hard to have B/Ms. I am stopping for now. Even at 1/2 pill per day I was worse off primarily due to increased constipation.  I was taking pysilium husk and prune juice 3 times per day.


I did take Rifaximin last year and had the same issues so stopped.

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