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Hi folks,


I’m sure there are plenty of discussions of this in the archives, But I would like some recent information if possible. Has anyone tried VSL three double strength for pouchitis? Has it worked? How did you pay for it?

I’ve had my J pouch for 21 years now. For the last four I’ve been suffering from pouchitis. I am most likely going to have the pouch excised, But I wanted to try the probiotic one more time. Anyone have any experience? Also may be some relevant information is that I was originally diagnosed with ulcerative colitis. During these last four years of misery they have decided that I really have Crohn’s and there is inflammation 30 cm above the pouch. Any info would be appreciated.



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I’ve been using VSL #3 DS (900) for 13 years. I take four packets per day, pretty much a maximal dosage, which I find helps keep chronic pouchitis under good control for me (in addition to Cipro & Flagyl). Once my insurance company - CareFirst Blue Cross - stopped paying willingly some years ago I spent a year fighting them through my state’s insurance administration. They finally reimbursed me retroactively, and now I submit a claim (and receive a check) every month.

In the beginning the coverage was automatic for me, but that was a long time ago. Most insurance companies seem to have tightened up.

The coverage policy ruling my insurance company finally wrote names VSL #3 specifically, so I have shied away from fussing about Visbiome. OTOH most pharmacies still seem unable to order VSL #3 DS (900). I get it at Sam’s Club pharmacy.

I'm on low dose antibiotics (Cipro and Flagyl) combined with probiotics for 3 months now. I take a simple probiotic supplement (20 stems, 20 billion CFU per 2 capsules after breakfast, wich is much less than 900 billion in VSL#3 DS).

But it has been the best time in 17 years since I have my pouch. I have 4 to 5 BM per day with hardly any urgency. I used to have those two antibiotics only in emergency cases (at hospital) for many years with my j-pouch.

It has only been for the last two years that I took them regulary about once per month for 5 to 7 days. As chronic inflammation always returned within a week, I'll now try and stay on a low dose treatment. Thanks @Scott F at this point for sharing his meds scheme some time ago. Mine is similar now, though I have to add one capsule of Entocort per day to steer clear of cuffitis.

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