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.

I take Visbiome which is the original product. I don't specifically buy the double dose but taking two packets in the morning every day helps keep pouchitis at bay for me. I buy it directly from their website and I pay for it myself.

It may be worth trying before getting rid of it. Sucks to hear that your diagnosis changed 😕.

Scott,

Do you take the Flagyl and Cipro all the time in addition to the VSL? Have you been taking those Anabiotic’s the whole 13 years too?

And if you don’t mind my asking how many BM’S do you have in 24 hours. Right now I’m at about 14

thanks,

Dan

I take Flagyl and Cipro every night at bedtime, well spaced from my VSL at breakfast and dinner. I’ve been on Cipro since 2008 and Flagyl since about 2015. I poop about 5-6 times per day and only rarely get up at night.

5-6 Man that’s great. Did your insurance company cover it when you first used it or did you have to fight right away?

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.