The research says that VSL #3 works well al preventing pouchitis (or at least reducing the frequency), but it's generally inadequate to treat an active case. I guess it's worth a try if you're strongly opposed to a course of Flagyl or Cipro (usually 10-14 days). Antibiotics really do work much better as the first step.

Thank You so much for your response. First episode of pouchitis just feeling a little down anout being "sick" again. Concerned about more chronic issues.  I was hoping this was all in the rear view mirror😔

My understanding of the research is that VSL is effective when Pouchitis is in remission. So that would require getting it under control with antibiotics and then taking it. If one has chronic pouchitis then the VSL is not very effective. I found it worked best by using it as suppository. 

I find VSL helpful even while I take my chronic antibiotics. I think JLH means enema rather than suppository; it makes intuitive sense that it should work that way, but there is very little evidence for it.

meant it as suppository.  use the capsule form and pop it in.  research has said that if in remission vsl helps, but not effective if pouchitis is flaring.  jlh

Thanks, JLH - I forgot about the VSL capsules! There's plenty of research about VSL used orally, but not much about using it rectally.

I would agree.  I've been on VSL#3 DS for a year now.  It doesn't help cure pouchitis, but it does help to keep things in balance.  I'm dealing with my first bout of pouchitis since I've been on it, still taking it with my antibiotics, and hoping that the VSL will continue to be a benefit to me.

It's questionable whether VSL#3 is of any utility if you are taking it with antibiotics, as the antibiotics will likely counteract it and even if it didn't, you would not know which is helping if your symptoms ameliorate.  The only times I attempted VSL#3 was after going cold turkey off antibiotics, with disastrous results.  It was/is a complete zero, although if I could ever get pouchitis in remission through Remicade, I would think it could have utility in maintaining a remission.  As a pure treatment, I think it's worthless- an enormously expensive placebo.

VSL is no placebo, and it *sometimes* helps under the conditions CT dismisses. It helped me stay off antibiotics for a at least a year, and is clearly helping me while on antibiotics. The evidence for this is that when I reduced the VSL symptoms appeared, and when I resumed it symptoms went away. "Antiobiotics" are a category of medications, each of which behaves differently. No antibiotic kills all (or even most) bacteria, so the one you happen to be on might not disturb the VSL bacteria at all.

Scott- do you take 1 or 2 a day?

I take four VSL #3 DS packets per day. That's the maximum dose on the labeling, and it retails for over $600/month. So far it's been covered by insurance, but not without a fight.

 

Poucho, I first appealed to the insurance company. After that failed through a couple of steps I appealed to my state's insurance administration, based on medical necessity. That was eventually successful, but altogether it took almost a year. I'd be happy to share the general parts of the appeal letter, which included footnotes from the medical literature.

 

The scary part was that I kept taking it during that year. I think that may have made the case more persuasive, but it was a significant financial risk. Also, if they had used qualified people to fight me they might have won, but the people involved were (astonishingly) unaware that the single-strength product is available OTC.

Scott, that's great to hear about that success. I had to give up on vsl3 because of the cost. I'm currently taking align after a month on Cipro, but I know vsl3 is supposed to be the best.  When I tried it I found it unsavory - how do you manage 4 packs/day?

 

also, ditto to what ppl have said about treating vs. preventing pouchitis With antibiotics vs probiotics.

At home I mix VSL into some Greek yogurt, and generally add some blueberries and whatever flavor of preserves I'm in the mood for. I use two packets at breakfast and two before dinner. I find it just about undetectable in yogurt. When I'm travelling I sometimes mix it up with Metamucil (orange flavor with sugar), which I take on the same schedule. It doesn't taste that great (kind of like the world's worst Creamsicle), but hey, it's medicine, not snack food.