They have a mixed response for some it helps keep pouchitis at bay, for some they don't work at all and for the rest like me end up producing ton of gas. For those it works usually they take it in very high dosage which is costly if you're not insured. My surgeon said they hardly work so I took his advice and just have some yoghurt now and then for good bacteria.

But if it works for you, you should definitely continue using them as they hardly have any side effects.

Visbiome (studied under the name VSL #3) really did reduce the frequency of pouchitis in the research subjects. As Raj points out, though, it’s expensive in the doses that were shown to have benefit. Your surgeon’s approach is much less expensive, and it might well do some good (though you’ll never know for sure). Some people never get pouchitis, or get it so rarely that a daily preventive treatment seems excessive. So an alternate approach is to delay probiotics until you have some evidence (i.e. a case of pouchitis) that preventive treatments have the potential for real benefit. One caveat is that pouchitis can creep up on you, lowering quality of life for months or years before it’s recognized.

If I had it to do over again (with the ability to predict the future) I’d do what your surgeon is suggesting.

I have heard of the preemption theory and you have nothing to lose except lots of money. You may never get pouchitis anyway.

It probably does not work in the vast majority of cases as treatment for active pouchitis. It does work for some people but it’s questionable whether those people are accurately described as chronic pouchitis patients. Some have one flare of pouchitis, get treated successfully with antibiotics then take probiotics and the pouchitis never recurs. To ascribe cause-effect in those situations is sheer speculation and not science. For truly antibiotic dependent pouchitis cases, most GIs have told me probiotics as an exclusive treatment for pouchitis is not likely to be effective. The probiotics are only as good as the formulation and amount and assuming that those strains will actually be a good target flora for the individual. Eating a lot of yogurt doesn’t hurt, and IMHO is just as likely to help.

I attempted cold turkey going off antibiotics and onto VSL3 multiple times, and each time I got substantially worse within a week. You run the risk of worsening the pouchitis by not treating it properly. Like Scott said it can creep up and slowly fester into something that constitutes major inflammation over time.

Where do we get Visbiome?  I have called a few Pharmacies with no luck.

Visbiome seems to be advertising here (see the right side of the page). Perhaps you could call them to ask who’s carrying it, or (if you’re not trying to get prescription coverage for it) you could order the non-prescription strength directly from them. The way I found out that Sam’s Club still carries VSL #3 was by calling the company.

Thanks Scott!

Probiotics seem to help keep me off antibiotics for reoccurring pouchitis.

You can order it right off the Visbiome website. 

For me they are a life saver!

This is an ongoing question isn't it? I sure don't know the answer but, for what it's worth, here's a bit from my experience. When I first had the j pouch created, I was put on a clear liquid diet as many are I'm sure. Jello, fruit juice and broth. I developed pouchitis with the first few weeks. A course of antibiotics cleared it and I started on VSL#3 as recommended by the surgeon. I didn't develop pouchitis.

I later had a diverting ileostomy and then was reattached after a year or so. I thought since I was starting out with a pretty empty pouch I would do it differently. I didn't have the juice or jello as I didn't want the first thing in there to be sugar. I had broth but also plain yogurt and thin oatmeal (Pablum) after a while. I also started a probiotic right away (not VSL#3). That was about a year and a half ago. No pouchitis. Just another anecdote I realize. 

JHendrix posted:

This is an ongoing question isn't it? I sure don't know the answer but, for what it's worth, here's a bit from my experience. When I first had the j pouch created, I was put on a clear liquid diet as many are I'm sure. Jello, fruit juice and broth. I developed pouchitis with the first few weeks. A course of antibiotics cleared it and I started on VSL#3 as recommended by the surgeon. I didn't develop pouchitis.

I later had a diverting ileostomy and then was reattached after a year or so. I thought since I was starting out with a pretty empty pouch I would do it differently. I didn't have the juice or jello as I didn't want the first thing in there to be sugar. I had broth but also plain yogurt and thin oatmeal (Pablum) after a while. I also started a probiotic right away (not VSL#3). That was about a year and a half ago. No pouchitis. Just another anecdote I realize. 

Thank you for sharing your experience  

I had constant pouchitis in the beginning due to antibiotics they gave me for an infection I got in the hospital. When I figured out it was an imbalance of gut flora, I started eating yogurt a few times a day and it finally cleared up once and for all. 

If I don't eat yogurt for awhile I can feel it trying to come back. I make my own, fermenting it for 24 hours, so sometimes I just don't have time to make it.

If I eat one serving a day now it keeps the pouchitis totally at bay. 

There used to be a gastro doc online who would answer questions for free. Very cool doctor who would get back to you pretty quickly.

He said it was best to get the probiotics from yogurt. Much less expensive too!

Many people don't care for yogurt, but they love it when they try mine. I ferment it for 24 hours, let it cool until the next day, then mix it with fruit and honey.

Sugar feeds the gut bacteria so store bought can hurt you there. But there is something about honey that doesn't feed the bacteria in your gut. Also, if you normally can't tolerate dairy, fermenting the yogurt for 24 hours uses up the lactic acid in the milk, making it tolerable to digest. 

-Roni* 

Hi Roni I'm familiar with 24 h yogurt as I used to make it myself. Very good stuff. Thank you for mentioning it. 

Hi J-Pouchers,

Had anyone used Mesalamine suppositories for pouchitis?

I just discovered this week that I have been forgetting to add my probiotic to my daily cocktail of meds (for heart and stroke related illness) and I have been having constant urgency.  I have not had any issues since I started taking OTC priobiotic (from Costco) about 5 years ago and was not sure if the helped / did not help, but figured it could not hurt.

I have now added them back to my morning cocktail and am hoping for the best!

@Lesandiego how have you been doing?

For those on visbiome what's the dosage that helps you? I have chronic pouchitis now. I just realized I made this post exactly a year ago today. 

@Andreita I used to take it 2x a day (morning and night) when I had chronic pouchitis, but now I just take visbiome 1x a day in my smoothies for general health maintenance.

It took me many, many years to get to a point of better health through learning about my body, but I think you can view pouchitis as like other infections... if your body isn't as healthy as it could be, you're way more susceptible.

Here is some of the routine I've found that has brought me from chronic pouchitis and blockages to being generally happy and healthy:

-wake early, drink water (perhaps with "lyte balance" if I wake dehydrated)

-walk in the morning, for as long as I feel comfortable, maybe even adding in a bit of light jog

-start eating at 10am (intermittent fasting helps so much with my general health and digestion, but do talk to your doctor)

-daily smoothie for breakfast or lunch. I try to keep what I eat mostly low fodmap. I make my smoothies thicker with some soy yogurt (my not L.F. exception) and take a glass with some ground psyllium seed before my smoothie. this helps a lot. I add LF fruits and veggies, collagen powder, a vegetable powder ("subi" brand), hemp seeds, almond milk, visbiome, and broccoli sprouts. This took me a lot of trial and error, but it had been game changing.

- drink herbal tea or salty miso soup between meals, stop eating at 5 or 6. Hydrate with water in the evening.

-a walk in the evening if I feel restless before getting to bed early

I have spent a lot of time, effort and money to get to adequate health, but it is so worth it, so keep trying!

Other things that may help you are psychotherapy (us jpouch folks have certainly had our share of stress and trauma), asking your dr for a nutritionist referral, making sure you get adequate sleep (black out curtains, good pillow).

Something truly life changing for me was keeping a notebook to keep track of what I ate, how I felt, etc. It's also great for to-do lists and to write out your feelings (stress is no good for your health!)

Last thing.. I grow broccoli sprouts in jars for cheap. You can look up the benefits of sulphoraphane online. Just a bonus ;P

I hope my personal experience can be helpful to you. In my (unprofessional) opinion, it is possible that visbiome is only a small part of what will help your chronic pouchitis. Better health definitely couldn't hurt any of us, so keep trying and see what works.

I ordered my Visbiome from Amazon. It came in a cooler with ice packs