I was curious what dosage of probiotics those with j-pouches are taking. I realize everyone is different but, I figure our average dose would be much less than a "normal" person with more plumbing . I recently tried one probiotic tablet daily with 50 billion cultures and and it bothered me. Instead of trying fifty different pills (they are expensive) I was looking to see if there was a commonality among pouchers. 

Thanks!

John 

 

Original Post

Johnny, there is lots of variation in this community. Those who can get insurance coverage for it usually choose VSL #3. The double-strength version requires a prescription and has 900 billion CFUs per packet - almost 20 times stronger than that tablet. I take four packets per day, which is very, very expensive. Some folks choose the similar (and similarly expensive) Visbiome, which recently won a legal fight with VSL over which one was really studied under the “VSL” name.

Our average dose isn’t lower than that for a coloned person. The research seems to suggest that a higher dose may do a better job at preventing (or delaying) pouchitis. But if it bothers you (and that doesn’t clear up in a few days) then the research is less important that what your body is telling you.

Hey Scott, thanks for the reply and info. I guess my theory was off regarding pouchers vs. non-pouchers! I've had pouchitis several times over the years, but luckily it hasn't been a huge problem for me, so I don't need anything that strong.  The 50 billion culture pills upset my stomach, gave me gas and caused me to go more than usual. My main goal with the probiotics is to prevent, as best I can, I the onset of pouchitis. I bought the probiotics from CVS, so I guess I'll look for some with a lower dose.  I think I saw some that were 20 billion, so maybe I'll give those a try.

Thanks again,

John

I had success with Bio K. It comes in tablet form, but I preferred the drink. It tastes good, similar to thin yogurt. It is fermented milk, it comes in flavours of blueberry, strawberry, plain. Taste good! It comes in a case of twelve very small containers, or half dozen. Usually in health food stores, or try Whole Foods. Each container has fifty billion cultures. You can drink half one day, close the foil lid and save the rest for next day. I don't need it anymore, but I think it cost approximately thirty to thirty five dollars per case. The numbers on my keypad is not working, so I'm spelling out figures, sorry!

Johnny, this is a difficult topic.  There's no point in having a strong probiotic of it never reaches the gut.  A strain of probiotic is probally the same between brands, the difference between the expensive and cheap brands trends to be the delivery method.

 

Basically, you need a buffer mixed into you probiotic so it didn't get destroyed in your stomach (many do).  And you need the buffer not to be so effective that the probiotic didn't activate in the gut, otherwise it passed right through.. 

 

To complicate matters further, our anatomy is slightly non standard which affects transit times too.

 

This is why VSL (which is dry frozen btw) is the only probiotic that's been tested to work for pouches. It cost then a lot of money to prove the delivery method was just right for pouches.  I've never used vsl3, so I'm not giving you a sales pitch  I provided links to research in previous posts on this site, which shows 2 or 3 products reach the gut, but others don't (note this is normal gut not j-pouch, and only a handful of products were tested)  from this research I decided to use a liquid based probiotic which was proven to reach the gut (again the research was not done on j-pouch) but at least I know it gets there which is half the battle lol.

 

What I'm saying is, if your comparing probiotic based on strength, your missing the point... Don't fall for the sales patter xxx billion.. look for some evidence that it actually colonises the gut.  If there's no evidence, then it's likely never been tested, so how do you know it works?  It's complicated to get delivery right.  Dry frozen is perhaps the most stable form (liquid needs to be kept chilled etc) but harder to deliver because it had to activate at the right time to colonise the gut.  So not only does it have to survive the stomach, but then activate in the pouch for long enough to colonise.  Liquid solutions are already active, so if it survives the stomach it stands a better chance of colonising.  I'm afraid you need to make a decision on a product either on people's testimonials (which is tricky at best), or documentary proof from the company itself.

 

As an example, I took a dried frozen version of a popular probiotic for years without considering this.  In the study I referenced earlier which compared several products, the version I had been taking didn't reach the gut in any significant volume in any test!  They concluded that single strain yoghurts were actually more effective than my probiotic.  

 

By all means try the products you found, but if it doesn't work out could just be a bad product rather than the probiotics not working for you.

 

I am one of the fortunate ones who has been able to get VSL#3 DS paid for by my insurance. But this week I tried to get a refill of my prescription and my pharmacy told me that they were unable to get it and they didn't know if or when they would. Has anyone else had this problem, or heard that there is a problem with this probiotic?

The manufacturer reports some supply problems:

“Is VSL#3® still available for purchase?

Some pharmacies are unable to obtain VSL#3® due to a temporary wholesaler supply issue. There is no manufacturer recall and VSL#3®continues to be available in retail pharmacies. In addition, customers can purchase VSL#3® Capsules and VSL#3® Unflavored Powders directly through this website by clicking here.” (Not sure if the link to the VSL web site will work as posted)

There has also been a recent legal decision suggesting that Visbiome is the original formula that was researched under the VSL name, and that the product currently marketed as VSL is an imperfect copy of that formula. Nevertheless, I continue to take VSL, because 1) My insurance company would likely make my life miserable if they learned of the issue, and 2) I think VSL is probably close enough for my purposes.

would it be effective to just drink kefir.  Will that provide me with billion of strains?

I am taking  VSL#3 capsules right now but also was told by CVS that they probably wont carried any longer.  I am just disgusted.  Like I don't spend enough time and money on researching whats best for my pouch etc.etc.

 

 

 

Kefir is very different from VSL #3, and hasn’t been studied in J-pouchers, so no one knows if it’s likely to be effective. Even trickier is that we have a variety of ideas about what effect we’re looking for, and the most likely, demonstrated  effect (less frequent pouchitis) is extremely hard to measure for a single person.

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