I use probiotics (VSL) intensively. I think it kept me off antibiotics for a year or so, an now I figure they might reduce the frequency and severity of pouchitis, and perhaps diminish the antibiotic side effects. I don't have any proof, though.

Probiotics do not prevent all pouchitis. The few studies that are out there show only that they increase the time of remission, and that was only with VSL#3. Other probiotics mostly just improve function for some people. The idea is to have a more consistent day-to-function, not prevent pouchitis forever.

It's sort of like saying, "I drink milk every day, but I still broke my leg, so what's the point of drinking milk?"

But, I get what you are saying, and it could be that for you, it's not worth the bother. It is not as if probiotics are mandatory. I went years and years without them. I finally resumed them for more subtle effects, like less gas. And yes, it is perfectly fine to experiment to figure out which ones make a difference for you and which ones don't. But, you need to stay on one at least 4-6 weeks before giving up and moving on to another.

Jan

Thanks, to both of you - I doubt if I'll go on VSL, just too expensive, but Jan, I noticed somewhere that you take two probiotic - wondering if you are still on Aleve and the other one as well? I noticed that there are two different colors on the boxes - on has a green bottom and the other an orange one (I think) do you know what the difference of both of them are as I think I will finish up what I have and switch probiotics to see if there's any change in how I feel....your advice is always so much appreciated - thanks again!

I presume you mean Align, which is a probiotic (bifantis), not Aleve, which is an NSAID! I actually stopped taking that one, but my husband still does. He takes it twice a day. But, he has IBS and UC, and he notices a difference if he does not take it or reduces the dose. Basically, it allows him to eat foods that normally cause a churning gut.

For a while I was taking Align and S. boulardii (probiotic yeast thought to help keep C. difficile in check). Got tired of taking two different big capsules. Then I switched to Benebiotics (now called Nexabiotic), which is a multistrain probiotic mix that included S. boulardii. I was getting it on Amazon through their subscribe-and-save program, but it was pulled from that recently.

So, soon I will be starting Garden of Life Primal Defense, which is available from Amazon's subscribe-and-save program. It is also a multistrain blend and includes S. boulardii. I have no idea if it will be as good or better than the other. I've also tried Culturelle and Florastor in the past and could not see any difference.

So, not sure if that helps or even makes it more confusing. It is fine to see how it goes without them. Not everyone takes them. It is a mixed bag.

Jan

Thanks, Jan....so funny, I didn't think that Aleve was right, and did mean Align and was coming back to say that that's what I meant - long day at the office!

All good advice - wondering if each time you change to a different probiotic if you also get gas again? I remember when I started PB8 and Culturelle how uncomfortable I was.

As for getting confused...yup, I am. Maybe I'll just stay with what I'm on and stop eating so many sweets. I think I saw in an old post of yours that it's good to change them around....talk about confusion!

Yes, not eating so many sweets is probably easier than trying to figure out probiotics!

My kids would say, duh!

Jan

In case it matters, many insurance companies cover the DS (Double Strength) prescription-only form of VSL #3. Mine does. Some here have reported failure, though.

I've tried and gone through the steps, of trying to get my insurance to cover it but with no luck. I think that I will try to stay off of sugar as much as possible - I'm still not sure that it's pouchitis. If I'm not mistaken, it started when I became a dark chocolate fan and have devoured a bar each night before bed. Jan, your kids are right, DUH!!

Still on the Augmentin and will be for at least another week or more. I guess I'll have to make some decisions then.

Thanks for all your suggestions.

So now I'm wondering again, a bit of leakage again last night even though I'm still on the augmentin. I had a piece of 100% whole wheat bread at dinner since I've been staying off of all white products and wondering if that could have been the culprit. Did have problems going before bed and know that I didn't empty...is this still a sign that I might have pouchitis or a bacterial overgrowth? Still taking my probiotics as well. Any thoughts?

Check your "whole wheat" bread label. Most bread still includes flour and some source of sugar. In fact some still use high fructose corn syrup as their sugar source. Whole wheat isn't always "healthier."

When I had that feeling, I had narrowing of my outlet.

Thanks, Rachelraven - it's 100% whole wheat made with honey. Maybe it was just a quirk. Hope so anyway!

As soon as you start saying no to sugar and carbs you will start reducing the SIBO situation that results in pouchitis. This is what Dr. Shen has been preaching. Just because it is honey rather than high fructose corn syrup does not make it better for your pouch. Giving up all sugar is what is best for a pouchitis situation. Granted I do eat natural fruits which have sugar in them but nothing with sugar or honey added. And giving up honey was very hard for me. I went through a 40 ounce jug in 2 weeks before I gave it up. But I divorced honey and although the divorce was painful, I am better because of it.

Thanks, didn't know that there'd be a problem with honey at all. Everything has some amount of sugar in it though, doesn't it? Well, guess I'll just have to be more careful - goodness, I don't know how I can live without sugar and carbs. You're right, this is going to be a VERY difficult divorce Thanks, I think!

At its base, "sugar" is sugar, whether honey, agave, white sugar, brown sugar, etc., so if you're affected by too much sugar and overgrowth, they're all going to affect it. I'm lucky that I'm not bothered by that.

all sugar is not the same.

on FODMAP diet - honey, molasses, high fructose syrup, fruit juice concentrates, agave are out.
but plain white sugar and true maple syrup are fine.

I have definitely noticed a difference with SIBO symptoms following these sugar rules.

Well that's a surprise - white sugar is fine??
What about carbs, like anything white, bread, bagels, spaghetti, etc. - since they change to sugar after eating, do those things have to be cut out as well, and if so, I'm curious, what does everyone eat? I can't eat very much fruit so that doesn't leave me with very much food other then all proteins? Another question, what about Slenda and Sweet and Low - I would imagine that they would be okay to put into things.