very surprised Cleveland Clinic isnt doing this

I would do this but there are no clinics participating in Texas (of course).  I look forward to hearing about the results of this study! 

I take visbiome pills every day

@temoty posted:

I take visbiome pills every day

Have you notice any difference depending on the time of day you take them?  I was thinking about experimenting with taking probiotics before bed instead of with breakfast. They way they could have lots of time to sit around in there and eat the bad stuff.

@Sara Marie I think you must try yourself. In my experience it is no harm to take probiotics at late evening, there was hardly any difference in bowel activity. But I could not tell if the overall effect is better than taking them in the morning. My main goal for taking probiotics was to keep bad bacteria in check.

I've asked my GI and surgeon on a few different occasions about taking probiotics.  Both have told me that they can do more harm than good in my (J-pouch) situation.  Is it dependent, do you think, on the type of probiotic?  I am so afraid to try anything different.  I've had my pouch since 2000, and I SO wish I had found this group earlier.  So many things may have helped me over the years!

It’s certainly true that yeast-based probiotics (like Florastor) are very different from bacterial probiotics (like Visbiome, VSL #3, Align, etc.). The number of living organisms in a dose seems to make a difference. The specific mix of species probably matters, maybe a lot, but that’s a hard problem to untangle.

I’ve taken a high-dose bacterial probiotic for about 15 years (mostly VSL #3, recently switched to Visbiome). I think it has helped manage my antibiotic-dependent pouchitis, but it’s hard to be sure.

I have had my pouch since 1992.  I took probiotics for a while and they helped - until they didn't and I developed SIBO.  Thankfully my SIBO was resolved after two rounds of Xifaxan but I personally will not take probiotics ever again.  SIBO is a nightmare.

@smcchick93 posted:

I have had my pouch since 1992.  I took probiotics for a while and they helped - until they didn't and I developed SIBO.  Thankfully my SIBO was resolved after two rounds of Xifaxan but I personally will not take probiotics ever again.  SIBO is a nightmare.

What probiotics did you take?

@Sara Marie posted:

What probiotics did you take?

I tried several, including Visbiome, with the same results.

@smcchick93 posted:

I tried several, including Visbiome, with the same results.

When you did try them, did you take the same kind every day?  If so, how long did it take for each probiotic to activate the SIBO?  Was there any difference in the types?  Just curious if you kept track. 

@Sara Marie posted:

When you did try them, did you take the same kind every day?  If so, how long did it take for each probiotic to activate the SIBO?  Was there any difference in the types?  Just curious if you kept track.

I tried three kinds - Visbiome, Florastor, and I don't remember the third.  I did take the same one every day for a prolonged period of time with the same results.  Around the time I was treated with Xifaxan, I came across another group where it states Dr. Shen does not recommend probiotics because of our increased chance for SIBO and stopped taking them completely at that point.

@smcchick93 posted:

I tried three kinds - Visbiome, Florastor, and I don't remember the third.  I did take the same one every day for a prolonged period of time with the same results.  Around the time I was treated with Xifaxan, I came across another group where it states Dr. Shen does not recommend probiotics because of our increased chance for SIBO and stopped taking them completely at that point.

Thank you!  Good info.  I took VSL#3 for a long time, then heard from a reputable source that taking one probiotic for a long time could cause unhealthy overgrowth in the intestine.  I started varying my probiotic use, sometimes just having fermented foods and no probiotic supplements.  I go through phases of increased and decreased probiotic supplement use, but I do not take the same one every day during increased use periods.  I increase the use of probiotics in response to yeast overgrowth, then when that is done, I decrease it again. 

I have found that my system is not self-regulatory like it was when I had a colon, and external regulation seems necessary.  It's the paying attention part that is sometimes difficult, as many symptoms feel similar but have different causes.

I personally have not noticed any negative side effects from NOT taking probiotics.  I don't get pouchitis often (usually only after a pouchoscopy) and my only issue now is strictures which I think is caused by the amount of time I've had my pouch.  I have never leaked, even at night, and I pee more than I poop (LOL).

@smcchick93 posted:

I personally have not noticed any negative side effects from NOT taking probiotics.  I don't get pouchitis often (usually only after a pouchoscopy) and my only issue now is strictures which I think is caused by the amount of time I've had my pouch.  I have never leaked, even at night, and I pee more than I poop (LOL).

Pouchoscopies give you pouchitis? 

@Sara Marie posted:

Pouchoscopies give you pouchitis?

Yes, the last two did.  I was skeptical at first but the symptoms I experienced after each one only cleared up after taking Flagyl.

@smcchick93 posted:

Yes, the last two did.  I was skeptical at first but the symptoms I experienced after each one only cleared up after taking Flagyl.

That makes me not want to get a pouchoscopy!

I don't trust my GP to give me good advice on care for a J-pouch. For my physical exam every year, I am repeatedly asked when I had my most recent colonoscopy. Gee, I though you needed a colon for one of those! BTW...regarding probiotics, you can see what the actual researchers are doing by looking up 'j-pouch AND probiotics' on PubMed (e.g., https://pubmed.ncbi.nlm.nih.go...ort=date&size=50). It's a start anyway. Better than relying on seat-of-the-pants advice from doctors.

Isn't that fun?  I usually say that they can scope my colon if they can find it!  (Hint: it's not here in this room.)

@drdennisclark posted:

I don't trust my GP to give me good advice on care for a J-pouch. For my physical exam every year, I am repeatedly asked when I had my most recent colonoscopy. Gee, I though you needed a colon for one of those! BTW...regarding probiotics, you can see what the actual researchers are doing by looking up 'j-pouch AND probiotics' on PubMed (e.g., https://pubmed.ncbi.nlm.nih.go...ort=date&size=50). It's a start anyway. Better than relying on seat-of-the-pants advice from doctors.

Well when they scope you the thing they look at most closely is your rectal cuff, which is colonic tissue. And if you ever develop a pouch cancer, which is rare, that will most likely be where it starts. My cuff has been aggressively biopsied every year for 32 years due to dysplasia in my colon. So the question about having a colonoscopy is semi or maybe one quarter correct, because you have a little bit of colon left and that's what needs to be looked at more than anything else.

It's called Vivomaxx over in the UK.
I've recently started taking it, in a battle with ulceration at the moment, and it clogs me up like codeine. Amazing effect. Whether or not its helping the inflammation I cannot tell, as my cuff is raging and swollen and I've CONSTANT tenesmus. However, I pass nothing for hours and hours and hours on 1 sachet of 450billion Vivomixx a day, so something is clearly happening.

If I can shake the inflammation, I'd happily take it for maintaining remission.

Oddly my cuff can swell up and react even if I eat something, it doesnt have to pass to irritate or swell it up. Its most odd, like I am seemingly allergic to anything, including green tea! starting to think its maybe something in the water here, or environmental in my house like mold spores.

@rcrossco_1 posted:

It's called Vivomaxx over in the UK.
I've recently started taking it, in a battle with ulceration at the moment, and it clogs me up like codeine. Amazing effect. Whether or not its helping the inflammation I cannot tell, as my cuff is raging and swollen and I've CONSTANT tenesmus. However, I pass nothing for hours and hours and hours on 1 sachet of 450billion Vivomixx a day, so something is clearly happening.

If I can shake the inflammation, I'd happily take it for maintaining remission.

Oddly my cuff can swell up and react even if I eat something, it doesnt have to pass to irritate or swell it up. Its most odd, like I am seemingly allergic to anything, including green tea! starting to think its maybe something in the water here, or environmental in my house like mold spores.

Wow! I have wondered before whether mineral rich water irritates my system at times when that was the only commonality I could think of for the irritation. 

Well guess what, the hyper inflammation on the cuff that was so bad it was basically shut closed, like a switch its gone as I type this.

Total madness, its not 100% perfect, but its not the raging, constant need to feel like I need to evacuate.

Starting to think the Salofalk suppositories were actually the cause of making it worse now.

To be fair I've stopped drinking tap water today, and switched to San Pellegrino, glass bottled mineral water only.

Sara Marie, if you are in the US, is it not widely regarded that your tap water is shocking quality? All the areas around military bases the water is contaminated apparently, same as all the water has PFAS in it too. That sure aint gonna help anyone!

I am in the US.  Where I live the water isn't so bad yet.  Where I used to live it was cleaner and had a lot of minerals in it.  Also when I was in Berlin I noticed the water had a lot of minerals in it and my guts were a bit messed up.  Not a very good sampling of data, really. 

Guess its easy enough to test... get a high quality water filter!

We do have a good water filter (but I think it is past due for a change) and I haven't been wondering about the water lately - only when I visit a place with high mineral content. What's the water like where you live?

Probably some of the best... Scotland, BUT, from what I can work out, PFAS etc are basically in every drinking water system in the world, so who knows how good ours here really is. Whatever it is, its gonna be better than Bangladesh or Somalia I guess, but then again, both of those two places have much lower bowel disease from what I can see. lol.

@rcrossco_1 posted:

Probably some of the best... Scotland, BUT, from what I can work out, PFAS etc are basically in every drinking water system in the world, so who knows how good ours here really is. Whatever it is, its gonna be better than Bangladesh or Somalia I guess, but then again, both of those two places have much lower bowel disease from what I can see. lol.

Do people study this?  It may lend an argument to refined foods as a culprit.

@Sara Marie posted:

Isn't that fun?  I usually say that they can scope my colon if they can find it!  (Hint: it's not here in this room.)

Ha ha, I left mine in London!

Someone in a jpouch also mentioned that probiotics can cause SIBO and that a yeast based one is the best if you decide to take one.