My doc suggested it years ago and I’ve been forking over $34/month per box. I’m trying to cut corners now that money is getting tight. Now I’m wondering if it’s worth it. Thoughts? $360 per year adds up to a good amount. Then add in the fiber supplements… I’m glad my Imodium is covered by insurance.
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That’s an excellent question that I often wonder about. It seems some folks here really like vsl3 and visbiome and they have really been helped by them. I would suggest maybe trying to taper down slowly and see what happens. Who knows?
I have tried repeatedly to reduce my dependence on Imodium, with always the same negative result. I have accepted my situation.
between the baby wipes, the gasx, the lotions, the supplements, it’s adding up. Money is tighter nowadays, but this jpouch is high maintenance for me, so anything I can do to maintain the status quo I am willing to do.
while probiotics had no effect on my condition, they might for you, so tread lightly should you decide to change things up.
I feel the same way. I’m spending $70 a month taking VSL #3 twice daily. I often wonder if I could just take once a day, or not at all. I am afraid to try that though. I did recently order right from the manufacturer. They now have lower prices and the more you order the more you save. I bought 2 bottles of 60 for $106!
There was a time when this was hard for me to afford. I have the means now, but wish I could be spending this money on something else. I just want to feel the best I can and live my life.
Best of luck to you!
I take a probiotic from an online shop, 20 different stems of bacteria, 2 capsules in the morning means (only?) 20 billion bacteria a day. It is less costly, only about $25 for one package / 3 months, i.e. $100 per year.
I take a *lot* of VSL #3 DS - 6 boxes per month. It’s very expensive. I tried reducing the dose when my insurance company stopped covering it, but I started to have symptoms I didn’t like. So I aggressively challenged my insurance company, and after a year-long fight they agreed to cover it based on medical necessity (they even had to pay for the year they spent denying it).
Not everybody gets benefit from probiotics, so it’s certainly worth testing whether there’s sufficient benefit for you.
Probiotics are meant for the large intestine we dont have. You risk getting SIBO taking them and you dont want that. Dr Shen always said this to me and many others. He suggests green tea extract over probiotics..
Does the green tea extract work for you? I don’t take anything for my pouch accept psyllium when I eat. I have tried probiotics with no luck. Every six months or so I try Imodium and it always make me strain to empty … I wish I could turn my pouch off for a day just to get a break…it get exhausting
Yes my doc suggested vsl but it’s super expensive and insurance won’t cover it so I take Culturelle- I can get the biggest bang for my buck with Amazon, for the millions of strains per capsule. Not sure about other online stores or generic ones though. Worth looking into. Never heard that it was for large intestine only. I might back off and see if it makes a difference in my symptoms. I’m on flagyl long term anyway for SIBO so that’s under control. Just wanted to see what everyone else here thought.
It is true that the main load of bacteria is usually located in the colon. But there are still lots of bacteria in the small intestine also, even if it is just a fraction of those in the large one.
As we don't have a colon any more, the question is wether or not we have benefits from taking probiotics and it is surely individual how they are tolerated. But if you have a look at the kind of bacteria inside such probiotics, it is mainly lactobacillae and likewise, which are typical for the small intestine.
The most important reason for me to take probiotics is because I take antibiotics almost every day and I want to avoid getting an infection with harmful resistant bacteria like c. diff. Leaving bacteria-friendly locations like the guts unpopulated is a danger for such strains spreading.
But even without chronic antibiotics use some people with a pouch may profit from taking probiotics, it is something you have to try to find out.
When I asked my doctor about VSL, he said eating yogurt would be just as effective and much cheaper.
I take an probiotic for gut health along with prebiotic which can fight off bad bacteria. I take Garden of Life about $30 a month. I have Siob & thought it would help for that. Idk maybe it does; I could b worse. I still have alot of gas. My dr told me to take a probiotic because of the lactobilla & bifidum. I take it for it's other benefits as well.
Dr Bo Shen is a world reknown jpouch GI, that used to be at the Cleveland Clinic and now in NYC. He has the most published reports and studies on the jpouch . Look him up here and on any other jpouch group or forums. I will go by what he says what is good and not good for the pouch . you guys do what you want.
Hmmm, interesting take from Dr Shen.
My GI who is the head of the chrons and colitis department at the university hospital where I see him, has a different take.
he has told me that over time my jpouch would take on colon type characteristics. He further explained to me that gi bacteria was never meant to reside in the small intestine. And that in his research and experience some of his jpouch patients get results with probiotics, specifically visbiome.
i admit that I got no relief from them, and never really took them on a long term basis. I have concluded after two years with this pouch several thoughts:
1. If we are fortunate, we have a go to doc that we really trust and respect.
2. We all have unique experiences with our pouch that respond differently to medicines and supplements.
3. Nothing is certain with our pouches and all we have are anecdotal evidence for why things work or don’t work for us.
4. While I really trust and respect my GI doc, I actually depend on this site for real time information on medicines, supplements, products and techniques to manage my pouch on a daily basis.
@New577 posted:Hmmm, interesting take from Dr Shen.
My GI who is the head of the chrons and colitis department at the university hospital where I see him, has a different take.
he has told me that over time my jpouch would take on colon type characteristics. He further explained to me that gi bacteria was never meant to reside in the small intestine. And that in his research and experience some of his jpouch patients get results with probiotics, specifically visbiome.
i admit that I got no relief from them, and never really took them on a long term basis. I have concluded after two years with this pouch several thoughts:
1. If we are fortunate, we have a go to doc that we really trust and respect.
2. We all have unique experiences with our pouch that respond differently to medicines and supplements.
3. Nothing is certain with our pouches and all we have are anecdotal evidence for why things work or don’t work for us.
4. While I really trust and respect my GI doc, I actually depend on this site for real time information on medicines, supplements, products and techniques to manage my pouch on a daily basis.
Most of that is true, thats why on biopsy our pouches always show some degree of inflammation as small intestine is not meant to hold stool.
Yup exactly!
my most recent pouchoscopy at 18 months post takedown, showed that minor degree of inflammation in the pouch. Doc said it was clinically insignificant, so we really did not even dwell on it.
interestingly, after takedown, when I was having my pouch function issues, I suggested pouchitis. Both the surgeon and GI stated not likely as pouchitis probably won’t manifest itself that early in the pouch lifecycle. Now I understand why.
@New577 posted:Yup exactly!
my most recent pouchoscopy at 18 months post takedown, showed that minor degree of inflammation in the pouch. Doc said it was clinically insignificant, so we really did not even dwell on it.
interestingly, after takedown, when I was having my pouch function issues, I suggested pouchitis. Both the surgeon and GI stated not likely as pouchitis probably won’t manifest itself that early in the pouch lifecycle. Now I understand why.
NOT TRUE AT ALL.. people can get diversion pouchitis, which is pouchitis before your pouch is ever connected.. I had it.
Hello all,
I should have edited my last post to put more context around the discussion and point it back to the original topic.
what I should have added is that my GI did in fact order two rounds of Cipro on the off chance it was pouchitis. I was suffering mightily and per the surgeon it was too soon for a pouchoscopy.
in addition he wanted me try visbiome. Neither the cipro nor the probiotic helped this situation. It ultimately turned out to be cuffitis and a medicine I was taking that caused the initial 6 months of poor pouch function. This was proven by the first pouchoscopy which showed no pouchititis.
So for me probiotics did not help, but since I have no medical training whatsoever, I depend on my docs to provide me with accurate information, diagnosis and treatment.
if Dr. Shen says one thing and another says something else, then I guess we all have to use our best judgment to determine the course of action we will take.
Visbiome relieves my pouchitis symptoms. If I miss three days, they come back. I am on a low FODMAP diet and that has made a difference in my comfort, but not nearly as much as the Visbiome. I use to take VSL3, but started to have issues when they changed the formula. I discovered Visbiome through the discussion on this forum.
I have tried other probiotics, but they never seemed to make a difference. Only Visbiome works. I eat yoghurt, fermented things, and kombucha, but I'm not sure they help.
I am from Australia, so Visbiome is not easily found. I know of only one company that sells it but it is $140 AUD for 30 sachets. I have tried other Probiotics before and it made no difference.
@Pouchomarx posted:Probiotics are meant for the large intestine we dont have. You risk getting SIBO taking them and you dont want that. Dr Shen always said this to me and many others. He suggests green tea extract over probiotics..
Hi Can I ask what is green tea extract for?. To prevent pouchitis? or to keep J pouch healthy?
I am also curious about the green tea…..
Bo Shen uses VSL 3 for control of Pouchitis. Management of acute and chronic pouchitis It seems it may reduce your chances of getting pouchitis, but may not help with controlling it once you have it. The studies actually done on VSL3/Visbiome are all very small scale, so they are "weak". My GI doc works at a different university, and she feels that probiotics won't hurt but feels they don't help everyone.
The Pros for taking it: Small studies show it may help. Bo Shen uses it in some situations
The Cons: The studies are small. It is expensive. Does not seem to help if you have infection.
@tf posted:I take an probiotic for gut health along with prebiotic which can fight off bad bacteria. I take Garden of Life about $30 a month. I have Siob & thought it would help for that. Idk maybe it does; I could b worse. I still have alot of gas. My dr told me to take a probiotic because of the lactobilla & bifidum. I take it for it's other benefits as well.
you have SIBO and still take a probiotic? not good,
@douglitke posted:Bo Shen uses VSL 3 for control of Pouchitis. Management of acute and chronic pouchitis It seems it may reduce your chances of getting pouchitis, but may not help with controlling it once you have it. The studies actually done on VSL3/Visbiome are all very small scale, so they are "weak". My GI doc works at a different university, and she feels that probiotics won't hurt but feels they don't help everyone.
The Pros for taking it: Small studies show it may help. Bo Shen uses it in some situations
The Cons: The studies are small. It is expensive. Does not seem to help if you have infection.
this study was done 10 years ago... his thoughts on this has changed from research. he does not recommend probiotics now, green tea extract now
@Pouchomarx posted:you have SIBO and still take a probiotic? not good,
You keep repeating this, but I don’t think it’s true. The bacterial species that cause SIBO are not contained in any probiotic formulation that I’m aware of. Can you share a reference to any study that supports this strong claim? It’s certainly true that probiotics aren’t helpful to everyone, and it can be tricky to tell if they are helping. I believe that you may indeed have been told something like this by Bo Shen, but I don’t think he’s done such a study, either, since he would have published it.
@Scott F posted:You keep repeating this, but I don’t think it’s true. The bacterial species that cause SIBO are not contained in any probiotic formulation that I’m aware of. Can you share a reference to any study that supports this strong claim? It’s certainly true that probiotics aren’t helpful to everyone, and it can be tricky to tell if they are helping. I believe that you may indeed have been told something like this by Bo Shen, but I don’t think he’s done such a study, either, since he would have published it.
Scott, I was a Shen patient at the Cleveland Clinic since my first pouch in 2008 and then my redo in 2015. Dr Shen was my Gi till he left for NYC. I still occasionally talk to him via email. There are several people on the Facebook Jpouch group that also were or are current patients of Shen and they all state the same as I have. I can reach out to him and ask if he has a published study stating this and let you know, but he never recommended probiotics and always pushed green tea extract now.
@Pouchomarx posted:Scott, I was a Shen patient at the Cleveland Clinic since my first pouch in 2008 and then my redo in 2015. Dr Shen was my Gi till he left for NYC. I still occasionally talk to him via email. There are several people on the Facebook Jpouch group that also were or are current patients of Shen and they all state the same as I have. I can reach out to him and ask if he has a published study stating this and let you know, but he never recommended probiotics and always pushed green tea extract now.
i just shot him an email so i will let you know what he responds...
The few clinical trials on probiotics (at least VSL/Visbiome) were all very small, making the conclusions suspect. They did not show any benefit in solving pouchitis, but did show some inprovement in preventing it. That suggests that if the clinical trials are to be believed then stopping probiotics may not cause any difference for you. But maybe you get pouchitis more often. But again the trials were small, so maybe the effect is not worth the cost. VSL/Visbiome are not cheap.
I hope @Pouchomarx Gets a clear answer. I suspect it is somewhat dependent on your own body and issues. Like so many answers with pouches, what works for one person may not for another. In this case it may be hard to even tell if it is helping you
Pouchomax, did you ever get an answer on this study?
