To Probiotic or not to probiotic

This sounds about right, except that two VSL capsules per day is probably too small a dose to make a significant difference. Even Align likely falls into the category of “I want to take a probiotic but the ones that have been tested are too expensive.” I take four double-strength packets per day which is equivalent to 32 capsules. Yes, I have insurance coverage for it, but I had to fight the company for about a year to get it.

I do not think taking Align will hurt, I think its a good idea. I have spoke with people on here that have taken it. My GI recommended that I take probiotcs (Align) but I have had my J-pouch for almost 7 years and I have never had pouchitis. I do not bother with taking probiotics since I have been fine **KNOCK ON $#%@!!! WOOD**. I do natural stuff like: Greek Yogurt and Oatmeal

I have about 20bms a day, I think that helps me not get pouchitis as well. I have spoke to other people on here that go around the same time I go and they never had it either. I am not sure if that is the exact reason but I believe it is

I think the reason there is no clear consensus is because of the lack of good data. There have been studies, but they are very specific and none seem to be long term. Granted, I have not read about every one out there, but I finally gave up after several years of trying different types. I also did not try VSL#3 due to cost. I have seen reports that probiotics may delay the first occurrence of pouchitis.

I did try Culturelle and Align and several other doctor recommended brands. I made sure to try them for at least 3 months. Culturelle and Align I tried for a year each. In the end I found no benefit. There were no adverse  effects either, other than to my wallet. But bottom line, they did not keep me off antibiotics or other treatment for chronic pouchitis. I decided that I had to swallow enough necessary pills without adding more optional ones.

On the other hand my husband, who has UC and still has his colon, found that Align was helpful to improve overall gut function. He also doubles the dose when traveling. So, I think it is a very individual thing. Just do not feel you *need* to take probiotics is you are doing well otherwise.

Jan

Thank you everyone for the information and your personal experiences as it has been very helpful!

@Scott F posted:

This sounds about right, except that two VSL capsules per day is probably too small a dose to make a significant difference. Even Align likely falls into the category of “I want to take a probiotic but the ones that have been tested are too expensive.” I take four double-strength packets per day which is equivalent to 32 capsules. Yes, I have insurance coverage for it, but I had to fight the company for about a year to get it.

HI scott

I know every insurance is different but could you share how you were able to get your insurance to cover it?

@Former Member posted:

I do not think taking Align will hurt, I think its a good idea. I have spoke with people on here that have taken it. My GI recommended that I take probiotcs (Align) but I have had my J-pouch for almost 7 years and I have never had pouchitis. I do not bother with taking probiotics since I have been fine **KNOCK ON $#%@!!! WOOD**. I do natural stuff like: Greek Yogurt and Oatmeal

I have about 20bms a day, I think that helps me not get pouchitis as well. I have spoke to other people on here that go around the same time I go and they never had it either. I am not sure if that is the exact reason but I believe it is

Thank you for that. I think eating natural probiotic foods is a great idea!

@Jan Dollar posted:

I think the reason there is no clear consensus is because of the lack of good data. There have been studies, but they are very specific and none seem to be long term. Granted, I have not read about every one out there, but I finally gave up after several years of trying different types. I also did not try VSL#3 due to cost. I have seen reports that probiotics may delay the first occurrence of pouchitis.

I did try Culturelle and Align and several other doctor recommended brands. I made sure to try them for at least 3 months. Culturelle and Align I tried for a year each. In the end I found no benefit. There were no adverse  effects either, other than to my wallet. But bottom line, they did not keep me off antibiotics or other treatment for chronic pouchitis. I decided that I had to swallow enough necessary pills without adding more optional ones.

On the other hand my husband, who has UC and still has his colon, found that Align was helpful to improve overall gut function. He also doubles the dose when traveling. So, I think it is a very individual thing. Just do not feel you *need* to take probiotics is you are doing well otherwise.

Jan

Thank you for that. I remember seeing on the align package that it is good for ibd so I'm glad to hear it works and isn't just a marketing scam!

@igotanewlife posted:

HI scott

I know every insurance is different but could you share how you were able to get your insurance to cover it?

Sure. Significant parts of the story are specific to the US (you’re in Canada, right?), but other parts may generalize. The key argument was that the high-dose probiotic was medically necessary, and that the prescription-only “double strength” formulation really was a prescription medication. Medical necessity often overrides more restrictive insurance contract provisions. The key tactical steps included: 1) forcing my way into a medical necessity discussion, when the insurance company tried very hard to make it a contractual coverage discussion, 2) involving my state’s insurance administration as an ally, 3) involving my doctor as an ally (I drafted the supporting letter for him to sign), 4) wading through the hundreds of pages of immaterial garbage the insurance company kept sending, and 5) making a strong case for medical necessity. In my situation that meant that I had diagnosed chronic pouchitis, I’d tried cutting back on the probiotic resulting in worsening symptoms, and I’d been paying for the stuff out of pocket. From the beginning I asked for retroactive reimbursement, which meant that I got a substantial payment once I prevailed. The insurance company wrote up an internal policy memo covering VSL #3 specifically for pouchitis and UC. It’s well-written and could support other people’s attempts to get coverage. I’ve previously posted a link to it here, but let me know if you need it and can’t find it.

One problem is that all of the research on probiotics in pouchitis was done on VSL #3, but 1) the formula that was studied is now marketed as Visbiome, and 2) the very similar product now marketed as VSL #3 might not be available in Canada - at least it wasn’t while the two companies were busy fighting in court.

Thank you for the great info. Yes I am in Canada and my insurance company told me that visbiome is considered natural health product which isn't covered.

Ill call them again to see if something is medically necesity whether or not that would be considered with the support of my gi especially if it can help prevent pouchitis. It's definitely worth a shot!

@igotanewlife posted:

Thank you for the great info. Yes I am in Canada and my insurance company told me that visbiome is considered natural health product which isn't covered.

Ill call them again to see if something is medically necesity whether or not that would be considered with the support of my gi especially if it can help prevent pouchitis. It's definitely worth a shot!

I can’t tell from your post if you have ever had pouchitis at all, let alone a recurrent or chronic problem. Heck, I sure wouldn’t bother with a probiotic without a clear medical reason. Not every J-poucher has pouchitis issues.

There is a recent survey here on how much members take VSL3/Visbiome daily, and what they think about its effectiveness.

I tried making the 24 hr yogurt with a special yogurt machine. It turned out sour as hell. It is a lot stronger than store yogurt in terms of probiotics, you can taste it. I could feel a difference in j-pouch function as well. I am too busy to make home made 24 hr yogurt, and the taste is too strong for me, so I prefer to take Visbiome. However, if affordability is important for you, you can make 24 hr yogurt at home. You need a special yogurt maker machine, mine was Luvele brand.

@Former Member posted:

There is a recent survey here on how much members take VSL3/Visbiome daily, and what they think about its effectiveness.

I tried making the 24 hr yogurt with a special yogurt machine. It turned out sour as hell. It is a lot stronger than store yogurt in terms of probiotics, you can taste it. I could feel a difference in j-pouch function as well. I am too busy to make home made 24 hr yogurt, and the taste is too strong for me, so I prefer to take Visbiome. However, if affordability is important for you, you can make 24 hr yogurt at home. You need a special yogurt maker machine, mine was Luvele brand.

What differences can you feel with visbiome and how many do you take a day

@Scott F posted:

I can’t tell from your post if you have ever had pouchitis at all, let alone a recurrent or chronic problem. Heck, I sure wouldn’t bother with a probiotic without a clear medical reason. Not every J-poucher has pouchitis issues.

I don't have any issues right now and I'm new J-poucher as I am only 1 month in. I'm just trying to be proactive to avoid pouchitis or any other problems if possible.

@igotanewlife posted:

I don't have any issues right now and I'm new J-poucher as I am only 1 month in. I'm just trying to be proactive to avoid pouchitis or any other problems if possible.

Your pouch is very new. If you’re lucky you will begin to get so busy living a healthy life that you forgot to worry about things that might or might not happen. Most occasional cases of pouchitis are easily treated with an antibiotic for 10-14 days.

@igotanewlife posted:

Thank you for that. I think eating natural probiotic foods is a great idea!

You are welcome

@igotanewlife posted:

I don't have any issues right now and I'm new J-poucher as I am only 1 month in. I'm just trying to be proactive to avoid pouchitis or any other problems if possible.

Planning ahead is the best thing!

@Former Member posted:

There is a recent survey here on how much members take VSL3/Visbiome daily, and what they think about its effectiveness.

I tried making the 24 hr yogurt with a special yogurt machine. It turned out sour as hell. It is a lot stronger than store yogurt in terms of probiotics, you can taste it. I could feel a difference in j-pouch function as well. I am too busy to make home made 24 hr yogurt, and the taste is too strong for me, so I prefer to take Visbiome. However, if affordability is important for you, you can make 24 hr yogurt at home. You need a special yogurt maker machine, mine was Luvele brand.

Do you think Kefir taste sour too? For some reason it tastes sour to me.  

@Scott F posted:

Sure. Significant parts of the story are specific to the US (you’re in Canada, right?), but other parts may generalize. The key argument was that the high-dose probiotic was medically necessary, and that the prescription-only “double strength” formulation really was a prescription medication. Medical necessity often overrides more restrictive insurance contract provisions. The key tactical steps included: 1) forcing my way into a medical necessity discussion, when the insurance company tried very hard to make it a contractual coverage discussion, 2) involving my state’s insurance administration as an ally, 3) involving my doctor as an ally (I drafted the supporting letter for him to sign), 4) wading through the hundreds of pages of immaterial garbage the insurance company kept sending, and 5) making a strong case for medical necessity. In my situation that meant that I had diagnosed chronic pouchitis, I’d tried cutting back on the probiotic resulting in worsening symptoms, and I’d been paying for the stuff out of pocket. From the beginning I asked for retroactive reimbursement, which meant that I got a substantial payment once I prevailed. The insurance company wrote up an internal policy memo covering VSL #3 specifically for pouchitis and UC. It’s well-written and could support other people’s attempts to get coverage. I’ve previously posted a link to it here, but let me know if you need it and can’t find it.

One problem is that all of the research on probiotics in pouchitis was done on VSL #3, but 1) the formula that was studied is now marketed as Visbiome, and 2) the very similar product now marketed as VSL #3 might not be available in Canada - at least it wasn’t while the two companies were busy fighting in court.

That is crazy they put you through all of that! Do you have any copays with it now? Or is it covered at 100%?

@igotanewlife posted:

Thank you everyone for the information and your personal experiences as it has been very helpful!

You are welcome, we are family here

@igotanewlife posted:

What differences can you feel with visbiome and how many do you take a day

Within the first year after takedown, If taken a few hours before bed, the stool would be noticeably firmer than if I did not.

My takedown was March 2020, and I take 3-4 a day. Mostly 2-3 sometimes 4 an hour after breakfast, because I eat bread and cheese for breakfast, and this is the largest carb meal of my day.

I also take a few after dinner, if I ate more sugar that my regular intake. I monitor my sugar and carb intake closely, and take more probiotics soon after I eat them.

Fruits are also protective against pouchitis, there is a published article about it, if you search, you can find it. That is why I eat a tomato (actually a fruit) salad with pickles (for-probiotics) with my carb heavy breakfast every morning, hoping that it will compensate for the bad microbiome from the carbs.