To my recollection, I never had pouchitis
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Although I don't think taking probiotics are a bad thing, generally speaking I don't think they are effective in either preventing or treating pouchitis. My belief is that if you are going to get pouchitis, you are going to get it, and will then need the usual effective treatment modalities.
That being said, some believe probiotics are helpful in preventing or treating pouchitis. I see it as a situation where it can't hurt to try, but one should not be surprised if pouchitis later develops, gets worse and needs to be treated with something else.
There is reasonably good data suggesting that fairly high doses of bacterial probiotics can reduce the frequency of pouchitis. I’ve had good results with very high doses. The studied doses are quite expensive, though, so I don’t think I’d bother if I genuinely never had a case of pouchitis.
I was tried on high doses of VSL#3 and it did absolutely zero for my pouchitis. Expensive placebo. The most expensive placebo ever. What worked was antibiotics and later Remicade.
I use Align daily. I use it to build up the good bacteria in my gut. I also take a lot of other supplements along with my medications of Imuran, Entyvio, and Budesonide. I believe they all work together to help me be the best I can be. Whether that is true or not, I don't know, but it works for me. Ultimately, the choice is yours to do what you think is best.
Just my two cents worth
@Still Standing posted:I use Align daily. I use it to build up the good bacteria in my gut. I also take a lot of other supplements along with my medications of Imuran, Entyvio, and Budesonide. I believe they all work together to help me be the best I can be. Whether that is true or not, I don't know, but it works for me. Ultimately, the choice is yours to do what you think is best.
Just my two cents worth
I appreciate all the comments. I told my gastro I never had pouchitis but he still wants me to take a probiotic even though I never had anything. I thought that was weird but he said its good prevention but I guess I will think about. I hate how expensive it is, its like a dollar a pill, Visibiome is even more lol.
@Scott F posted:There is reasonably good data suggesting that fairly high doses of bacterial probiotics can reduce the frequency of pouchitis. I’ve had good results with very high doses. The studied doses are quite expensive, though, so I don’t think I’d bother if I genuinely never had a case of pouchitis.
That is exactly what I was thinking too. Why waste money on it if I never had it in my almost 6 years of living with my pouch. Do you still take Probiotics Scott???
@Lauren Of Emerald City posted:That is exactly what I was thinking too. Why waste money on it if I never had it in my almost 6 years of living with my pouch. Do you still take Probiotics Scott???
I take a very high dose of VSL #3 DS - 4 packets per day. I’ve found that I start to develop symptoms if I reduce the dose.
@Scott F posted:I take a very high dose of VSL #3 DS - 4 packets per day. I’ve found that I start to develop symptoms if I reduce the dose.
Oh cool! I am glad you are doing well. Does insurance cover it for you? I hear mixed reviews. I see that Visibiome or VSL3 is expensive.
@Lauren Of Emerald City posted:Oh cool! I am glad you are doing well. Does insurance cover it for you? I hear mixed reviews. I see that Visibiome or VSL3 is expensive.
My insurance does cover VSL #3 DS. I fought with them for a year when they tried to stop covering it, and they eventually developed a special policy to cover VSL for pouchitis and UC (and reimbursed me retroactively!). My state insurance regulators helped with the fight. It’s easier to find Visbiome these days, but since the insurance company policy names VSL #3 specifically I think it isn’t worth the risk to try to get the policy updated.
@Scott F posted:My insurance does cover VSL #3 DS. I fought with them for a year when they tried to stop covering it, and they eventually developed a special policy to cover VSL for pouchitis and UC (and reimbursed me retroactively!). My state insurance regulators helped with the fight. It’s easier to find Visbiome these days, but since the insurance company policy names VSL #3 specifically I think it isn’t worth the risk to try to get the policy updated.
I am glad to hear that!!! Insurance companies can be stupid!!! If that medicine is helping you, why would they treat you like and wait for something even worse to happen, Prevention is everything lol. And yeah, since they approved for VSL3, I would not bother updating it either and possibly creating more problems. You are very knowledgeable, do you know why VSL3 changed their name to Visibiome?
A few years ago there was some sort of disagreement between the original developer of VSL #3 and the company that owns the name. My best guess is that they both got greedy. The company attempted to reproduce the original formula and started manufacturing it independently of the creator. The creator started selling Visbiome using the original formula, and successfully sued the company. Apparently the “new” independently manufactured VSL #3 wasn’t exactly like the original formula. VSL #3 became (and remains) hard to find.
@Scott F posted:A few years ago there was some sort of disagreement between the original developer of VSL #3 and the company that owns the name. My best guess is that they both got greedy. The company attempted to reproduce the original formula and started manufacturing it independently of the creator. The creator started selling Visbiome using the original formula, and successfully sued the company. Apparently the “new” independently manufactured VSL #3 wasn’t exactly like the original formula. VSL #3 became (and remains) hard to find.
Dang!!! Too bad they both got greedy like that! The whole point should be about saving patients from suffering not about money. This is a crazy world unfortunately. At least both formulas work for people that need it. I hate how its over $1 a pill or packet. That is really expensive.
The prescription strength is a lot more than $1 per packet. It costs over $600 to fill my prescription for 120 packets of VSL #3 DS, and Visbiome is priced similarly.
@Scott F posted:The prescription strength is a lot more than $1 per packet. It costs over $600 to fill my prescription for 120 packets of VSL #3 DS, and Visbiome is priced similarly.
Oh my!!!! Goodness!!!! How much do you pay out of pocket??? Hopefully not over $600!!??!
There is some coinsurance until I reach my annual out-of-pocket maximum, usually in July or August. If you know at the beginning of the year that you will reach that maximum then all of the deductibles, etc. are just the particulars of how that amount is apportioned.
My annual out of pocket maximum is $6500 and I reach it with one Remicade infusion which is $10,000 a pop. However, all that comes out of my pocket is $440 approximately. This is because Anthem counts payments made by Remistart (credit card given to you by Remicade), even though those payments don't come out of your pocket. I think it's because those payments are considered financial assistance by the manufacturer.
In any event, my policy period starts November 1, and if I schedule my infusion in November the out of pocket maximum is reached in November and I am covered 100% the rest of the year.
Its for this reason I choose the highest deductible plan available from Anthem under our group options.
@Scott F posted:There is some coinsurance until I reach my annual out-of-pocket maximum, usually in July or August. If you know at the beginning of the year that you will reach that maximum then all of the deductibles, etc. are just the particulars of how that amount is apportioned.
I see. I hope things will be cheaper around the world someday when it comes to reaching out-of-pocket maximum amount. The most important thing is that it works for your pouch. I like how your hanging onto it despite the fact that you have to take all of this medicine. I wish you did not have to be on all of this medicine but I am glad everything is working for your chronic pouchitis. Thank goodness they made VSL3 and Visibiome for our community. How many bowel movements do you have a day???
@CTBarrister posted:My annual out of pocket maximum is $6500 and I reach it with one Remicade infusion which is $10,000 a pop. However, all that comes out of my pocket is $440 approximately. This is because Anthem counts payments made by Remistart (credit card given to you by Remicade), even though those payments don't come out of your pocket. I think it's because those payments are considered financial assistance by the manufacturer.
In any event, my policy period starts November 1, and if I schedule my infusion in November the out of pocket maximum is reached in November and I am covered 100% the rest of the year.
Its for this reason I choose the highest deductible plan available from Anthem under our group options.
LOL!! That is soooo super cool that you make your out of pocket with one Remicade infusion! I bet that is much easier to keep up with too when you make it with one infusion lol. How many Bowel movements do you have a day??? I heard some Remicade patients typically go less.
I don't really keep track of my BMs but I am guessing maybe 5-7 per day. I have a sense of when my frequency has increased and when my urgency has increased and if there is spotting at night. These pouchitis indicators were all MUCH more common before I started Remicade and when I was on antibiotics alone. The episodes are very few and very far between and much shorter since I started Remicade.
To me what is much more important than the number of BMs is that my annual scopes demonstrate that the inflammation has been reduced significantly. My GI reported to me that my most recent scope June 29 shows that my pouch is "looking good" (and better than last year) but that there is some persistent inflammation at the J Pouch inlet and the inlet is slightly strictured, but not so much that he cannot get a scope through it. His test for whether a patient needs a balloon dilation is whether he can get the scope through the strictured area. The J pouch inlet has been strictured since around 2007 or so, and it seems to be the area where inflammation is hardest to eradicate. This is likely due to backsplash stool. It would probably improve if I ate a lot less.