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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.

Last edited by CTBarrister

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 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???

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. 

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.

Last edited by CTBarrister
@CTBarrister posted:

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.

I have no idea what backsplash stool is, what exactly is that???

I have no idea what backsplash stool is, what exactly is that???

The J Pouch doesn't have a valve that prevents stool from back splashing into the ileum- as the colon does. As a result, there is a bacterial buildup at the J Pouch inlet and in the lower part of the neoterminal ileum that can create inflammation in those areas. This is a fairly common issue especially with people that have had a J Pouch for a while. I didn't have any problems in these areas for my first 15 years with a J pouch. See the below:

https://en.m.wikipedia.org/wiki/Ileocecal_valve

Last edited by CTBarrister
@CTBarrister posted:

The J Pouch doesn't have a valve that prevents stool from back splashing into the ileum- as the colon does. As a result, there is a bacterial buildup at the J Pouch inlet and in the lower part of the neoterminal ileum that can create inflammation in those areas. This is a fairly common issue especially with people that have had a J Pouch for a while. I didn't have any problems in these areas for my first 15 years with a J pouch. See the below:

https://en.m.wikipedia.org/wiki/Ileocecal_valve

Oh my goodness!!! I never knew anything about that stuff! I see why now soo many people are getting sooo many problems after soo many years! That is pretty scary! I cannot believe how sooo many things can go wrong our J-pouch, it makes me almost regret getting one now. But I have to admit, I do have much less problems with a J-pouch vs a Ileostomy. Too bad there is pros and cons to everything nowadays

@CTBarrister posted:

The J Pouch doesn't have a valve that prevents stool from back splashing into the ileum- as the colon does. As a result, there is a bacterial buildup at the J Pouch inlet and in the lower part of the neoterminal ileum that can create inflammation in those areas. This is a fairly common issue especially with people that have had a J Pouch for a while. I didn't have any problems in these areas for my first 15 years with a J pouch. See the below:

https://en.m.wikipedia.org/wiki/Ileocecal_valve

Did your gastro tell you that? I never got told that by anybody, but that totally makes sense! Especially with our pouchy being a J

I have discussed it with all my gastroenterologists because the inflammatory pattern I have is consistent with backsplash stool. I have had GI docs that worked with a lot of J Pouch patients. My first GI doc was in NYC and was favored as the go to GI pouch specialist of the surgical group I used in Manhattan. The second was mentored at Cleveland Clinic by the world famous J Pouch specialist Bo Shen, and was himself a pouch specialist. He actually discussed my case with Dr. Shen. The current GI doc has also had many pouch patients besides myself. These doctors all understood the mechanics of the J Pouch and the basic anatomical difference underlying this issue. What I have come away with is that while most of the persistent inflammation is consistent with backsplash stool, there are some scattered ulcerations in the ileum a little higher than what they would expect and therefore I have a technical, although uncertain, Crohn's diagnosis. For reasons I have already stated elsewhere, the actual diagnosis doesn't matter. And in the reports they are calling it ileitis.

Last edited by CTBarrister
@CTBarrister posted:

I have discussed it with all my gastroenterologists because the inflammatory pattern I have is consistent with backsplash stool. I have had GI docs that worked with a lot of J Pouch patients. My first GI doc was in NYC and was favored as the go to GI pouch specialist of the surgical group I used in Manhattan. The second was mentored at Cleveland Clinic by the world famous J Pouch specialist Bo Shen, and was himself a pouch specialist. He actually discussed my case with Dr. Shen. The current GI doc has also had many pouch patients besides myself. These doctors all understood the mechanics of the J Pouch and the basic anatomical difference underlying this issue. What I have come away with is that while most of the persistent inflammation is consistent with backsplash stool, there are some scattered ulcerations in the ileum a little higher than what they would expect and therefore I have a technical, although uncertain, Crohn's diagnosis. For reasons I have already stated elsewhere, the actual diagnosis doesn't matter. And in the reports they are calling it ileitis.

We need those doctors everywhere lol. I took the Prometheus blood test almost 10 years ago when I had my colon and it came back UC. I never got tested again though after that time. I never knew the Promethues blood test results can change over time. I wonder if the results would change now that the colon and rectum are out. 

I also had Prometheus Test which was negative for UC and negative for Crohn's. The results were studied by pathologists on the East and West coasts as they perplexed my GI docs. These tests are highly unreliable and a waste of money. It doesn't matter what you call the IBD that you have, you can call it "new Strain IBD" and will still have to treat it. 

@Scott F posted:

The Prometheus test isn’t very reliable. It seems to confuse things more often than it clears anything up.

I just heard that recently from my Dad's Gastro lol. I was disapointed hearing that because I thought it was perfect for almost 10 years lol. I guess there is no perfect test yet except for colonoscopies and pouchoscopys so far.

I see you know a lot of stuff in the IBD field. Are you a doctor???

@CTBarrister posted:

I also had Prometheus Test which was negative for UC and negative for Crohn's. The results were studied by pathologists on the East and West coasts as they perplexed my GI docs. These tests are highly unreliable and a waste of money. It doesn't matter what you call the IBD that you have, you can call it "new Strain IBD" and will still have to treat it. 

WOW! That is crazyy!!!  Clearly you do have IBD, I cannot believe the test said negative for both. I did not know it was that JACKED UP XD

@CTBarrister posted:

I also had Prometheus Test which was negative for UC and negative for Crohn's. The results were studied by pathologists on the East and West coasts as they perplexed my GI docs. These tests are highly unreliable and a waste of money. It doesn't matter what you call the IBD that you have, you can call it "new Strain IBD" and will still have to treat it. 

It says its 92% accurate too, what BS XD

WOW! That is crazyy!!!  Clearly you do have IBD, I cannot believe the test said negative for both. I did not know it was that JACKED UP XD

That's what perplexed my GI doctors, because they had scoped me and the inflammation in my J Pouch was documented and undeniable.

At some point my second GI specialist - the wonderful Dr. Oikonnomou, the Shen protege who ultimately left Yale for the greener pastures of New York City- threw his hands up in the air and said to me, "it's inflammation no matter what we call it, and we still have to treat it." He was a big proponent in reducing sugars in my diet, something that really does help as a long term strategy in managing pouch inflammation.

Last edited by CTBarrister
@CTBarrister posted:

That's what perplexed my GI doctors, because they had scoped me and the inflammation in my J Pouch was documented and undeniable.

At some point my second GI specialist - the wonderful Dr. Oikonnomou, the Shen protege who ultimately left Yale for the greener pastures of New York City- threw his hands up in the air and said to me, "it's inflammation no matter what we call it, and we still have to treat it." He was a big proponent in reducing sugars in my diet, something that really does help as a long term strategy in managing pouch inflammation.

Lol that is funny. Too bad we do not know the exact name of it but at least your Remicade is working wonders. And oh my goodness! I could not imagine reducing sugar, that would be extremely hard for me lol XD. But its known a lot of sugar causes problems, I hate how life is not fair a lot of times.

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