Surely this topic has been covered multiple times already! What products do pouch people use for either a pre-or probiotic? My GI doc does not believe in them, but my colorectal doc disagrees especially for pouchers who are on a protocol of antibiotics. He suggested something "mild" like Align, nothing exotic or pricey. I also wonder if anyone out there uses fermented foods or Kombucha as a digestive aid? THANKS!!
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I use a high dose of VSL #3 DS (similar to Visbiome), which I fortunately get insurance coverage for. I take it with breakfast and dinner, and take my antibiotics at bedtime. Some of the studies have suggested that a higher dose is better, so I’m going with those. Without insurance coverage it would be unaffordable at my current dose.
Hi Scott, What is your dose of the antibiotics? How would one know if the does of VSL or Align is either too much or too little? THANKS!
I take 500 mg of Cipro and 250 mg of Flagyl, once daily at bedtime. If I lower them I get symptoms. It can be maddeningly difficult to work out the right probiotic dose, because the results tend to be very murky. I take a maximum recommended VSL dose of 4 DS packets/day, and when I tried lowering the dose I *think* things got uncomfortable for me. If you’re using the probiotic to prevent (rather than treat) pouchitis, which is probably what probiotics are best at, it can take many months to tell if your pouchitis patterns have improved appreciably.
Thanks, Scott.
Oatmeal is a prebiotic and Greek Yogurt is a Probiotic 
Any particular type of oatmeal? Thanks!
@Joey A posted:Any particular type of oatmeal? Thanks!
Any oatmeal will do, I buy the cheapest natural one lol.
I have tried Culturelle, Florastor, and Align, all for a minimum of six months each. None of them provided any particular functional improvement for me and did not prevent chronic pouchitis. I chose those because there was data available for treatment of IBD or pouchitis and were not budget busters. My husband, who has UC and still has his colon, has been on Align twice a day for years because he can discern an improvement in his function. Plus, he has maintained a remission. Maybe it is a coincidence. I do not know.
So, for me, probiotics was a bust. I was not willing to spend the $$$ on VSL#3 or fight for coverage. Antibiotics worked great for my pouchitis, but the long term risks were to high, so Remicade was my “savior.”
Oh, and prebiotics are carbs we cannot digest, which is “food” for beneficial bacteria (probiotics). So, that includes oatmeal, apples, bananas and fiber supplements.
Jan
@Jan Dollar posted:I have tried Culturelle, Florastor, and Align, all for a minimum of six months each. None of them provided any particular functional improvement for me and did not prevent chronic pouchitis. I chose those because there was data available for treatment of IBD or pouchitis and were not budget busters. My husband, who has UC and still has his colon, has been on Align twice a day for years because he can discern an improvement in his function. Plus, he has maintained a remission. Maybe it is a coincidence. I do not know.
So, for me, probiotics was a bust. I was not willing to spend the $$$ on VSL#3 or fight for coverage. Antibiotics worked great for my pouchitis, but the long term risks were to high, so Remicade was my “savior.”
Oh, and prebiotics are carbs we cannot digest, which is “food” for beneficial bacteria (probiotics). So, that includes oatmeal, apples, bananas and fiber supplements.
Jan
Are you still on Remicade?
Yes, I am still on Remicade and in pouchitis remission since about 2 months after starting it about 5 years ago.
Jan
Hi Jan, Can you explain what you meant by the risks of antibiotics was too high? I'm in the middle of a "battle" between my colorectal doc who I've been with since 1994 and my new GI doc who is young and isn't an expert on pouch people. He believes in antibiotics, but she does not. She wanted me to do the FODMAP diet which I tried but it didn't make much difference. I was on Remicade for about 2.5 years and then developed a reaction and stopped. That was about 6 years ago. My colorectal doc will probably be retiring soon (he's 74) and I'm afraid of what will happen without him. Thanks a million!
The primary risk of long term antibiotics is an antibiotic resistant C. difficile infection. Then there is the risk of tendon and/or neurological damage with Cipro and Flagyl that increases with dose and longer courses of treatment. Like prednisone, the thinking is trending towards use of antibiotics in the short term because the long term risks are too high.
Jan
@Jan Dollar posted:Yes, I am still on Remicade and in pouchitis remission since about 2 months after starting it about 5 years ago.
Jan
Glad to hear it!