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I have had recurrent pouchitis for years, since the early 90s. I was taking VSL3, but about every 6 weeks the pouchitis got so bad I would take flagyl or cipro for 2 weeks. In 2012 the 6 weeks started getting shorter and shorter, like to 2 weeks on and 2 weeks off.
Then my doctor said he wanted me to try something different. He said the pouch was not made to hold stool for a long time and stay healthy, so he put me on one activia yogurt a day (morning), 4 grams of pentasa, one Align probiotic/day(morning), and one 17gram daily dose of Miralax(morning). Today makes 6 months and 2 weeks I have been free of pouchitis. I am thrilled to death. I never miss a day on my regimen. I exercise and drink lots of water. Two days over the 6 months I think I did not have enough water and repeated my Miralax in the afternoon.
I buy the 4X probiotic and miralax generic. It is so nice not being sick anymore.
I travel to Europe and I can find Activia in many stores in all countries there.
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This is great news. What is the 4x probiotic and out if curiosity how much water do you drink a day and how long before you noticed this was working? Did you completely stop vsl as in take it too and don't think it has any effect for my pouchitis.
Is miralax safe to take long term? My GI also suggested this for me due to my chronic stricture at the anastomosis. I also have chronic pouchitis and cannot last more than 3/4 days without adding an antibiotic dose in between. I hate being on chronic antibiotics. I think you take 8 Pentasa a day at 500 mg? My GI prescribed 6 a day. I'm going to give your routine a shot. Thanks for sharing.
quote:
Two days over the 6 months I think I did not have enough water and repeated my Miralax in the afternoon.


Not sure if I understand this statement correctly, but Miralax is flushing water out of your body, and it should not be substituted for water, or else you are going to end up in the ER with dehydration.

However I am glad to hear that your regimen is working.
To answer some good replies I received. The 4X probiotic is one at the grocery stores, or WalMart or Amazon that is like Align, but it has 4 times as many bacteria. (I would like to meet the person who counts them)

I drink a few pints of water daily. Also, if I am drinking multiple beers I drink an equal amount of water between each beer.

CT is correct. The 2 days when I took a double dose of the Miralax I did drink a lot of extra water because it could dehydrate me. Miralax is polyethylene glycol 3350, so I get the generic on Amazon. I drink a minimum of a pint of water that I mix the Miralax in (stir it a lot), then I chug it.

I no longer take VSL.

I have the stricture issue, too. I do not eat salads or as many al dente veggies as I would like because of the stricture.
I agree with this philosophy and followed it for several years. I would drink 3 liters of water a day and take one culturelle probiotic each day. I never took any drugs or miralax. I would drink one coffee which would flush me out and then if things weren't moving fast, I'd eat some cherries or something to move things through. I believe that stool is not meant to stay in our pouches and then when it does that is when the bad bacteria multiply. I never had diarrhea or pouchitis and felt great. I would go to the bathroom pretty much every time I would go to pee.

However, in the last few years I have developed diarrhea. I think it's important not to move things through quickly when you have diarrhea. Now I take fiber in the morning and sometimes pepto at night to thicken things. So, this worked well for me with more formed stools in the past. Seems like a few times of pouchitis and antibiotics have messed up the bacteria in my pouch and I can't seem to get it back in balance.

Also, VSL #3 seems to upset my pouch instead of help it. I don't think all probiotics are helpful (I'm just figuring this out).

So glad you found a system that works for you. I would think the miralax is not necessary but I guess if it works, keep going.

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