No Pouchitis for 20 months

I'm new to J-pouches, my take-down was in July and I've had pouchitis ever since.

Interested in the reason that you are using Miralax; don't most people use Loperamide to help with their pouchitis symptoms?

for you and your 20+ year old S-pouch!

How long have you been taking pentasa? I'm assuming it was 20 months ago. I had my pouch scope while awake a few years ago. The inside of my pouch looked a lot better than my ugly colon did right before my surgery. I appreciate your post and particularly the part about your doctor dilating both ends of your pouch. I've been wondering if I might have a narrowing at one or both of ends of my j-pouch.

@ks1905 Loperamide is taken to slow down our GI system. MiraLAX is a laxative to make OUR GI move faster.

Miralax is definitely an unconventional way to treat/prevent pouchitis. I'm guessing that the doctor is trying to reduce bacterial stasis, which may be one of the causes of pouchitis. It's an interesting idea, but I sure have mixed feelings about trying it.

I was given lactulose to treat pouchitis, which essentially works off the same principle of reducing bacterial stasis. It didn't really help me and I only tolerated it in much lower doses, as it's a fairly powerful laxative even taken at low prescription dosage.

Regarding the post about loperamide being taken to treat pouchitis, this is not really true. Loperamide is an antidiarrheal and while diarrhea could be a symptom of pouchitis, taking loperamide to treat diarrhea occuring as a result of pouchitis is actually fostering and promoting the bacterial stasis which may be causing the inflammation in the first place. On top of that, most of the antibiotics prescribed to treat pouchitis or SIBO have a very distinctive constipating effect. Taking loperamide concurrently with antibiotics can be risky and can exacerbate the situation.

I have had some success taking Pepto Bismol to treat pouchitis. The bismuth in Pepto Bismol is toxic to a lot of the bacteria in the pouch.

This is new information that loperamide ( immodium) would promote SIBO. My son has been taking 6 immodium a day to help limit his bms ( along with antibiotics for the presumed SIBO). Maybe we will try to reduce and see that impacts him.

My GI at the Mayo Clinic prescribed Loperimade for me and told me not to use Pepto Bismol. There is going to be contrary advice from us. If we knew what the magic thing or combination of things to treat pouchitis or anything else for that matter we wouldn't need a support site.Everyone should discuss potential treatments to improve their pouchitis or anything else you are unsure of.

CTBarister is right that it slows things down. He is also right on when he we shouldn't promote keeping our excrement in our pouches too long as it can foster bacteria stasis.

The reason why we might need Loperamide is to slow things down enough so we don't need to sit on the pot 24/7. There is diarrhea and there is super diarrhea that occurs when we are ill. My GI also told me that I shouldn't let the feces hang around inside my j-pouch as well.

We should strive for a healthy j-pouch and there are many things that go into the mix. What we eat, when we eat, what medications we are taking, where are the restrooms etc. Some said to hold our output in the beginning to stretch our j-pouches. I didn't do that but somehow ended up with a large pouch. We share information about bidets, brands of TP, what to use for butt burn and on and on.

I recently discovered what I call my secret weapon. My Neurologist, also at Mayo's and is working with my GI and my Fibromyalgia doctors, put me on amitriptyline to get rid of my daily migraines. My GI said it would help with my j-pouch function as well. It is helping with my fibro pain too. I quit taking an antidepressant and what I was taking daily for my migraines. We replaced 2 medications with one. Migraines - gone, IPS/Pouchitis - better, depression - better and fibromyalgia pain - better. I feel better. I also started taking 2 vs 1 sachets of VSL#3DS daily around the same time. I cancelled the surgical consult that was scheduled.

There are times when my IPS/pouchitis recurs but I've gone from rotating antibiotics and taking them most of the time to just taking antibiotics and Loperamide just a few times the last 6 months.

I am not recommending everyone run out and take an antidepressant that they don't need. I want to demonstrate how there are more variables that go into treating our dysfunctional j-pouches. I do recommend stepping up the use of probiotics to see if it helps.

I did well on pentassa for three years but had to stop because apparently you can get nasal ployops from them and I was getting chronic sinus infections. Glad you found something other than antibiotics that worked