Chronic Pouchitis

I believe pouchitis comes as a side effect of having the colon removed and the making of our small intestines into a pocket of whichever sort k s or j that holds stool. Our small intestine is not build for this and when stool sits in here too long the bacteria is over whelmbing the cells that form that specific organ. Food moves quickly and passes to the colon within a 3-5 hour timeframe and then is able to sit in the colon for a very long time and pass much more slowly. I personally am having a terrible time controlling the pouchitis since getting pregnant November last year I only have one more month here but have been on flagyl three times and only gotten a few good weeks and struggled for many weeks not wanting to take an antibiotic while pregnant...... Anyone else experience this...? I believe with the slowing of bowl from the hormones released in the body during pregnancy causes this to be so much worse. I am on VSL #3 have been since take down and it really helps me I take only one pack of 900 billion per day but once I get off I feel the burning and frequency of stools come right away. I also prefer to take it at night which I have experimented with. At night I have noticed my bowls slow more after about 5pm so I take the vsl later at night before bed so it stays in my body longer. Hope everyone stays well. I hope I last another month uhgggggg pressure everywhere the colon used to be is so unconfortable 

Living-

Chronic pouchitis is a bear when you can't use antibiotics. You might try pushing the non-drug/chemical strategies a bit harder. For example, you can take up to 4 VSL #3 DS packets per day. That's the dose I take, with breakfast and dinner, and it really does help. You might also try substantially reducing carbohydrate consumption (within the limits of a healthy diet during pregnancy). Heck, soluble fiber might help a bit.

Be careful of drugs in disguise during pregnancy and nursing: Pepto Bismol, oil of oregano, etc. are not in any way guaranteed to be safe in pregnancy, and the ones that haven't been studied may or may not be safe.

Good luck!

I have had my jpouch since 2014. I had pouchitis for a year and was on Flagyl and Cipro  it would clear it up briefly as soon as I stopped the meds it would come back. I was miserable so I decide to do a little research on the Internet. I came across and article about pouchitis and Fermented food. I started eating sauerkraut everyday and within a few days I was feeling better. In a few short weeks I was completely rid of pouchitis. It's been months and no signs of pouchitis. If you don't like saurkraut there are other fermented foods you can try. I would encourage others to at least give it a try. Best of luck to everyone 

Shen,

I am also eating a lot of sauerkraut lately, due to its probiotic-rich qualities. I recently also bought some Kengstenberg German Barrel Sauerkruat as well as the same company's pickled red cabbage with apples. I haven't tried the sauerkraut yet, but the pickled red cabbage is very good.

For American sauerkrauts, I like Saverne Artisan Beer Sauerkraut, made with beer as the name implies. I usually Hungarianize my sauerkraut by adding reduced fat sour cream and paprika. My mother was born in Hungary and I learned from her that you can Hungarianize almost anything by adding sour cream and paprika.

Scott F posted:

Alvis, you could substantially increase your probiotics. VSL #3 DS has 900 billion CFUs/packet, and you can take 4 packets/day for active pouchitis. I think that's well over 50x your current dose.

Folks are also getting good results from various diets that are very low in carbohydrates (sugars and starches).

I am starting to eat a lot of fermented foods I hear this is a big help also lots of sauerkraut i will see if this helps VSL#3 cost a small fortune to get the 1 Trilion count in Bacteria I am going to try this first + my Surgeon swears by Floragen3 and Flagyl combo one thing my gas and stools still vary in how bad they smell the whole house stinks for quite a while after I go what is causing that ,that has been the case now for a few years is that an over growth of Bacteria or is that Yeast?

Some insurance covers the prescription-strength VSL (VSL # 3 DS). Mine tried not to cover it, but I was successful in appealing their denial, so they now pay 80% of the cost.

I'm about to start a clinical trial for chronic pouchitis with alicaforsen enema. This is for people who are dependent on anti-biopics to control pouchitis.

The trial involves stopping antibiotics for 2 weeks and then being screened and then using an enema every night for 6 weeks while being in close contact with the medical team. If the treatment is successful the enemas only need to be administered every 2-3 months or so. This would do away with the use of antibiotics, so fingers crossed. The trial is being carried out in Canada, and parts of Europe, to my knowledge. My consultant pointed out that there are about 150 ish people in the UK with chronic pouchitis and if this drug works that would be a god send.

Anyway, watch this space and wish me luck as I go forth and take another camera up my back passage the cause!

Marty

Hi Marty.

Got my J-pouch surgery back in 2008 and have been having chronic pouchitis for years now, sometimes without severe symptoms and sometimes with. VLS3 has not protected me, it seems. I am living close to Paris (France) and here my gastro thinks it may take a while before Alicaforsen becomes available.  Still, I am really interested in what it will do for you. Who knows, I might be able to buy and import some from other countries. Did they mention any potential side effects to you ?

Wish you the best with that new treatment !

François.

Hi Francois

Thank you for your message and best wishes. There are a few side effects, like irritation, nausea, but as I can see nothing major, so fingers crossed.

This coming Friday is D-Day when I'll know whether I'll be taking part or not and I was told that if I do and the treatment is successful they will keep me on it.

I'll keep you posted with what happens and I hope I don't get the placebo !

I was on antibiotics for my pouchitis which really did work.

Take care

Marty