I have been struggling with chronic pouchitis (usually “simmering”) since my take-down about 12 years ago. I’ve tried many different approaches and am currently in a pouchitis flare that we can’t seem to kick. So, while working with my doctor to figure out next steps, I decided to do more research on my own.

I’m assembling a list of ideas I’ve gotten from this forum about treatments for pouchitis. I thought it would be helpful for the group to have a compilation of ideas to refer to when making choices about our management of pouchitis.

Please view this list as an ongoing process! Let me know if I have misspellings, incorrect info, etc. I welcome input about anything to add, so please feel free to share your experiences. I hope we can all benefit from an ongoing list of ideas.


POUCHITIS TREATMENT IDEAS FROM THE J-POUCH GROUP:

Antibiotics:
Cipro (Ciprofloxacin)
Flagyl (Metronidazole)
Xifaxin (Rifaximin)
Augmentin
Tindamax
Gentamicin

Anti-inflammatory:
Mesalamine
Asacol (oral)
Pentasa (oral)
Topical enema or Canasa (suppositories)
Rowasa (enema)
Hydrocortisone/steroid enemas (e.g., Colofoam for UC; Entocort if CD suspected and need to reach entire GI tract)

Immunosuppressives:
Remicade
Infliximab

Surgery:
Remove pouch and create permanent ileostomy

Additional Ideas (Non-Prescription) to Consider. . .:
Pepto Bismol
Probiotics
Align
Culturelle
PB8
VSL #3 (also available in prescription strength)
FloraQ (generic is Risaquad)

Diet analysis/modification
Stress management
Exercise
Rest
Hydration

LM:

Great List! Did you read these articles yet?

http://usagiedu.com/articles/pouch06/pouch06.pdf

http://usagiedu.com/articles/pouch/pouch.pdf

They seemed very informative and maybe you can put them in your information piece if you think they are worthy.

John

Nice list!

A few things I'd add are (in no particular order):

1) Citrucel to control consistency. I have very good success with Citrucel and take just enough to firm up the stool. I find that I can create an optimum stool thickness which promotes complete emptying. Note: only Citrucel works for me, Metemucil makes me worse (gives me gas).

2) Immodium before bed to reduce output, and also as needed to reduce output for extended periods (like for attending sporting events, etc).

3) I take L-Glutamine... not sure if it is helping, but it certainly isn't hurting

4) get in better shape! I've dropped 10 pounds so far and have been more diligent in exercising, and I think that is helping me

5) prayer/increased spirituality; being kind to others; being an outstanding husband, father & friend; volunteering; helping charities, etc

6) journaling! Write down what you eat, what exercise you did, what meds you took, and take notes on how you are doing each day, and eventually you will find patterns and learn what helps and what makes things worse.

7) always be positive and help your neighbors!

A great list.

I would add Aloe Vera Juice or Gel. Probiotic PB8 and natural Psyllium (A miracle - has worked for me 2 scoops per AM. I use Magnolia Bark instead of four bottles of Imodium per week to one or less per week.

I have had pouchitis since surgery two years ago if I could cure Pouchitis naturally it would be a blessing. I recently started 1 cipro am, 2 Xifian per day, 2 Aloe Gels per day, 2 PB8 per day, 1 vitamin D AM and 3 per day Magnolia Bark and some Immodium. If I could reduce Cipro (or Flaygl(rotation)) is a blessing for any day.

Good Luck Happy New Year!! Helen

I had this once and never again. Eat lots of natural yoghurt it is cooling and also coats the sore areas and gives them a lil time to recover ive tried everything else and nothing works for me . But this works every time. Worth a try!!

Great list. Also, Vibromyacin (generic Doxycyline) is an old school antibiotic that is sometimes still used today for pouchitis. It is very cheap and used for travelers diarhea. May only be useful for mild pouchitis, but worth a try.

I have had what the docs thought was pouchitis for ages, nothing helps, in fact the pain is excrutiating. Its got a hell of a lot worse since the specialist talked me into have pdq implants into the sphincter muscle, ITS AGONISING, THROBBING AND STRAINING, be careful if they are recommended as a way of thickening motions, pure hell for me. I'm now at the end of my rope and gonna have a permanent illeostomy. See my surgeon on Friday, got no choice as can't live with this pain any longer and Australia aren't offering K pouch hardly anywhere, only place I can find is Melbourne.

Thank you for this list and the ideas. I am desperate with going onto 20 years of this...have a prolapsed pouch which allowed it to get injured in a few places and thus the pouchitis just loved that! Now bleeding is my main issue and boy it is bad! Pain is second and I don't appreciate the short sharp ones that go with it.

Just curious why Cortifoam isnt on the list,Ive had great success with that and its easy to use..thanks

Has anyone ever experimented with slippery elm bark? I have not tried, but have a brother w/ulcerative colitis who is checking it out for himself. Wondering if perhaps it would also be beneficial for pouchitis sufferers. http://www.umm.edu/altmed/arti...ppery-elm-000274.htm and http://treatmentsforulcerative...lippery-elm-benefits.

DH, does Citrucel home in a wafer or pill form. I'm looking to firm up my stool with something other than metamusel. thanks Stew

Stew, I have the best luck with the Citrucel powder mixed with water, though sometimes I get lazy and take the tablets (especially while traveling). I can't take Metemucil since it gives me cramps/gas, but Citrucel doesn't.

I also think the Pepto Bismal is helping me tremendously since (knocking on wood here) I've been off antibiotics for many months now, after having been on them for years due to pouchitis.

I went to a new GI for a second opinion last week and he recommended that I stay on antibiotics indefinitely instead of going to an ileostomy. Since Cipro has worked for me in the past, he suggested I go on that one and stay on it. When I expressed concern about the side effects of long-term Cipro use and wondered if it would be better to rotate antibiotics, he said that rotating wasn't necessary, but I could do it, if I wanted to. He recommended finding a "cocktail" of three different antibiotics that work for me and rotate them every 2 - 4 weeks. He said it didn't matter which ones, as long as they worked. He suggested some possibilities:

Septra - sulfa family
Augmentin - penicillin family
Cipro - or any "sister" drug

I thought I'd add this idea to the list of recommendations. If I've listed any of the drug info incorrectly, please write the accurate info. I'm also wondering what other antibiotic combos are used by people who rotate. And does anyone know if it's helpful to choose from different "families" of antibiotics when rotating? I didn't think to ask him that question when we met last week but, after looking at the antibiotics he suggested, it made me wonder.

Thanks,
Lynne

Hmmm...

I had what Mayo clinic called anti-biotic resistent pouchitis. Cipro helped the most, but not for very long. I hated taking all the pills. If it was once a day I could probably handle it, but I could never remember when it was multiple times a day. Between the pouchitis and a RV fistula, I finally decide to go to a end ileo, actually a year ago this month. Best decision I ever made. I had a class reunion this past weekend and partied like a rock star! I never could have done that with my j-pouch. Best of luck with your decision...

10 years ago, after my pouchitis wouldn't resolve with antibiotics, my surgeon suggested I see a particular Oriental Medicine doctor who others had seen some success with. I was highly skeptical but desperate. He gave me a formulation of Chinese herbs to brew and drink as a tea, and he completely changed my diet. After maybe 4 months, my symptoms were gone but I had to continue on the diet. Since then pouchitis has returned less and less frequently, now maybe every 1.5 years. I return to him for his herbs when I have the pouchitis. I can't say I'm crazy about this solution but it has worked for me and the diet is certainly a healthy one.