I had my take-down last December and have had constant pouchitis ever since. Here's what I have tried:

-Cipro: works great, but progressively gets worse after a couple weeks
-Flagyl: makes me feel awful. I would rather have the bag than be on this stuff for any length of time.
-Hydrocort. enemas: did not do anything.
-Xifacin: expensive and did not do anything.
-Steroid enemas (generic of Cortofoam): helped only slightly.
-VSL #3, fiber: can't tell a difference with or without.

Basically, nothing really works but the Cipro. I'm working with the Mayo Clinic and they do not have any other recommendations for medication, especially with my history of C-diff. My scope a month or two ago showed ulcers in my pouch. The rectal bleeding isn't too bad, but I am CONSTANTLY thinking about the pouch as it cramps and is uncomfortable, not to mention the burn. Have to lay down at least every couple hours to pass gas. I'm unwilling to live like this for the rest of my life. I did very well with the ostomy when I had it - only a couple leaks.

Any thoughts or suggestions would be much appreciated!

Marisa,
Have you tried augmentin? It really has worked well for me as I too have had constant issues since my takedown in May. Now battling cuffitis and certain the pouchitis has reared its ugly head after trying to get off augmentin for a week. This is so incredibly frustrating and I do not want to go back to old UC drugs. Let us know if you have any luck if you swap antibiotics and try augmentin.

Hi Marisa,

Google Black Walnut Extract. I have used this herbal supplement in the past and within two days it has worked. I don't know if this makes a difference but I drink approx. 750 ml of coffee first thing in the morning before I eat. I have not had pouchitis for approx. 9yrs. It might be a long shot but I thought it might be worth mentioning.

Diag. UC 1989
3 Step pouch 1991

Markus,
How i wish I liked coffee...maybe I will try it to see if this works.

Markus,How much of this do you take (liquid or pills?), how often and for how long to clear pouchitis?

Regarding the Black Walnut Extract. I take 1 Capsule 3 times a day. Each capsule has 440mg of black walnut extract. Usually after about 3 days I can feel the difference (less cramping, urgency, and frequency). I take the black walnut for about 7 days and stop when the pouchitis symptoms are gone. Note: I have noticed a bit of BB with the black walnut, but I think it is related to the clensing properties of the herb.

UC diag. 1989
3 step pouch 1991

Thanks Markus...

You can try pentassa-that put me into a remission for a while and canassa. Also for natural stuff-tumeric, fish oil, lot's of vit D, and VSL#3D 4 packets a day. My GI beleives in hitting pouchitis hard at first and then weaning so you might need a combo of stuff. One of each thing may not work but together it might help. Good luck if you see by my sig I have been dealing with this for a long time also.

I've rotated the following antibiotics; flagyl, cipro, xifaxan, and am currently doing a cipro and xifaxan combo. Before that I was on a flagyl and prednisone combo and as soon as I came off the flagyl I wound up in the hospital. I've tried canasa, analpram e, and cortifoam in the hospital (cortifoam you can't take too much because it will thin out/destroy your pouch over time). I too am thinking of going back to the bag after being finding out I have chronic pouchitis.

The reasons I had the surgery in the first place was to have more control over my life and be healthier by getting off the drugs, neither of which I've been able to achieve with a great amount of success and don't want to take the drugs long term.

I wish you luck with whatever you decide to do.

Some people have had good results with Pepto Bismol, 2 tablets am and pm. I don't know if that would be contraindicated with your history of C.diff but you could certainly ask your doctor.

Good luck!

When I asked my doctor about Augmentin, he said it could possibly cause C-diff. Pentassa I'm not really familiar with. What is it exactly? Also, I've heard that taking Pepto long term isn't a good idea. But maybe I wouldn't have to take it long term?

Anyway, I agree with you, Tikibartrauma, I didn't have this surgery so I could continue to take tons of medicines. Some people on here have suggested altering my diet, but I'm not keen on that either - I got the surgery so I could be LESS afraid of what I ate.

I'm really afraid of getting C-diff because when I had it in the past, the Flagyl did not get rid of it. The only thing that worked was Vancocin pills, but that supposedly works in the colon. I don't know if I'd be able to use them.

One more question, is it possible that pouchitis could get better over time? It's only been 9 months since takedown. Is it too early to think about going back to the bag?

Thanks so much, everyone, for your feedback!!

Marisa,

You can take florastor with the augmentin to prevent c-diff, but I understand your concern. My GI doc is also concerned about c-diff with my being on it, but I am unable to function without it and lately, unable to function well even while on it. I keep thinking the same thing that you are...maybe it will get better.

I just woke from a nap, after taking 2 morphine pills and spending half the day in the bathroom and tub because I was up since 3 am due to butt burn. I cannot seem to get my cuffitis under control where I am not in the bathroom endlessly emptying small amounts from my pouch. The more I empty and clean, the more irritation=more inflammation (endless cycle). I was so desperate today I almost reached for my prednisone.

I read the other day the the bulk of jpouch failures occur within the first year and if you develop pouchitis soon after takedown (as I did) you are most likely going to be in the chronic category. Neither of these left me feeling very confident. I am going to have a serious chat with my surgeon about the real possibility of my situation ever improving. I hope we get some results and our pouch function improves.

Markus may be in right neighborhood. Black walnuts are considered to be anti-parasitic. You may want to search the board's historical postings for candigone. I know Glenn F shared his accounts of this working well for him. I think a few others use it too. Some posts were deleted (space constraints I think), but it may still be there.