Just found out I have severe crhonic pouchitis,suspect I`ve had for quite a while now.The thing is I don`t want to take anything for it.I know it sounds stupid on my part but I`ve heard too many negative remarks about Cipro and Flagyl.But on the other hand if I just leave it alone who knows what kind of complications I`ll run into.What am I to do?
P.S. So much for my tag line!

I am on Cipro, not for pouchitis, but for remission of my first fistula. I have been on Cipro for about 18 months . . . and aside from an occasional bout of yeast imbalance and a few nightmarish dreams. . . it beats dealing with a vaginal fistula! You may want to check out VSL-3 if you have not already. . . as it was tested a found somewhat effective at fighting pouchitis (which I have not been diagnosed with).

Do yourself a favor and give some therapies a try before you give up. And best of luck kicking the pouch issues. . . .

VSL-3 is s great option. But... you'll have to get the pouchitis under control first with an anti biotic. VSL could be effective in preventing a return if you take it faithfully.
http://www.vsl3.com/VSL3/default.asp
Bill

VSL-3 would be great but I just can`t afford it and my drug plan doesn`t cover it not even partialy.

Hi Anna,
There are other things to use. Personally, I am now on xifacan with no side effects at all for over 2 years. Before that I used Pentassa, also with good results. I have been able to wean down to a very low dose of the xifacan. It's when I stop something is when I get in trouble so it looks like I will be on something forever.
I also started re adding VSL every few days to the mix since my insurance company now covers it.
Susan
PS I would never take flagyl-makes me sick as a dog.

Thanks Allycat for your reply.I did not know you can take Pentasa for pouchitis.Thats what I was on to keep my U/C under control many years ago.The only thing is I was taking 8 pills at one time twice a day thats 16 pills a day.Plus the pain meds I`m on I figure my body is toxic enough thankyou.Like my thread says I`m in a quandry.
P.S. When you say sick as a dog what exactly are you saying?

I had pouchitis for over 18 months. There comes a time when you need to try something. Cipro can be scary, (and if you take too much, well lets just say it's bad) but it helped me a lot. I was on procto foam for a while, that helped. My pouchitis would respond to one drug, the come right back, and respond to another. It's like shooting in the dark, just keep plugging away and you'll hit something.

Anna,

If you are dead set against using any medications and do not want to
spend much on probiotics, perhaps room-temperature yogurt cultures
would help:

http://j-pouch.org/eve/forums/a/tpc/f/3251071921/m/2431...431086051#2431086051
http://www.fermentedtreasures.com/yogurt.html
http://gemcultures.com/dairy_cultures.htm

You buy one batch for ~ $10, mix it with ordinary milk and wait 12-18 hours to
make yogurt with it, save some for making the next batch, and eat the rest.
I'd love to know how many bacteria are in one serving -- hundreds of billions,
comparable to VSL#3?

Thanks, Sierra Barb for that old post. I'm sorry that the yogurt did not turn
out to save your j-pouch. It might work for someone else, though.

Hi Anna,
First off, the risk of cancer goes up if you have pouchitis just like if you have uc so it is best to get the inflamation under control. Pentassa now comes in larger doses so the max can be 2 pills 4x a day. I would think that once getting your pouchitis under control you can stop pains meds if that is why you are taking them. Also, xifacan is an antibiotic that is only released in the intestine-thus less toxic. Recently, because of my gall bladder surgery I went off my meds for a month and got sick again. So to nip in the bud I went back on Pentassa full dose, xifacan 2 pills 3x a day, 1 packet vsl,and 1 canassa. I did this for less than 2 weeks and weaned off everything except the xifacan which I lowered to 2 pills 2 x day and every few days VSL#D ( I would take it more but I forget I have it). I hit the pouchitis hard for a few weeks and then taper. Been doing this for 6 years but have decided now to just maintain with the xifacan since it is not worth the trouble trying to get off. The pentassa alone worked well for over 2 years but I chould not maintain remission on a low dose and I have no patience popping pills so many times a day. As for the flagyl-makes me dizzy, nauseau, and general unwell really sick feeling.
PS I also make my own yogurt.
Susan