Hi, I've had the pouch for over ten years now and have been experiencing severe pouchitis for the last year or so and I started with cipro which worked like a charm, but after stopping it, my symptoms came back. I've been on and off the cipro a few times and now it doesn't seem to be working. In my last attempt, I'm taking it with a round of steroids (budenoside), but it hasn't improved and I've gone to see my doctor and he's given me two choices; remove the pouch and get the external bag or start a new treatment called Remicade, which is a infusion of antibiotic given through an IV. The removal of my pouch is not an option right now, I'm single and I'm afraid getting the bag will really make my chances of finding that special someone even harder and the Remicade is a new treatment with very harsh side effects, so I feel very lost right now. Had I known from the start that I could have taken the cipro long term, I wouldn't have stopped it, I really want to try to stay away from anything with horrible side effects. I've tried the VSL #3 probiotics, but they're too expensive to keep up with, so any other suggestions are welcome.

Thanks,
Tina

How was your pouchitis diagnosed? Did the doctor do a digital(finger) rectal exam to check for a stricture that might keep the pouch from emptying properly? There are other tests that can be done too to check to see if the pouch is emptying like it should. If it's not emptying things can back up and get infected/inflamed. I'm saying this because I was treated for pouchitis for over a year when the cause of the pouchitis continued and caused other problems later.

FloraQ is a good probiotic too. It's expensive, but nothing like the VSL. Jarrow makes good ones and Culturelle extra strength and Florastor are others to consider.

Remicade might help(It's not an antibiotic, but a different class of medications), but I'd get other things checked first if you haven't. It's like you said, IV, and sometimes you have to take other medications at the same time to keep from having an allergic reaction to it.

Some people take Cipro and Flagyl or one or the other long term, sometimes at lower doses, to control the pouchitis. As long as you don't have side effects you should be fine. Rifaximin is another antibiotic to try that is absorbed more locally than other antibiotics with less side effects.

Keep searching though and keep us posted.
Take care...Lori

Tina, I would say removing the pouch is way too premature at this stage. In fact, I'm surprised your doctor is effectively telling you you have to choose between this and remicade - especially because you're clearly (and understandably) very reluctant to go back to having a bag. I would make it very clear to your doctor that you see removal of the pouch as a last resort treatment.

As Lori has pointed out, becoming tolerant to Cipro has by no means exhausted the potential for treatments running well short of trying remicade. It doesn't even sound like you've been given flagyl yet (which, along with Cipro, is one of the standard pouchitis treatments). There are also a number of other antibiotics which are used with some success.

Also, there are cheaper probiotics than VSL. I have heard Flora Q, PB8 and Culturelle are all used with good results. Some people are also reporting that they have managed to get their health insurance providers to pay for VSL so I don't know if that's an avenue you have fully investigated.

Thank you Lori and Mike, you have no idea how helpful this has been. I've made a note of your suggestions for both the probiotic and antibiotic and will discuss them with my doctor and naturopath, when I find one. Do you know if I can find the probiotics here in Canada?

I always thought that very same thing whenever my doctor suggested removing the pouch and the Remicade, those are both last resorts for me and they know that but for some reason they keep mentioning it. I have a feeling it's because the doctors here don't know much about the pouch and therefore don't have much to suggest and it makes it very frustrating. I can't tell you how much I've been told or made to feel like a rare case because of my pouchitis and because the inflammation is specifically in the pouch instead of up into the intestine.

To answer your question Lori my pouchitis was diagnosed through a scope and a manual exam and he did see that I needed a bit of a stretching and that was done a few months ago. And it's been since then that I've been having painful symptoms.
And Mike to answer your question, I was taking Flagyl but for only a couple of days because I had a better response to the cipro instead. But now I guess I will ask my doctor about taking both cipro and flagyl together.

I forgot to ask you if the other probiotics; like the FloraQ come in capsules or powder form like the VSL?

Hi Tina,
You should try xifaxan. It got me into remmission and now I have been able to stop it and just use VSL#3 along with Pentassa. There are other drugs to explore. It is just finding the right combo.
Susan

Tinat,

I experienced the same thing. Have you tried Rowasa enimas? I have just started them and gone off Cipro and everything is A-OK. That coupled with healthy doses of Metamucil have been fantastic. I've had my pouch for 15 years and last July I experienced a VERY bad bout of pouchitis. This has helped a ton and I am very happy. Check it out with your doc.

Hi all,
I just wanted to give you an update on my condition and I've decided to see a Naturopath and try more natural ways of healing my pouchitis. It looks hopeful, however why is it that most of the natural remedies taste awful!! I'm trying a powder called "Slippery Elm" (tastes like dirt) and a capsule that contains a lot of plant type of ingredients used to help with inflammation and all sorts of intestinal problems. She also recommended that I drink a glass of Papaya or Pineapple juice every day, those are also natural anti-inflammatories, but they have to be juiced in a blender. I haven't really noticed much of a difference but with anything it takes time and hopefully one day soon I'll be able to ween myself off the cipro and the budesonide. Remicade is my last resort and I really hope I don't get to that point and I'm finding that I am running out of patience and just want a better quality of life and feel normal again, like I did with the cipro, when they did work in the beginning.
I'd love to hear anyone's opinion this or experience with a Naturopath if they have it.
Thanks all, I'm smiling on...
Tina