There are many others, augmentin and xifaxin being among them.

I have been on antibiotics for pouchitis for 20 years. Can't get off them. You do need to rotate and cannot stay on cipro and flagyl permanently.

I have taken up to 1000 mg cipro and 1000 mg flagyl a day, but maintainance dosages are usually less. You adjust based on symptomology.

In 20 years of battling pouchitis I never had bleeding. Bleeding is only something I had with UC.

thanks....If you could be so kind as to mention more of the medications/antibiotics you have taken for pouchitis....I'd like to know about the different types...thanks for your time...

Levacquin (similar to cipro, in the same family of antibiotics), keflex, tinadamax.............there are many others. It is not a question of what is out there but what you can tolerate and what works. Just because there is a med does not mean it will either work and/or be tolerated. It is trial and error and what works well for others might not work for you.

In my opinion the 4 most effective are cipro, flagyl, xifaxin and augmentin/amoxocillin.

Thanks, that's very true. I have always worried that treating pouchitis is limited with medications, but that seems not to be the case..thanks again...

I was also told by my Doctor that if antibiotics failed, the last line of treatment is biologics (remicade, 6MP, Humira). But in 20 years, antibiotics, rotated properly, have not failed me. If they ever did, there are the biologics family of meds, and there are multiple biologics including a new one from what I heard. So there are many treatments that are possible.

I have heard of these. I believe they increase your risk of certain cancers, which worries me...

The risks are why they are the last line of treatment. I am not so aware of the cancer risks, but since biologics work by suppressing the immune system, they expose you to opportunistic infections. I think that is a much bigger and more immediate concern.

What are the symptoms of your pouchitis? Again all I have is bleeding, once to the point of needing a blood transfusion. Also have you ever been on 5-ASA. I read somewhere that this is used also for us pouchers...

quote:

What are the symptoms of your pouchitis?

Increased urgency, increased frequency, nightime leakage and spotting, increasing wateriness of schools. No bleeding.

Regarding 5-ASA: It is called Rowasa, Canasa, and Mesalazine in the USA, and Pentasa in capsule form.

http://en.wikipedia.org/wiki/Mesalazine

It is used locally in enemas and suppositories and mostly stays in the gut. Neither the enemas nor suppositories helped me. I could never hold them and if you can't hold them you are not going to benefit. It would also be illogical for me to use such drugs now (enemas or suppositories) because I have inflammation from backwash stool ABOVE the pouch, and the inlet to my pouch is narrowed due to inflammation.

However, I take Pentasa as well as antibiotics, and Pentasa is another derivative of the same drug taken orally as blue capsules. I have taken Pentasa for many years, with antibiotics. These drugs have not been CURATIVE. They keep the pouchitis in a "simmering state", without eliminating it or stamping it out. I have been in "simmer" mode for 20 years. I suppose my J Pouch would have been cooked back in the 1990s without these drugs, so I do not complain.

I have been at this for 20 years with pouchitis, and there are very few things I have not tried (biologics being the main thing, although I was put on Imuran to treat UC in 1991, which was a disaster).

Doesn't inflammation of rectal cuff cause bleeding?

quote:

Doesn't inflammation of rectal cuff cause bleeding?

Not necessarily. My last scope showed some inflammation there. However it is possible.

Oh yes I recall good old Imuran. It was my last resort medication before surgery done. I was somewhat glad it did not work at all, because this drug scares me . Thanks again for the info............x