It's terrible that you feel as though you have to beg for medication.  Certainly these drugs have side effects and some docs are unwilling to maintain patients on Cipro long term because of the black box warning.  Still, it works.  And many GI docs do understand and will prescribe.

https://www.gastrojournal.org/article/S0016-5085(23)05142-9/fulltext

This is the  recently published AGA guidelines  for treatment of pouchitis. If your gastroenterologist isn't familiar with the recommendations ( see Table 3 Executive Summary) maybe share a copy of the article.  

I’m sorry you have to beg for medicine.

An option would be to find a chrons/colitis department at a university hospital where they have a larger cohort of j pouch patients.

whenever I come down with SIBO (every 4-5 months lately) the nurse practitioner fills a prescription for two weeks of antibiotics almost immediately, with no questions asked.  They realize I know my body and recognize the symptoms.

They know how all of these j pouch issues need to be treated, and don’t want us to suffer.

thank you for the feedback/response. The fill in doctor today heard me out regarding having chronic pouchitis and the consultations I have already had at Mayo Clinic, etc. She decided to extend the prescriptions for another year then have a visit. She had mentioned a new drug for treating pouchitis (Vedolizumab) which I am not familiar with but will look more into it to see.

@Furious Pouch posted:

She had mentioned a new drug for treating pouchitis (Vedolizumab) which I am not familiar with but will look more into it to see.

It's also known as Entyvio. It's a biologic which, as with the other biologics like Remicade, Humira, and Stelara, are a second line of treatment after antibiotics use doesn't work or becomes less effective over time. I was on chronic antibiotics due to pouchitis for over 20 years (cipro and flagyo and others in rotation) but over time the inflammation becomes more resistant to them. I went on Remicade in 2015 and have done fairly well with it since.

Entyvio is usually considered after Remicade because there is (or was) less clinical data on its effectiveness treating pouchitis, though that may have changed since 2015. I have personally observed those who had reactions to Remicade placed on Entyvio. Entyvio has a different mechanism of action and shorter infusion time (30 minutes).

https://en.m.wikipedia.org/wiki/Vedolizumab

Yes!  My new GI doc is anti-antibiotics.  My doc of 30 years said, “some people just need them.”  Is it a generational thing?  Some new doc seem afraid of their own shadows.

If they haven’t read specifically about chronic pouchitis then the antibiotics seem foreign. The younger docs have also been more exposed to biologics during their training. I did recently have an appointment with a new, older GI, and he was comfortable until I mentioned that I’d likely need biologics if/when the antibiotics fail, and that’s when he referred me to an IBD specialist.