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I am getting pushback on trying to get my Flagyl/ Cipro meds refilled. I have been using them for the last 3 years (every other week or 7 days on then 7-10 days off them) and this has been effective thus far. I seem to have to beg my GI doctor / nurse to fulfill these monthly. Has anyone else ran into this? anyone else find this the best method to treat chronic pouchitis? I am seriously considering driving to Nogales to try and get a bulk order filled and avoid this nightmare.

background: 5 years ago after moving from FL to MN, I started to get flare ups of pouchitis (had not had any issues for almost 5 years of living in FL). Went to GI specialist and tried all different steroids/foams and nothing worked. Went to Mayo Clinic to get more tests/second opinion and they determined I have antibiotic dependent pouchitis and seemed to understand the Cipro/Flagyl combo was adequate direction until it stops working. They provided refills for a year or so during COVID then pressured me to find a local GI clinic to provide refills. this is where I am today after a primary physician stopped filling and am now at this specialist that seems to be lacking experience in J pouch related issues.

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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.

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

Last edited by CTBarrister

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.

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