Any jpouchers on here from Central Massachusetts that have found a good G.I. doctor locally. I switched from Boston about 10 years ago and I’ve not been happy with the doctors closer to home. They don’t seem to understand that sometimes I need antibiotics for my pouchitis longer than two weeks, when I can’t function without them, and just seem clueless about the whole thing.
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Have you tried sharing the guidelines with your doc?
I haven’t, that’s is a good idea. Last time I explained to my doctor that sometimes I need antibiotics more than two weeks to get through the flare and she agreed to one refill. What resources do you recommend I bring with me? Is there a reputable site I can print something from?
Yes - the Guidelines from January, 2024 were published by the clinical journal Gastroenterology (https://www.gastrojournal.org) and are freely available. Search for "pouchitis guideline" in the search box and the first link should be "AGA Clinical Practice Guideline on the Management of Pouchitis and Inflammatory Pouch Disorders." Perhaps this link will get you directly there: https://www.gastrojournal.org/...-5085(23)05142-9/pdf It's a long article, but the key part for pouchitis is Table 3 ("Executive Summary of Recommendations for the Management of Pouchitis and Inflammatory Pouch Disorders").
If you just need a longer duration of therapy for infrequent bouts of pouchitis the guideline says "The typical duration of antibiotic therapy for the treatment of pouchitis is 2–4 weeks."
If you need long-term antibiotics, within Table 3, Recommendation #6 involves antibiotics for chronic antibiotic-dependent pouchitis. Here's the text of that recommendation:
"Recommendation 6. In patients with UC who have undergone IPAA and experience recurrent pouchitis that responds to antibiotics but relapses shortly after stopping antibiotics (commonly referred to as “chronic antibiotic-dependent pouchitis”), the AGA suggests using chronic antibiotic therapy to treat recurrent pouchitis. (Conditional recommendation, very low certainty of evidence)
Implementation considerations
*The panel suggests endoscopic evaluation of the pouch with confirmation of inflammation and ruling out alternative etiologies in patients with recurrent pouchitis.
*Lowest effective dose of antibiotics (eg, ciprofloxacin 500 mg daily or 250 mg twice daily) with intermittent gap periods (such as approximately 1 week per month), or use of cyclical antibiotics (such as rotating between ciprofloxacin, metronidazole, and vancomycin every 1–2 weeks) may be considered to decrease risk of antimicrobial resistance"
Note that Recommendation #7 offers guidelines for use of biologic medications for the same situation - some doctors and patients prefer antibiotics, and some prefer biologics.
This is great thank you!
If you are in Boston at Mass General Brigham Hospital, MGH- in my opinion, I feel safe to say you’re in a good spot. Communication is key. Keep messaging through the portal with when needed.
Thanks! good to know their good. I’m over an hour from Boston, or would still be there went to the Chrons and colitis center affiliated with Massgeneral. They were great but the drive not so much had to take a whole day off work just to go to appointments. The worst thing about my doctor is they don’t have a patient portal to communicate always have to call and take up to a week to hear back typically.
A week to reply, that’s not good. A patient portal is so good for a doctor’s office to have. My prior primary care doc in Worcester did not have one. Makes things difficult. I don’t know any GI docs in central MA current day, I used to go to Elise Jacques, MD but she retired. I’d think most docs have some type of portal now maybe UMass hospital has a good GI doc & portal. Not sure if that’s closer for you.