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Kenzer
Hi there! I have new diagnosis of PSC and have had antibiotic dependent pouchitis since a few months after takedown in 2011. I have successfully (for the most part) managed the pouchitis with a variety of antiobiotics (cipro, keflex, bactrim, flagyl, etc. Sometimes in combination, sometimes by themselves, but always some sort of antibiotic) and a low carb diet over the past couple years.

With the new PSC diagnosis my GI doc is very concerned about antibiotic resistance. I am as well, but I don't want to go down the Entocort road either.

Currently I'm on flagyl (250mg x 2/day) with no plan for rotating. My GI doc wanted to do entocort as well, but I convinced him to just try flagyl for now. I'm doing very well on the flagyl now, but I know that it is likely a matter of weeks before it loses it's effectiveness.

My question for you all is - what do you think my best bet is for maximizing my success with flagyl? 1 week on, 1 week off with lactulose? Taking a smaller dose per day? Before I do anything I will discuss all options with my GI doc, but I want to be prepared when I see him with my ideas. Smiler

Any help, suggestions, and thoughts are much appreciated!!

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R Rebe0505Member
i wish i had an answer ..everyone is different..i have rotated antibiotics forabout 4 years now..no pattern when one starts loosing effectiveness i switch..sometimes they last longer than other times..augmentin lasted 3 months last cycle this time one week!! i too have recently eliminated all starchy carbs and try to restrict myself to just fruit sugar..my doc. shen has never recommended entecort when i have this ups and downs yet..just recently we wrote him and he wants me to start an antifungil for 7 days..did not say why in e-mail...i told him i would start it after thanksgiving keflex after the failed augmentin is working so do not want to be inpain etc over thanksgiving just in case..he wants me to try that and stop antibiotic..
R
KenzerKenzerMember
Thanks Rebe0505! It's at least good to know that Shen has not suggested Entocort for you. The antibiotics work for me, my doctor just doesn't really want me to rotate. Do you live near Cleveland clinic? I've considered trying to see Dr. Shen but it just seems very challenging logistically. If you are traveling to see him from a distance I'd love to hear how you started the process.
Kenzer
R Rebe0505Member
i live in cal..i travel a great distance..you start process by calling cleveland clinic to set up to see him..we usually take three days one day to go ,one day to see him and next day fly back..he needs to know you are coming from a long distance so he can schedule appt. to see and examine you or whatever in morning get results and see you again in afternoon if you schedule as tight as we do..in our case we try to make it as pleasant as we can for ourselves..we stay right at the first class hotel attached to clinic this way if weather not good we never leave indoors..but that is certainly not primary just what we do..

shen never mentioned entecort..he knows i am on rotating antibiotics..does he love it i think not but i would think if he thought entecort was a lesser of the two evils i think he might have suggested it..
R
KenzerKenzerMember
Thanks again for all the information!! I've tried calling Shen's office before and explaining the out of town bit but never got very far. It's great to hear how you do it - this way I sort of know what I'm aiming to accomplish (and that others do it as well).

PSC stands for primary sclerosing cholangitis - it's a rare disease that causes scarring and blockage in your bile ducts. The bile then builds up and causes damage to the liver. It's progressive and there's no treatment other than a liver transplant.

I've had it for years, but I've just been diagnosed recently (it's largely asymptomatic until your disease has progressed). Anyway - my treatment for pouchitis now just has to be a bit more holistic. We want to make sure we are not creating any (anymore) drug resistance and/or causing any more damage to my liver.

Last but not least I just wanted to share that I'm actually from CA Smiler and had my j-pouch surgeries done at Cedars-Sinai in LA. Excited to be headed back there for Thanksgiving very soon.

Thanks again for all your help! I think I'll try calling Dr. Shen's office again next week. Hopefully I'll have better luck this time.
Kenzer
vanessavyvanessavyMember
Flagyl should always be rotated due to nueropathy. My GIs (mainly Shen) only hand that out if they have to and never have me take it longer than 14 days straight. I usually can only take it since I had c.diff from Cipro and Omniceff long time use but the Flagly has caused horrible neuropathy, I had about a month of it in a bag and decided to treat myself for a UTI.
vanessavy
Last edited by vanessavy

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