I had to stop Flagyl completely as it was causing recurring pancreatitis. Pancreatitis is not fun at all.

I am fine off it now.

I am almost finished with my dose of flagyl. I only took two a day and so far thankfully it didn't have any bad effect on me. I am now weening myself down to 1 a day with 5 days left to go. I hope I don't need any more antibiotics after this. Good luck to you.

I had a moderate case of pouchitis a little over a year ago. I took Flagyl, 3 pills a day for 10 days. Worked great for me. And I had no side-effects.

Kia, what is the dose of each pill? It might be that you were precribed a higher dose than necessary. My doc always prescribes the lower dose, 250mg. Some people take the 500mg dose, but at the higher doses, there is a higher risk of side effects. I never experience fatique with it, actually the opposite. I have more energy with the pouchitis resolving.

So, it is not just the frequency, but the dose of each pill that matters.

Jan

Hi Jan, That's interesting. She gave me 500 mg and a 2 month supply with no instruction on when to stop taking it. It's bizarre!

She's really hard to get a hold of, but today is day 10 so I am going to track her down. Obviously, I shouldn't take it 2 months straight.

Not at that dose, unless it is absolutely necessary. Higher doses also increase your risk of peripheral neuropathy.

I just love, love, love being able to email my doctors. I always hated that phone tag thing, and the receptionists never seemed to transmit the message I wanted to send. I have to wait a day or two for a response sometimes, but that was true with phone messages too. Sometimes those messages would get lost on the desk and I would have to call again.

Jan

Good grief, add this to list of frustrations with docs! I don't know what I'd do without you guys! Thanks so much for the info, Jan.

I was on hold nearly 10 minutes before the secretary came back to take down what I know was her summary interpretation of my message.

They do not offer an email option. There is an email addy, but they only check it periodically and do not want specific care questions sent.

So now I wait for a nurse practitioner call back today bc the doc is out this week.

Hopefully, the NP is more responsive then your MD is!

My providers are part of a large, self contained HMO (Kaiser) and they do everything they can to streamline things and to keep you from having to come into the office, like email. They even schedule "telephone appointments," where the doctor is scheduled to call you during a window of time.

Other providers have no incentive to adopt these things, since they only get paid by the insurance company for actual face-to-face visits.

Good luck with the NP!

Jan

Yeah, it's all about the ins many times, isn't it?

The NP called back and said she doesn't typically get calls with people saying they are fatigued. I think I might lose my mind.

She told me I should take 3 x500mg until I see the doc next Thursday, but at least get 2 down if I can't do 3.

She said the dose is not unusual and the doc prescribed it bc of pouch inflammation, anal canal inflammation and what they saw in the biopsy.

She said it's not unusual for patients to be on it for a long time and that they have had people on it for a month or more. I did question why it wasn't for 10 days and 250mg pills, but she dismissed it referencing what the doc saw during the exam and biopsy.

She told me 500mg once a day is not therapeutic.

Jan, what do you think of it all?

This sucks.

I agree that once a day dosing is not therapeutic. You need at least twice a day to keep the levels up there. So, twice a day at 500mg is what you are looking at. But, it would seem that they need to be responsive to your specific needs and if 500mg is causing side effects, then they need to address them, either by changing the dose, or the antibiotic, such as Cipro.

Sure, it is not uncommon for longer durations to be necessary, but it is more typical for a shorter course to start with, then extend it if necessary. It seems that in this case, it is mostly a lack of information up front. Maybe if you were told, this is a bad case and you need to take the prescribed dose until your follow up visit, you wouldn't feel like you were in the dark.

I get the impression that unless you can follow the instructions, somehow you are being a noncompliant patient. That is not really how it works. If you are not tolerating a treatment, your job is to report it and it is their job to adjust treatment or give you a reason they cannot adjust it. They are not giving much in the way of options, other than to not follow instructions.

I suppose you could cut the pills in half and take them three times a day and see how that goes... We are not cookie cutter patients!

Jan

Thanks, Jan. Makes sense.

I think I will try 2 x twice/day at least until I see the doc on Thurs. If it's intollerable before then, I will try cutting the pills as you suggest.

quote:

I suppose you could cut the pills in half and take them three times a day and see how that goes... We are not cookie cutter patients!

This is not necessary since flagyl is offered in 250 mg pills and in 500 mg pills. But, she would be stuck cutting the pills she has now, until she gets another prescription for the 250 mg pills. They are also very tough pills to run through a pill cutter. Flagyl pills tend to crumble when you cut them.

I personally think Kia should speak to her Doc about lowering the dosage of flagyl and adding cipro to the mix. Maybe 250 mg flagyl and 500 mg cipro 2x daily in cocktail style fashion, or something like that, should be instituted on a trial and error basis. Doctors often prescribe those two antibiotics together (cipro and flagyl) as they create the broadest possible spectrum of coverage, as opposed to one antibiotic doing a solo act. It's like getting an excess liability insurance coverage policy. You are getting more coverage against the risk of pouchitis.

Kia did try to connect, but could only get the NP because her doctor was not available. The NP basically told her to take what was prescribed until she saw the doctor. That was why I suggested cutting them in half in the meantime, if she could not tolerate the full dose.

I have never needed more than 250mg personally, but maybe my pouchitis was never that bad. I don't think they typically go to combination antibiotics unless there is inadequate response to the single antibiotic. She had a great, and immediate response, just having side effects.

Jan

I can't really comment, either, about how bad it was compared to others. I only know what I was dealing with.

For 13 years I assumed it was due to a bad tear during vaginal birth as that is when the incontince started. For all I know, this could have been brewing that long.

And, yes, I did try specialists along the way who never mentioned this thing called pouchitis. I never heard of it until finding this forum. I think they just jumped to an assumption based on my mentioning when this all started.

Boy, that's a long time to be suffering without any relief of your symptoms. I would not be surprised if it started out as complications from your childbirth tear, but most of us will get pouchitis at some point, and left untreated, it will fester. What a shame that none of your prior doctors felt that there was any need for further investigation.

But, you have found this forum to help you help yourself, so hopefully that makes up a little for your lost time.

Jan

Yes, Jan, bc it has gone on so long I cried for a week after finding this forum. It was like a miracle being able to put a name to my symptoms and find relief for something I thought I was stuck with for life.

It feels like when my colon was removed....a rebirth and a second chance at life.