How long between pouchitis bouts is a recurrance?

quote:

Is there a time frame that would tell me that this is a new bout and not a recurrance?

There is no such thing as a standard time frame by which pouchitis "recurs" after being treated. It's possible that your initial treatment did not stamp it out and it is also possible that it will need to be treated chronically. There is no way to know at this stage. Time will tell.

I have had pouchitis for 18 years. It has never gone away and all of my many scopes show and prove that. However, I do not have symptoms because the symptoms are effectively treated with medications. It's called chronic "simmering" pouchitis.

Chronic and/or recurring pouchitis is diagnosed based on how frequently it occurs. It does not mean that the recurring case is the same case. It just reflects the notion that this is not a simple case of pouchitis, like a urinary tract infection, that responds to treatment and that is the end of it.

Two instances over a period of a month is too soon to tell if this will ultimtely be considered chronic or recurring pouchitis. The main thing is that once it is considered chronic/recurring, the treatment dynamic may change from short term treatment to maintenance and prevention. This could simply be an instance of wrong drug, dose, or treatment duration.

One question though. Why Biaxin? The typical first line treatments for pouchitis is Flagyl or Cipro for 10-20 days. Maybe you can provide your doc with some medical literature about the usual treatment protocols? Or can't he confer with a GI for advice?

Jan

I'm glad you don't have symptoms because that is a long time to have this issue indeed. Thanks for replying. After speaking to my pharmacist I have booked a GP appointment for the morning and left a message at my surgeon's office for further guidance. I think this is my third or fourth bout now.

By the ways, I agree with Jan - the "front line" antibiotics used to treat pouchitis are cipro and flagyl. I have never even heard of Biaxin, unless it has a different name in the USA. Perhaps a little cipro/flagyl cocktail action will stamp this out without further ado. Good luck.

I don't know why he went with Biaxin and I never thought to question it. I called the pharmacist to talk about what I had taken and she looked it up. She said it's more typically taken for respiratory stuff but that it wasn't out there to take it for GI issues. I have only seen this new GP twice now but when I did a meet and greet in the fall I did tell him the standard was Cipro or Flagyl.

I haven't seen a GI or my surgeon in a few years now. I will indeed print off some standards regarding treatment tonight; thanks for that idea, Jan. I will give my new GP another shot but I am probably better off with someone more knowledgeable. I just didn't require it before now, perhaps.

What you said makes sense about chronic versus recurring. I am so grateful to you for your knowledge!!!

I'm an idiot, where is the quote box?

CT, when I called the pharmacist had to look up Biaxin because she wasn't familiar with it. I was curious so I just googled it. http://www.drugs.com/biaxin.html

I will indeed ask for a new cocktail. Thanks!

Clarithromycin (Biaxin) has been used for pouchitis, but it is just not a first line choice.

Here is a link for your doc that offers a free full text to the article, and gives lots of information about pouch disorder, not just pouchitis. So, you can print the whole thing and he can keep it for reference.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134805/

If antibiotics do not work, you really need to see a gastroenterologist, as you will need to be scoped.

Jan

It's a miracle! My surgeon's secretary fit me in tomorrow afternoon. That's unheard of. I cancelled my GP appointment but I will still print out the info for next time. Thanks, Jan!

The diagnosis of chronic pouchits is not only based on symptoms although obviously important but also the histology form any biopsies. Hence it is important in the face of continuing problems to be seen scoped and biopsied. This not only affects treatment but also funding of the same?
Hope that is helpful

Thank you for all of your comments, everyone.

I saw the surgeon today. I had forgotten how thorough he is! He thankfully used a pediatric something or other when he checked my pouch. He could see granules and no signs of Crohns but said it can be hard to tell. He fired a letter off to my GP saying no Biaxin, stick with Flagyl and then Cipro.

Right now he has me doing two weeks of Flagyl only. If I'm not feeling better in two weeks he will call in Cipro for another two weeks. If I'm not better in four weeks he's sending me back to the GI clinic (haven't been there since before surgery). I'm optimistic that none of that will be necessary and I'll be on the mend soon. :-)

Thanks for your support, I do appreciate it!