Cipro now ineffective for Pouchitus

For years, every October, I seem to have a nasty bout of pouchitus. This year seems no different other than it started at the end of Sept. I started on a dose of Cipro which normally knocks it out in a day. It hasn't been working, so I went to the doctors yesterday while still taking Cipro along with fiber and Immodium.  My general practitioner physician (actually his nurse that saw me) said that sometimes you need to take it together with Flagyl.  Flagyl has never helped me in the past, but I figured I would try whatever if it could get me to feeling better. 

Admittedly, its only been a day so far, but I am not seeing any difference being on Cipro and Flagyl as opposed to just Cipro. Still cramping and diarrhea. 

What is the next step of treatment if Cipro (and Flagyl ) is not working? Anxious to get to feeling better and hoping that this doesn't send me to another hospital stay like it often seems to (when I didn't get treatment with Cipro). 

 

Any thoughts or guidance would be greatly appreciated.

 

Mike

 

 

Original Post

Mike

I'm really disappointed to hear you have pouchitis w the K pouch and so sorry for you.  My J failed, due to pouchitis and other such complications, and went to the K.  The stoma nurse at Cleveland Clinic suggested to irrigate very often, apparently to make certain that bacteria isn't forming--honestly I'm not sure why.  At any rate I irrigate almost every evacuate and in three years no pouchitis.  I also continue on my diet of no refined sugar and reduced, if any, simple carbs.  That helped in the past.

All that to suggest you try Augmentin, which helped me more than Cipro.  I had also taken Invanz, but not as an IV.  Rather I mixed a bit of water in the bottle and drank it.  Cute bottles btw!!  I think I liked the bottles more than it really helped.  search on this site for pouchitis and you 'll get many suggestions.   

Also, if this is a seasonal event what changes have you made to your diet since the summer, and what changes do you make in the winter?  janet

 

Thanks Janet,

 

while i I am sure diet changes couldn’t hurt, Dr. Bo Shen at the Cleveland Clinic had suggested that pouchitus seemed to also show as seasonal almost as an allergy. When I last saw him (quite awhile ago now), he said there was still a lack of understanding why this was.

I may try and irrigate a little more(per your idea) but don’t generally change that or my eating habits throughout the year. So there is nothing that really “triggers” it like different foods, less care etc..

 

i am not not familiar with Invanz.

Flagyl effectiveness seems to diminish over time. New GI doc is adamant that flagyl is NOT appropriate for long term maintenance due to neurological complications. He is suggesting Butyrate enemas (which is very expensive and not covered by insurance) or Rifaximin. Has anybody tried either of these therapies?

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