Long-term antibiotics for pouchitis

I have been on rotating antibiotics for well over 20 years to treat chronic pouchitis.  Rotation is necessary.  That is a bummer about xifaxin, my insurance company stopped covering as well.  But you can use many others including cipro, flagyl, levacquin and tinidazole. Do not rotate cipro to levacquin or tonidizole to flagyl as they are in the same families. Go from one to the other although cipro and flagyl can be taken in tandem. 

My question isn't about rotation, more is medication for chronic pouchitis necessary when I have only had pouchitis twice over 5.5 years. I don't think I have chronic pouchitis, and think I could be treated just case-by-case unless it becomes chronic.

Blu, I like your logic better than your doctor's. I think your second bout of pouchitis should have been treated as a bout rather than a life sentence. I think it's wise for you to see how you do without antibiotics, and that there's no evidence that it's chronic. If you find yourself slipping back into pouchitis that's a different story, of course.

You can appeal your insurance company's denial of Xifaxan, but it can take some real perseverance to win those appeals.

Even if you find that pouchitis reoccurs, you might be able to prevent recurrences with VSL #3 DS (a potent probiotic). Unfortunately it's also expensive, though cheaper than Xifaxan. Your insurance company *might* cover it.

Good luck.

Thanks Scott. I already appealed and they denied my appeal. Sometimes I hate insurance.

Seems odd to me your doctor would prefer you to be on antibiotics forever over a second bout of pouchitis. ???

If it were me, I'd stop the meds and see how I do. I'd also find a new doc. 

Good luck! 

to weeks i whent to the er .i had dcip to much cypro .10 days on flagy 10 day later it came back on vancomycin10 days hopeit will not com back thank you dave habeski

Blu-

The first appeal is usually denied. The insurance company may have a second level of appeals. Once you've exhausted the company's appeal processes you can go to your state insurance regulator. If you're in the District I think it's http://disb.dc.gov/service/fil...aint-or-report-fraud

I've had good luck with the Maryland Insurance Administration, which helped me get VSL #3 DS covered after repeated denials by the company. It really does take perseverance. I suggest basing any appeal clearly on medical necessity. You'll need a supporting letter from your doctor.

I agree that insurance companies are the worst. But they do change opinion if you continue with the appeals. It just all depends on how motivated you are. 

In regard to chronic vs acute pouchitis, I also agree. But, you should not look at it as 2 instances in over 5years, but 2 instances in two months. All those years in the past without pouchitis don't really matter, since pouchitis risk goes up the longer you have your pouch.

Still, two cases of pouchitis is not enough in my mind to make the leap to chronic. But, it could mean you just need a longer course of antibiotic to deal with it. You'll definitely know if this turns out to be chronic. It is safe, and even preferable to go off antibiotics as long as you can, even if it is chronic. My GI preferred Remicade to chronic antibiotic use. 

There is no perfect solution, so you go with the one you can live with.

Jan

I've been on and off antibiotics for pouchitis for years and am 15 years out.  This last year I've cut out things that cause inflammation....gluten dairy and doing low sugar as they all cause this.  I also take probiotics daily. The refrigerated pill form kind and I am antibiotic free!!  Keep my bad bacteria from getting out of control.  I wish doctors talked about this more as preventative care rather than piling on the drugs.