Hi Everyone,
I am in the midst of a battle with my insurance company to get them to reimburse the cost of VSL#3 for my daughter and am looking for patient testimonials of what the suffering and symptoms of pouchitis are. Most of the doctors say that a case of pouchitis "is easily cured with a course of antibiotics," but we're of the mindset that we'd rather prevent it if we can with probiotics.

If you have the time, I would love to hear from those willing to describe for the board of healthcare professionals that will be reviewing our case, how aweful a case of pouchitis can be. I have read many of the stories here and am humbled by the compassion and support from the members of this online community.

My daughter has been taking VSL #3 since her takedown in February and knock on wood-Thank God, has not experienced what many of you have with pouchitis. We do believe that her taking this probiotic is helping to keep her pouch healthy.

Thank you in advance for taking the time to read this and for any help that you can give us.

I just started a few weeks ago, but have finally been able to start weening off the antibiotics, which my body had started to react BADLY to. I had TD last october and have constantly been on antibiotic at full dose. This is the first time i have felt good when not on full doses of something or other.

I think that the problem is that the truth of the matter is that pouchitis is generally infrequent and easy to treat, and that is why insurance companies are not prepared to jump on board when there are not large, multicenter studies on the subject. I have never taken VSL#3. I've had my pouch since 1995 and have had pouchitis maybe three times and only once was it significant. All cases quickly responded to short courses of Flagyl. I do take prophylactic probiotics now, but it is Culturelle, due to the cost of VSL#3.

I hope you come up with the documentation you need. Insurance companies can be very tough to deal with.

Jan

I have been on Flagyl and Cipro since April 2007. I seem to need the flagyl to 'quiet' the pouchitis and the cipro to keep it under control.

Before I started on the medications I felt as if my UC was coming back. I was tired all the time, in the bathroom at least 12-15 times a day with cramping, spasms, and horrible gas.

Not much else to say except some people do resond well to the antibiotics and can stop taking them and their pouchitis goes away, others can't stop taking the meds without the pouchitis returning. I have tried weaning off the meds but that hasn't worked either.

I hope that your fight is fruitful and that your daughter remains healthy taking the VSL#3!

Maybe you are just using the wrong VSL#3! Did you see the post about the prescription only VSL DS (double strength)? While the regular VSL#3 is not covered, insurance providers may cover VSL DS.

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/9581031452

Jan

This message has been edited. Last edited by: Jan Dollar,

My doctor's office says they have never been able to get an insurance company to pay for VSL 3. I am going to ask about teh double strength VSL though. Thanks, Jan.

Hey Christine,

My symptoms and treatment sound just like yours. Boy I'm sick of this. The Flagyl is so nasty, the taste it leaves in my mouth is horrible and lasts for weeks after I stop a round of it. The Cipro helps but not for long, then it's back to the Flagyl. I've been taking Flora-Q2, guess I need to try the VSL #3? The Gas pains are what's killing me, it's almost like there's a blockage, but there isn't one. I do get some relief by laying flat and letting it rip. I eliminated sugar & carbs completely 3 weeks ago and this seemed to help, then I had 2 really bad days and decided it wasn't worth it. So I started eating light carbs, still no sugar and I'm feeling bad again. I've even tried the no eating/drinking at the same time or 20 minutes after. Guess it's time for more Flagyl.....Uggggh. Anyone have any suggestions, my GI has pretty much thrown up his hands. I felt so good when I had the bag, I wished I would have kept it now.

Thanks

Randy