Hi Everyone,
I originally posted this as pouchitis patient testimonials, but thought I'd try a different tactic. Please, if you believe that VSL 3 has done wonders for you and are willing to respond, I'd be very grateful. Please send any correspondence to my email address in my public profile. Thanks so much!

This was my orginal plea for help:

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.

I think I recall reading your post previously.. Given that your daughter isn't a pouchitis sufferer, perhaps you could save yourself the trouble and try an over the counter probiotic instead. If she does get it, then she can take antibiotics and then go back on the vsl 3, just a thought?

Perhaps what the board needs to hear is that pouchitis isn't always "easily fixed with a round of antibiotics"

I suffered 3 1/2 years of chronic pouchitis and during that time was on 1000mg of Cipro non-stop, not to mention trying a host of other drugs. Perhaps you could make the argument that the preventative probiotic is better than long term antibiotic use and it's potential side effects?

Rsgirl: I guess I'm trying to prevent with a proven probiotic...and it's no trouble at all...I'd do this tens times over if it meant keeping her healthy.

Jill...do you take vsl #3?? This is exactly what I'm trying to do (prevention rather than treating)! Thank you for getting it Would you be willing to write me a short letter detailing what you've been through with antibiotics and what side effects you've had to endure? I'd appreciate any help that you can give us!

Elise,

Please make sure your insurance won't cover this product: 'VSL#3 DS (Double Strength) Packets 20s.' Many companies will tell you flat out that VSL#3 is OTC and isn't covered, only to find out that the DS product (prescription only) is covered.

I have not suffered with pouchitis, but take VSL#3 regularly. Of course, that's a testimony in itself - that I have not had pouchitis at all while on it (for 13 months now). It makes a huge difference in my quality of life though - my stools are much more normal, less frequency, less urgency while on it than off. And it is more effective than other probiotics in helping (I take 2 DS packets / day - 900 billion bacteria x 2 / day).

Thanks Elmer!
I have a request in to my daughter's surgeon to look into the DS vsl...it wasn't around when she originally prescribed vsl #3. My daughter has been taking VSL #3 since her takedown in February and has not had one complication...knock on wood... and believe that it's because of the probiotic benefit for sure. I am in the midst of corresponding with both of her surgeons and gathering as much information/data/clinical studies/letters etc as I can to backup our claim (government insurance company if that gives any idea how difficult this will be to get this approved). Thanks for taking the time to write, and I hope that you greet each day in good health!

Elise, I do not take VSL. I tried all the probiotics, diets, etc... and after 3 1/2 years of chronic pouchitis and at the age of 30 (2001) I decided on a perm ileo and have been loving life since. Pouch removed in 2003. Had a baby in 2006 and currently pregnant with number 2.

I know an ileo is not everyone's choice, but I do like to let people know that it can be wonderful if you are tired of trying to find answers. So, sorry, don't think I'll be much help with the VSL approval, except that you could surely let them know that pouchitis isn't a quick and easy fix.

Thank you Jill! You sound like you're in a very good place and are at peace with your decision to go with an ileo. I sincerely hope prenancy #2 goes well and that you are blessed with a healthy, beautiful baby!

I am compiling a pretty extensive appeal package and do intend to provide evidence that pouchitis isn't an easy fix and our approach is that we'd rather prevent it from happening and that it's more cost effective to take probiotics than endless rounds of antibiotics. If anyone reads this thread and would like to contribute to our cause, please write to me via email...I would love to hear from you!
Thanks!
Elise

Elise and Elmer,

I am not currently using VSL3 only because of the expense,but hearing about DS and the possibility of insurance coverage will definitely prompt me to investigate. VSL 3 has been a very important component of managing and avoiding pouchitis for me. The healthiest I've been in five years I attribute directly to VSL 3 coupled with a high soluble fiber, low glycemic index diet that includes lots of cultured foods. For other reasons, I had to have my pouch removed and go to a permanent ileostomy (I'm with you, Jill - I have my life back and love it!), but I know that VSL 3 will result in much easier management of my ileostomy and a healthier gut in general. My primary care doc recently handed me a study (that astonished her!) about the efficacy of various probiotics in the treatment of various gut problems including those that result from taking antibiotics that reduce the healthy flora. VSL 3 is mentioned, of course,since it's been trialed. Count me among those strong supporters of VSL 3 use. I've had numerous contacts with the company to try to get them to work with insurance companies, but they've opted to take another tack, one which will be highly profitable for them. VSL sells a 30 packet box of regular VSL 3 for ~$30., whereas they sell the DS at $78 for a 20 packet box. Their website has no info about the product, and their sales agent on the phone had little info about it and had to search for product info while I waited. DS is certainly worth investigating.

Best of luck, Elise.

Barbara

My post on the general discussion board might be of help to you. I have copied it here.

Based on reading others posts, I asked my Dr. for a prescription for VSL#3DS. He was not aware it was available in presription strength. He wrote it wrong, forgot the DS. CVS Pharmacist called to tell me it was over the counter, I informed him as well of the DS. He ordered it. They called a week later to inform that they were having trouble getting it through their wholesaler, who happens to be Cardinal.

I wrote a sarcastic email to Sigma Tau asking if they were going out of business or short staffed, as my CVS pharmacist couldn't seem to get hold of their product. They wrote back the the pharmacist needed to get it from one of the three major wholesalers....and might need to get it drop shipped. Key is drop shipped.

I called pharmacy to find out they had dropped the original order, as they could not fill it. Told them it could be drop shipped. They called Cardinal and were back to me in five minutes. Order filled, be here in three days. Got it today.

Now for cost. The capsules are 225 billion each. The packets they sell on line are 450 billion each. The prescription strength is 900 billion. How many billion does a person need?

Anywho, the presciption cost was $50 for 60 packets x 900 billion, or .0009 cents per billion...three zeros. Capsules on-line are $43 for 60 capsules x 225 billion or .003 per billion. Packets on line are $75 for 30 x 450 billion or .005 per billion. Way cheaper per billion with prescription, as one would expect. Pills are next and easier to take.

This stuff seems to work for me, but then again, I really don't know. I am experimenting with stopping the Immodium and see what happens. Been off for about 30 hours and things seem to be the same so far. Going to give it as much time as needed to see if things go the wrong direction. No use taking the stuff if it's not doing anything.

If things stay stable, I'm going to stop taking the VSL. I'll post the results.

I'm still going at least 10-15 times a day, three or more at night. That is with 7 immodium per day, three VSL tablets,three fibre tablets. The night ones, I'd like to reduce. Time should help, I'm only 4.5 months.

Hopefully this is helpful to someone. Worst case, it will help someone get to sleep.

Happy Pooping!


Steve

Steve,

At 4.5 months out, I hope you start to see some significant improvement soon. It took me about that long. And I will say the probiotics seemed to help before the fiber or immodium did. Meaning... if something doesn't seem to help now, it doesn't mean it won't help in a month or two.

Good job with the VSL. It's a tough one to get ordered/filled with the major pharmacies. I don't think the distributors like to deal with it.

Steve