I went without probiotics quite well for six years or so. I can't help but wonder if they might have helped prevent subsequent (and stubborn) pouchitis.

My surgeon had me restart my VSL-3 two weeks after take down. He said a good probiotic is a must for pouch health but he did not want me taking any during the initial healing period of two weeks.

Good luck to you.

I agree with Scott F- I had no pouchitis for 2 years after takedown and I believe VSL3 or some other probiotic should be taken from day one after takedown based on everything I have read and learned to date in 20 years of treating chronic pouchitis since 1995 or so.

I was put on VSL3 back in the 1990s to treat active, flaring pouchitis and it did not help me, but what I was given back then is a watered down version of what is on the market now. VSL has come out with a new probiotic called VSL#3 DS, the DS standing for double strength.

The really good news for me is that my health insurance carrier, Anthem Blue Cross/Blue Shield, is covering a 30 day supply of VSL#3 DS (which is a refrigerated powder that comes in packets) for a $40 co-pay. My pharmacy told me that the total cost with no insurance is $381 so this is good news. However my GI Doc told me only about 2 in 10 patients he writes scrips for has it covered. You can, however, appeal any determination of no coverage, and have your Doctor send a letter to your insurer in order to get coverage. Tell the insurance company in that letter that the alternative could be that they have to pay for 20 years of pouchitis treatment like they have for me!!!!!!!! Which includes not just meds but also annual scopes.

Good luck and I agree with your thinking. Keeping the bacterial populations in your gut at appropriate levels, through probiotics supplements and diet, is very important and could possibly assist in preventing the development of pouchitis.

On January 1 my insurance carrier (CareFirst Blue Cross Blue Shield) stopped covering VSL #3 DS. I've been paying full retail at 4 packets per day - that's over $600 monthly. I'm not happy about it (to say the least), and am in the middle of an appeal. OTOH it seems to be helping me with my first antibiotic-free period in years, so I'm putting up with the cost.

Scott,

The way my Doc wrote the scrip for me was to take 2 packets a day (not sure why when the label on the box calls for 4 a day) but doing the math on this, the actual cost of a 4 packet a day scrip, 30 day supply, would be $760 at my pharmacy in Connecticut.

$600 a month is insane and I wish you well on your appeal.

I did not start the probiotic immediately after surgery and I developed pouchitis almost right away. I was treated (two rounds of Cipro) and then started VSL#3. I take two packets a day and seem to have the pouchitis under control. (Hope I didn't just jynx myself). My point is that, in answer to your question, my opinion is to get on the VSL#3 right away. Get your pouch off to a good start. Mine is not covered by insurance and I'm hoping to cut back to one packet per day but for now I'm so grateful to be feeling better the cost is worth it.

I also meant to add that it costs me $210.00 per month including tax and shipping. I order through the Canadian site (Ferring Pharmaceuticals)

It's labeled for a variety of doses. 4 packets per day (at the DS strength) is just the maximum labeled dose, for active pouchitis. You should (IMO) use the lowest dose that works for you (though that can be hard to assess).

When we're comparing costs we have to be clear about DS packets vs. regular strength packets. I've done some price shopping, and the retail cost seems to be nearly identical in many places *per billion live bacteria*. My cost for 120 DS packets is $680.

Scott- was told by my Rite Aid pharmacist that the total cost for 60 DS packets was $381 so 120 =$762. However I live in Connecticut where the cost of living is higher than elsewhere. The cost of electricity in Connecticut is twice what it is on the Gulf Coast of Florida, according to my father who in the last two years went from being a CT/FL snowbird to a now full time Florida resident.

Scott, I appreciate your comment about comparing strength when looking at price. The packets I take have 450 billion vs 900 billion (VSL#3DS). I don't think those are even available to me. Taking this dose seems to be working for me so far although it's definitely too soon to feel confident about that.

The DS packets are available by prescription only, at least in the US. For some US folks insurance covers *all* prescription meds (including VSL #3 DS), making it much less expensive for those fortunate souls.

Probiotics are great for anybody with or without a colon. I had a hard time in the beginning emptying my pouch fully so in fear of bad bacteria getting backed up in there and developing pouchitis I decided to take VSL-3 which I did not get a prescription for. My surgeons office was able to call the company and request samples and they were able to give them to me. They worked great and knowing how much it was going to cost to continue taking it I went to a natural food store that had probiotics that had over 200 billion cells that I felt helped just as much as the VSL-3. I would also eat a lot of yogurt. I would definitely say yes to taking it right from the get go but don't be discouraged if your insurance doesn't cover it because there are other probiotics out there that can do the trick. Good Luck.

After more than a year struggling with Blue Cross to cover VSL #3 DS, I've just learned that my appeal was successful (at least once I got the state regulators involved). They will cover it retroactive to January 2014 and until 12/31/15. In this case, at least, persistence paid off.

 

The letter my doctor wrote was critical. Cooperative, caring doctors make a huge difference!

I found this site has the best prices on VSL #3, all types. Even taking into account the shipping charges I found this the best way to go. I think if you order over a certain dollar amount the shipping is free. They're located in Texas, I've been ordering from here for a few years & have never had a problem. Here's the link: http://www.sundrops.com/

Are you unable to get VSL#3DS by prescription? I guess I am lucky or have good insurance.  I have been taking this for several years and have never had a problem getting a prescription or getting it covered by insurance.  (My surgeon was the first one to recommend and prescribe it.)

Some of the insurance companies cover it (the DS prescription-only form), and some don't. Mine had covered it until January, 2014 and refused since then. I've been appealing that for over a year, and they finally yielded.

A question about probiotic, I have tried a great variety of probiotic's over the counter and also from my naturopath and dietician recommendation but have a reaction to all even tried the dietician's lactose free brand with probiotics also became not well. I have symptoms just like pouchitis cramping pain across the back radiating up my back and a general feeling of not my self is this a common problem any thoughts 

I meant to say that yogurt also gives me the same symtoms .

Not everyone gets benefit from probiotics, and some people do have a bad reaction. sudie, perhaps you have a dairy allergy, which is often a stronger reaction than lactose intolerance.

It helps my husband to stave off pouchitis. He takes it with the juice I make every morning. Also, our insurance covers it..