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I have had J pouch surgery and will have (hopefully) the take down stage in the next month or two.

Regarding taking VSL 3 or other probiotics, is it worth taking them from day 1 post take down, or is it best to just see how it goes without them and if i develop pouchitis or something else then consider taking it?
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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.
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.
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.
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!

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 

Just a VSL coverage update for 2016: My successful VSL appeal had covered me through the end of 2015. I started new health insurance in January (thank goodness for the Affordable Care Act!), and they immediately denied coverage of my VSL #3 DS prescription. I appealed to the insurance company, and they again denied coverage. I filed a medical necessity complaint with the Maryland Insurance Administration (each state has an insurance regulator), and this time the insurance company caved almost immediately. Last time my complaint took almost a year, this time it took about a month. I was able to reuse my old doctor's letter (very well researched) and just point out that my condition hadn't changed. Needless to say I'm very, very pleased.

Don't take "no" for an answer!


 

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