It helps some people and does not help others. It has not worked for me, but the benefits may not be observed rapidly as they are with antibiotics. You should certainly try it and see what happens. In my case deterioration has been rapid after I have gone off antibiotics and tried VSL#3 DS (prescription strength) cold turkey. So I am now taking VSL#3 DS between antibiotic dosages in an effort to build up before again going off antibiotics.

I've shopped around a fair amount and have not found any significant price differences. The only way I've found to get the cost down is if your insurance covers the prescription-strength packets (VSL #3 DS). If your income is very low they do participate in a program that (I think) provides it for free.

Scott, you seem to be the VSL expert! When I finish this round of cipro I'd like to give VSL a try. Going to see if my insurance covers it, but even if not I was looking at reviews on Amazon and one person commented regarding the importance of slowly introducing it to your system, as it may increase frequency. I was just wondering if you had any tips for people starting out on VSL or advice in general - capsule vs. packets, dosage, time of day to take it, how long of an adjustment period, etc? Thanks!

I mix VSL in Greek yogurt before breakfast and dinner. It's hard to get the higher doses with capsules, and the DS (prescription) strength only comes in packets. I had no issues when I started it, but some people get gassy, for a week or so or, in some cases, forever. Those "forever" people shouldn't keep taking VSL.

I find VSL#3 very effective if you take it before a major flare-up. But once you have pouchitis it's pretty much too late and will need antibiotics. So basically I take it 3-4 days a month (not even sure if this is ok or not), but this strategy works for me and I haven't had pouchitis for more than a year now.

For me personally it did not help at all. I am now hunting for something else that will hopefully shine some light on my situation... ..My doctor however always speak highly of VSL#3. He even suggested that I used it before trying antibiotics since my pouchitis is apparently mild..

never helped me and according to dr. shen who follows many thousands of patients he has never found it to control or eliminate pouchitis..he actually tells me to take align .. but he does not suggest in of of itself it will control pouchitis..there are always exceptions with us jpouchers but they are truly the exceptions..if cost is a big factor i might just give it a try but not persist if unsuccessful..also i remember when i first took it taking recommended dosage just about killed me..i would start lower..

For how long and how often did you guys try it for though? It's not something that works right away, and can sometimes take a good week to fully kick in.

The strongest effect of probiotics is to *prevent* pouchitis. They are generally insufficient to treat it. So there's no fixed duration after which you can tell if it's working or not. I guess if you get pouchitis while on the probiotic you could decide that it's a failure, but even then the pouchitis might have occurred earlier without the probiotic.

I use VSL because it seems to help in research studies. I can't reliably tell if it's "working." If it gave me significant side effects I might choose differently - though the side effects (mostly gassiness) usually clear up before too long.

i think scotts remarks right on...its thought to possibly PREVENT pouchitis NOT FIX it..so as he says if you do not get pouchitis after having it at one point it may be working..if you do it is not..

as far as my trying it i tried it back when i had colitis and again with pouchitis issues it just made me worse period..i think one theory is so far pouchitis caused by imbalance of bacteria ..so probiotics,diet,antibiotics can or may help set up a better balance to prevent our narly symptoms...so far only one so far that works (but not for everyone as we now ) is the antibiotic which is m.ds first line of defense everything else is maybe it will help..

Try a big dosage in the packet form, my insurance covers that, but not the capsules

Plus, even if you do get pouchitis while taking it, it does not mean it is not helpful (or any probiotic, for that matter).

Nothing is foolproof, and probiotics do not prevent all incicence of pouchitis, but can reduce severity if and when it occurs, and prolong periods of remission or first occurrence.

Jan

I use it regularly. When I forget, I have trouble passing stool. I get horrible urges, go to the bathroom, nothing happens. Very frustrating! I also have chronic pouchitis and think it helps but doesn't totally prevent it. I take Cipro daily to keep it at bay. I'm interested in the oregano oil thing and will keep an eye on that for a while.

I'm taking it but my Gastro Dr. does not think it's worth it. Just FYI, I take double strength VSL prescription strength, and pay $80 for 80 packets with my insurance. Actual price would have been $162 so it saved half. I use 1 packet per day mixed with Greek yogurt which itself has probiotics in it. So it is $1 a day. My pouch has no inflammation, but like others have said- no telling what it would be without. Good luck!

I couldn't get my insurance company to cover it and it was going to cost several hundred dollars/month. I was really bummed, but then my Dr. said that despite the 2 VSL studies showing that it was beneficial (mostly in preventing or treating only mild pouchitis) that their follow up studies didn't show the same results. I opted for OTC probiotics in stead, which did nothing for me. But then, even antibiotics didn't work on me...

It can't hurt, but if you cannot afford VSL, a simple OTC probiotic might have a similar effect (which is probably a minimal, but in some cases, meaningful effect).

I used 1 packet of VSL#3DS daily for 3.5 years and recently increased to 2 packets daily because I've developed chronic pouchitis instead of recurring pouchitis. I mix it in Greek yogurt as well.

I discovered during my July j-pouch tests that I now have a large j-pouch therefore it made sense to me that I increase the VSL#3DS that I use daily. Visually I had mild pouchitis during the pouchscope but the CTscan and other tests concluded the entire pouch was inflamed - which is how it feels to me when I need to take antibiotics. I think my body has figured out my j-pouch is there and doing the colon's job and therefore is attacking it. I know that isn't scientific but autoimmune diseases are unknown entities.

You probably have bacterial overgrowth and what the immune system is attacking is the excessive bad bacteria in your J Pouch. The ways to reduce it are antibiotics, probiotics and diet or all of the above.

I have been prescribed 2 packets VSL#3 DS, but doing that alone without antibiotics has not worked. I am continuing to try and build up by using VSL#3 DS between antibiotic dosages and hope to try going off antibiotics onto VSL3# DS soon but do not feel I am ready yet. I continue to watch my diet and do not eat sugar and carbs. I am basically under control but I am a little more runny at night as far as leakage than I used to be, and that is a concern to me.

I do not have bacterial overgrowth. Again I will repeat that my GI is Dr. Edward Loftus at the Mayo Clinic in Rochester and I was tested for everything including celiacs a few months ago. I can not eat sugar as I have dry mouth and am fighting off cavities like crazy. Thank you for your concern.

I was not asking for a diagnosis as I was just adding my 2 cents about VSL#3DS and that Dr. Loftus had increased my dosage to 2 per day when I asked. I was pointing out I have chronic pouchits and that my pouch had grown in sized. He never said anything about the size of the pouch having anything to do with the quantity of VSL needed. That is the accountant in me coming out

Please don't be so quick to offer suggestions on someone's diet when you don't know what their diet is. I know you mean well and I know you've changed your diet dramatically. I've changed mine too.

I too take the VSL#3DS in-between the antibiotics. My problem was I would go on antibiotics for a few weeks and them wait for a few months until I was feeling really bad before taking them again. Now I am going to go on antibiotics sooner than later and if I don't feel well at the end of two weeks will trade off onto a different kind of antibiotics.

quote:

Please don't be so quick to offer suggestions on someone's diet when you don't know what their diet is.

You need to seriously lighten up and relax. I nowhere said anything about your diet and only commented on mine. Go re-read my post. In the past you sent me some absurd reactionary PMs which I did not respond to because they were total overreactions and misinterpretations. This is more of the same. Lighten up. I have no idea what testing you had or did not have as I do not have the ability to read minds and only made a suggestion. If it is inapplicable so be it, I wouldn't know.

Glad to know you have it all figured out and don't need anyone suggesting anything to you. I wish I did. I shall remember not to reply again in the future.

CT - I quote from your first sentence paragraph right after my post:

"You probably have bacterial overgrowth and what the immune system is attacking is the excessive bad bacteria in your J Pouch. The ways to reduce it are antibiotics, probiotics and diet or all of the above."

I am not going to mince words with you in a legal brief or whatever here but the common person reading what you wrote would infer from it that you were telling me that I probably had bacterial overgrowth and that was caused by my diet. "That was offering a diagnosis." You lighten up barrister.

Then you went on to talk about how you manage your problems.

I also said, if you read far enough, "I know you mean welland I know you have changed your diet dramatically. I've changed mine too." That was a positive statement about YOU.

Whatever I wrote you in a past PM was to clarify something like this. If you deemed it absurd, so what, who cares? At least I was polite enough to say it in a PM.

I said that you "mean well" and you jump all over my post?????

We are here to support each other.

The topic is VSL#3

I re-read the VSL#3DS instructions today and they say 1-2 packets of DS daily for pouches. It is as, CT Barrister says, important to take it in-between doses of your antibiotics. I picked it up somewhere the antibiotics and probiotics should be at least 3 hours apart from each other. I could be wrong on the timing.

I think this is enough sniping. It needs to end here or the topic will be closed.

Jan

Thanks Jan

I have had great luck with the capsules and was even able to get off antibiotics but I had to take 8-10 capsules a day which was very expensive. Only able to afford it for 2 months. It' unfortunate that insurance companies don't cover this. I hope someone in the feild or of importance is reading our concerns and trying to address this issue. VSL DOES WORK IF A STRONG DOSE IS TAKEN. Unfortunately know one is able to take the amount needed for time needed because of cost.

So true Pete. Any reason you did not use the prescription strength, DS, which is covered by some insurance?

Jan

Please check with your prescription insurance, if you have coverage, to see if it covers "VSL#3DS". This is the only form that is considered prescription strength and has 900 billion units. If it is covered then check to see if your drug store can get it in. Some have had problems with this. Walgreens is where I get it and they need several days to get it in after I order a refill. My Internist initially prescribed it before I changed GI's. I currently take 2 doses of VSL#2DS daily.

Good Luck

The insurance companies farm out their prescription management to third parties, which use various medication databases. Some (but not all) of those databases say that VSL #3 DS has an OTC equivalent. My insurance company changed data sources in January and they haven't covered VSL #3 DS since then. I learned last week that they (strangely) don't indicate single-strength VSL as the OTC equivalent, but rather some low-potency probiotic. That will be the next issue I raise in my now months-long appeal.

There are only a few of these medication databases, and your insurance company indirectly uses one of them. They are treated as infallible even when they are wrong, so appeals can be tedious.

Insurance companies are all over the place on VSL#3 DS. As I mentioned earlier my GI doc said to me about 2 in 10 patients get coverage. He writes a scrip and some get coverage, unexpectedly. He said it did not hurt to try, in my case we did and VOILA, a one month's supply (2 packets a day) was covered with a $40 copay.

However my coverage plan with Anthem changes 11/1/14 and who knows whether it will be covered or not under our new plan. It is almost like musical chairs. They also tried to sneak by us a new plan which completely changed coverages on copays for specialists and PCPs. On group plans they can actually "migrate" our office onto a different policy. I and our office manager caught this sneak maneuver, had our broker object and we were de-migrated. I got a week's salary bet on the migrated plan we de-migrated from not covering VSL DS#3 at all. And it is unknown whether the new plan effective 11/1/14 will cover it.

In my case it is seemingly all irrelevant as VSL#3 DS has not worked for me as a cold turkey, stand alone treatment for chronic refractory pouchitis.

Calling VSL#3 DS a "medical food" seemingly has something to do with the divergent coverage opinions. It's in the company's marketing literature.

after much searching and dealing with some of the best minds in pouch/pouchitis issues and recently to a new chinese med practitioner i am inclined to believe no probiotic in and of itself will prevent or stop case of refractory pouchitis..the gut being such a complicated organ it is becoming clear to me that no one thing will fix the problem at this time ..probiotics,diet can help toward trying to get the balance and might move the balance of the bacteria but its going to take a village(as hillary clinton said about raising a child" )this i think applies to the refractory pouchitis..the reason antibiotics work for a time is because it kills both bad and good bacteria but for limited times and then its back to square one..as shen said "things keep changing in gut all the time for so many reasons and we cannot rule out genetics..interestingly enough the chinese practicer was also concerned about some of the meds i take for other reasons as also not helping my cause...i am going to do do more follow up with him and see where that takes me..but for now its sticking to diet,taking probiotics and relying on rotating antibiotics because its all i got!!!

Well said Rebecca. I've never considered the other medications I take before! I'm on the same routine as you are plus I take canasa most of the time, for chronic cuffitis, and occasionally anucort - depending on the inflammation.

f.y.i.dr. shen knows of both vsl#3 but still recommends align..i think he thinks that the probiotic in that bifido is the main one that needs to multiply.

Thanks Rebecca,

My Internist has many IBD patients and she recommends Align after taking antibiotics. She initially prescribed VSL#3 DS for me when I asked.

I don't know if she recommends Align to non IBD patients or not.