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Probiotics - so many to choose from and so many questions

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Ulcerative Colitis
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Posted 9/14/2012 7:40 AM (GMT -5)
I have decided to give probiotics a try. I have had UC for about a year now and my GI has yet to mention them, but I see a majority of you take them.

I went to my drug store this morning and there are tons! It was a little overwhelming, so I figure I would ask everyone here.  When is the best time to take them, any potential ugly side effects?  Any help is appreciated.  Thanks and Happy Friday!

Current meds:

4 lialda a day every morning

30 mg pred

4 20 mg bentyl a day

proctofoam 2 x a day

Posted 9/14/2012 8:16 AM (GMT -5)
turtlepower
I take Benebiotics which contains 18 strains including S. Boulardii.
Buy them online at their website for about $17 per bottle. Shipping cost is the same for 1 or many bottles. They are guaranteed or $ back.
I take them (as directed) on an empty stomach first thing in the am and have experienced no side effects such as gas, etc.
Just ordered 5 bottles and got them within days by USPS.
Posted 9/14/2012 8:20 AM (GMT -5)
That's the route I started with and discovered that most of the probiotics in the drug store are woefully inadequate. In most all UC'rs there is a big unbalance in the good vs bad bacteria in your intestines, for whatever reason. I was told to get high count probiotics of like 2 billion to 5 billion in the drug stores. They did almost nothing but then I realized these counts are waaaaay to low for UC'rs. You can go to other places like GNC or other places online and get probiotics of 50 billion and even more. This did better for me but I now take VSL#3 regular strength, which has 225 billion per serving. You can get a prescription for VSL double strenght (450 billion) but I don't believe most insurances will cover it. It is worth checking out though. The higher doses definetly seem to help me. You should check out these other links:

https://www.healingwell.com/community/default.aspx?f=38&m=2513673

https://www.healingwell.com/community/default.aspx?f=38&m=2513489

Post Edited (garylouisville) : 9/14/2012 7:40:36 AM (GMT-6)

Posted 9/14/2012 9:16 AM (GMT -5)
gary, I am on the prescription strength VSL#3DS and the count for one satchet (which I take daily) is actually 900billion not 450billion. As for insurance coverage about 50% of insurance companies will cover it. The other 50% will usually not cover it as a prescription med under their pharmacy plan but if you work hard with them and with your doctor you can sometimes get it covered under your medical benefits with whatever your copay is. Don't let an initial decline deter you. Usually to get it covered that way though you have to show that youv'e run the gambit of traditional medications without success
Posted 9/14/2012 9:36 AM (GMT -5)
I also take VSL#3, the cheaper capsules that don't require prescription. I'm on no medications right now and I'm using this to try and keep me on a stable level until I'm able to get Humira. Funny, drinking high protein Boost every day regularly has also helped me a great deal. The Boost drinks I have are lactose and gluten free.
Posted 9/14/2012 10:12 AM (GMT -5)
Because VSL#3 is one of the only products out there is that is patented for patients with colitis, I'm sold. And I've had no adverse effects. a few of my doctors from both sides of the healthcare spectrum have recommended it.
Posted 9/14/2012 11:14 AM (GMT -5)
If you are in Canada or Europe, or willing to travel to Toronto to pick them up, the German probiotic Mutaflor, a non-pathogenic human strain of e.coli Nissle 1917 is another great (albeit not cheap) probiotic that has been shown in published clinical studies to help fight UC. The FDA nuttily has decided to declare this brand an unapproved drug, so it can't currently be shipped to the US.

I believe in a "more the merrier" approach to proven beneficial strains, but definitely seek high count probiotics as opposed to the low count ones sold in drug stores OTC. I do mix in a few OTc drugstore brands just to get their unique strains- eg culturelle and reuteri pearls.

Post Edited (Probiotic) : 9/14/2012 1:45:00 PM (GMT-6)

Posted 9/14/2012 11:46 AM (GMT -5)
Thanks to everyone for the helpful replies. I think I am going to try the non presciption VSL #3 and see how I do. Just a little nervous when trying anyhing new because you really don't know how your system is going to tolerate it or not. Wish me luck!
Posted 9/14/2012 12:52 PM (GMT -5)
Good luck. I don't know what dose you are planning to take but if you take too much in the very beginning it can give you increased gas. When I started out with it I started with a lower dosage and then increased it to the dose I eventually wanted to be on. Even at that I suspect it gives me more gas than I would have if I didn't take it at all but I really believe it has improved my condition considerably.
Posted 9/14/2012 1:12 PM (GMT -5)
Gary- what dose do you recommend I start at?
Posted 9/14/2012 1:45 PM (GMT -5)
I take the capsules, which are 112.5 billion per capsule. I wouldn't know what to tell you with the satchets. I currently take 2 capsules, 4 times per day. I would either start at 1 capsule 3 times per day or 4 times per day and see how you tolerate it. The dosage I take now costs about $200 per month, so that dosage would cost you around $100 per month. The studies concerning VSL and UC had patients taking as much as 1800 billion per day and even as much as 3600 billion per day. VSL contains the good bacteria and it helps crowd out the bad bacteria. The studies seem to indicate the higher dosage you take the better the chances are for crowding out the bad bacteria. It can be very costly but if you compare the billions in VSL to the billions found in other brands, the VSL is actually a lot cheaper. Good luck and let us know how it goes.
Posted 9/14/2012 2:20 PM (GMT -5)
I took align, recommended by my GI only after I asked, and did not see much if any benefit. I was in full flare and dependent on Pred, so maybe they never had a chance to make a dent.

I nave never gotten remission in 3 years of struggle, but have generally slightly improved over time, with a few small burps. Once I got down to about 4-6 bm daily, 3 at least in the morning, and only occasional blood, I wanted to try probiotcs again. I went with prescription VSL DS, and tried the huge dose of 4 packets a day - because that is the dosage that the only two published studies of probioits in UC used.

I immediately felt my gut less tense, and my mood improved, but after the 2nd day that was increasing amounts of gas and some cramping. I had heard this could be a die-off of bad bacteria as good one re-poplated and a new ecology was established. The gas peaked at about 1 week, and then declined - but never completely went away. Stool quality improved, form liquid mush to semi formed loose/watery stool. Stool odor also returned, which I understand is lost when bacteria populations in the gut are very low. (i.e., the smell is dead bacteria, also about 50% of healthy stool solid mass). After 3rd week (of what had been intended as an 8 week push, to match the study protocol), the gas was too much and the probiotics seemed to be contributing to the diarrhea (I started to notice a milky/lacto note to the odor). I dropped down to one packet every day or two.

Since I have retained some stool formation, and retain some stool odor, I think I am getting about all the benefit I can from my current maintence dose of probiotics. I am thnking about trying Align again (3x daily), and only using the VSL DS 2x weekly as a booster.

So, I encourage you to explore probioitcs. Do not be surprised if there is no visible benefit when in full flare, and do not underestimate how massive a dosage it might take to get repopulated.
Posted 9/14/2012 2:58 PM (GMT -5)
I recently discovered the probiotic called VSL3 and did extensive research. This is considered the only probiotic specially designed for uc and the recommendations I've seen have been completely stunning. It isn't all that cheap but then again if something makes one feel better............This can be purchased through most drug chains and I purchased the 60 capsule bottle for $50.00 and for my condition I take 6 per day. Having taken many different probiotics, this one in the few days I've been taking it appears to be working. Obviously do not discontinue any medication you're currently on. VSL3 does not interfere with any prescribed medication. I've discovered several research projects by a division of the NIH and the conclusions led me to try it.
If you search the name I believe you'll find some very promising study results together with a number of folks taking it. BTW it should be refrigerated to keep those little guys happy.
I'm happy I found it so now let's hope it continues to help reduce my flare-ups. So far so good.

Good luck in whatever you decide.

Post Edited (valleyguy) : 10/5/2012 9:50:21 AM (GMT-6)

Posted 9/14/2012 4:55 PM (GMT -5)
I started VSL#3 on a holiday weekend so if it upset me I wouldn't be at work. Sure enough it took some getting used to and I'm glad I started it on a Friday.
Posted 9/17/2012 9:33 AM (GMT -5)
Have you considered Symprove? (from symprove.com) Unlike VSL#3 is not a freeze-dried capsule. This is better because freeze-dried products require the bacteria to re-activate before they start doing you any good. This can often be half-way through the gut.

You also don't want diary-based probiotics because the stomach treats it as food and kills off most of the bacteria before they hit your gut.

We've been hearing a lot about it because it's water-based, has multiple live bacteria strains and is also gluten-free. Just though you might like to check it out.
Posted 10/5/2012 10:00 AM (GMT -5)
slight spam?

q
Posted 10/5/2012 11:41 AM (GMT -5)
just maybe a little :-)
Posted 10/5/2012 4:35 PM (GMT -5)
My first GI started me on VSL#3DS which I took for several months. I then switched to regular VSL#3 because it was more affordable. In August, I reluctantly switched to Renew Life Critical care 80 due to affordability. I figured I would try them, but I did not think it would do anything better than VSL#3. What a difference! I like the renew life a whole lot better. Seems my stool is more formed and I have less gas. I recently reordered the Renew Life online for a better quantity and price!
Posted 10/5/2012 5:27 PM (GMT -5)
I agree with garylouisville et al - look for probiotics that have tens if billions to hundred of billions of colony forming units, not the pathetically low count ones with a t mostba few billion. The other thing is, assuming you tolerate them, go for multiple strains. This principle is where I make a slight exception and buy some fairly low count probiotics such as culturelle (to get the lactobacillus GG) and reuteri pearls - to get strains not present in say VSL3, which I take as my staple and is very high count (125 billion per capsule, 900 billion per DS satchet). Mutaflor is available in Canada and has strong data suporting it for maintaining UC remission- it is the only non pathogenic, beneficial form of e.coli (Nissle 1917) available commercially and is another mainstay for me now- I need sadly to fly up to Canada to get it and then smuggle it back because the FDA is staffed by some morons.
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