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Ulcerative Colitis
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Posted 10/28/2010 2:21 AM (GMT 0)
Been starting research on these. What types do you guys use? Where do you get them from ? Are you using them with UC or UP ?
Posted 10/28/2010 2:27 AM (GMT 0)
I used to take a lot of probiotics, not just capsules but also yogurt and kefir. I make my own yogurt sometimes. I haven't found it to be very effective in helping my UC. Others have wonderful luck seeing progress with probiotics.
Posted 10/28/2010 2:42 AM (GMT 0)
I'm using VSL #3. It's horrendously expensive ($3 a pack), but on the advice of someone else on this board (sorry I don't remember their name!) - I started making making homemade yogurt with it. A relatively cheap yogurt maker allows me to take one packet and make a week's worth of yogurt (I use coconut milk because I have a dairy allergy). I don't know the "dosage" of bacteria in the yogurt, but it seems potent enough to me based on my gut's reaction to it :)

I think that in theory you could do this with any probiotics to stretch your dollar a bit? (someone please correct me if I'm wrong).

I can't really say if it helps me or not, I had to go on prednisone shortly after starting the probiotics, and I've been pretty well since then. I really don't think they hurt (beyond making me a little gassier than usual, but not uncomfortably so), and they do have the potential for good, based on other people's experiences. So I figure, why not? It's better than taking more drugs!

I think that it is like diet and other factors - it's very individual for everyone and the only way you will know is to try it yourself. Good luck :)
Posted 11/2/2010 6:24 PM (GMT 0)
After recently being diagnosed with UC --- then finding out it was caused by taking an antibiotic (to prepare for a root canal!), I started doing some research on probiotics.  The two brands that seem to come up quite frequently:  Florastor and Culturelle.  Florastor has been out for 50 years.  I know an older gentleman that had a horrible bout of C-diff (caused by antibiotics in the hospital) and he said Florastor was the most effective for him.  My gastroenterologist has me on metronidazole, I'm about half way through the treatment.  I'm also taking Florastor.  I feel amazingly good, having essentially normal bowel movements  --- but I've been lucky through this whole ordeal.  My doctor and I have both been surprised about how mild my symptoms have been.  It's my understanding that the most of the active cultures in yogurt don't make it to the intestines.  Florastor claims that it does (and it's yeast based).  Culturelle has some sort of patented formulation, the manufacturer claims that the beneficial bacteria survive the stomach and make it to the intestines.  Both products are easy to find (CVS, Walgreens, Walmart), but a bit expensive.  I agree that each person is different --- just like diet --- some trial and error is involved.  My experience with Florastor is brief, but I'd say it's worth a try.

Posted 11/2/2010 6:57 PM (GMT 0)
go to the VSL#3 website for info and read the studies and success rate. The DS (double strength) is covered by insurance because it requires a prescription. Studies show that taken 4x a day for 6 weeks something like 80% of people go into remission, and then take 1x a day for maintenance for a year. I saw HUGE improvement during and after the 6 week course. Most of my symptoms gone. Then started SCD and at the same time stopped my meds (as advised by my GI - slow tapering).

I had to ask my doctor for VSL#3 after I did the research, and when I showed him the studies he said he "believes in probiotics." lol. You really have to stay on top of these guys, sometimes patients have to educate their doctors. Doctors get their info from studies that are financed by pharmaceutical companies to promote their drugs. GI's are walking commercials for maintenance medication, which brings in a lot more money than a cure.
Posted 11/3/2010 2:31 AM (GMT 0)
I use a mix of probiotics- VSL3 capsules (I don't use the pouches because they have a lot of filler junk in them), Primal Defense caplets, Reuteri Pearls, and from time to time other things such as Pure Encapsulations Sacharomyces Boulardi. I have also recently tried Mutaflor (a non-pathogenic strain of e.coli designed to keep out pathogenic e.coli I presume) for a few months, but it's the costliest probiotic out there and so far I haven't noticed any benefit.
Posted 11/3/2010 2:44 AM (GMT 0)
I use VSL #3 DS mixed with Nancy's Organic Plain yogurt. My VSL#3 is covered by my health insurance. I get 100 sachets for a $10 co-pay. I have tried several other probiotics and have found them all to be fairly helpful but will stick with VSL #3 for the affordability provided by my health insurance and supporting clinical research is strong. You might inquire into what might be covered by your insurance.
Posted 11/3/2010 6:15 PM (GMT 0)
I recommend Custom Probiotics six strain powdered blend - which I credit with helping me out of over a solid year of flaring - or Natren's Healthy Trinity. Both can be ordered online or by phone.

In my experience, any effective probiotic is going to be (unfortunately) expensive, multi-strain, and they usually require refrigeration. The cheaper, drug-store brands I've tried had no effect. You may also need high doses initially if you're digestive system's in bad shape.
Posted 11/3/2010 8:24 PM (GMT 0)
I've tried PB8 (didn't help me) Digestive Advantage (ditto) Ultimate Flora Ciritical Care (helped pretty well) Primadophilus Bifidus (seems to help) and VSL, currently VSL DS.

When I started the VSL I was flaring, a long, mild, tiresome flare.... and after several weeks the blood just ... stopped. After a few months I let my VSL run out and within 3-4 days the bleeding started again. I restarted the VSL and again, saw improvement.
I repeated the experiment a few months later with the same results... so for me, probiotics seems to be key. Right now I'm doing two packets of VSL DS a day, plus a capsule each of the Ultimate and Primadoph - trying to get rid of a bit of inflammation.

I made yogurt from the VSL twice, in the past weeks.... very, VERY tart. Yogurt (homemade) also seems to help me, even if it's made from storebought yogurt.

Wow, napacabs!!! I thought my insurance was decent, but 100 packets cost me $120! Interestingly, though, when my GI wrote a script for 3 months' worth, twice a day (180 packets) my copay only went up to $150. So.... that's th way to go. Luckily we have a spare fridge in the basement. Sure looks funny stocked with VSL boxes........ :-)
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