http://www.jacksongi.com/diseases/Ulcerative_Colitis.aspx

This site does NOT sell probiotics the ONLY thing it sells is PREbiotics to help bacteria grow. If you scroll to the bottom of the page they give research URLS/books that back up their statements ( : * A good thing*

They mention VSL-3 as a bacteria that has been found to help UC.
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http://www.jacksongi.com/diets/Ulcerative_Colitis_Dietary_Therapy.aspx

This link goes over diet that may help and mention the below.
"Probiotics are bacteria in food such as yogurt, other dairy products and now in pill form. We now know that certain of the "good" bacteria in the colon, such as the Bifido ones (Bifidobacter) are deficient in ulcerative colitis. This is especially so right next to the surface of the colon where the inflammation of this disorder occurs. Now these Bifidos make certain substances that are very healthy for the cells that line the colon, the ones that first become inflammed. Taking a Bifido type of probiotic along with the fuel, the prebiotic, that makes them grow makes lots of sense. There are some early medical studies that show that these types of probiotics given in pill form can favorably influence the course of ulcerative colitis. People with immune deficiencies, such as HIV, AIDS and chemotherapy, should probably not take probiotics. Otherwise, probiotics seem to be safe, although ulcerative colitis patients should always discuss this with their physician.

Prebiotics

Prebiotics are the soluble food fibers that feed the healthy bacteria in the colon. The term was coined in 1995, so the field is rather new. Researchers are evaluating many prebiotics, but only inulin and oligofructose have shown consistent results. The key thing that these two prebiotics and, hopefully, others do, is to stimulate the colon's good bacteria to grow. Inulin and oligofructose cause certain bacteria to produce acidic substances called short chain fatty acids (SCFA). SCFAs are used by the colon's own cells as a fuel source. They are what make the colon's own cells, the very site of ulcerative colitis, healthy. We still don't know just how this all works but simple reasoning would say that SCFAs are likely good for ulcerative colitis patients."

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I have some research links on probiotics on my site (NOT selling anything). They helped my son get rid of his eczema and now I will be doing more research in this area to see how they can help my UC. I will post more URLs to new research as I find them.

www.RAMSwebsite.net click "Probiotics" link

Best wishes to all,
EP

PS THANK YOU for posting this info!!

I found this site http://www.usprobiotics.org.
Great info about the basics, research, regulatory issues, safety, and consumer awareness.

There are many studies that support probiotics efficacy, mostly in Irritable Bowel Syndrome, and also the dangers to patients with diseases with potential organ failure like pancreatitis.

They don't seem to be selling anything.

From the site:
Inflammatory Bowel Disease. Inflammatory bowel diseases such as ulcerative colitis and Crohn's disease, are serious intestinal diseases that can lead to the surgical removal of the colon. The cause of these diseases is not known but it has been hypothesized that an intolerance to the normal microbiota in the gut leads to inflammation and resulting pathology. Efforts to identify a single microbe associated with the disease has failed, leading some to suggest that it is a pathogenic microbial community, not a single microbe, that is responsible for IBD. The role of gut flora in the progression of these diseases has led some researchers to study the impact certain probiotic bacteria might have on maintaining the state of reduced inflammation that occurs during remission stages of the diseases. Several controlled, clinical trials have shown that high levels of certain probiotic strains can extend the disease-free remission period. Studies also have documented this effect on remission of pouchitis. But not all studies have shown benefits. Additional research in this area is progressing in Europe (http://ec.europa.eu/research/quality-of-life/ka1/volume2/qlk1-2000-00563.htm) and the US. (http://www.clinicaltrials.gov/).

I still haven't read anything that convinces me taking store bought probiotic "supplements" is a good idea. All these clinical studies where never done with off the shelf probiotics. They use lab grown cultures.

However, I do make my own probiotic yogurt with a Casei, Bifidus, and Acidophilus culture. I'm pretty comfortable getting helpful bacteria in food, not so much with the supplements.

I haven't taken the VSL #3, but my doc gave me several weeks worth of an OTC probiotic called Align (you can read about it at alignGI.com -- i don't sell it or anything, that's just on the box)It's lactose free but contains milk ingredients and soy ingredients. It apparently has only one baterium, Bifidobacterium Infantis 35624, in a daily 4 mg dose. They said it could cause problems in the first few days, and it did -- I felt like a balloon had been inflated in my stomach, then slowly moved down my intestines. Gas? Well,if my car ran on methane, I probably could have driven to the border... but it's better now, no more side effects, and my Crohn's is under control. I was alternating between one extreme and the other before I tried this, so for me it's a help. I haven't seen the research on it. They sell it at Target but were out when I was there; the price shown was over $20 but I don't know how many days worth that was. Good luck!

Hey! The Align worked great for me too!! I am having some off days here and there, but I still think it's responsible for getting me this far when nothing else did.

The price is about $30 for a months worth. It amazes me that Remicade and Humira are like $3k and haven't done much except give me side effects and this stupid little probiotic thing is $1 per pill and works magic. Go figure!

I'm glad it's helping you -- so far it's done better for me than anything else I've tried, too. Maybe it's just the placebo effect, but if that were true, wouldn't the Remicade have helped too? And it didn't. Made me sick, actually. I really like this so far!

This disease is so individualized it makes me crazy! I've been taking Align for the last month but it has had no positive effect on me whatsoever. In fact, I just had the worst weekend of my life while I was on it. I started on the VSL #3 on Monday and so far, I'm MUCH better. Knock wood!

Chuck

Yes, it's crazy-making, and we're like snowflakes -- no two alike! I hope the VSL #3 continues to work for you -- and Align is working for me! Go figure... Hope you're feeling much better soon!

Not an intentional bump, per se...

I wanted to update this post. It's been just over a week that I've been taking the VSL #3 and I have to say that my improvement has been nothing short of dramatic. No bleeding at all anymore and the amount of discharge has decreased to nearly nothing and only the first thing in the morning, at that. I'm able to sleep through the night, I'm no longer racing to the bathroom to avoid having an accident and the number of daily trips is back down to around four, or so.

I'm going to give it another week taking 6/day and then decrease it to a "maintenance dose" after that and see how it goes. I'll update again if anyone's interested.

Cheers all!

Chuck

6 per day! Whoa! Why did you arrive at that figure?

I have a fridge full of vsl but admit I never got into a good routine of taking it. I used to take one a day but I seemed to get cramps after taking it so I never stuck at it.

I spoke with the Pharmacist and read the directions on the bottle... I have UC which seems to want a higher dose (4-8/day) than Crohns. In addition, I was (am?) in an active flair. It has almost put me into a complete remission, already. Starting next Monday (the beginning of week 3) I'm going to adjust the dose down to 4/day and see how it goes. If all goes well, then I'll drop it to a maintenance dose of 2/day and monitor accordingly. My friend who put me on to VSL#3 is on a 2/day maintenance dose and has been for four months and is doing well.

I honestly don't think this would have worked if I wasn't hyper diligent about the dosage.

Cheers!

Chuck

Chuck, I am so excited hearing about your positive improvement with VSL#3! I am frantically searching for something natural that makes sense, and to help my Crohn's so I wont' have to start Humira. Are you taking any other meds by chance along with the VSL#3, and if so did you happen to start them the around the same time you increased your VSL#3 dose? Not questioning the the benefit your getting from the VSL, but just am curious.
Thanks you!

Chuck and the others with good luck on VSL#3.
Where did you buy it from (manufacturer, website URL or phone number)?

I am doing well now but wonder what will happen when fully off steriods. I want my ducks in a row with a backup plan if what I am on now doesn't do the trick in 2 weeks.

Thanks for the info,
EP

I had run out of Imuron (it wasn't working, anyway) and the GI wouldn't refill it until I got another blood test. I decided I wanted to go another direction. I found this exact brand: www.vsl3.com at my local pharmacy. As I had mentioned, I was alerted to it by my friend, Amy who had tried it on the advise of her GI (we share the same GI, but he never even mentioned this to me). I started in on it on Monday, June 8th. I took 6/day for a week and while on it and noticed results within a day and a half.

While having a conversation with a friend of mine who is an ER doc. He mentioned that I might want to refill my prescription of Prednisone to help "jump start" the healing. Instead I found approx. 20 or so 10 mg preds. in a bottle from my previous prescription (a few months old), so I did a quick calculation and decided to start in at three a day for four days, then two a day for 2 days and then one a day for the last three days. I began this on Sunday, June 14th (but again, I had already had a marked improvement!). At any rate... I am doing 2 preds. today and then one each for the next three days. So I'm still hopeful that this will be the right solution for me, as I'd prefer to take control of my health as opposed to leaving it up to my GI. I do have a call into him to let him know what I am doing.

I hope this is helpful to others. I'm happy to share my experience. particularly if it helps anyone else!

Cheers all!

Chuck

I am all for taking control of your health and your healthcare, as long as you educate yourself first so you're not putting yourself at risk (and obviously YOU have done that, Chuck!). In fact, I advocate attempting to know your illness better than your doc does, and helping to educate him or her. They aren't all experts with Crohn's or UC, just because they're gastro-enterologists, especially in smaller towns or clinics. I'm glad you're doing so well, Chuck. I'm just starting a flare, apparently, and feel like hell. I had started the Align and was doing well, but the last three days -- whoof. I've been tied to my bathroom again. I hate this! I'll have to look for VSL#3!
Lee