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What does your GI say about probiotics?

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Ulcerative Colitis
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Posted 12/10/2009 6:24 PM (GMT 0)
My daughter (dx pancolitis four months ago) had a check up with her GI yesterday and we asked about probiotics. I expected her to say something about VSL#3 and I've been reading about people getting VSL3DS (double strength) through their GIs by prescription to help save on the cost. Instead, the GI said that probiotics don't help UC and are only useful in treating pouchitis. She suggested we not try them. I'm losing faith fast. I live in Ottawa, Canada and there are only two pediatric GIs in this place. I'm thinking of traveling to Toronto for my daughter's care (four hours away approx). This and many other comments have led me to lose a lot of faith in this GI. How much does your GI know about probiotics? Will they prescribe them? Does this GI seem a little out of the loop or is this pretty much the norm?
Posted 12/10/2009 6:28 PM (GMT 0)
My GI said that he thinks they probably help, but that he doesn't really want to recommend a specific brand, because there's just not enough research out there to know which is best. He said he'd write me a script for the VSLDS if I wanted him to, but my insurance doesn't cover it.
Posted 12/10/2009 6:46 PM (GMT 0)
My son's GI recommended probiotics 2 1/2 years ago and gave us some samples of Digestive Advantage (I didn't notice that it helped anything.)
Then a year ago my GI where I used to live recommended VSL#3, cited research saying it had helped in rats, told me I needed a probiotic with more than just acidophilus (I had told her I ate a lot of yogurt) .....my new GI responded positively when I told him I was taking them, but said he usually recommends Align because of its availability. He cited research that the bifidum in particular helps UC.
Posted 12/10/2009 7:59 PM (GMT 0)
Thanks fruitgirl and songlady. I'm thinking of introducing bifidus despite the fact that it's illegal on the SCD which my daughter is currently on. I keep hearing that it's very important for the colon. I'm wondering why the GI didn't know about any of this. I can understand them not knowing which ones to recommend (I figured they would say VSL3 because of the research on this) but to advise against using them worries me..
Posted 12/10/2009 8:04 PM (GMT 0)
I heard that both Bifidiobacterium and Lactobacillus are good...one is for the upper GI tract and the other for the lower. I cannot of the life of me remember which is which, though! The one I take (listed in my sig) has several strains of both of those, and something like 12 billion CFU's/capsule. The bottle says to take 3/day, but I only take 1, and seem to be doing fine.

I looked on the Natural Factors website, and it has a Canadian and US "version" of the site, so maybe you could find it in your area.
Posted 12/10/2009 8:08 PM (GMT 0)
In my experience, finding GI's knowledgeable of probiotics is largely hit or miss. Some are well informed and supportive of their use, others not so much.

I do not see this changing until the therapeutic value of probiotics is broadly recognized in the medical community - which I think is just a matter of time. Hopefully we will then see the production of probiotics come under regulatory control, effective strains identified, and insurers willing to defray costs of their use.

Until that day arrives, we do the best we can - with a little help from our friends.
Posted 12/10/2009 8:42 PM (GMT 0)
I just got home from my GI's office. She suggested Florastor or Align.
Posted 12/10/2009 9:23 PM (GMT 0)
     While being hospitalized last year, my GI placed me on FloraQ and wrote me a script for it.  Well, it is sold OTC and the cost is pretty hefty.  I went to a nutritionist and she suggested Powerdolphilus by County Life.  I order it online.  I believe I only paid like $12 or $17 for a bottle of 200.  I take two a day.  I really don't know whether it helps or not, guess it can't hurt.  Since I started Remicade last month I have enjoyed a significant improvement in my health.  I am now tapered down to 10 mgm of prednisone, still on the Colazal but take 6 per day instead of 9 and a Cort suppository every other night.    The doctor hopes to have me off all meds for the UC except for the Remicade.  Sounds good to me!
Posted 12/10/2009 9:26 PM (GMT 0)
Hello. All the docs I've dealt with for my UC have all said...if they help, use them.

I think the Ultimate Flora that I use has a kid's version.

So I'd say, if you notice that they are helping I'd surely go for it!
Posted 12/10/2009 10:35 PM (GMT 0)
My GI said that probiotics are good to take (also fish oil). He didn't say anything about it until I brought it up tho.
Posted 12/10/2009 10:39 PM (GMT 0)
Out of all the probiotics I've tried, only Culturelle makes a difference...I can even consume cake now, so long as I prepare ahead of time.
Posted 12/10/2009 10:55 PM (GMT 0)
I've seen several GI specialists and they have all recommended probiotics. When I first got diagnosed the doctor gave me some probiotic samples right away (they were either FloraQ or FloraStor).
Posted 12/11/2009 12:16 AM (GMT 0)
My GI likes them- one of the last times we had an office visit, we had a long chat about the various types. I told him I had been on Cultureklle for ages, & then he starts going on about how the bifido bacteria is really good, & pulling out articles to show me & stuff. He advised me to try a high bifido one, which I have added into my mix. He's never offered to write a scrip for VSL, but then again, I haven't asked! But overall, he's in favor of them.

Posted 12/11/2009 12:35 AM (GMT 0)
Never mentioned, LOL.
Posted 12/11/2009 3:31 AM (GMT 0)
Been through at least six different GIs and none of them ever brought it up. When I inquired, they were either indifferent or took the "if you feel it helps, take it" stance. I know the average doctor is trained almost totally in meds and surgical procedures, but come on. Probiotics are so mainstream now and the benefits so well-established, I don't see how so many medical professionals can remain ignorant.

Killcolitis, IMHO, it's worth it to travel any distance to find a doc you feel can give your daughter the best care. As I've said before, the progressive GIs seem to be clustered on the east and west coasts of the U.S. Not sure about Canada.
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