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08-01-2012, 12:36 AM   #1
ramittman
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Probiotics

I've been trying to get as much information on probiotics as I can for my son. I've heard great things about taking supplements, but not sure what kind since different products contain different strains. Also, wondering if the kind you drink or eat are as effective as ones that come in a capsule.
08-01-2012, 04:34 AM   #2
Sascot
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Hi, this is something I have toyed with over the last few months as I notice alot of the kids seem to take it in some form. However I am doing my usual worrying and I never know if I give him something wrong that I will make things worse. I decided to just go with a bio-yoghurt and hope for the best.
08-01-2012, 07:20 AM   #3
ellie
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Not one of the "kids", but I have a couple of probiotic drinks daily, at the suggestion of an excellent physician who was looking after me 18 months ago, and my CD has been pretty stable since. Have toyed with the tablet/capsule varieties briefly, but not sure they helped. Whenever we're travelling, a visit to the local supermarket to buy some "germs" is a must! I do struggle to reconcile the assorted strains mentioned in various papers with what I can find on the supermarket shelves though..


HD
08-01-2012, 08:34 PM   #4
NMMom
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Our dr had us start VSL #3 when he fist suspected IBD. it is rather expensive and you have to get it by ordering directly from the company or having your pharmacy order it. It is only supposed to be used under a doctor's supervision. There is quite of bit of info nine if you google it. Good luck!
08-03-2012, 04:44 AM   #5
DustyKat
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I did some research and settled on Culturelle Lactobacillus GG, they are a capsule.

Does it help? I don't know but I personally don't see that it does any harm. One of the main reasons I started/suggested my kids take is because they have both had ileocaecal resections and are therefore at a greater risk of SIBO (Small Intestine Bacterial Overgrowth).

Dusty. xxx
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08-04-2012, 07:26 AM   #6
ellie
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@Dusty, hi from another Aussie
Just wondering where you source your "Culturelle"probiotics?


HD
08-04-2012, 07:28 AM   #7
my little penguin
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We have DS on the prebio which is already in his Peptamen jr.
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08-04-2012, 07:56 AM   #8
Farmwife
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We've been on probiotics for years. We like the brand Primal Defense. They even have one for just kids. A bit pricey but worth it to us.
We were told the refrigerated (liquid) kind is best. More live strains in it.
However we use the powder kind.
ALL PROBIOTICS SHOULD BE STORED IN THE FRIDGE TO PROTECT THE LONGEVITY OF THE PRODUCT.
PLUS YOU SHOULD NOT TAKE PROBIOTICS AND ANTIBIOTICS AT THE SAME TIME.
We take ours a couple hours apart.
Some say your should not start probiotics at all until the antibiotics are done.
You can be the judge of that.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-04-2012, 09:53 AM   #9
crohnsinct
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ALL PROBIOTICS SHOULD BE STORED IN THE FRIDGE TO PROTECT THE LONGEVITY OF THE PRODUCT.
Yes! I keep mine in the fridge right next to the yeast....Oh no! Not that again!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
08-04-2012, 02:18 PM   #10
DustyKat
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@Dusty, hi from another Aussie
Just wondering where you source your "Culturelle"probiotics?


HD
Hi ellie,

Sorry for the delay, for some reason I wasn't tagged to your post.

I get them from an Oz website...

http://www.evidencia-australia.com/p...utm_medium=cpc

I have them delivered to Sarah, she is in Sydney and IIRC she gets them the day after ordering.

Dusty.
08-04-2012, 02:45 PM   #11
kiny
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Each strain has a specific spot in the GI tract, they build their little house in a spot they are comfortable in. Bacteria love to do things in group, they are not happy on their own, they do everything they can to be in the same spot, many create biofilms, it makes them stick together. Mucosa layer moves also, mucosa does not sit still, it moves all the time in the body as a form of defense mechanism, if it say still bacteria would take it over, so they go somewhere they are happy with. Probiotics have specific spots on interest. (invasive bacteria creating disease do the same thing, the place of lesion and skip lesion in the intestine are related to "the nature of the beast" bacteria are predisposed to go somewhere in the body)

(this is one of the arguments for bacterial involvement in crohn, if it was autoimmune or non-pathogen related, you would have inflammation everywhere, that doesn't happen with crohn, it's almost always terminal ileum involvement and skip lesions are almost always in the same spot)

As a general rule:

All the ones I know called lacto-something..take up spots in the small GI tract.

All the ones with "bifi" in them reside in the colon.

As for which are good, I talk to someone a lot who does research on that, and to be fair they have no clue what is good, he recommends just to take ones you are comfortable with at this point as long as you pick a kind that use the small intestine.

(they are looking at types that increase butyrate, there are some that do that, I have taken that type, but I can't say it is good or not, I don't really know how much it helps)

(reason for the butyrate is because for one they see butyrate is less in ppl with CD and second, butyrate has an effect on IL-10, IL-10 is a super strong anti-inflammatory in our body)

(argument against SCD diet is butyrate, SCD is way too short on SCFA (short chain fatty acids), most important one is butyrate, I am not a fan of SCD at all)

Last edited by kiny; 08-04-2012 at 03:33 PM.
08-04-2012, 03:10 PM   #12
kiny
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here is study if you care: http://jmm.sgmjournals.org/content/5....full.pdf+html

(just swallowing butyrate does not have the desired effect, it does never reach the spot or not enough, so they look at probiotics that produce the stuff for us since they have no issues getting where they're supposed to be, they're smarter than a silly pill)

(if you take probiotics that increase butyric acid, please say how the child or you are feeling after, I am very interested, thanks)
08-04-2012, 07:56 PM   #13
izzi'smom
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VSL #3 was also recommended to us...we have used it off and on for the past 18 months. (Usually depending on fiinances...it can be pricey)
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
08-04-2012, 09:43 PM   #14
crohnicaly stinky
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I have tried a couple of different ones, some expensive. But I get the best luck with one that is relatively cheap, Pb 8 Acidophilus I take two a day. Good luck!
08-05-2012, 03:19 AM   #15
DustyKat
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Thanks for the info kiny!

Dusty.
04-16-2013, 11:24 PM   #16
Mehita
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I've been researching different probiotics because the one my kids used to take is no longer being manufactured. I just got a bottle of Ther-Biotic Children's Chewables on the recommendation of the health store here, but my kids aren't loving the taste. Any other suggestions? Preferably a chewable that is good for the small intestine, though we take them more for general health than Crohn's specifically.

I also read that it's best to take probiotics just before bed and let them work while your body is naturally rejuvenating itself, which makes sense to me. Unfortunately, we forget a lot and already have the teeth brushed when we remember. When do your kids take them?

Thanks!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-17-2013, 05:01 AM   #17
DanceMom
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Our doctor isn't big on probiotics, but did try A on them briefly in an attempt to control her SIBO. He had us try Florastor kids. Came in packets that we mixed with juice twice a day (didn't mix well at all). A months supply was $78 and they didn't manage her symptoms at all.
04-17-2013, 05:29 AM   #18
Dexky
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My son has been taking Culturelle Lactobacillus for over two years. Don't know if it's worth the cost but they certainly haven't harmed so until told otherwise, we'll keep on.
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EJ dx w/ Crohn's 12/09
PSC 3/10

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04-17-2013, 07:40 AM   #19
Brian'sMom
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Our GI said that when they're flaring and there are sores in there they don't want to introduce any large amounts of bacteria. Anyone else heard this?
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-18-2013, 02:40 PM   #20
Twiggy930
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We use Lactobacillus planetarum (brand name is TuZen). They are in the form of shelf stable capsules. I prefer the shelf stable probiotics because you never know what has happened to the products before you buy them. So you may be buying dead bacteria because the delivery truck wasn't kept at the right temperature or the store's stock boy left the box of probiotics on the loading bay for an hour and they warmed up, etc, etc, etc...
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
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