Probiotics for CDers...? VSL #3 specifically

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/12/2010 5:47 PM (GMT -7)   
Hi Everyone,
I have Crohn's colitis, with my main symptom being diarrhea. I'm currently flaring so now it's blood too. :( And more diarrhea. Great.
 
Anyway, I have been trying different things to try to get things under control, and trying probiotics was one of the things I wanted to try. I tried Align and didn't notice much of a difference, so after researching around on the UC board I started taking VSL #3 DS. Most people said that was the best probiotic out there because it had the most strains, but I'm not noticing any difference. In fact, lately, I've been noticing that after I take it I have a CRAZY diarrhea attack (like, worse and different in quality than my usual diarrhea) and I'm wondering if I could be like allergic to it, or if my body is just getting used to it, or if I'm just not meant to take it.
 
It says it's for use in people with UC specifically, but since my Crohn's is so similar to most UC symptoms, I thought it'd be good to try. I'd like to hear anyone else's opinions on this...I don't want to give up on it but it's so expensive and if it's not helping I don't need to keep doing it...but on the other hand I don't want to give up if it's going to help at some point...
 
I'm at a loss. I'd love to have anyone's thoughts. Probiotics sound so great but so far I haven't seen the benefits.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 100mg Imuran, Psyllium Seed Powder, VSL #3 DS, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention). 


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 2/12/2010 6:01 PM (GMT -7)   
VSL#3 and other probiotics are worth a try. But I tried a lot of both VSL#3's capsules and powder (my gastro gets a lot of free samples) and never noticed a difference. I also tried several other types of probiotics -- acidophilus, yogurts, etc. -- and same story.
Cimzia, Asacol


lero3645
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/12/2010 6:08 PM (GMT -7)   
I have had the same question actually. I have diarrhea really bad, also. Bloody and anywhere from 5-30 times a day. I have a friend with Cyliac (Sp?) and she can't get wheat or gluten. She responded well to probiotics, specifically Align, but I don't know about with Crohn's. My doctor has said he doesn't think it would do me personally much good. Hope that helps a little.

Sam
Everything in moderation, be thankful everyday, and be the most honest I can be. If I can look in the mirror at the end of the day and say I have done these things, I am happy.
 
Drugs I have tried: Pentasa, Entocort/Imuran, Prednisone, Remicade
 
Drugs I am on: None for Crohn's, Predisone for drug induced Psorasis
 
What I need: A bowel resection


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/12/2010 6:10 PM (GMT -7)   
I'm just curious if the DS is in capsule or packet form? Also, how long have you been taking it? Did you notice the D immediately?

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/12/2010 8:14 PM (GMT -7)   
It is in packet form. I wish it was capsule--the powder tastes so bitter. I have taken anywhere from 1-4 packets a day, and have been taking it for about 2 weeks. I noticed no improvement while taking it the first 10 days or so, and then I had to go off of it because I was on an antibiotic (Cipro) for a week for an issue unrelated to Crohn's. During that time I started Colocort enemas and started feeling better and having less diarrhea and no blood. Then I started the VSL again a few days ago and seriously like within and hour of taking it I'll get a crazy diarrhea attack--like much worse than my usual diarrhea and not at the usual times.

Thank you for your replies so far everyone!
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 100mg Imuran, Psyllium Seed Powder, VSL #3 DS, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention). 


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/12/2010 8:53 PM (GMT -7)   
Great minds think alike! I've been trying to introduce a good maintainence probiotic and researched VSL#3 and just couldn't afford the price on my income. So, I researched the different strains and found a source that is MUCH CHEAPER that has almost all the same, maybe missing one or two?? Not sure what difference this makes, but the literature (you can google on Pharmaca.com website where I bought it) talks about the probiotics coming from many sources of bacteria which at least sounds good!

New Chapter Organics - Berry Green. It has also in it (I guess the WHOLE POINT with the probiotics as the EXTRA) is the dehydrated greens and fruits. It says it includes 20 of them, but not sure how many it counts towars your veggies/fruits for the day. Since I'm on a low residual diet and not getting the usual obscene amount of veggies I usually eat in a day, I'm getting my greens this way. It tastes delicious and doesn't have any of the artificial sweetners in it (i.e. it has stevia), etc.

I think Pharmaca has or had a sale on it. I don't work for them or have any affiliation ... I just used to live near one of their stores and a big fan of the products they carry ... so a bit of disclaimer.

As for why you have D with VSL#3, it looks like you can take it in three forms: capsule, unflavored packages and flavored packages. The first two have no offending ingredients that I can see. The latter, however has "Ingredients: Lactic acid bacteria, maltose, natural flavorings, and silicon dioxide." of which the "natural flavorings" can be anything and is usually an artificial, but not always, flavoring ... as they don't have to disclose. It could even be MSG, but of course, it wouldn't be in this case. My point: I, too, get D with anything with "natural flavoring". So, maybe this is it???
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/12/2010 10:30 PM (GMT -7)   
I agree with champagnekindofgal that you might want to consider what fillers in the VSL packet might be causing you problems.

Here's what VSL's website says:

"VSL#3® comes in a powder that is intended to be mixed with at least 4 ounces of cold water and consumed. VSL#3® has a light lemon cream flavor. Ingredients – 450 billion lactic acid bacteria, maltose, natural lemon flavor, silicon dioxide.

VSL#3® is also available as an unflavored powder that is intended to be mixed with yogurt, ice-cream, apple sauce or any other cold food and consumed. Ingredients – 450 billion lactic acid bacteria, cornstarch."


Maltose is a sweetener--a disaccharide or double sugar. Double sugars are what the SCD is against. Cornstarch is apt to cause anyone intestinal issues and is also "illegal" on the SCD for the same reason--double sugar.

I buy VSL#3 in the capsules because the fillers and flavorings are not present. They are not quite as strong as the packets, but still excellent: 250 billion per capsule, if memory serves me.

I'm so sorry you are having D! But please don't give up on probiotics! You may just need to make an adjustment; try the capsules, or try another brand. Remember, it may take weeks before you notice a beneficial difference. You might also want to try making your own yogurt, or buying a high-quality, organic, plain yogurt for its beneficial bacteria, too! Good luck!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 2/12/2010 10:43 PM (GMT -7)   
I was on a probiotic for nine months before my diarhea disappeared, so hang in there. When it works, it is great.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 2/12/2010 11:34 PM (GMT -7)   
It may contain an ingredient that causes your reaction. I stick with the brands with no soy, wheat, dairy, artificial color, sugar, aspartame, or fillers. I use a capsule. It is possible, your reaction has no connection to the probiotic. It is important to take it every day, first thing before you start eating. At least, those instructions have always been included with my product. I wish you the best of luck finding a solution.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 2/13/2010 5:14 AM (GMT -7)   
I was on a 6 strain formula of pure powder form probiotics for years and swore by it.  Probably relied too much on it whereby avoiding conventional meds, causing extensive damage.  Then I started to get real gassy and bloated.  Two drs believed that I should stop the probiotcs as they felt it was colonizing in my small intestine due to the shrinkage of my small intestine and colon and was now unable to accommodate any bacteria. I was prescribed antibiotics and felt GREAT.   Does this make sense to anyone.  After a yr off of them, my bloodwork shows "remission" (I'm on cimzia) then the gas started up again so I've tried to reintroduce probiotics and found  I bloated up even worse with SEVERE gas and diarrhea. So more antibiotics, and again, feel wonderful, no gas, diarrhea etc.   I'm wondering if  maybe yeast or another bacteria could be contributing. 
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/13/2010 8:34 AM (GMT -7)   
I do not take VSL#3 but take a probiotic called Primadolphilus Reuteri by Natures Way. You can find it in the refrigerated section of your local health food store. Mine only cost me $8-9 month for 30 caplets and you only need to take one a day. I like it because I have a very sensitive stomach and these help me out alot. I was having 4-6 soft/mushy bm's a day and after I started taking the Probiotics I am now only going 1-2 times a day. Hope you can find a probiotic that works well for you. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

mandas2
New Member


Date Joined Mar 2011
Total Posts : 1
   Posted 3/12/2011 7:21 AM (GMT -7)   
HI there. I ahve been doing some research on VSL#3 and noticed many of them have maltose(gluten) in them. Maybe that is the issue
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