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Best over the counter probiotics for Crohns

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Posted 9/1/2011 1:20 PM (GMT 0)
Hi everyone, just wanted to update on my daughter, Caitlen. She was on the 6mp for about nine months and as some of you may remember, we knew it seemed to not be helping. She had surgery three months ago for a blockage of her small intestine and a fistula on her large intestine. She had 13 inches of her small intestine removed and three of her large, due to the fistula. She is no longer on the 6mp and her doctor said we were going to treat her as if she does not have Crohns at present and to just take a probiotic, Culturelle. She is maintaining bi-monthly checkups for her Crohns and last week had a small bowel series.

She has been doing great since then, other than she has to go to the bathroom immediately after eating "anything". She has gained from 83 to 107.

My question for any of you with experience is what do you find to be the best over the counter probiotics? Caitlen has been taking Culturelle since surgery but she doesn't feel it is doing what it should because she still has the fast urgency immediately after eating. I also notice that it does not contain many ingredients so I wonder if it is too low powered for her.

Thanks in advance for your help.


Margie
Posted 9/1/2011 1:42 PM (GMT 0)
If it is your doctor's idea for her to take probiotics then ask him for a prescription for VSL#3DS. It is the most powerful probiotic around. Very expensive but health insurance should help if it is by prescription. It is powder in a packet that she could mix in liquid or spread on cold cereal. You don't have to empty the entire packet at one time.

There is also regular VSL#3 which is half the potency of the prescription form. Florastor, Udo's Probiotics, RenewLife Ultimate Flora Critical Care, and Primadophilus Reuteri are all good probiotics.

BTW I find Culturelle to be a very effective probiotic. I take it on trips and vacations because it doesn't need to be refrigerated. I take more than one capsule a day. Culturelle and Align are not quite as advertised. This is from Consumerlab.com:

"# Align claimed to contain 1 billion live bacteria when manufactured “and an effective level until as least the “best by” date. ConsumerLab.com testing revealed that only 530 million bacteria were viable. However, a clinical study of the bacteria (Bifidobacterium infantis 35624) in Align showed that it could reduce symptoms of Irritable Bowel Syndrome (IBS) at a dose of just 100 million. ConsumerLab.com found that the product exceeded this amount, so the product’s claim to provide an effective dose is correct. Whether or not a higher dose might offer greater efficacy is not known.

"# Culturelle claimed to provide 10 billion cells in a daily capsule through the “best used by” date; ConsumerLab.com found only 5.8 billion viable cells. It is not clear whether this is a sufficient dose. Most clinical studies with Lactobacillus GG have used 10 to 20 billion viable cells per day. A dosing study (Saxelin 1991) using the bacteria in Culturelle (Lactobacillus GG) found that a daily dose of 1.5 billion cells was not able to colonize the gut, but a dose of 15 billion was. The amount found falls between these two dosages."
Posted 9/1/2011 1:58 PM (GMT 0)
Culterelle was the probiotic they gave me while I was in the hospital. It worked well for me. VSL#3 like Babe said is the one lots of doctors prescribe. But I have heard it is pricey. I think you will get lots of opinions on probiotics, as we all have ones we prefer and that work well for us.

I think it is a big mistake that your daughter is not on any meds. I did the same thing after my first resection (no meds afterwards) and I ended up needing another surgery only 3 years later. I hope the same doesn't happen to her, but I feel pretty confident we will see you here again talking about how sick your daughter is again. This is a chronic and incurable disease that must be treated at all times. I think she should at least be on one of the lesser meds like Asacol. You need something to keep the inflammation in check. Good luck! jmho
Posted 9/1/2011 3:01 PM (GMT 0)
I make SCD yougurt and it has abuot 1 trillion live active cultures per cup. I eat about 2 cups per day. I believe this is way stonger and I know it is way cheaper than VSL #3DS.

Also, somehow I feel better taking probiotics I know are grown in organic milk vs taking more pills (This part might be all in my head).

Also, I found the Probiotic Revolution bu Huffnegal a very intereesting read that taught me tons about probiotics.

Dave
Posted 9/1/2011 9:28 PM (GMT 0)
I took Align for a couple of weeks. After I started taking it, I experienced overwhelming nausea 'round the clock. Since the only thing I'd changed (in diet or medication) was the Align, my family begged me to stop taking it. I did, and the nausea disappeared almost immediately. A few months later, my daughter started taking it. She doesn't have IBD, but she generally takes a probiotic. She'd run out of hers, so I gave her my Align. Within two days, she, too, experienced horrible nausea, which disappeared when she stopped.

My GI says many of his patients have had great success with Align. But I hate the stuff.
Posted 9/5/2011 4:01 PM (GMT 0)
Margi,
Glad you posted, my g,I. Gave me a list and said the very, very best probiotic is "florastor" I got it at the pharmacy behind the counter.. I have trouble gaining weight and since I have been taking it I have managed to gain about 5 ponds which is remarkable for me. I also have found to have a more "formed" stool..
I also have had many fistulas, I know your daughter is young Now, but if I can give any advise..if she decides to have children (which most crohns pts go in remission during pregnancy) make sure she has a c-section. I have had 13 surgeries to repair tearing and fistulas from natural childbirth. Hope it helps, good luck.
Leslie
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