My Story of Success with Crohn's Disease

No offense meant OP, but results like that are usually individual. No one thing seems to work across the board for everyone...not even medication. It's great that you've managed to find a winning combination for yourself!

It would be nice if you could share your story, as well as what supplements you're using, what diet you're following etc.

Likani I totally disagree with you on Probiotics. They are a definete need with this disease. My life is much better since I added probiotics into my med mix. Almost every member on this forum uses probiotics and I have never heard of deaths or problems with them. Also, we have members who follow the SCD diet and they get billions and billions more beneficial bacteria from their yoghurt. We all tend to have a bacterial imbalance in our intestinal tracts, and the probiotics add in good bacteria to balance out the bacterial fields.

Likani, that link is specifically referring to a probiotic drink....many of us are having alot of success with probiotic supplements that are purchased at health food stores, that don't contain a bunch of junky stuff like additives, sugar etc which do not compare to those commercialized probiotic drinks like the one from your link.

You should consider choosing your words a little more carefully when stating that probiotics have so far caused 24 deaths when in reality it's those junky probiotic drinks that are the issue. Scaring newbies when you only supply partial informantion about something isn't very nice.

I started taking probiotics (not the junky drinks your link refers to) when I was in a horrible flare and I've never been in full remission in my entire 20 yrs of having this disease) and I'm not dead, if anything I can thank probiotics GREATLY for feeling better.

 

OK I am going to 'side' with both sides on this one ;)

DS was on pro-biotics and immune suppressants. I did read that they shouldn't be given to those with a suppressed immune system so I spoke to the man that owned the Health Food shop where I purchased such things and he hadn't heard any such thing but he gave me the number of the manufacturer of the type we were using and I called him and asked and he said that it was not recommended to give them to anyone with a suppressed immune system. So we stopped!

I have also spoken with a friend who is a pediatric consultant(not gastroenterologist) but who does prescribe immune suppressants in her area of speciality and her thoughts were that you would have to be taking a seriously large dose to be at any risk when also taking pro-biotics.

I agree with Nanners on this one...clearly the probiotic drinks they are referring to in the link must be contaminated, you don't always get the full story (or truth) on stories like the one from the link.

I agree with CindywCrohnes, and for me, whenever I take the Activia one, embedded with porbiotics, I get horrible pain and cramps. I tried the pills one and they caused me severe constipation and did not relieve my symptoms. It's an individual issue and I've noticed out of reading different posts, that for a lot of crohnies at this forum, probiotics are a life-saver. For me, neither probioitcs not high fibers get along with my intestines.
Take care!

Fiber supps and probiotics had the same effect--nausea, severe pain, constipation, and bloating..I can go up and down with fiber foods and react sometimes and sometimes not..I have not stuck it out longer than a week with a reaction! I react sometimes to lactose and sometimes I don't? I try to watch the brands of vitamins I take for additives..My system has never liked iron supps either..My B complex supp is a must have, and I know if I don't take it..I am very sensitive to food additives I am finding out by food diaries, and I read labels. I do have a real problem with bacterial overgrowth in my intestines..I usually react after a dose of antibiotics with my system taking alittle while to readjust..I am just wondering if there is something in probiotics my system reacts to as a bad foreign bacteria instead of good?? I have been doing gluten free for alittle while..I have seen a difference in brain fog and nasal allergy symptoms most of all..

Cindy

One last thing, high quality whole foods are generally very good for your health. I eat zero fast food, and avoid processed food like the plague.

Interesting thread but it does concern me that a moderator would make a blanket statement such as :

Almost, every member of this forum is on probiotics and all have received nothing but benefits from them.

I am new to the board but the above statement is just something you cant know unless you have asked everyone on here.

The fact that something works well for you doesnt mean it works for others. That is what various tests are for. I went to Wikipedia for a quick snyopsis......

EFSA opinions of probiotics

The European Food Safety Authority has so far rejected claims on probiotics in Europe due to insufficient research and thus no conclusive proof. This includes:

Lactobacillus paracasei LMG P 22043 does not decrease potentially pathogenic gastro-intestinal microorganisms or reduce gastro-intestinal discomfort.
Lactobacillus johnsonii BFE 6128 . Immunity and skin claims all too general for consideration under the NHCR.
Lactobacillus fermentum ME-3 not shown to decrease potentially pathogenic gastro-intestinal microorganisms.
Lactobacillus plantarum BFE 1685. Immunity claim deemed too general for NHCR.
Bifidobacterium longum BB536 does not improve bowel regularity; does not resist cedar pollen allergens; does not decrease pathogens.
Bifidobacterium animalis ssp. lactis Bb-12 does not help maintain normal LDL-blood cholesterol; does not decrease pathogens or boost immunity.
Lactobacillus plantarum 299v does not reduce flatulence and bloating or protect DNA, proteins and lipids from oxidative damage.
Lactobacillus rhamnosus LB21 NCIMB 40564 does not help maintain individual intestinal microbiota in subjects receiving antibiotic treatment.


I just highlight this to show that nothing is set in stone on Probiotics. There will be reports that they show good results as well as bad results. Like Likani mentioned....there has been more positive than negative.

Have I used probiotics....sure....do they help...sometimes....they are not a cure all for me but they may be for someone else.

Thank you Roni and Dawg for your support, it is really appreciated.

Brett, it is exactly as Dawg said, I made that statement because I have come to know most of the members fairly well. And most of them do take probiotics.

I get my facts from the members of this forum, not Wikipedia. So for those of us here who do use probiotics, we all have found success with them.

There are members for whatever reason have problems with them. What works for one, does not always work for all. But most have had success with them.

I would say those who tried the Activia, I don't think that is the best way to get them. I have friends who do not have Crohns, and the Activia even made them sick and nauseaous and crampy. Its best to discuss with your GI which probiotic you personally should use. The ones who get the best beneficial probiotics get it from the SCD yoghurt, not the store bought stuff. Hugs!

This is an interesting topic. My father ordered a bottle of probiotic pills for me a couple years ago, but I didn't even finish the bottle, because the pills always seemed to cause terrible stomach cramps. I have considered giving them another try. I have been consistently consuming (5x week) an organic yogurt with l. reuteri for the last five years and that seems to have helped a lot. I had a professor in college that worked early on in the development of this yogurt and back then it was the only one that contained l. reuteri. I'm not sure if that is still the case, but my professor thought that it could be potentially beneficial and recommended that I give it a try. It may be just a coincidence (my symptoms have been relatively minor since my resection back in 1994), but I have noticed a significant decrease in diarrhea over the last 5 years.