Community Forum

Hello -

My daughter was diagnosed with Crohns back in September. She is on Pentasa and Colacort. Her dr at one point switched her medicine but than put her back on Pentasa. But her stomach pain is unbearable. Someone sugested using a probiotics. But it seems so overwhelming just searching for one on the internet.  Does anyone have any recommendations?

 Reply posted for lynnem.

Hi,

 Reply posted for nmmom2.

What's digestive advantage?  Is it another kind of probiotic???

 Reply posted for lynnem.

My son's GI doc recommended VSL #3. He takes two capsules at breakfast and 2 capsules at dinner. He also takes 2500mg of fish oil with breakfast and dinner. I also give him one caplet of Digestive Advantage for Crohns & Colitis with breakfast.

Don't know if it is making a difference, but it can't hurt.

 Reply posted for lynnem.

I don't think you have to be nervous about the probiotics.  From the information I have gathered, we should all be more nervous about the drugs we have to give our kids.  What I have discovered is that we all should be taking probiotics.  They are very healthy (kinda like a vitamin)  Anyhow, the VSL does recommend that a doctor give you the dosage amount.  My son takes 2/day.  Good luck.

 Reply posted for Concerned Mom.

My 18 year old daughter had UC.  We just went for a 4th opinion.  The new specialist said he thinks she may have "bacterial overgrowth" which is very common with UC patients.  He wants her to take a Lactulose Hydrogen Breath test but she will have to stop the probiotic for 2 weeks.  She has been feeling great on Ultimate Flora Critical Care 50 Billion.  This just happens to be the probiotic the specialist has recommended to his UC patients for 10 years.  This probiotic needs to be refrigerated.  I know there may be differences in the probiotics used for UC and Crohn's patients.  My question is... we are going on a 10 day road trip and I was wondering if anyone knows of a good probiotic for UC that doesn't have to be refrigerated???

 Reply posted for lynnem.

My 8 year old daughter has Crohn's and her doctor recommended Culturelle which you can buy at most pharmacies and drug stores.  I found the best price at Walmart.   It comes in capsule form, but I open it and mix it with something sweet -- yogurt, pudding, whip cream, etc.  It is hard to know if it has made a difference but I feel better giving her something that may be proactive in fighting this disease.  It is worth a try.  Good luck.

 Reply posted for mpace.

thank you  for the encouragement. We are going back on the 25th. My daughter is 20 I told her she needs to be comfortable with her Dr and if not we need to find get another opinion.  When I spoke to the people at VSL they recommended that the dr tell me how much of it to use a day? It just seems confusing since they offer various ways you can take it  and compared to the other probiotics on the  market it just I seem a little nervous about about the dosage.. A

 Reply posted for lynnem.

Oh btw, you do not need a prescription for the VSL 3.  Just call walgreens and they will order it for you.

 Reply posted for lynnem.

I went through 3 GI doctors before I found one that accepts some of the alternative medicine (such as probiotics)  Through diet, nutrition and re-testing my son's stools I have kept him out of the hospital and he has actually been drug free for 6 months.  He just had a flare up and the new GI doctor thinks it could be related to the flu he just got over or maybe allegeries to pollen.  I never thought I would find a GI doctor who actually believes there are outside factors causing the inflammation.  Please let me know if I can offer any help to you.

 Reply posted for mpace.

thanks for the insight.My daughter had her 2nd colonoscopy today and the news was not good. the ulcers have gotten worse so right now she is going to stop taking the florastor and go on prednisoe for a couple weeks to get the inflammation down. Her Dr doesn't seem to interested when I talked about  the probotics . Also when I asked about the VSL #3. which I have heard rave reviews about . So I plan on researching more about the VSL # 3 just not sure about what dosage or form to use. 

 Reply posted for lynnem.

My son was using the florastor.  Come to find out it has yeast in it which may cause stomach issues.  I just started him on the VSL 3 which is (I think) specifically for Crohn's disease.  My doctor said my son should be on a probiotice for the rest of his life.

 Reply posted for amalone.

thanks for the info on the florastor. We bought some so we are keeping our fingers cross. I have been reading alot about the VSL#3. I am going to ask her Dr about it.

 Reply posted for lynnem.

My daughter  (12, CD) takes Florastor, it can be found at Walmart or Walgreens. There is also Culturelle, can be found at walmart...or there is VSL that is found online. I recently heard you can sometimes get your insurance to cover VSL # 3. although I dont know much about it. My daughter's  Dr. told us about Florastor so we tried it, and it seems to help her !