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Probiotics any information out there?

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Ulcerative Colitis
Probiotics for UC?
Yes - 100.0% - 7 votes
No - 0.0% - 0 votes
Have no idea - 0.0% - 0 votes
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Posted 6/12/2010 9:19 PM (GMT 0)
Our 10 year old has been diagnoised with UC 15 months ago we have gone through the dictionary of meds with him all the way to Remicade infusions. He continues to have consistant flares unless he is on Prednisone. We are to a point that the Doctor's are saying surgery (J-pouch) is our only other option. We have one last shot to try and figure something out to help him. Does anyone have any ideas? We have been reading up on the Probiotics and were wondering if anyone out there has used this and worked or didn't work. Any information on this at all would be helpful we are lost. The Dr's have taken him off all meds they state we can try probiotics if we choose but, they state he should not be on Prednisone at the same time due to the fact we would not have a good idea if it was working. We do not want him to be in pain or going to the bathroom 20 times a day but, that is what happens without the Prednisone. So Dr allowed us one more week on Prednisone to research and make a decision this allows us 5 weeks before he is completely weaned off Prednisone again and our decision has to be made at that time to avoid pain and trouble he will have. So anyone with pros or cons about probiotics please let us know good, bad indifferent anything. How you started what you used etc...

Your help is greatly appreciated.

Joe
Posted 6/12/2010 9:32 PM (GMT 0)
I use VSL#3 incorporated into homemade yogurt and Mutaflor. I really think the effects of currently available probiotics are mild and they are suited to maintenance therapy. Both of the above have been clinically tested as such and were found effective on UC. I guess it wouldn't hurt to try.

There are people on the board that have used feces transplants for stopping flares. I believe that a feces transplant from mother to child might be the most likely to work. I don't think they are legal for a doctor to do in the US though.
Posted 6/12/2010 9:35 PM (GMT 0)
Hi Joe, Welcome to Healing Well! I am hoping this that your screen name isn't really your real name - if so, it would be a good idea to change in for confidentiality's sake.....
I'm so sorry for what you're going through with your son! This disease is rough on anyone but heartbreaking when kids have it.
Probiotics. Hmmm, from my viewpoint, the two big ones are Mutaflor and VSL#3. Mutaflor is very new in its availability in the US (is that where you are?) but has been around for years elsewhere.
VSL#3 is the other biggy (read: lots of probiotics per dose, and expensive) - I have taken it for over a year now and I find that it helps. I take the Double Strength version (VSL#3DS) which is available by prescriptions only - my insurance helps a lot with the cost.
I know it works on me because twice I'd experimented and stopped taking it, and my flare came back. The flare then got better when I re-started it.
And my son's GI tells a story about someone they'd tried everything on - and then tried this in a "what-the-heck" sort of way - and she went into remission.
My GI, when I had discussed this with him, said that bifido bacteria were the ones shown in research to help UC.
I had taken Ultimate Flora Critical Care, 50 billion per capsule, and it had helped some..My son does fine with Align.
If you use the "search" button at the upper right corner of the screen, you'll find lots of discussions here about probiotics!

Good luck, and keep us posted!
Posted 6/12/2010 11:20 PM (GMT 0)
Hello Joe, 

I was introduced to Probiotics 6 years ago by a family member who swore by them I was in a bad flare for about 6 months and stuck in bed for about the same time.  I lost a ton of weight, and nothing seemed to be working.  I started taking 1 container of BIO-K PLUS PROBIOTIC which has 50 billion live cultures and within a week I started to see improvements.  I swear it was what helped to pull me out of the worst flare that I have had since 1995.  Today I alternate between BIO-K PLUS AND RENEW LIFE-ULTIMATE FLORA CRITICAL CARE PROBIOTIC (50 billion live cultures) and I have had less flares and I stay in remission alot longer.  I do notice that once I stop them my stools are looser and symptoms will start appearing shortly after.   When I do feel a flare is coming on I increase my dose up to 4 times a day on an empty stomach.  They are definately worth trying and I don't see any cons in using them except for a little gas when first starting them.

Metamucil is another great thing that many of us here take daily. It absorbs the water in the colon helping to bulk up the stool and it also cleans the colon walls.  I use the powder with sugar but I wouldn't use  the sugar free one because of the aspartame.

Has your socn tried any of the rectal meds?  Cortifoam is an easy one to try especially for a kid because it's a foam and easy to retain so it can be used morning and night.

Have you tried cutting out all of the flour products or any other foods that could be irritating.  It might be difficult with a 10 year old but with my one child who has severe food alergies it  was the best thing that I did was to clean up his diet. He is a much happier and healthier child today. 

I hope something helps him he seems to young to be going for surgery  maybe another Doctors opinion?  They all perscribe different things?

Posted 6/13/2010 1:34 AM (GMT 0)
Haven't tried any rectal medications have basically followed Dr's suggestions till now when surgery seems to be the only option. Been to Mayo clinic for the second opinion and they agreed that we try Remicade and the next step would be surgery but, we are just having a hard time accepting that he is only 10 years old and we want to give him every chance to maintain a healthy happy life with no surgery. We have eliminated corn but, nothing else. We are ignorant when it comes to alternatives and are on a time limit. We are not sure about the flour connection it is the preservatives that are creating a problem? We by no means are "healthy" eaters we are a meat a potato's kind of family. He will eat red meat, fish and chicken and be happy with no vegetables etc... He takes vitamins including Vitamin D-3 and a multi vitamin. He seems otherwise healthy he has never been too thin he was always average we have never had problems with him losing too much we have the opposite problem of gaining lots of weight due to the Prednisone and the Remicade. He was just recently in the hospital for 3 days due to the excessive loose stools with blood and had his 3rd colonoscopy showing the disease is worse and seems nothing is helping. He is allergic to nothing he is healthy you cannot tell he is sick except for the fact he goes to the bathroom often.

He was diagnoised February 2009 has been on Flagyl, Pentasa, Prednisone, 6MP, Lialda and Remicade
He recently stopped 6MP last month has been on Remicade since February he has only been off Prednisone a total of maybe 1 month

He is still on Remicade double doses 200mg back on Prednison 20 mg and taking nothing else
He is 110 lbs he was only 86 lbs in November.
no corn in diet (we found that to be a trigger for blood so removed all corn, chips, popcorn etc..)
Posted 6/13/2010 1:50 AM (GMT 0)
I am on the other end of the age chart - 70.  I was diagnosed just 3 years ago.  I went through all the mesalamines and cannot tolerate them.  I do believe Align was one of the first things that helped me.  I have mild to moderate proctosigmoiditis with a persistant spot in my rectum.  Diarrhea (about 5 times a day) was stopped after about 3 weeks on Align.  I take it every day and two when taking an antibiotic.

I took prednisone 5 months - stopped the bleeding, etc. - tried 6 MP - but in the end what helped me get completely in remission and is still helping me is the rectal meds.  Cortifoam is easy to use as are any suppositories.  If UC is throughout no doubt something else may be needed, of course.

ElaineNY

Posted 6/13/2010 2:21 AM (GMT 0)
I took probiotics 15 years before I was diagnosed with UC and continued to take them throughout my years with UC and into my years post UC. Do they help? I have no idea. I take them now for different reasons than I took them as a teenager. I think anything alternative is worth a shot as long as it doesn't cost a fortune and as long as you understand when to give it up and move on.

BTW- There are lots of kids, even younger than 10 who have had jpouch surgery. You can meet their parents at www.j-pouch.org if you want to talk with someone who's been through it as a parent.

Sue
Posted 6/13/2010 3:06 AM (GMT 0)
Something else you can look into is probiotic enema's as a way to get the good bacteria right into the colon directly. I tried my first a few days ago as I had little bleeding and irritation in lower colon that wouldn't stop, so far it seem to help, but still a wait and see thing to know for sure. I end up using Primadophilus Reuteri mixed with some warm distilled water. I take it orally as well for quite a while now. There are quite a few probiotics on the market, but you need to get a good quality brand and keep it in the fridge to preserve it the best. Cheap Wal-mart ones are probably no good and the bacteria are all dead on use.

Here is few paragrahs from Jini Thomspon on the subject.

"This retention enema, which delivers very high dose probiotics directly to your colon (and lower part of your ileum) can provide dramatic healing results. As the name suggests, this is not a cleansing or flushing enema, but rather it is an implant or retention enema – where the goal is to hold the mixture in your colon until the liquid is completely absorbed.

Many people use Jini’s Probiotic Retention Enema during severe inflammation and bleeding for quick healing, whilst others prefer to wait until things have calmed down a bit and they’re tolerating the probiotics well orally first. You really have to just follow your own body wisdom (intuition) on when would be best for you. Even people who have not seen great results from oral probiotic supplementation (it takes longer and can be more difficult to colonize via oral supplementation) see significant symptom clearing following this retention enema."
Posted 6/13/2010 12:39 PM (GMT 0)
There is a group dedicated to children with UC and Crohn's that uses diet modification and probiotics successfully.
Here is the link. You will be able to connect with other parents going through (and have gone through) what you are.
Best wishes.

pecanbread.com/p/intro/nt/introhome.html
Posted 6/13/2010 2:34 PM (GMT 0)
Hi Joe,

If your son has never tried rectal meds maybe you can ask the Dr for a script for cotifoam and hycort they both contain steroids but aren't like oral prednisone.  It was mentioned about adding probiotics into the enema you can also add the oil from the vitamin e capsules (400 iu) into the bottle.  I use about 8 per night when I see blood and flaring they help to stop the bleeding and aid in healing the lining of the colon.

The book Breaking the Vicious Cycle by Elaine Gotchal (I hope I got the name right) is a worth while read.  It talks about diet and what food to cut out.  It might look extremely difficult to follow but even if you can make a few major changes it might be worth it. Today I eat alot differently than I did 15years ago when I  was diagnosed,  but I can say I have had fewer flares and I can control things better once I start to notice symptoms coming on.  For me daily probiotics, metamucil, exercise, getting enough sleep, watching what I eat and staying on my meds oral and rectal when needed seem to be working.

 

Posted 6/13/2010 4:07 PM (GMT 0)
zippy and all.  I would like to comment on probiotics.  I started with Align because the doctor gave me a month's worth.  After two weeks my D had turned to mostly solid stools and less frequent.  I do only have mild to moderate UC but lots of D with blood was why I went to the gastro doctor.  I have been taking Align for about 2 years now.  I did try two others - much "stronger" - one you had to refrigerate - right back to gas and D fast.  Once I ran out of Align for 5 days and same thing.  Still had some blood and mucous until on prednisone but it helped me a lot.  Just as a note - Align website (so, believe it or not) says...

" Align capsules come in specially designed blister packs that ensure bacteria remain alive and effective until the date on the box".

Just my experience - everyone is different and trying different probiotics may be worth it to some for sure.

ElaineNY

Posted 6/13/2010 5:21 PM (GMT 0)
I used to take loads of probiotics but I have since stopped and I haven't noticed any worsening of symptoms. I know they are good for your flora but for me, I don't think they were doing enough to justify the cost. I do still eat some yogurt here and there but I am not a fanatic like I used to be.
Posted 6/14/2010 5:42 AM (GMT 0)
Try removing bread in any form from his diet. No bread is the one thing I've kept doing since trying the SCD. bread increases my current symptoms at any given time by quite a bit. Staying hydrated is very helpful too it seems. When Im severly flaring my body almost seems to cut off its thirst mechanism I dont even notice it usually untill Im severly dehydrated. Ive had to go to the ER for dehydration 2-3 times since my diagnosis. Maybe try some iron supplements if there is alot of blood to prevent anemia.
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