29 Responses to 129 Person – Ulcerative Colitis and Probiotics Survey Results

  1. Laura from Toronto
    Laura February 19, 2012 at 1:06 pm #

    Thanks Adam for doing this survey and thanks to everyone who participated. I have been wanting to give probiotics a try for awhile now and the information presented here really helped.

    • Adam
      Adam February 19, 2012 at 7:29 pm #

      Hey Laura,

      That’s great the info’s helpful for you! That’s the whole idea! Good luck to you if you do decide to check out probiotics further. Let us know how things go if you do!

      Take care,
      Adam

      • Malia February 24, 2017 at 5:23 am #

        Hi Adam,

        My 15 year old daughter has been taking Mutaflor for 5 months on their own and then added a steroid enema. I would say they definitely work but not on their own.
        Thanks for the good work

    • Suad November 8, 2016 at 7:51 am #

      I’d like to recommend lactobacillus cassisi its in bio-k and a few other brands research has show this strain helps to repair the colon walls. Very important for those of us who have gut issues.

  2. Rebeka
    Rebeka February 20, 2012 at 10:44 am #

    Thank you Adam!
    Great work, that was really quick!
    I’m so glad to see how important probiotics are to all of us, despite the fact that most of us did not receive a recommendation for them by our doctors! They should consider recommending them, because obviously people are willing to spend money on them.

  3. tracy February 20, 2012 at 6:58 pm #

    Thanks Adam for this survey! It has given me some hope in helping my UC. The results were really positive and helpful.

    • Adam
      Adam February 20, 2012 at 8:33 pm #

      Hey there Tracy,

      I’m so happy you liked it. Big thanks to all 129 of the participants! without their participation, it wouldn’t be possible to get a bird’s eye view into what everyone is doing interms of the probiotics. Good luck to you Tracy, keep your head up, and i wish you the very best!

  4. Armin March 5, 2012 at 10:15 pm #

    Since I have been diagnosed with Ulcerative Colitis (2 Months), I have been taking probiotic yogurts such as BIO-k and Activia. Is this sufficient or should I try the VSL#3. I have been reading a lot about it and seriously considering it.

  5. Senga Taylor March 6, 2012 at 5:51 pm #

    http://www.worldgastroenterology.org/assets/export/userfiles/Probiotics_FINAL_20110116.pdf

    Hi Armin,

    I have just been reading about pro biotics from the site listed above. I actually found this through the IHAVEUC site in the first place. It’s been interesting reading. I began reading about using microscopic worms to help cure or alleviate UC. Thanks to Adam’s site, I am reading a lot of interesting new literature that it’s unlikely I would find easily on my own. After reading some information this a.m. I am going to try and purchase VSL#3 pro biotics for my daughter 12 yrs. I am making the SCD yoghurt, but she prefers it mixed up in my food processor with frozen bananas and raspberries….she calls it Monkey Icecream. She loves it but I am bit worried that after all the processing and frozen bananas there are no live pro biotics left LOL!!! Anyway, I certainly think that you ought to do some research and inform yourself and the site I have gave you is good. Best of luck!! Senga

  6. Terri March 21, 2012 at 5:52 am #

    Adam, Would you mind telling what kind of probiotics you take? Thanks!

    • Adam
      Adam March 21, 2012 at 7:31 am #

      Hey Terri,

      I have taken most recently VSL#3 probiotics, but just a few once in a while. For example, I have not had any in over a month now, and before that I was only taking them sporadically. I need to really test them out for a long time consistently to make a personal judgment call on them.

  7. mrl April 29, 2012 at 5:57 pm #

    What an excellent idea and response from all the participants.
    I was given VSL #3 ds by my dr few months ago and I had ignored to follow his recommendation.
    When I swithed my dr he did a colonoscopy and also found I have c diff. He immediately put me on vancomycin. After that he game me some new probiotic that he is promoting from a new company and magically it worked fine for me. It Is from a company called pancea scientific and the product is called – arise and this is not available in the stores or online. Only available thru the dr in each state/city.
    This really changed my opinion on the probiotic and I am going to try the VSL 3 ds also which is still hanging in my refrigerator.

  8. Tracy May 15, 2012 at 8:36 pm #

    Hey UC Peeps!

    A few months ago I tried a product supposedly made for GI conditions called Inflammacore and I ended up with a rash on the backs of my hands, forearms, chest, I also had some swelling/puffiness on the tip of my nose and my ears. I was told I had an allergic reaction. Well what I’m wondering is if anyone has ever gotten a rash from vsl#3? I went to my doctor last Thursday and in our conversation he was made aware that I’m not on probiotics. He told me that I have to be on them and gave me a 10 day supply. This probably sounds silly because I’ve only been on them for 5 days but I feel tons better. Not like a “healthy” person feels but damn good for a “UC’er. Wouldnt you know it I have a rash (they are little dots) on my hands, arms, a couple on Mr chest but they are not itching like the rash I had last time. I seriously hope that its not an allergic reaction but maybe the vsl#3 working. I’ve heard that toxins leave through the skin. Is this true? Has anyone had any sort of reactions from probiotics? I have a call in to my doctor to see what he has to say. I take 4 Lialda first thing in the morning then about 5 minutes later I take 2 vsl#3 capsules. Two hours after that I take 2 antibiotics. Phew! Maybe I’m taking the probiotics and lialda too close together? Also should I eat something withen a certain amount of time after taking them? I eat probably. 3 hours after taking. Any advice would be so appreciated. Thanks!!!

    • Adam
      Adam May 15, 2012 at 8:59 pm #

      Hey Tracy,

      I myself have not heard of anybody having that type of rash from VSL#3 like you’re talking about. As for toxins leaving through the skin, I’ve definitely heard that before, I think my old accupuncturist doc was talking about that as well. my guess is that different people might have differnet ideas on that though.. Good luck, and great to hear you’re feeling some relief!

      • Tracy May 16, 2012 at 5:08 am #

        Thanks Adam for the input! Am so very happy to read your comments. Today is an off day for me. Boo. But in general the lasr couple of days gave got me feeling more positive about being able to get out and do things again. You are right. That different. People have different views. Thanks again! Oh, do you know if its super important to take gluten out of the diet if you don’t have celibacy? I asked Mr GI about going to. See a nutritionist and he told. Me that’s not neccessary with UC, but with Chrons. I’ve tried. Some gluten free stuff and some is. Ok and well others…not. so much.

    • Coralie October 19, 2012 at 9:51 pm #

      Hi Tracy

      What I can tell you is that I have been on Infliximab (Remicade) infusions for a year now and each time I have experienced an itchy head almost as soon as the drip starts up. I couldn’t be absolutely sure it was the drip causing it as I had recently dyed my hair and thought I could be reacting to the dye. Silly me. A couple of days ago I had another infusion. It wasn’t long before I was scratching all over and I went bright red (like a flush) from my throat up my head and I had a bit of a temp and my blood pressure elevated slightly. The nurses stopped the drip and put hydrocortisone in the drip and gave me an antihistamine to take. Next time they are going to do that automatically. Seems I have to stay on the stuff even if I’m sensitive to it coz it’s my last stop before surgery. I must say I have been much better bowel wise for the first time after an infusion. I think the reaction was stopping me from getting the benefits. Also I went gluten free 2 days ago. I have found two great bread recipes. It seems that if you don’t use rice flour in the making of gluten free bread, it tastes fantastic and the secret is to use several different flours in the same loaf. I will try to add the link here to the one I made last night. Really nice. http://www.youtube.com/watch?v=mQpOjtw2PnY
      I have eaten several slices today (oops!). Next I’m doing cookies! :D

  9. Tracy May 16, 2012 at 5:13 am #

    Ok, I just have to say that I need to read my posts before hitting send.
    Lol. Oops! *celiac not celibacy*! Damn smartphones and the people that operate them!

  10. Sol September 4, 2012 at 7:49 pm #

    Thanks Adam! funny coincidence, but I’ve been thinking about probiotics for a while now and just bought some today and then saw your email. Good verification to start. Cheers

    • Adam
      Adam September 4, 2012 at 7:59 pm #

      You’re very welcomed Sol. Since so many UC’ers use probiotics, its about time there was some sort of survey out there talking about this stuff. Best of luck to you with the probiotics, and have a great week:)

      -Adam

  11. Iqbal Naiyer July 6, 2013 at 5:48 pm #

    On – May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC)

    Well, I am taking given below probiotics on a daily basis. I think somehow and in someway it did helping me out also SCD yougurt is a must not the commercial one since commercial yogurt culture has bifidus and ferment maximum for seven hours. I don’t think you will find a yogurt in the marketplace that has been fermented for 24 hours.

    VSL#3 DS-(20 Pack) – Prescription Only
    Non-dairy Saccharromyces Bolardii+Mos probiotic,
    Theralac (bio-Replenshing probiotic),

  12. Trisha Nave October 3, 2013 at 7:10 am #

    I recently ask my doctor about vsl#3 for my 16 year old daughter who was diagnosed with crohns 4 years ago she recommend I give it a try the problem is my insurance won’t cover it I was wondering if there is a trustworthy online website to order from or if I just have to try and come up with the money some how she order the VSL#3DS PACKETS any help would be appreciated I don’t no if this will help her but with everything I have read regarding this its worth a try

  13. Fred S
    Fred S October 13, 2013 at 4:04 am #

    A huge benefit not mentioned here is that probiotics help prevent colds and flu as well as lessen the duration when sick.

  14. Dennis April 17, 2015 at 7:51 am #

    Thanks Adam, I was considering taking them but I wasn’t sure if it was safe to take them with prednisone. I had a bottle of prebiotics at home and in the label was written do not take if on corticosteroids. I will give it a try one’s I finish mt prednisone which by the way this medication is not making any difference on me.

    thanks

  15. Aine June 8, 2015 at 1:19 am #

    Is there any crossover between certain brands/types of probiotics, and people responding that the results were “helped more than expected” or “helped a little”?

    That’s a pretty big list of probiotics, wondering if the results indicate specific groups of them that seem to either mostly help or mostly NOT help with UC.

    • Adam
      Adam June 8, 2015 at 9:27 am #

      Hi Aine,
      Great question, and without being a probiotic genius, it is true that many of the probiotics on the market contain similar different strains of bacteria within them. Best thing would be to do some research on the websites, even Amazon has this info for some brands, and you can read the exact strains of bacteria within each and go from there. Best of luck, Adam

    • Jackie March 7, 2016 at 12:23 am #

      Hi, since getting IBS (and then UC)I was recommended to take Florajen3 by a friend with similar problems. I did not see this probiotic on the survey list. They are made in Wisconsin and order/buy them at Walgreens. They need refrigeration. Highly recommended! I take before I sleep on a empty stomach.

  16. Brett Bujeya February 25, 2016 at 2:18 am #

    Hi Adam,
    I have been taking a coconut based kefir for about 12 months now and have had some very good results with it. I find stress is a huge driver of my UC, and had an incident that has left me with PTSD and subsequently, a flare-up. I’ve just come off about five weeks of Prednisone; UC settling, but the occasional hiccup, so will hit it with salofalk. My gastroenterologist was very supportive of my using the kefir and has encouraged me to continue with it.

  17. Nolan November 29, 2016 at 10:59 am #

    I used VSL#3 DS on advice of my Doc. That was the most help. Even he did not know exactly why it does what it does. Acacia powder with it, brought it down to almost normal again. HOWEVER UC, I believe, is a result of a permeable small intestine. Until that is abated, I think we are just throwing stuff against the wall and seeing what sticks. There are so many variables it can drive you crazy ( and broke) though. PERSEVERE

  18. Kathy December 3, 2016 at 8:34 am #

    Hi Adam, If you knew how many times I have visited this site for answers you would be floored. Honestly it is one of the most informative sites on google!

    I am currently on Remicade, just finished third infusion. I am really not experiencing relief still flaring. The doc advised to hang in there as it can take 6 months sometimes. I really was hoping to be back to myself for my kids coming home for Christmas. C’est la vie!

    I have decided to add probiotics along with going back on the dreaded 10 mg prednisone. I am currently gluten free, dairy free, and minimal sugar other than honey. If anyone has any other recommendations or stories of moral support for Remicade and how long it takes to work I am kind of needing that at the moment. Thank you again Adam for always being there as well thanks to your countless followers for sharing their stories, it’s what gets me through some days. Namaste and Be well!

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