Are Probiotics the Answer?

Introduction:

I’m a 74 year old male who retired about 10 years ago. My career was in executive staffing and I owned and operated a successful executive search firm. Recently my wife and I celebrated our 50th wedding anniversary.

Some more about me:

We live in CT and spend the winter months in Fl. I played the guitar and bass professionally while in college and still study and play the guitar. I also play tennis and golf and remain very active physically. In retirement I’ve become a student of Shakespeare’s plays.

Symptoms:

Currently and for the past 18 months I’ve been close to, but not quite in remission. No blood, mucous, urgency, etc., but in the john usually 3x in the morning. After that I’m OK for the rest of the day.

Are Probiotics the Answer?

Following my UC diagnosis about 8 years ago, I was prescribed Asacol, Mesalamine, and a number of other drugs. Evidently these drugs are sulfa based and I’m allergic to sulfa. I was also allergic to 6MP and had to stop it in a couple of weeks.

I was finally put into remission with a combination of cortisone enemas, and HC Acetate suppositories. A year later I flared again, this time requiring prednisone to get the flare under control. When in the 1st 2 flares I couldn’t leave the house. Although there was no bleeding and I didn’t feel sick, I did need to stay very close to the bathroom because of extreme urgency. At times I needed the bathroom 15-20 times per day.

Then, about 5 years ago, I flared again due to serious stress. This flare was not as serious as the earlier ones. I learned through trial and error that a suppository would give me about 4-5 hours of protection (not needing a bathroom). Although I was able to manage things and function normally, I couldn’t eliminate the symptoms and was getting increasingly frustrated and very nervous about the extended use of prednisone. I’d taper down to 10 or 5 mgs of prednisone and flare again.

This lasted until about 18 months ago. At that point I asked my Gastroenterologist about diet and probiotics, which I had been hearing about. He was pessimistic about diet, believing as other GI’s I’ve spoken with do, that there is no solid evidence that diet is helpful. Although also pessimistic about probiotics he did say there was one that is worth trying – VSL#3. Evidently it is the only one that has been clinically tested with some, but not complete, success.

I then went on a gluten free, dairy free diet and began taking VSL#3. Eureka! They worked!

Medications/ Supplements:

These steps have worked extremely well for me. The only downside is the cost. There’s no insurance coverage for VSL#3 and the DS (double strength) version was costing $300/month. However after about 6 weeks my symptoms improved enough for me to try the less expensive dosage form (1/3 the cost), which continues to work very well for me.

I’m not on any medication at all at this point and am keeping my fingers crossed that I’ll remain this way. I’m gradually introducing dairy and gluten into my diet, so far with positive results.

written by Steve B




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42 Responses to Are Probiotics the Answer?

  1. Lana September 13, 2013 at 2:43 pm #

    Thanks for sharing this. So encouraging. I am in the same type situation as I have been on prednisone for about 3-4 years straight, unable to wean past 5-10 mg without flaring. They are about to start me on Humira, which is scary with some of the stories I’ve read here of others who have tried it and had bad reactions. Just wondering, how long did it take you to see results from the probiotics and diet?

    • bev September 14, 2013 at 3:44 pm #

      Lana, just for your info…I actually noticed good changes and lessening of my UC symptoms only a couple of days into taking a good probiotic. It does matter when you take them though. They work best on an empty stomach…completely empty, like first thing in the morning upon waking, and then no eating or drinking anything other than water for at least a half an hour. That way, nothing interferes with their absorption.

      That gives them the best chance to really work!

      Bev

      • Lana September 14, 2013 at 10:20 pm #

        Thank you, Bev. I have been taking probiotic (Ultimate Flora Critical Care) for about a month now, but I take it after I eat breakfast. I will switch to taking it before. I am also taking L-glutamine. Does it matter if I take that with a meal or not? Still hoping I can get this under control and get off prednisone.

        • bev September 15, 2013 at 8:36 am #

          Oh Lana…it is imperative that the probiotic be taken on a completely empty stomach. Food will impede it, causing it to be not as effective…or ineffective. Please take it as soon as you wake, and then don’t eat breakfast, or drink anything other than water for at least half an hour. Trust me. If it’s too difficult not to eat first thing, then either take it right before bed (providing you have eaten nothing for at least two to four hours prior), or get up mid sleep, which sucks, and take it then, and go back to bed.

          I also take the L-glutamine on an empty stomach. a couple hours after breakfast, an hour before lunch (around 10 or 11am).

          These things have to be allowed to do their job with no food or liquid, other than water, in their way.

          Cheers

          • Lana September 15, 2013 at 9:49 am #

            Thank you! I will definitely change the way I’ve been taking them and hope for the best.

          • bev September 15, 2013 at 10:21 am #

            I’m sure that you will see a difference!

            :)

      • Donna October 31, 2015 at 1:54 pm #

        Hi Bev,

        I just started a probiotic as well and totally agree with the absorption being a major part of them working properly. My doctor advised early morning, empty stomach with 30 minutes before food. Which one are you taking?

        God Bless,
        Donna

        • noelgallagirl November 1, 2015 at 7:44 am #

          Hi Donna,

          I take the ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. 50 billion.

          One per day, first thing upon waking up, with water, at least 30 minutes before anything else, food or drink, just like your doctor says! Completely empty stomach.

          YOU have a GOOD and smart doctor, believe me!

    • Steve September 16, 2013 at 4:58 am #

      Lana,
      It took about 6 weeks on the DS dosage of VSL#3 (needs a prescription) to see results. Once the symptoms subsided I reduced to a less expensive and lower dosage (60 capsules, 2 per dose). I’ve been on this ever since and it continues to work. I started the no gluten/no dairy diet at the same time. Problem with this is that one can’t be sure which is working, the pills or the diet. But I’ve been gradually allowing some gluten and dairy back in, thus far successfully.
      Steve

      • Lana September 17, 2013 at 6:42 am #

        Thank you, Steve. I need to start back with the diet as well. I am about to start tapering my prednisone, and I do better if I am eating no dairy/gluten/sugar. I agree it is difficult to know what is working and learning how to balance things. I hope you continue to feel well!

  2. Sharon September 13, 2013 at 5:38 pm #

    Hi Steve:) Depending on which insurance you have, VSL#3 DS may be covered under the MEDICAL side of your plan but not the PHARMACY side. While probiotics are not considered medicine by most companies, it is a “medicinal food source” and oddly enough, can end up in the same category as testing supplies or other non-medicine. Only the DS version is covered since it is the only one requiring a prescription. It takes a lot of patience and several phone calls but may be possible to get as much as 80% covered after you have met your deductible.

    I found it helpful to have the website from VSL#3 DS in front of me so I could read the section highlighting the differences between the different forms. Also, if you do get approval, your doctor’s office has to call in for pre-certification. Unfortunately this has been my hang up since the nurse has made several phone calls but keeps getting transferred to the pharmacy side where it is being denied. Since I have been in a nasty flare and prepping to start the GAP diet, I haven’t been fighting them. My doctor gave me a very generous lot of samples to hold me over. I have to say though, I will pay full price if they don’t approve it.

    • Steve September 16, 2013 at 5:03 am #

      Sharon,
      I have Medicare and did talk to them when I was taking the DS dosage, without success. But I was not as persistent or well-prepared as you have been. If I need to go back to DS I’ll be following your advice. So thanks for your input.
      Steve

  3. AJF September 14, 2013 at 5:02 am #

    Steve,
    Yes, thank you for sharing. I am new to UC, diagnosed 3 months ago and am going to start trying probiotics today! Your story is very encouraging. And, Sharon, thanks for the tips on insurance coverage. Great to know!
    AJ

  4. Lane September 14, 2013 at 3:02 pm #

    Hi Steve,
    I’m happy to hear that probiotics are working for you. I take Ultimate Flora for
    Seniors everyday and it seems to be working. I also take Prebiotin which I mix with cereal or fruit. I have not had any UC symptoms for about a year this month. So I’m happy with probiotics. Actually, my primary care physician suggested I try a probiotic to see if it would help me and after 2 months I noticed I got better. I had been on Asacol and Lialda before but they were not helping me. I wish you all the best.

    • bev September 14, 2013 at 3:41 pm #

      Still doing good, huh Lane?!

      Fantastic…so great to hear.

      :)

      • Lane September 14, 2013 at 7:04 pm #

        Hi Bev,

        Yes, I’m feeling terrific! I just moved so I thought with the stress of moving my UC would flare up again but it didn’t so I’m happy about that. Again, thank you for sharing your story. It’s when people share that we can try different things to see what works. My best to you Bev! :)

        • bev September 14, 2013 at 8:32 pm #

          That really is so wonderful, Lane.

          All the best back at you my friend!

  5. Dianne September 14, 2013 at 3:09 pm #

    I was on Asacol for a while then on steroids and then
    My Doctor wanted me to go on Humira injections in my belly. I looked it up on the Web and found out how dangerous it really is. I was taking Natures Bounty Probiotics and continued to do so. I have gained some weight and am so much more energetic. I will continue on the probiotics forever.

  6. bev September 14, 2013 at 3:40 pm #

    You bet, Steve! As a matter of fact, the NEWEST research centers on FTs…or fecal transplants, designed to get that good bacteria back into our poor suffering colons!

    Finally, perhaps those awful meds will stopped being prescribed, for they do not really help the root of our problem. They are merely band-aids and they almost always either do not work, or work for awhile, and then stop working. If I had a nickel for every UCer who’s had the same story…going through the merry-go-round of UC meds, only to be frustrated and disappointed. Not to mention the short and long term side effects! Ugh. Been there.

    I too have managed real remission for the first time in 15 years (almost two years of remission now) by simply taking a GOOD probiotic (like you) and fermented L-glutamine. It’s unbelievable, really, after taking asacol for 15 years straight, and it actually making me sicker than the UC itself. I must have been allergic too, but I trusted and listened to my doctor who told me to keep taking it…it was necessary…it was not the asacol, but the UC that was making me feel so terrible.

    Yes, Steve, you have found the answer! The only real problem with probiotics is that we have to keep taking the forever. They are designed that way, so that we have to keep purchasing them, where as FTs may last longer and we might only need to take them daily for awhile, then perhaps once per week, and then when remission is attained, only take them again when the UC flares up again. That would be great! Also, I have heard that a synthetic yet natural FT enema is in the works, thus negating the ‘yuk’ factor.

    Can’t wait!!

    Bev

    • Steve September 16, 2013 at 5:13 am #

      Yes Bev, I’ve been following the FT information as well. As you point out, it’s intended to do the same thing that Probiotics do, but the “yuk” factor makes taking pills seem a much more digestible (pun intended) solution. Here’s hoping the synthetic product will come to fruition.
      Steve

      • bev September 16, 2013 at 8:58 am #

        Yes! I hear that.

        :)

    • Juliet
      Juliet September 16, 2013 at 6:00 am #

      Yup! The synthetic FT began here in Canada I believe! A scientist designed a robotic digestive system that produces the fecal matter complete with all necessary bacteria. I am not phased by the yuk factor. I guess coming across healthy donors for the FTs is proving problematic. Well, fingers crossed guys that we can all receive FTs in the not too distant future and help our bodies heal once and for all :)

      • Gail September 16, 2013 at 6:54 am #

        Yes, Juliet the lab is at the University of Guelph in Guelph, Ontario (for anyone who might want to read up on it). It’s called a “robo-gut”. The dr. in charge is Dr. Emma Allen-Vercoe. Fortunately for us, she came here from the U.K. I think that’s probably the one you are referring to. I believe McMaster University in Hamilton is also doing some research on fecal transplants.

      • bev September 16, 2013 at 8:01 am #

        That sounds so good, I could cry :)

      • bev September 16, 2013 at 8:02 am #

        Oh…yey Canada, by the way!! Being a Canadian, I would love to be a countryman of the ‘pioneers’ of synthetic FTs!

        What an honor huh…lol

  7. shelly in maine September 14, 2013 at 4:28 pm #

    Hi Steve, AJ, and all,

    There is also a code for your Dr. For the vsl3 DS… http://www.probiotics-lovethatbug.com/vsl3.html…not sure if these are current codes, but it it what I gave my Dr. a couple of years ago after much time researching the internet. If you scroll down you will find the info on the VSL 3 DS…make sure it is that one or take the info into your Dr.

    The thing about prednisone taper is to go even slower n the taper…I know Adam had mentioned it and the last time I was on it it was an extremely slow, but definitely worth the time taper…and that was well over two years ago!

    Be well all, Shelly

  8. shelly in maine September 14, 2013 at 4:47 pm #

    Hi all,
    I just posted with a website and it is awaiting moderation…about the vsl DS codes. I also wanted to mention that I started with another product from my Dr. By a company called metagenics-ultra flora plus DS. And of course the one Bev takes I actually mixitup with my vsl on a few days.
    I don’t know about anyone else, but when I first started the probiotics it gave me a terrible stomach ache/cramps and I called my. Dr. To make sure it was normal and he said yes..I took gas x the first couple of days and then I was fine. I switched to the vsl and then when that wasn’t enough…vsl3 DS!

    Remember as similar as uc is is it is also that different for each person! Not a 1 size fits also disease/condition nor a 1 size fits all symptom fix.

    Baby steps all! :-) Shelly

  9. Shirley September 14, 2013 at 5:12 pm #

    I am 2 years your senior Steve and my UC started just after we celebrated our 50th wedding anniversary in 2009. I had a terrible time on and off over the next years. In May this year it flared again and I was back on meds. I was introduced to glutamine powder through this amazing site and I am back in remission again. I just take 1 tsp in a little water each morning. I am in my 2nd tin now. At my specialists concern I still take 1 azathoriprine daily just to keep him happy really. They don’t like you to go off your meds but as I see it if you can go without them its all the better. It is worth a try I can’t believe how quick the bleeding stopped and I started to feel better. Good luck you are on the right path.

  10. Don
    Don Makowski September 15, 2013 at 6:02 am #

    Hi Steve and thanks for sharing your story. I am always amazed at the different ages that people first get diagnosed with UC. I am curious. Is there any family history of UC? There are/were 5 in my family and all different ages from mid 20’s to me diagnosed at 50. Oh BTW I am also a guitar player! Music keeps you young!
    I have always had problems tapering from Prednisone too. My current GI had me go from 60mg/day to 30mg/day for a week and today I am down to 15mg/day. I will then go to 10/week, 5/week, and 5 every other day for a week and stop. I am very nervous today as I have been doing much better.
    I have been prepping my system for home FMT. After reading Micheal Hurst’s story I am convinced that this can work. You can follow my progress at
    http://www.donmakowski.blogspot.com/2013/08/name-is-don-makowski-and-i-decided-to.html
    (Adam, I hope I am not overstepping by linking my blog. I do not plan to start a website or write a book. I just want people to know that I am doing everything to cure myself and give hope to them if it works for me.)
    Thanks!
    Don Makowski

    • Steve September 16, 2013 at 4:52 am #

      Don,
      To answer your question, there’s no history of UC in my family. I have the honor of being the 1st and, hopefully, the last.

  11. Dede Cummings September 15, 2013 at 6:47 pm #

    Dear Steve and everyone, This is so optimistic.. I hope Richelle will read this… Maybe Adam can link it for her? Lots of great stuff here… I think you are doing the right thing, Steve, but watch your intake of grains and dairy. I went off dairy and ALL grains…wow, what a difference! It has been four months. I take that Ultra Flora probiotic that Shelly takes (hi Bev and Shelly!), and have been feeling great—I can’t tolerate the probiotic in an empty stomach, so I take it before bed… ,much better for me than first thing in the morning (I know, Bev, right?! I’m a night owl, anyway!). Don, I am going to follow your progress, but remember that a positive attitude will improve your tapering… You can so do this! I tapered down to 5, then I was cutting the pills in pieces! I worked with a naturopath (I did write a book abut this, but won’t put the link here, lol ;), and she helped my get my body and microbiome in balance. I am so happy to read these excellent posts. It is so important to deal with gut bacteria—first and foremost. Good luck to all. Steve, thanks for posting!! You are so awesome, really… ;)

    • bev September 15, 2013 at 9:51 pm #

      Way cool Dede!!

      :)

    • Steve September 16, 2013 at 5:23 am #

      Don,
      To answer your question, there’s no history of UC in my family. I have the honor of being the 1st and, hopefully, the last.

    • steve September 16, 2013 at 5:29 am #

      Thanks for your kind words Dede, and I totally agree with your warnings about Grains and Dairy. I also have come to the conclusion, as you obviously have, that Naturopaths are more likely to be helpful for UC sufferers than Gastro docs. But finding the right one isn’t an easy task. I’m still searching. Any suggestions as to best way to go about this?
      Steve

    • shelly in maine September 16, 2013 at 3:25 pm #

      Awesome Dede…as always-well said!
      Glad to hear your update.

      Best, Shelly

  12. Prince choudhary September 15, 2013 at 9:39 pm #

    Thank to u all loving people.i m getting ur info.and i m taking probiotics from two days.it is very gud n effective for me.i can eat some grains n dairy products also.so special thank to miss bev.

  13. Lynn September 16, 2013 at 10:57 am #

    Thanks to all of you and your words of encouragement as the UC battle is fought! Never really know where to write on this site so here I go…my son was diagnosed at 18, symptoms of blood and diarrhea and always urgency. He has a story as all UC’ers do with their journey but won’t go into detail as someday he will write his own story to encourage others as all of you have given me hope that he can attain remission. So we had a pretty awful experience at the University of Chicago where they are screening patients for their FMT, the only one ever approved by the FDA. First of all the drive into Chicago was stressful with construction and traffic but we did make it to the appointment on time. We had a lot of hope going into this appointment but our hope began to diminish quickly. It became apparent to us that he really was only going to be a number and this was research so they really didn’t seem to be too warm and fuzzy but very sterile and mostly interested in the results. A lot of whispering and going in the hall and talking and phones going off when the subject matter we were discussing is hard for my son to talk to a room full of people opening the door and going in and out…so in the end they need to study his records more and send for slides from his past 2 colonoscopies and appendectomy. They had had all his medical records for two months and said they had everything prior to the appointment! So…in the mean time the doctor said we could prescribe asacol or something else for you to help with remission! My son has tried asacol 3xs and he told the doctor this but she still started with the GI lingo. I thought my son was going to blow! We got out of there as fast as we could, I was polite but inside I was furious. It was just all bad and my son is pretty down about the whole experience, especially how he was talked to and treated. Pretty unprofessional and downright disgusting. To give them the benefit of the doubt maybe something was going on in the clinic that was causing them to act so selfish and uncaring. I know they think I’m a nut case as my son and he has chosen this route no meds but probiotics and supplements. Hasn’t reached remission but is able to deal with his days going 4 to 5xs a day including the urgency which sometimes an incident occurs. After this traumatic experience he’s pretty depressed but have decided to really tweak the diet. He absolutely loves to eat and broth and overly cooked veggies aren’t very exciting to him. I told him not many choices here. Don will read about your FT at home as I think that is the next thing for us is an at home FT research study! Ha ha need humor with UC right? Now I feel better, thanks.

  14. sue sekular September 16, 2013 at 12:15 pm #

    New to this UC stuff, interested in anything that would help that doesn’t require surgery. Dr. says probiotics do not really work but I see he’s wrong. On 3 ASA pills daily and so far not helping, How long does it take for this med to get in your system? Any help would be most appreciated, This column was helpful and very interesting.
    Thanks

    • Don
      Don September 18, 2013 at 3:47 am #

      Hi Sue. Are you in a flare? I assume that you are. In my experience and from what my GI has told me ASA meds will not get you into remission or help with reducing the flare. Prednisone is the only thing that works for me and I need high doses to calm the inflammation (60mg/day to start). ASA meds can be taken at the same time and as you reduce the Prednisone they can keep you in remission. When I was new to this I expected Asacol to work but it did nothing so I quit taking it. Recently my new GI prescribed 2 Lialda pills a day while taking and weaning from Prednisone. I am doing better this time and think the Lialda might actually be doing something. I haven’t had any side effects from it either. The SCD intro diet can also offer some relief also and I have had success with it. I hope you feel better soon.
      Don

      • sue sekular September 19, 2013 at 5:46 am #

        Thanks Don for your help. I appreciate having people like yourself to chat with regarding UC. Yes I’m in a flare-up again and am on prednisone again but down to 20mg and I said Asa drug but I meant Aza and am working up to 3 a day, Dr says it takes about 2-3 mos to get into your system. I also started on Ultimate Flora 50 million whatevers and L glutamine thanks to this column. My problem is mostly at night, I wake up about every 2 hours for the bathroom. I hoping that the Probiotic and the L-glutamine will start to help soon. Wish me luck!
        Sue

  15. Angela October 28, 2015 at 7:33 am #

    I called the company that manufactures VSL#3 DS. I was told that if my insurance doesn’t cover it they will send me it for a year free of charge. Good luck!

  16. Donna October 31, 2015 at 1:40 pm #

    I flared in February and was on 6 Asacol a day but that with suppositories were able to calm it down but by September, still could not reach remission. (I also take Sucralfate 2x daily and Omeprazole 1x daily. These have helped tremendously for pain and indigestion.) I have now stopped the Asacol and switched over to Lialda 2 pills 2x daily and took Uceris for 4 weeks only and now in remission. I still have to be very careful to keep certain items out of my diet though. I have also started Vitamin D3 and Probiotics daily per my doctor. It took a while to find the right combination. Fortunately, my doctor is awesome and open to switching things up to get me to improve. He also doesn’t mind me asking him about holistic measures and openly discusses them and anything else I read here or anywhere else online. It’s so important for you to continue to be your best care advocate and have a doctor who is “teaming” with you to fight this disease!
    Good luck and God Bless!

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