Fecal Transplants Cured My Case of Ulcerative Colitis

Michael Hurst fecal transplantMeet Michael:

I am a 34 year old man originally from Florida who has lived in the Washington, DC area since college. I was a Political Science major at American University and have been an elected official. Hobbies include swimming, weight lifting, running and trivia. I’m also an IT consultant, author, speaker and life coach. I was diagnosed with Ulcerative Colitis just before my 21st birthday. I tried a variety of different drugs ranging from Prednisone, 6mp, Asacol, Remicade, anti-biotics including Cipro, pro-biotics, diets and finally Fecal Transplant. I am happy to write that I now consider myself cured after 18 months with normal bowel movement and no UC drugs.

Some more about me:

I’m pretty much shameless. Otherwise I think I’m pretty normal, I like to figure things out intellectually. I also like swimming, weight lifting, running, going out, hanging out and recreational sports like kickball.

Colitis Symptoms:

I have been symptom-free for just over 18 months now and consider myself cured. Almost two years ago now, I came 3 days away from scheduled surgery, a full Colostomy with temporary diverting Ileostomy and Ileoanal reservoir when I discovered one more treatment option to try. I cancelled surgery, much to the chagrin of my colorectal surgeon and others because I really thought this could work.

While I had previously heard about Fecal Transplant – also known as Fecal Bacteriotherapy, Fecal Microbiota Transplantation and many other terms – for Colitis caused by Clostridium Difficile, I had not heard of it being successfully used for Ulcerative Colitis. Not until I found a study by Dr. Thomas Barody that had been published in the Journal of Gastroenterology where he documented its successful use in 6 patients. I then set out to do it myself and this lead to what has proven to be a lasting cure.

Fecal Transplants Cured My Case of Ulcerative Colitis and Saved Me from Surgery

When I was almost 21 years old I was traveling with my family in South Africa when I developed Ulcerative Colitis. It started with unexplained inflammation in my eyes and then turned to watery stool with bright red blood in it. When I got back to the U.S. Ulcerative Colitis was confirmed by 2 different doctors and stool tests did not reveal any known parasites. I still transferred into American University in Washington, DC and tried to carry on as best as I could even though 60 mg of Prednisone and 12 x 400 mg of Asacol was not effective in stopping the flare.

Finally the addition of Cipro ended up stopping the flare and I was able to taper off Prednisone and maintain remission for a while after that. However flares continued intermittently, during those times I would go back on Prednisone until the flare died down so that I wasn’t losing blood and tapered off of it. A year later I started on Accutane for acne, which I had had for years, but had been made worse by Prednisone.

In retrospect I think some other factors also contributed to the onset of Colitis, including more frequent diarrhea. In retrospect these symptoms could have been described as Irritable Bowel Syndrome (IBS). The factors included moving to a more northern climate for college (from Florida to Wisconsin and then to Washington, DC.) I think Seasonal Affective Disorder (SAD) played a part as well as St. Johns Wort which I used to self-treat the condition. I also think switching to a high fiber diet in high school, The Zone Diet, which included lots of raw vegetables, nuts and dairy also contributed. I also wonder if anti-biotic use and frequent abdominal pains when I was an infant also contributed.

Fast forward back to college and after college. I tried my best to maintain remission over the following years, which included going on Prednisone to control flares and I even tried Cipro once or twice again too with some success. I branched out and continued trying more approaches. This ended up including a low residue diet which I read about in the book Eating for IBS, this did help a little for slowing down diarrhea but was not a complete solution. I tried the Specific Carbohyrate Diet (SCD), and then later a gluten-free and dairy-free diet. However high amount of nuts and raw fruits and vegetables seemed to cause worse diarrhea and urgency so I moved away from that. I also tried pro-biotics such as VSL #3, which seemed to help in very high doses, however it was very expensive at almost 4 Trillion CFUs per day (Colony Forming Units, a measure of good bacteria count for a pro-biotic.)

I then tried Remicade, however I ended up getting two infections that required hospital treatment including a boil in my groin region and a skin infection on my leg that required a 4 day inpatient stay. While being treated with anti-biotics in the hospital with Vancomycin I had an almost spontaneous remission of Colitis, however recovery was slow until I started taking massive amounts of iron too. I sought out another Gastroenterologist specifically to try anti-biotics again. I wanted to use anti-biotics and then pile on pro-biotics as a one-two punch. However the health insurance I had at the time was not very good and would not cover VSL #3. My appeal was denied even though I pointed out that it was much cheaper than Remicade which not only cost $10,000 a dose billed to insurance, but had also contributed to a 4 day hospital stay.

Finally as I was losing weight and feeling discouraged I decided to follow my doctor’s advice for surgery. It didn’t seem unreasonable given my situation – that nothing except Prednisone could sustain any remission, and even that was starting to not work as well as it did before. I planned to have surgery at Mayo Clinic near Jacksonville, Florida since it was only about an hour drive away from my parents. I was told I would not be able to take care of myself for a significant period of time afterward. However I also spoke with some people about my age who had surgery and were doing fine.

Between the doctors and the patients I was feeling more encouraged, however I still had nagging doubts. I disagreed with the premise that this illness could not be cured and would only get worse instead of better. I also wondered why if this illness responded to anti-biotics and pro-biotics, how it could not be an infection. Then I saw an article about Fecal Transplant being used for Colitis caused by Clostridium Difficile bacteria. This was encouraging, however there was no mention of it being used to treat Ulcerative Colitis. At the same time, the colorectal surgeon told me my blood albumin levels were low and that I should take meal replacement shakes such as Ensure. No doctor had ever told me that my blood protein levels were low before. I started taking Muscle Milk shakes every day and weaned off Prednisone a month before the surgery date. Once again I doubted the surgery. Why should I make myself sick by having surgery, when I am currently not losing blood and my ene rgy has come back again?

Then 3 days before the surgery date, my Mom handed me a print out of the Wikipedia article on Ulcerative Colitis and there was a link to an article by Dr. Barody about successfully using Fecal Transplant for Ulcerative Colitis. This floored me, Wikipedia hadn’t been created when I was diagnosed and I thought my doctors and I knew it all. I had stopped looking for alternatives and bought into the whole notion of the disease not being curable. I stayed up all night reading and researching as much as I could. This seemed to me like much more than hope.

I told the colorectal surgeon and he tried to scare me “it will only get worse,” “prednisone will cause your bones to crumble and possibly diabetes,” “you could get colon cancer, “the tissue in my rectum was ‘burned out’ so that it can’t possibly recover” and more. But he couldn’t refute the facts of the study. I said why not, bacteria can cause stomach ulcers, traveler’s diarrhea, even c. diff Colitis, and my case has responded to anti-biotics and pro-biotics on numerous occasions.

So I walked away from that doctors appointment and immediately started looking for doctors that would be willing to do this procedure. I was able to make appointments with leading doctors in the U.S. including Lawrence Brandt and Colleen Kelly. These doctors were willing to give it a shot for my case of Ulcerative Colitis, however I would have to wait since they were booked for months. Finally I decided to do it myself after reading a study by Dr. Michael Silverman that low volume fecal enemas that were administered at home were just as effective as ones done in a hospital. I also talked to someone who successfully used Fecal enemas / transplants to “cure” her son. Once again this was a huge mind shift for me, “cured, really?!” After so many years of struggle that I was told was futile, such that I tried to avoid facing reality, there was something I could do.

So I decided to do it myself. I recruited a friend of mine and asked him to be my roommate. Tests for blood work and stool would have cost me over $1000 and I learned a lab would not accept a test unless prescribed by a doctor. However I was not going to let anything stop me now. I saw this as an epic battle an all-out if not almost reckless charge where nothing was going to stand in my way. I got a new job, new apartment and I started the fecal transplants at home. I then continued every day for 5 weeks, determined to keep going until all symptoms were gone. However along the way I had a couple realizations and found some ways to tweak the process. If I had it to do over again, I think it would have been much easier if I had done some things, especially more things to get an active flare under control and keep inflammation down and limit bowel movements. After 5 weeks, flares had come back and I had to go back to my regular GI doctor for more Prednisone, he was very upset with my renegade self-treatment and insisted I stop them. Although he was a little less upset after talking to Dr. Kelly.

However about 7 weeks after I had started the transplants on a daily basis. I starting taking Bupropion for depression and Silenor to help sleep maintenance. However I also told the doctor, a psychiatrist, that I found that a study had been conducted about Bupropion for Crohn’s Disease however no results had been published. The doctor also said that while Silenor would help for sleep it would also might help my gut. I got home and researched, sure enough Silenor would help. I also learned that it was the same active ingredient that had been in the off-patent anti-depressant drug Doxepin. Apparently a drug company re-patented the drug for sleep maintenance using a slightly lower dosage 3 or 6 mg than the lowest amount used to treat depression (10 mg capsules, with much larger doses often used.) I also went back on Apriso even though it wasn’t covered by my prescription drug plan. For some reason Apriso did seem to help much more than Asacol. I think this might have been because it used 24 hour time release beads instead of 8 hour time release hard tablets that pass through the digestive track.

By the end of the next night, I went from blood and watery stool to a normal bowel movement! Unbelievable! I was so excited that I even took a picture of it in the toilet. In an almost anti-climactic moment I remember saying to myself matter of factly, “it’s gone.”

Six weeks later I had a colonoscopy. It turns out that where I had previously had pan Colitis – inflammation throughout the entire digestive track – I now had patches of health tissue. My GI doc was concerned this might mean the illness had changed course and was now some form of Crohn’s Disease. This didn’t seem possible though, I had already had a capsule endoscopy test (where you swallow the pill with the camera) to determine that the illness was confined to the colon and that I would be a good candidate for surgery. When I looked at the images myself I came to a different conclusion – the illness was resolving itself. By the start of December I stopped taking Apriso with only a mild return of occasional diarrhea for a week or two, but no blood, then I stopped Doxepin / Silenor. Then I switched Bupropion immediate release to extended release then off it, then on again as winter approached this year.

I also found that taking Valerian root extract has helped me have much more firm stool as well as being helpful for me to get to sleep. I think the calming effect of the herbal supplement is what is helping me in this case. So now over 18 months since my last Fecal Transplant I am healthy with better bowel habits than I had before I ever became sick with Colitis. I am so grateful that I found out about this, and I am so happy that I was willing to take responsibility and make the best decisions for myself rather than trying to make others happy. It is my firm belief that many people with Ulcerative Colitis and possibly Crohn’s Disease are un-necessarily having life-altering surgery and dealing with potentially life-threatening drug side effects when a cheap, effective and safe cure is available.

Since that time I have made it my mission to tell as many people as possible.

Colitis Medications:

Fecal transplant combined with Prednisone, Apriso and the anti-depressants Bupropion and a very low dose of Doxepin (Silenor) helped bring about a lasting cure, a sustained remission without the use of drugs when the only other treatment option doctors gave me was surgery.

Otherwise throughout the course of my case of Ulcerative Colitis I responded to anti-biotics including Cipro and Vancomycin. This was in spite of the fact that stool tests did not reveal the presence of Clostridium Difficile bacteria or any other known pathogens. However these drugs did not offer a permanent cure and Cipro was not as effective the second time I tried it, I never tried Vancomycin a second time.

Otherwise Prednisone was effective for dealing with flares. Taking pre-digested protein shakes (I used Muscle Milk) helped restore the effectiveness of Prednisone after it had previously lost effectiveness.

Apriso (24 hour time-release beads) was the most effective form of mesalamine for me along with suppositories and enemas.

Remicade at the highest dosage level was sometimes effective for a few days to a week, however wore off long before the next scheduled dose 4 weeks later. In 8 months of treatment it also was a contributing factor to 2 different secondary infections that resulted in hospitalization.

written by Michael Hurst

( Michael’s blog: http://fecaltransplant.org/ )

submitted in the colitis venting area









118 Responses to Fecal Transplants Cured My Case of Ulcerative Colitis

  1. bev February 25, 2013 at 2:44 pm #

    Accutane! Sorry, first of all…Hi Michael…

    I, too, took the dreaded accutane four different times during the early and mid 90’s. Back then, there was no info on how accutane use could cause UC!

    That, along with alot of antibiotic use as a very young child, due to tonsilitis, is what has cause me to get UC, I am positive!

    I am so glad that you were skeptical about what the doctors were telling you early on…me too! I do not buy that UC can’t be cured, or managed, and I do not buy that it causes cancer, and I do not buy that the only way out is colon removal! RIDICULOUS!! Good on you, Michael…and you are wise beyond your years, at only half my age.

    So little seems to be known about the cause of and any cure for UC, that it is almost impossible to trust or believe anything the doctors tell us. For instance…I was on asacol for 14 years straight because I ‘HAD’ to be on some maintenance drug…and it made me even sicker than I already was…sheesh. According to my doctor, it was the UC that was making me feel so ill, not the drug…fast forward to now, been off all meds for almost a whole year now, just on a good probiotic and L-glutamine with NO UC symtoms at all any more…hmmm.

    I too wanted to try the fecal transplant, and was waiting for a phone call from a doctor who does them, but he never did call me. That was over a year ago. I’m not sure why the call bever came, but I am in remission thanks to taking control of my own health and ditching the doctors.
    I so believe in fecal transplans. I have heard recently that there has been a chemical fecal transplant developed…no smell or anything, that they are testing like crazy…and it is working!! Change is coming…

    Anyway, Michael…yours is one of the best posts I’ve read on this site! There IS hope for UCers…in a natural form, instead of all of the harsh merry-go-round of drugs…it’s just around the corner. In the meantime, we all have to DEMAND better treatment, more natural treatments…tell our doctors, NO, I do not want to hurt my body any further with any of those possibly harmful UC medications!!

    Bev
    :)

    • PeterNZ February 26, 2013 at 5:04 am #

      Nice one Bevvy!

      • bev February 26, 2013 at 8:58 am #

        Cheers
        :)

    • Holly in Virginia
      Holly February 26, 2013 at 8:20 am #

      I just had to comment on your icon. Love George and Pattie!

      • bev February 26, 2013 at 8:56 am #

        I know Holly…right?

        I’m a huge George Harrison fan…Beatles too of course… George and Patti…they were such a couple! The good old days…lol

    • JM October 19, 2013 at 2:29 pm #

      Bev,

      What brand of l-glutamine do you take, how do you take it, and what’s the dosage? Did you notice any changes in BM’s after you started taking it. Thanks in advance!

      • bev October 20, 2013 at 8:25 am #

        Hi JM,

        I take North Coast Naturals fermented powdered unflavored L-glutamine. I take it about an hour before lunch, on an empty stomach, with a couple tablespoons of unsweetened cranberry juice (enough juice to mix it into), but any juice will do. You can take it in water as well, but I don’t really like the taste of it.

        When I first started taking it, I took two or three scoops (the scoop is included right in the plastic tub of it), but now I only take one. You can take up to eight scoops per day, I believe. I had no BM issues with it, mind you I never did take the higher or highest dose. I never get constipated, no matter what, but I have heard others have from L-glutamine. It does wonders for the bleeding because it heals the ulcers on the colon wall.

        Hope I answered all of your questions!

        Cheers,
        Bev
        :)

        • JM October 20, 2013 at 10:33 am #

          Thanks so much for the info, Bev. Really appreciate it. I came across this brand when I was researching fermented l-glutamine products. Helps to know that it worked for you.

          • bev October 20, 2013 at 10:58 am #

            Anytime JM! Hope it works just as well for you :)

  2. Lynne February 25, 2013 at 6:24 pm #

    Michael,

    I’m so glad you’re better. I believe your story gives us all something to think about. The initial thought of fecal transplant is, well … unpleasant. But, I understand the concept and it does make sense. It is wonderful to consider that something exists which may actually cure UC. Thank you for giving us your encouraging story. :)

    lynne

  3. joanna February 25, 2013 at 8:56 pm #

    hey michael. just wanted to say hi and so glad you are still in remission!!

    i was just in the hospital with c diff and know if it comes back again, i have to try fecal transplant again. i think it would knock it out better than the antibiotics.

    your advice a while ago really helped me the first time around with the FTs even though they didn’t work. i’m sure i’d use a different donor if i had to do it again. i’m definitely over the grossness factor though even if others say it’s nasty.

  4. Magnus February 26, 2013 at 4:01 am #

    This is really exciting stuff. I am a medical student, and have spent alot of time reading about the microbiota and its role in UC patogenesis. I firmly believe that probiotics or fecal transplants is the way to go!

  5. PeterNZ February 26, 2013 at 5:01 am #

    Good for you Tiger!
    I’m a little confused, however, as you seemed to be taking loads of stuff at the same time and then saying it was the poop. The way I read your tale is that the poop did nothing (in fact you had flares while “taking” it) for 7 weeks UNTIL you started taking Prednisone, Bupropion, Silenor, and Apriso and THEN the symptoms went away? A few questions if you wouldn’t mind?

    Would you consider that perhaps the other stuff had something to do with it?

    How much Pred did you start with at 7 weeks?

    Did you wean off the Pred slowly?

    Did you do anything / introduce anything else around this time too?

    What is “Kickball”?

    They have me gobbling up Methotrexate now to control my UC but I reckon gobbling sleeping pills, anti-depressants, and gin and tonics would be more fun and beneficial to my inner artist….

    Thanks and good luck,
    Peter

    • joanna February 26, 2013 at 10:00 am #

      hey peter. i remember when i spoke to michael last he said the bupropion and muscle milk made the biggest difference although he does think repopulating his gut was a good idea. i have thought about trying bupropion since my meds haven’t helped at all.

    • Michael Hurst
      Michael K Hurst March 4, 2013 at 2:50 pm #

      Hi Peter,

      Thanks for the kudos, allow me to clarify. From what I have read Borody’s patients took Prednisone for up to 6 weeks after doing the fecal transplants. In my case I had been off Prednisone for several months before starting the FTs. I also didn’t have access to anti-biotics and ran out of Apriso because I could not afford anymore. While most previous cases I had heard involved both pre-treating with a course of anti-biotics and taking Prednisone at the same time I did not.

      I am convinced the poop definitely played the primary role because I am now not taking any of the drugs and my good health with lack of symptoms continues. I don’t know of any cases where someone just took some drugs and then it went away into a sustained remission without continuing to take drugs or continue a restrictive diet. On that note, foods that appeared to trigger diarrhea and urgent muscle spasms, yet now do not cause those problems. I believe this may be because the bacteria in the gut or the healed intestinal lining is now able to handle these foods.

      Yes, I do believe the drugs and the protein supplements were very important to the extent that they worked to reduce inflammation, calm the gut and help heal the intestinal lining. I think that the underlying infection / bacterial imbalance and the symptoms of diarrhea, and urgent cramps create an interdependent cycle of inflammation.

      At 7 weeks I started tapering from 30 mg to 0 in about 10 days, a much more rapid taper than my standard 5 mg per week regiment, however this time I had only been on for a little less than two weeks. Part of the reason for the more rapid taper was my doctor refused to prescribe anymore Prednisone to me and I wanted to have some taper instead of drop cold-turkey. I also had been on less than a month this time around and as I understand this is not enough time for the adrenal glands to have shut down productions of adrenaline, therefore a taper is not necessary to gradually restart adrenaline production.

      The same day I started by tapering from 30 down to 20 mg I started Bupropion 100 mg tablets 3 times a day and Silenor at night and re-started Apriso capsules once a day. I intermittently did some Canasa suppositories as well, but not every night.

      In answer to other questions. Kickball is a sport. In Washington, DC there are several recreational social sports leagues for adults, especially singles in their 20s and into their 30s. Since their are a lot of people constantly moving in and out of this area these have become very popular here.

      Interesting you should mention gin and tonics, I like them :). However they didn’t always like me while I was ill. While I did not always exercise such restraint I found limiting carbonated beverages including soft drinks and beer to be helpful which seemed to cause bloating and trigger some urgency. Limited amounts of hard liquor and wine didn’t seem to be as bad, however I think they could have been an irritant so I would recommend limiting them.

      As for an inner artist, the drugs I was prescribed Bupropion and Silenor (a low dose of the tri-cyclic anti-depressant drug Doxepin) are considered to be non-addictive drugs. I think depression and / or anxiety can both be causes of the symptoms related to this illness and even triggers such that diarrhea contributes to the disruption of gut flora which triggers an overgrowth of the “bad” bacteria.

      • Peter March 13, 2013 at 2:10 am #

        Cheers mate

        • Sharon June 25, 2013 at 1:58 pm #

          A little late to this thread but did want to say that I have had UC for 23 years and have never been on any type of restrictive diet while in remission and never took maintenance drugs. I was able to use Sulfasalizine(Azulfidine) and Asacol at the highest dosages to attain full remission almost every time I flared. I probably used prednisone 4 or 5 times in 20 years and was only hospitalized one time during those years. Things have been different for the last 3 years since I can no longer take ASA drugs but before that I absolutely was in full remission for extended periods of time (sometimes years) by doing nothing but short stints of high dosages. I only point his out since you have never heard of such a case :)

          • Ana June 26, 2013 at 1:07 am #

            Thank you Sharon, for sharing. Every bit of information is important for this jigsaw puzzle. How much of your colon is affected? It does make sense though to eat low fiber foods and cooked veggies when you’re flaring. Another approach I read about was to start off with elemental, predigesting drinks…. So what do you do to control the beast? As I recall, you are not doing any meds, right?
            Ana

  6. Lisa OH
    Lisa Kapp February 26, 2013 at 6:21 am #

    I’ve had Cdiff 4 times. The next time I get it, my GI has (finally) agreed to do a FMT, thank God. So glad to hear of your success. Thanks for sharing your story!

    • joanna February 26, 2013 at 9:58 am #

      hey lisa. what have you been taking to get rid of they c diff? i just finished my round of vancomycin and am getting stool tests in a few days to see if it’s gone. i also started probiotics so i hope it helps.

      • Lisa OH
        Lisa Kapp February 26, 2013 at 11:38 am #

        Hi Joanna. I finished a month-long course of a stronger dosage of Vaco than I’ve had before (250 4x a day, maybe?). I also take Lactobacillus and Florastor (probiotic that has saccharomyces in it) 3x/day. What is interesting is that I had stopped taking my probiotics (a number of reasons – in the hospital for surgery & didn’t have access, then I just plain forgot to take it) a couple of weeks before the most recent Cdiff recurrence….I am NOT optimistic that this last course of Vaco will keep the Cdiff away. I am optimisic that the Fecal transplant will work the next time it comes around…

        • joanna February 26, 2013 at 2:02 pm #

          i hope it stays away for you. i’ve heard it can be really relentless. i talked to a few doctors at the hospital about FT and they said only as a last resort if i fail antibiotics multiple times. i don’t get why it can’t be a first resort type of thing. i mean, yeah it’s gross, but it’ll probably work better than the antibiotics in the long run.

          i’ve done so many FTs at home already so if my c diff comes back, i’ll just do it at home again. it’s no use fighting with doctors all the time on it, begging them to help me. they just don’t budge when they think they’re right or if they can give you pills- prescriptions are way easier to hand out than helping a patient.

          • Michael Hurst
            Michael K Hurst March 4, 2013 at 2:07 pm #

            Hi Joanna,

            I do believe it was primarily the fecal transplant which made this work, however I believe that Bupropion helped as an anti-inflammatory. The results from trying that were immediate just like those I saw in another discussion thread and in an article published by doctors in Journal of Gastroenterology. Other drugs like Silenor (Doxepin) may have helped by calming the gut muscles spasms, giving the intestinal lining a chance to heal without being re-aggravated, it might also have helped the new bacteria to finish the colonization process faster. Muscle Milke was helpful because your body needs protein to heal damaged tissue. The colo-rectal surgeon told me that my blood albumin levels were low so I needed lots of protein, Muscle Milk and other body builders protein shakes has much higher levels of protein than something like Ensure.

            Fecal Transplant should be the first-line treatment for c. diff because anti-biotics inevitably fail to prevent re-occurrences a significant amount of the time in this illness. This is probably because c. diff is found in small quantities in healthy stool in many people, however in these people there are other bacteria that keep it in check. So killing all of it off is not the solution, finding a way to contain and balance c. diff may be the best way.

            C. diff is not to be taken lightly, a good friend of mine’s father died of complications related to c. diff Colitis two weeks ago. This was after several rounds of anti-biotics had failed to prevent a re-occurrence. I told her about the fecal transplants back when I was first doing them, in fact she had even been over at my house a few times while I was lying around retaining the enemas. Even though she repeatedly told the doctors and her father about this they never went through with it. It’s too bad this had to happen since he could have done something else that would have worked.

            I also hope others realize that waiting to see if anti-biotics will somehow work to permanently cure c. diff, especially cases where it has re-occurred after anti-biotics have failed before, is not just foolish, wishful thinking, it is taking an un-necessary gamble with your life.

        • Mike from Ohio
          Mike H February 28, 2013 at 11:18 pm #

          Hi Lisa,
          You had your colon removed so why are you getting C diff. It is very rare for C Diff to attack the small intestine which is what your J Pouch is made of. You may be treating something entirely different than C diff which is why it keeps coming back. I was reading that there are other infections that can cause a positive C diff test and according to the Mayo Clinic there is a new starin that is resistent to antibiotics. I am now 8 weeks post colon removal and feeling pretty darn good wish I would have taken it out sooner. Is your J Pouch working well other than your frequent infections?

          Mike

  7. uma February 26, 2013 at 6:54 am #

    Great story. UC is about bacteria. Why wont the doctors accept this.

  8. Nikki February 26, 2013 at 7:18 am #

    Great story Michael. I definitely would try fecal transplants before considering surgery.Thank you for your post.

  9. rjw February 26, 2013 at 10:01 am #

    I think it is great what you have accomplished. I have been researching FMT for several weeks now. Apparently, FMT works for 90 plus percent of the patients who do FMT and are diagnosed with C-Diff. You were tested for C-Diff and it was negative. Has anyone read what percent of patients with UC or CD who test negative for C-Diff have successful remission of their condition? On Adam’s site he interviews two doctors who do FMT for non C-Diff UC. Their percents of success are much lower for then the C-Diff percents. I am a big believer for FMT but currently there is something missing in my expectation of success. Anyone have any more information on the subject?

    • Angela February 26, 2013 at 12:40 pm #

      Hi RJW,

      I browsed around and the reason you haven’t seen any hard data on success rates for FMT in IBD patients is because the clinical trials are still currently being conducted. Here’s an article though that talks about some preliminary results you might find helpful.

      http://www.medscape.com/viewarticle/770009

      Also, it looks like the University of Chicago is currently working on a study.

      http://girf.org/UserFiles/A_New_Hope.pdf

      The percentage of non-C.Diff TMF patients being lower than C.Diff patients is most likely because not everyone’s UC is caused by the same issue.

      Glad to hear you’re doing well Michael! You’re on the forefront of medical science!

      Angela

      • Michael Hurst
        Michael K Hurst March 4, 2013 at 1:47 pm #

        Thank you Angela. I do believe that Colitis and/ or Crohn’s Disease and IBS may be caused by different bacteria. I also think that it might be caused by a form of bacteria that reproduces from spores. The key with this kind of bacteria is to have a strong enough level of transplanted bacteria available for subsequent flares or bacterial bloom cycles to kill them off before they can produce more spores for the next round. I like to think of this as bacterial whack-a-mole. If you whack enough of the bacteria away before they can produce more spores for next time, then within a few cycles they will be all gone or within a range that can be controlled by the existing bacterial colony.

    • vic May 12, 2013 at 7:11 pm #

      I have UC and recently underwent an FMT to treat it. i had high hopes and expected to come out feeling like a new man. but that turned out not to be the case.
      i went all out and had 4 procedures done in 5 days. 1 through colonoscope then a day off followed by 3 sigmoid infusions.
      But it did not work for me. i was in a mild-moderate flare going half way up my left side from before which the dr said made it a bit difficult for the infusion to stick in that area but above that was fine and it held well. at the end of the week he said to give the new healthy bacteria time colonize the inflamed area and all should be fine.
      i ended up with one of the worst flares in years. i was able to tell it was limited to the lower part of my colon but it was much more intense than anything ive had. it is now 2 and half weeks after the FMT and i am still battling this flare. not even 40mg of prednisone + uceris + azasan is keeping it at bay (though its not as bad now as it was a week ago, i’m still far from good).
      but all this got me thinking that my case might not be a flora issue, but an immune issue. i dont know if there is a way to test your Treg cells, but i feel i’m severly lacking them.

      • massybird June 21, 2013 at 11:07 am #

        Vic,

        How are you making out now? I had a similar experience and I am going through one of the worst flares right now that 40mg of Prednisone is not working very well, whereas 20mg in the past did the trick. Hope you’re well.

        • Michael Hurst
          MichaelKHurst June 21, 2013 at 11:36 am #

          I am also curious how you are doing Vic. Also did you treat with a course of anti-biotics like Cipro or Vancomycin before doing the fecal transplants?

          I think that somehow the bacteria and inflamation are both related in some ways and separate in others. For example my initial flare of Ulcerative Colitis in 1999 resisted even 60 mg of Prednisone and Asacol. Finally the addition of Cipro got it under control. Other times Prednisone alone was enough to successfully treat a flare.

          However I discovered that if Prednisone worked it would work almost immediately. Later on I discovered protein shakes were effective when Prednisone was no longer working. Then after doing the fecal transplants when Prednisone was not entirely working to stop a flare I switched to Bupropion which some studies indicate is a TNF-a inhibitor, and that finally drove the illness into remission.

          • vic June 21, 2013 at 1:36 pm #

            Hey Michael,

            i was not treated with any antibiotics before. just a good colon cleansing.

            I agree with you that both the bacteria and immune system are independent but also play off each other at times. but now i’m starting to think that there’s a 3rd key player involved- the mucosal lining. if there is an active immune response going on and the mucosal lining is thinned out and then you introduce more bacteria, its just going to induce more of an attack response i think weather the bacteria is good or bad. the dr who performed the FMT told me he had one patient w UC who did a FMT while in a mild flare and while he benefited initially, it didnt last long. he came back and tried it again once he was in full remission w meds and was able to get off the meds and stay well for over a year).
            i thought about antibiotics when i realized the FMT backfired, but we (my drs and i) never pulled the trigger. I’m doing better now (see my reply to massybird for more info) and am about to start tapering the prednisone. i plan to have some more testing done to rule out certain things- endoscopy/ pill cam to rule out crohns, and some vitamin and blood testing to make sure i’m not deficient in anything. lets see how things go- we’re taking it slowly now that i’m feeling better.
            if the it starts to act up again i’m gunna try to get into some clinical trials that are going on not too far from me.

        • vic June 21, 2013 at 1:15 pm #

          Massybird,

          I am doing much better now. i am still on the prednisone and azasan but off the uceris (but added vit D and folic acid). i just got the green light from my dr to reduce my prednisone from 40 to 30mg. but like you for the longest time 40mg wasnt doing much when in the past less did the trick. I dont know if what i’m about to say is ok, but i’m gunna say it anyway. The thing that made the difference (huge difference) was a little bit of pot. i was never a smoker (rare occasion) but had some left over from a former roommate (thanks ss). anywho, i was awoken one night at 2am with really bad abdominal pains and i couldnt fall back to sleep. i didnt want to take tylenol cuz i know its hard on the liver and i was suspecting i might be having some bile issues as well. so i decided to lite one up and see if it helped w the pain. 20 min later the pain was greatly reduced and i was much more relaxed and able to fall back to sleep. the next day i realized that my gut was muuuch calmer. 2 nights later i the same thing- awoken w pain, lit one one up, back to sleep, next day much better. so i started to some research and realized that many pple use it for IBD. so i dug deeper to find out how it works and it made sense to me, so i started w a little bit everyday. now things get even more interesting- before the pot, i didnt see much effects from the prednisone, good or bad. but after i started i began to see both- reduced inflammation, but also some of the bad stuff (hair growth, a bit of back acne, waking up at 3 or 4 am). so i think the pot helped my body to absorb the prednisone (it helps w cell communication as well as being an anti- inflammatory, and anti-spasmatic) . i told my dr and he was fine w it. i’m still trying to fine tune and figure some things out (optimal THC and CBD amounts, etc).

          • bev June 21, 2013 at 2:51 pm #

            Lol…say it anyway!

            Pot can actually help in a lot of maladies in different ways. I’m not a smoker of it myself, but if it helps, for goodness sake, PARTAKE!!

            :)

  10. rjw February 26, 2013 at 10:21 am #

    Michael,

    If I am remembering correctly you used your roommates fecal stool when you did it at home? If true did you have blood type tested against your blood type or did you just wing it. Apparently one doctor made mention that he believes fecal matter takes hold in people with acceptable blood types? Thanks

    • Michael Hurst
      Michael K Hurst March 4, 2013 at 1:19 pm #

      @rjw I did not do anything to match with blood type. Nor have I read anything suggesting that this was necessary and I am not aware of any living blood cells being present in healthy stool. One of the conditions for a healthy donor is that they do not have blood in their stool nor blood-born pathogens, nor active bacterial infections in their digestive track.

  11. sukhi February 27, 2013 at 2:33 pm #

    Congrats on your remission! I would think the anti depressants had a major role to play in your remission – they have been studied and are known to have a positive effect in IBD?
    FT is promising and for some it’s a cure – for others a part of the puzzle.

  12. Mike from Ohio
    Mike H February 28, 2013 at 11:39 pm #

    Remember you are in remission not cured. That new bacteria you have from your fecal transplant can be destroyed by UC when it decides to flare up again in the future. I too thought I had mine cured. I went for 5 years with normal bowel movements and no issues at all, then I hit a short period of stress in my life and my disease came back instantly over night resulting to a path that damn near killed me. I am not trying to be a negative Nancy just trying to make sure that people who find remission do not take it for granted. I am 8 weeks post colon removal and feel great. Life without a colon is not as bad or scary as most people think. It is something I wish I would have done years ago.

    • Michael Hurst
      Michael K Hurst March 4, 2013 at 1:41 pm #

      I am glad that things are working out for you now and sorry that your illness came back and ended in surgery. Did you do Fecal Transplants for Ulcerative Colitis as well and then this came back?

      Maybe you weren’t cured but I am, but no I will not take this for granted. A new bacterial colony has been established and the old bacteria is either completely gone or kept balanced at levels that do not cause harm. I hit it with Fecal Transplants for over 5 weeks and if something like this ever were to come back I would hit it again, even harder. What I won’t ever do again it and give up. I also know that I have to manage the impact of my state of mind on my body and also nutrition levels.

      Recall some people in Borody’s article about 6 Ulcerative Colitis patients that he treated with Fecal Transplant had been symptoms free for 13 years or longer with no maintenance therapies and no remaining signs of illlness. To paraphrase his words absent any signs that the illness is there and absent any renewed illness matching the previous conditions, the patient can be said to be cured.

      Part of what will make you healthy is the mindset that you bring to this. Are you going to suffer as a victim but try to survive or are you going to go on the offensive and beat it. Being told the illness was incurable and can not be resolved within any time frame was enough to make me want give up and I was going to have surgery. Fortunately I was willing to disregard what the doctors told me was supposed to be true and prove them wrong. Remember this has been beaten by some, the key is to get the bacterial infection completely subdued, this might take fighting though multiple rounds depending on the kind of bacteria involved. The best advice I received was to keep going and I was prepared to go indefinitely.

      • bev March 4, 2013 at 4:27 pm #

        Well said Michael K!!

        I, too, refuse to believe that colon removal is imminent and the only cure for UC. No way. Ridiculous. I am so skeptical about what doctors tell me about this so called ‘disease’, it’s not even funny.

        I was told I’d need meds FOREVER. Well, with a good probiotic and L-glutamine, I went off of the meds I had been on for 14 straight years, and I’ve never felt better. The meds were killing me. Making me feel worse and who only knows what the long term effects will be. Damn the doctors anyway. Now, I would like to have the fecal transplant to hopefully eradicate any signs of UC. I am a firm believer in that therapy and believe that it is INDEED the cure.

        I fear that we have all been lied to about UC for a long long time…maybe it’s a monetary thing…I hate to think that to be true, but what do we know? Actually, perhaps more than we think we do…more than the doctors do…really makes you wonder. It actually pains me deeply to think of all of the people with UC who’ve had their colons removed…so drastic and final…

        Good on you! I want this therapy and I am going to work and strive to get what I want.

        Cheers, and again, thank you for this fabulous post!!

        Bev
        :)

        • Mike from Ohio
          Mike H March 4, 2013 at 9:33 pm #

          Bev,
          I am sorry to hear that you have such bad doctors. Not all doctors are that way. I do credit my GI and surgeon for saving my life as the UC had total control and had put me on my death bed in a matter of a few short months after being in remission for years. Doctors will not suggest the fecal transplants yet because there has not been a large enough clinical study performed yet thusinsurance will not cover them in health institutions. I hope it does turn out to be the next big thing for UCers but I will be an advocate of colon removal for sufferers that have tried almost everything and are losing the battle because I know how well it has worked me thus far. I have not felt this good in years and hopefully it stays this way.

          Mike

          • bev March 5, 2013 at 9:30 am #

            Yes, Mike…good point. I know there are some good docs out there…..just not mine!

            I tend to go overboard on this subject… I have to remember that I gotta pull my horns in a bit sometimes…lol

      • bev March 4, 2013 at 4:28 pm #

        Oh…and the mind set and victim thing…yep…it’s within all of us to help ourselves get better!!

        Nobody is going to do it for us.

        I sound like a preacher…so sorry…I just get so fired up about all of this:)

        • Michael Hurst
          Michael K Hurst March 4, 2013 at 4:53 pm #

          Well said Bev! Yes, it is hard for me not to turn into a preacher on this, but a huge realization I had was part of what was holding me back was that I had an inner conflict about getting better. On the one hand this seemed hard to believe, how could I possibly not want to get better with every part of my being? Then I realized, in some respects I was using it as an excuse and a way to shirk taking full responsibility for my life. That was also part of what was contributing to having depression as well, a feeling that I couldn’t have any control over the outcome. Then I realized that I could have some impact and it was kind of scary. It was also painful to realize that the very same doctors I had come to accept as more of an authority over my body than me, were ignorant of the fecal transplant procedure even though it had appeared in the Journal of Gastroenterology. Then when I brought it up they still weren’t willing to give it a shot or made excuses that were not even based on actual facts. I’m found this resistance to be true for many people I have talked to who wanted to try this as well.

          I also hate it to be true that at least some doctors are not pursuing this as much as they could because it does not stand to be a benefit to them monetarily. However it is true that people don’t need doctors to effectively do the fecal transplants / mix and administer the enemas to beat this illness. And if people who were previously considered to be chronically ill get better to where they don’t need on-going medical care the business model for gastroenterologists and makers of pharmaceutical drugs in this area will take a big hit.

          • bev March 4, 2013 at 5:11 pm #

            Wow. You know, it is all about taking control of ourselves, and yes, we do sometimes shirk that. Well, we’ve finally fixed that, haven’t we?!

            I am considered an obstinate ‘problem’ sort of patient, I’m sure, at my doctor’s office. I don’t really buy anything he tells me after all I’ve been through with him. He basically did not believe that I could possibly be in remission just on probiotics, and not on any more meds. He was quite perturbed when I told him that I had decided that there would be no more meds for this girl. He continues to urge me to take some sort of UC medication…it’s unbelievable, really. I wish we could trade places and he could see how really irrational and inane he is being! When I brought up fecal transplants to both he and my specialist, they both said they wouldd have no part of that…that it was UNETHICAL!! I secretly can’t wait for the day (and it’s coming soon) when this is the WAY that UC, c-diff, and many other things will be cured. There is even a ‘chemically’ made fecal transplant now (which is no doubt full of probiotics), with no smell or donor needed! They have been being tested on c-diff and UC patients with great success. I saw it on the national news a couple of weeks ago! I delight in my doctors eating their words…look what I’ve become…so mean…lol…

            Like you said…sometimes the transplants need to be done again and again, until all is well and cured. Why can’t anyone get that? Just because it does not work one time, does not mean taht it will not work eventually.

            I will stop now!

            :)

          • Angela March 4, 2013 at 5:27 pm #

            I don’t believe that’s the reason doctors don’t pursue alternate therapies (drug companies more likely) but not doctors. Honestly malpractice insurance is the real reason behind it. In today’s world everyone wants to sue about everything. And given there hasn’t been “enough” clinical evidence yet for fecal transplants and UC they’re sometimes running high risks recommending it. They can lose their medical licenses from a lawsuit. And unfortunately, there isn’t a lot of money funding IBD research (it’s all going to the “key players” like cancer and heart disease).

            When they run a clinical study, its extremely controlled, it has to be repeatable and has to be tried against a control group. Cases like yours where you were also on bupropion and prednisone at the same time wouldn’t count for a reliable clinical study to the FDA as its really hard scientifically to tell what actually put you into remission.

      • Mike from Ohio
        Mike H March 4, 2013 at 9:21 pm #

        Michael
        I don’t have a choice but to be as positive as I can be about this. I have a wonderful family of five that I have to support for sometime yet and that alone keeps me going everyday. That and the fact that I am a spiritual person that believes that the Lord will not put anything on our shoulders that we cannot handle and it is also true that Jesus carry’s the load of our yoke in order to lessen our burden as long as we believe and follow his word. I do hope you stay healthy and prosper. I did try everything except for the fecal transplant. Never really heard of it until recently. Not sure I would have tried it.

        Mike

        • Michael Hurst
          Michael K Hurst March 5, 2013 at 5:13 pm #

          Mike H,

          I totally agree with you about being positive and it sounds like you have done a great job handling this and I hope it continues to work well for you. Certainly if I had not heard of this at the last minute before my surgery date and then chose to go against what my doctors wanted I would have done the same.

          Part of what really got me was that this was not even presented to me as a choice when the only other option given to me by the doctors was surgery. My GI doctor was apparently not even aware of FTs even though the article had been published in the Journal of Gastroenterology 8 years before. After reading as many available studies as I could I realized that there was essentially no risk of irreversible or life-threatening impacts if done with a healthy donor. However some of the prescribed treatments had already had severe side-effects for me including anti-biotic resistant infections that were potentially life-threatening. and lead to being hospitalized for 4 days.

          Ironically the colo-rectal surgeon ended up playing a key role in helping me get better without surgery by telling me that I did not have adequate protein in my blood to recover from the trauma of surgery, so I should take meal replacement shakes to boost that level prior to attempting surgery. It turns out I also didn’t have enough protein to repair damage from ulceration, but as I boosted the protein levels I recovered from the flare and successfully tapered off Prednisone a month before the surgery date. I wondered could it really be true that my colon was irreversibly damaged if I could successfully taper off Prednisone? If body tissue can recover from surgery why can’t it recover from the effects of chronic ulceration if continued ulceration is stopped for a sustained period of time?

          Once I realized that the worst thing that could happen was that the treatment didn’t work and I was back to attempting surgery, I really had nothing to lose. It did take some time to fully recover, but I did and like you I am deeply grateful for good health even if by different means.

      • Ana August 22, 2013 at 1:12 am #

        Hi Michael and all,
        We are back from Italy, which we managed without a break down.
        Today my daughter started FMT at home from a friend donor (who was tested). My daughter is still on Ucerus ( hard to saynif it has helped her, definitely not a miracle drug, but no your typical prednisone side effects either) and 5 Asacol a day. The past week was the best one– 3 Bm, and 1-2 at night with no blood, and a little more formed. So we thought that the time was right to start FMT, while she is still on Ucerus. Watched your video a few times before starting it ( although got a smaller blender and a strainer), as well as read the results of the Michigan FMT study on children. So she did about 120 ml of the solution ( emptied a fleet disposable enema, and refilled it with slurry of fecal matter and saline), rather slowly (the children’s study did 4×60 ml over one hour)–120 ml over an hour. She held it for 4 hours, no almost no discomfort or gases ( we asked our donor to follow a similar diet, with fish and eggs, veggies, with no dairy, no red meat or white meat, no gluten). She did get a very slight fever (37.1, I guess its about 98.9), so we gave her Tylenol (some kids I the study also developed a s
        Ight fever). I can’t say that we’re seeing progress yet. It’s probably too early… I’m just hoping it won’t get worse, since she was getting better and stronger. So wish us luck and I will keep updating you!
        Sorry if Iosted the comment twice– I wasn’t sure it posted the first time…

        • bev August 22, 2013 at 6:44 am #

          A bit off topic…but I was watching the news last night and freaked out when there was a ‘new’ drug to treat UC and Crohn’s…here is the link…

          http://www.ctvnews.ca/health/new-antibody-could-better-treat-crohn-s-and-colitis-study-1.1420887

          Yes, it’s a drug, but apparently, no side effects…

          • Ana August 22, 2013 at 10:18 am #

            Thank you, Bev. Another tool to fight UC but it seems that med don’t come without side effects. Here’s more info about this drug  “Vedolizumab as Induction and Maintenance Therapy for Ulcerative Colitis” : http://www.takeda.com/news/2013/20130822_5916.html
            Anna

          • bev August 22, 2013 at 12:12 pm #

            I know exactly what you mean, Ana. I do not endorse meds at all…I was really hoping this new ‘breakthrough’ was natural when I was watching this on tv last night…hah…not so again.

            I still maintain that FMTs are the ONLY way to squelch UC….

  13. Mark March 1, 2013 at 7:29 pm #

    For people who do not believe in this being a cure look at this http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/.

    • bev March 4, 2013 at 4:13 pm #

      Wow, wow, wow!!!

      Great link, Mark! What a freaking excellent article on fecal transplants. When is the medical community going to embrace this?????

      I’m walking on air just reading this…

      :)

      • Mark March 7, 2013 at 4:01 pm #

        I don’t know Bev hopefully soon!

      • Ana June 25, 2013 at 12:17 am #

        Hi Bev,
        We actually contacted the research team in Canada who are working on extracting the beneficial bacteria for either a transplant or to be taken in a pill form, it’s really great news and hopefully, in Canada it’s easier to fund this kind of studies. Maybe in a couple of years it will be available? I think the media can really help to keep the public interest going, like it’s been happening this year (there was another article “Microbe Hunters” in the May edition of Smithsonian).
        Ana

        • bev June 25, 2013 at 6:50 am #

          That thrills me to no end, Ana. I knew that this would eventually happen. It’s long over due!

          I still can’t fathom how UC is treated with drugs…that can never really work, if you think about it…UC is bacterial, or lack thereof, at least that’s what I believe, so how can pharmaceuticals ‘cure’ it or even treat it for very long?

          • Michael Hurst
            MichaelKHurst June 25, 2013 at 9:56 am #

            Hi,
            That does sound like an interesting possibility to be able to isolate just the “good” bacteria and I’ll check up on the Smithsonian article. I guess I am a little skeptical about how it can really be determined which bacteria are really needed given the symbiotic nature of a bacterial colony. As I see it there is already an interdependency of bacteria, mucosal healing, control of inflamation and state of mind, which may vary depending on the person and the state of the illness at the time.

            Although in the meantime just putting poop in an enterically-coated capsules and swallowing it would be much easier even than enemas. Here is an article about how this used to be done years ago
            Fecal Transplants in the “Good Old Days” http://schaechter.asmblog.org/schaechter/2013/05/fecal-transplants-in-the-good-old-days.html

          • bev June 25, 2013 at 9:58 am #

            Yes, Michael, I am eagerly anticipating ore on this, as well.

            LOL…it will be a riot when FTs are considered ‘archaic’…

        • Sharon June 26, 2013 at 4:51 am #

          There was no reply button on your other comment to me so I will put it here. Ana, I do currently take Humira. After I got out of the hospital about 3 years ago with a severe reaction to Lialda, I came off of all meds. I was in remission for about a year then flared. I used VSL#3DS and got the flare back into remission. Unfortunately, I flared again about 8-10 months or so later and needed prednisone as well. Unable to get that flare under control and with no other drug options I eventually went onto HUmira. My doctors plan was to get me into “deep remission” for a year and take me off of the Humira. I am trying to wean off of it right now and am still in remission. Before my Lialda incident, short courses of high doses of ASA drugs would put me in remission and I could come off of them and stay in remission for up to 3 years. Sometimes my flares would last less than a month start to finish. Quite frankly, I never really thought much about having UC. Most of my flares were minor and the tougher ones would sideline me for longer but still always responded to prednisone. Now I have even flared on Humira which led me to this website and looking at things I would have never considered before, including FT if I ever needed it.

          • Ana June 26, 2013 at 10:55 pm #

            Hi Sharon,
            I guess we are lucky to have you on this site :). If you could control your flares with Asacol, why did you start taking Lialda?
            Btw, do you know how to start a new thread? I just thought that it might be useful for other folks who are considering steroids to know about this new Uceris steroid drug,nsince it has far fewer side effects than your typical prednisone. After battling our daughter’s flare for over three months, we decided to give it a try to bring her in remission and then do FMT. It goes without saying that we’re continuing on all other supplements we’ve been doing…
            And good luck tapering off Humira!

          • Sharon June 27, 2013 at 6:27 am #

            Ana, I do not know how to start a new thread but I am sure I saw something else on this site about Uceris. I wish I knew how to find things without re-reading the whole thread. As for the Lialda, I was taking 4 Asacol 4 times per day. With 4 kids and a busy lifestyle, I had a hard time remembering to take the meds spaced out correctly. My GI said the Lialda was basically the same drug in a time release version so I could take 4 pills in the morning and they would break down throughout the day equalling the Asacol dose. I don’t have the enzyme in my liver to break down the time release modifier so it built up in my system and eventually began poisoning me.

            I think that if I had a child with UC/Crohns I would definitely try the FT. Best of luck to you on that.

            Sharon

          • Ana June 27, 2013 at 11:01 pm #

            Sharon, likewise, no reply on your comment. How unfortunate about Lialda. How long did it take you and your doctors realize that something was wrong? And it’s probably silly to ask, but I would assume you tried Asacol afterwards but it didn’t help? Was it Asacol HD?
            Sorry to bother you with all these questions…
            Keep stayingmwell,
            Ana

          • Sharon June 28, 2013 at 5:55 am #

            Ana, I was in a tough flare taking the Asacol when we switched to Lialda. I was on 40 mg Pred but upped to 60mg about the same time. I have a whole journal full of the details (could mail you a copy). Basically, the “reaction” mimics a flare. The big difference for me was that my muscles hurt so bad that I could not stand the weight of my body on the bed. My legs ached and I had a bad taste in my mouth. Pred always gives me a bad taste so I thought maybe it was that but I knew something was different. As the toxicity grew, those symptoms got worse quickly. In the hospital, I was in the bathroom over 30 times a day and the smell was so strong it made me nauseous. My labs showed I should be coming out of the flare but I knew I was getting worse. Finally everything metabolized at once and after quite an experience (physically and spiritually) it was over. The next day when my GI figured it out, he told me that I could never take any ASA drugs because my body would possibly react to all of them now and could be life threatening. After a very long weaning from Pred (I was on 125 mg for a week), I took nothing. My next flare I only used the VSL#3DS which worked. The following flare required pred again and ultimately Humira.

            Since we don’t know how to start our own thread, you could email me sharonmac38@gmail.com

  14. Mark March 1, 2013 at 7:32 pm #

    Or the people with Dr barody who remained diease free at a 13 year follow up!

    • bev March 7, 2013 at 4:29 pm #

      yep!

  15. zack March 15, 2013 at 11:24 pm #

    hey MICHAEL :) i was curious as to what you thought about its possible applications for people with celiacs disease. I have heard some promising things about fecal transplants for people with autoimmune diseases as well as Parkinson’s.

    thanks for your reply

    • Michael Hurst
      Michael K Hurst March 18, 2013 at 12:31 pm #

      Hi Zack,

      It seems very possible that intestinal flora could play a role with Celiac Disease and a fecal transplant could potentially be helpful since 70% of your immune system is in your intestines. I know that since I finished doing the fecal transplants over time I seem to be able to eat foods that I once thought were problem foods.

      As for Parkinson’s Disease, once again it could be possible. I haven’t read any research about this, but given the severe impacts of the disease and the lack of permanent, severe side-effects when it is done properly, I think for some motivated people it might be worth giving fecal transplant a shot.

  16. jacob rusyn May 24, 2013 at 5:27 pm #

    Hi Michael Hurst,
    First off, great job on all your helpful responses. I’m a lot like you as far as trying other things and trying to figure things out. Dealt with UC for five years now. Can you guide me to a site or tell me about how to do the FT myself? Thanks,
    Jake

  17. Michael Hurst
    MichaelKHurst May 25, 2013 at 10:09 am #

    Hi Jacob,

    I’ll glad I can be helpful, hopefully as more people do this it will become one of the primary treatment options rather than something you actually have to fight to do yourself.

    I go into a little more detail in the articles on my website http://www.FecalTransplant.org and in my ebook also available through the website. I believe the key to making this work for me was actually a combination of nutrition so that the body had enough material to heal, calming muscle spasms and diarrhea in addition to introducing healthy bacteria from enemas. Otherwise I break down what are essentially some best practices for administering an enema which is what fecal transplants essentially are.

  18. Ben June 7, 2013 at 1:28 pm #

    I too had been suffering from a mild case of UC for 15 years. In the last year I have seen complete remission. I attribute this to being orally exposed to some of my girlfriend’s fecal material (I’ll let you figure out how that happens). So instead of doing an enema, oral ingestion of some fecal bacteria may be easier (and is likely the way humans have gotten these bacteria into their systems for eons). For those where fecal transplant did not work, it is very conceivable that your “donor” did not have the right type of bacteria for you and you may want to try another “donor”. Best of luck.

    • bev November 4, 2013 at 11:54 am #

      Sheesh, Ben…not sure what to say here…whatever works?

      Not something I would try, but thanks(?) for the TMI…

  19. Jenny June 10, 2013 at 8:07 pm #

    Thank you for sharing your story, what an inspiration not giving up! I started doing my own FT at home with an enema tonight for severe SMBO with my very healthy husbands stool. I dont know if it will help but I have tried everything and I am desperate. I noticed I got very bloated after doing it and I am wondering if this could be die off. Did you notice any more bloating after doing the FT?

    • Ana June 23, 2013 at 12:48 am #

      Jenny,
      How are you feeling now? Keep us posted… Good luck!

  20. Michael Hurst
    MichaelKHurst June 11, 2013 at 5:39 pm #

    Hi, I’m glad my experience and possibly website or book has inspired you to take action. First off though I am curious as to how you know that you have Small Intestine Bacterial Overgrowth? Keep in mind fecal transplants using enemas will yield fastest results with conditions affecting the large intestine. For bacteria to get to the small intestine from the large you will need to get the bactetia to colonize the large intestine and make its way through the Illealcecal Canal. This can be done however if the problem really is in the small intestines it might be faster and easier to get the donor bacteria in there from the top down, which unless you have a doctor using a nasal gastric tube means swallowing gelatin capsules containing the “material” you want to get in there. I know this has been done before although I would have to read up on this.

    Bloating was definitely a major symptom for me so Simethicone (generic Gas-x) was definitely my friend. It’s hard to say whether the gas is from bacteria dying off or just decomposition of any undigested fiber or food particles from the donor stool or both and other things. But it is normal.

    • Ana June 22, 2013 at 12:12 pm #

      Michael,
      Your experience and information are invaluable! I posted an earlier comment but I can’t tell if it went through. So here it is again.
      We’re considering FMT for our 15 year old daughter. Our donor tested negative for everything (STD, HIV, hep, parasites/ova, c-dif, etc) but she tested positive for CMV (cytomegalovirus) and EBV (monoNucleosis) antibodies. The test shows that she doesn’t have an active disease but just antibodies due to past infection (over 90% of adults havethe virus). Our GI said that she will be fine as a donor but I still have reservations and fears of transmitting those viruses to my daughter ( which I also read can be problematic in compromised individuals)., since they remain for life. I couldn’t find any information on whether the virus can be transmitted when it’s not active…(also, It might be that our daughter already has it). We know of one case when the donor also tested positive for past infections but was a very successful donor to her little daughter! What are your thoughts about this? Do you know anything about it? I really feel that it FMT is the way for us to go.

      Also, it makes sense what you are saying about albumin levels in your blood for healing. I actually got some plant based protein mix from Whole Foods to mix it into a fruit / coconut milk smoothis for my daughter but she starts burping after drinking it (she’s fine without drinking protein mixed in), and consequently doesn’t want to have it. Any suggestions on the ones you used? Otherwise, her diet includes some fish or / and eggs daily but no red or white meats.

      • Michael Hurst
        MichaelKHurst June 23, 2013 at 1:21 pm #

        Hi Ana,

        I can understand the concern of introducing a new virus to your daughter and
        I’m not an expert on infectious diseases but if 90% of the population has anti-bodies then you are going to be hard-pressed to find a donor without this. If your doctor thinks it is fine, it would follow that he knows that anti-bodies and not a live virus won’t transmit the virus. When I looked up the Wikipedia entry for Epstein-Barr virus it says it is transmittable through saliva and genital secretions (referencing from a research study) but does not mention blood. I wonder if there is even the outside chance of acquiring passive immunity through antibodies if they actually made it into the blood stream, not unlike passive immunity acquired through breast feeding.

        It is also encouraging that you know of a success in a similar case then that is encouraging too. I think generally speaking most doctors are going to error on the side of being overcautious when they are involved in a treatment like fecal transplants that is not yet an established treatment process in the medical field.

        UC and the drugs used to treat it definitely have risks and side effects. For example just yesterday at the Take Steps for Crohn’s and Colitis walk I spoke to a woman whose son died of rare form of Lymphoma cancer caused by his treatment with Remicade. So there are always risks to be weighed but in the balance, however I think the potential risks of FMT are quite manageable, especially when managed properly and definitely worth the upside reward of being free of this disease.

  21. Ana June 22, 2013 at 1:46 am #

    Hi Guys,
    We’re considering FMT for our 15 year old daughter. Our donor tested negative for everything (STD, HIV, hep, parasites/ova, c-dif, etc) aside from CMV (cytomegalovirus) and EBV (monoNucleosis). She doesn’t have an active disease but antibodies due to past infection (90% of adults have had the virus). Our GI said that she will be fine as a donor but I still have reservations and fears of transmitting those viruses to my daughter ( which I also read can be problematic in compromised individuals). We know of one case when the donor also tested positive for past infections but was a very successful donor to her little daughter! What are your thoughts about this?

    Ana

    • Ana June 25, 2013 at 12:03 am #

      Hi Michael,
      Thank you so much for replying to me. I absolutely agree with what you are saying. At this pont I believe the only way to repopulate your gut and achieve if not cure but remission,nis to do FMT. Since our daughter is the middle of a flare and we’ll be leaving for Italy next week for over a month, I felt it is important to bring down the inflammation. Also, by bringing it down, like you mentioned, we’ll be giving more time for her colon to heal, so that it can be repopulated with the beneficial bacteria more easily.The plan for now is to take Uceris (new steroid that dissolves only in the large intestine, so it has minimal side effects), taper off Asacol (or discontinue it after the first week of transplant or whenever we can see some positive results), figure out the diet conundrum, and do an FMT in August. By the way, what diet are you following now, if any?
      And Thank you again!!!!
      Ana

  22. Michael Hurst
    MichaelKHurst June 25, 2013 at 9:42 am #

    Hi Ana,

    I am not following any diet now, although maybe I should. I do try to limit dairy, spicy foods, nuts, citrus fruits (low residue diet) if I have any diarrhea. It seems like stress from what is most likely Irritable Bowel Syndrome still causes problems periodically. However making my diet bland and taking some Valerian root extract at night usually fixes things right up. I have had relatively frequent diarrhea in response to some foods for almost my whole life, so I would just suck it up and deal with the consequences.

    While some people swear by the restrictive diets like SCD, I don’t know if a vacation is the best time to start on one, nor that it really is worth it in the longrun. I think a low residue diet to treat diarrhea combined with some remedies for stress and sleep, steroids for the inflammation, and a good amount of protein, supplemented by protein shakes will start to get things back into shape while also allowing you all to enjoy the vacation. I actually used to enjoy going on Prednisone, because of the mood elevating and energizing effects and the ability to eat what I wanted and regain nutrition and body weight. Fortunately I have never had any problem with bone density in spite of taking Prednisone often and in high doses for nearly 12 years. I attribute this to always getting lots of calcium growing up and also strength training which helps build and maintain bone density.

    I would not recommend a quick taper off of drugs like Asacol once things start to get better. As I cover in my story on my website and in my book, I started to get better and dropped the Apriso but may have jumped the gun thinking it was already over. So that is why I advise not only pre-emptive measures to get the illness under control before starting, but also during and for a while after finishing up with the FMT. My personal analogy is like Rome defeating Carthage. Conquer, burn it to the ground, bury it and then till salt in the soil.

    I would stay on maintenance medications for at least 6 weeks after the apparent resolution of symptoms, (that’s what Dr. Borody’s patients did in the article) this is in part because of the “bloom” cycle of the spores, which may be about every two weeks or so. In my case after the great remission, there were periodic mini-flares. I now believe this could have been because of the cyclical nature of bacterial spores embedded in the walls now coming out. As the walls heal, new bacteria bloom, are killed off before producing more spores and over time you can eradicate them, kind of like putting out a stubborn brushfire.

    I believe mesalamine and anti-spasmodic drugs helped keep things from getting out of control and allowing the body to continue to maintain a solid bacterial balance and keep things under control. So I ended up continuing Apriso for about 5 months after finishing the fecal transplants after trying to come off it a couple of times it seemed to help stool quality. I also read it might help the body heal scar tissue. Personally I had better results with Apriso than Asacol because I only had to take it once a day. The mesalamine suppositories also were more effective than Asacol alone, perhaps because Asacol can get diluted as it moves down the colon.

    • Ana June 25, 2013 at 12:26 pm #

      Hi Michael,

      Great information, I thank you so, so much for it! You’re resolving my doubts about how to proceed with the medication during and after the FMT. Our daughter started Uceris ( 9 mg steroid that dissolves in the large intestine) yesterday and I think we already see some improvement in frequency (down to 4 yesterday) and less blood. She still has tenesmus. ( she calls them “moments). ( if The course is 6 weeks. She’s still taking Asacol hd (5 a day), not doing enemas now. Would you do them to speed up the healing? (our GI was ambivalent on those). Will you do them also concurrently with FMT?

      The main question, however, is whether to do FMT before we leave on Monday for over a month? Our GI finally replied saying that the donor is fine. So conceivably, we can start tomorrow, Wednesday, morning and do them for 5 days, continue with Uceris and Asacol now and while we’re away, and then resume FMT when we’re back (and continuing with meds if needed and eventually tapering them off). My hesitation is whether FMT might cause some unexpected side effects or worsening (and just before we leave). I read the Michigan study that was published in PubMed at the end of March 2013 (btw I can email it to you, in case you can’t access the whole report), which was done on children, some of whom had slight fever after FMT which was controlled by Tylenol. Or should we wait to do FMT for when we’re back (perhaps she might be in remission by then?). What are your thoughts on that?

      And thank you!

  23. Michael Hurst
    MichaelKHurst June 25, 2013 at 1:48 pm #

    Hi Ana,

    It does sound tempting to give it a shot in the five days, and having that willingness to push to make it happen is great to have with this. Although I have some questions:
    Would the GI be doing at least the first one or possibly all 5 using a colonoscope? This might help by getting the bacteria all the way up the colon the first time and possibly accelerating the process.
    Have you already been pre-treating with a course of anti-biotics? Dr. Borody’s patients who were successful doing a five day course, had all of those If I could do it again I would do the anti-biotics since both Cipro and Vancomycin helped me get into remission a few times.
    I believe that pre-treating with a course of anti-biotics is helpful for a few reasons. One is that by eliminating all of the bacteria, including much of the active “bad” bacteria the new bacteria can get a bit of head start on colonizing first without having to compete with existing bacteria before possibly having to deal with new bacteria coming back from spores. This could speed up the process and might eliminate some side effects such as bloating which are probably caused by bacteria competing for dominance with many dying off and releasing gas.

    I remember traveling with my family growing up and it was hectic enough without being in the middle of battling something like UC. While FMT could help by eliminating some bad bacteria I think there is a risk that it could make a flare worse in the short term even with steroids (it did for me. ) So given the circumstances I would wait until you get back from vacation and try to get it into remission in the meantime, this might include mesalamine enemas, although I would recommend suppositories instead since they are smaller and easier to travel with and also to administer (as long as you keep them from melting.) I sometimes used them twice a day, which seemed to deliver much stronger results than once a day.

    In addition to helping get the UC into remission, waiting would also give you a chance to try a course of anti-biotics before starting the fecal transplants. They could even be started while you are still traveling a week or two before you get back. Then when you get back you can be ready for battle, which may take 4 – 6 weeks, however with the right preparation, hopefully within that time frame you will see significant improvements even as you keep your foot on the gas with the FMT and medications.

    • Ana June 26, 2013 at 12:43 am #

      Hi Michael,
      Thank you for your valuable input. We’ll be doing FMT ourselves at home with enema. Our GI is really not that involved but he gave us the bloodwork tests for the donor and will be ok with prescribing antibiotics to our daughter. We also spoke to people at the University of Washington who are doing a clinical study with children with Crohns and UC. They are doing it through a nasogastric tube (or maybe it is nasoduodendal tube). When we spoke with their doctor, he said that they see good results with Crohns patients, which is to be expected since they are repopulating the small intestine. They are hoping to do another study next year (if they get the funding) more specifically for UC children. They do use a course of antibiotics prior to administering FMT. However, the Michigan study didn’t use antibiotics prior to FMT; their success rate was 65%. So our thinking was to first try to do it without doing antibiotics and then, if it doesn’t work, repeat it with a prior course of antibiotics. It seems there are pros and cons for both. You are making a very convincing case for doing it with antibiotics. My concern is that antibiotics will also wipe out bacteria in her small intestine. (We do suspect that the course of antibiotics she did for acne was what triggered her UC) I wish there were a study that compared the effectiveness of both approaches. After considering the timing again, it seems more prudent to wait until we return from the trip. (My rational to do before the trip was to simply try to achieve remission/cure now, since increasing Asacol HD from 4 to 6 didnt do it for her this time.) In fact we wanted to do FMT at the beginning of June, which would have given us some time but we ran into unexpected donor difficulties. Unfortunately, I can’t be a donor because I tested positive for blastocystis hominis, a parasite that doesn’t cause any problems for me but can be potentially a cause for intestinal problems. Our GI said that I can try antibiotics but those blasto bugs are notoriously difficult to get rid of. We decided that her father might be also problematic because he has some autoimmune disease that causes inflammation in his eyes. One friend volunteered to be a donor but she tested positive for H Pylori, which wasn’t causing her any problems but can cause problems for our daughter ( she tested negative for OVA/parasites).. So our third donor friend now seems fine and good to go but we ran out of time before the trip.

      You also mention suppositories vs enemas. She used to use enemas ( they did help) but we stopped them 3 weeks ago because they didn’t seem to be as effective and were disrupting her sleep (she could hold them for 2-5 hours, but the longer she held them, the better she was the next day). Maybe we should resume them… I thought suppositories were effective for proctitis, while she has UC in her descending colon (her first GI actually proscribed suppositories at first because of ease of use). What are your thoughts on that? Perhaps they are easier to hold.

      In any case, we’re keeping our fingers crossed that Uceris and all the supplements we’re doing (and they seemed to have been helping her), as well as the medication, will control her flare ( the problem with Asacol is also that sometimes it just goes right through her without dissolving) and induce remission. And once we return, we’ll do FMT (well have a month to decide whether to do it with or without antibiotics).

      Thank you so, so much, Michael, for your thoughtful comments and input.

      Ana

      • Michael Hurst
        MichaelKHurst June 28, 2013 at 12:18 pm #

        Hi Ana,

        The suppositories did help significantly for my UC and were easier to retain, the key is to keep the gut calm while the canana suppository base (hard fat, like lard or crisco) melts to supply the mesalamine which moves up from the rectum into the descending colon. I also had problems with Asacol going right through me, for years I thought it didn’t do much, however I had much better results with Apriso, 4 capsules taken once a day which used time released beads instead of the hardened tablets like Asacol. For about 4 months before starting the fecal transplants I was able to maintain remission with protein shakes, Apriso and suppositories.

        The Uceris sounds very promising, hopefully just as effective as Prednisone but without most of the negative side effects.

        Trying it without anti-biotics once and then trying it with anti-biotics seems like a sound decision given the risks of wiping out good bacteria in areas that are otherwise unaffected or would not get new bacteria from fecal enemas. Have you tried a round of anti-biotics specifically for the intestines such as

        As far as I can tell, disruption to small intestine gut flora did not happen or was not a significant problem when I took the anti-biotics Cipro or Vancomycin and had success at heading off a flare. I had such success using those drugs that I wonder if follow-up fecal transplants to repopulate the bacteria and anti-spasmodic drugs to calm IBS-diarrhea symptoms would have been enough to contribute to permanent healing. Another option might be anti-biotics that do not release until the large intestine or ones that are administered by enema to the large intestines.

        Another consideration if you are worried about the small intestines you could actually swallow poop in gelatin capsules as a less invasive option to a nasal gastric tube. A doctor actually did this in the 1950s, I like to it on my website, although here is the direct link to the original article: http://schaechter.asmblog.org/schaechter/2013/05/fecal-transplants-in-the-good-old-days.html

        • Ana August 22, 2013 at 1:07 am #

          Hi Michael and all,
          We are back from Italy, which we managed without a break down.
          Today my daughter started FMT at home from a friend donor (who was tested). My daughter is still on Ucerus ( hard to saynif it has helped her, definitely not a miracle drug, but no your typical prednisone side effects either) and 5 Asacol a day. The past week was the best one– 3 Bm, and 1-2 at night with no blood, and a little more formed. So we thought that the time was right to start FMT, while she is still on Ucerus. Watched your video a few times before starting it ( although got a smaller blender and a strainer), as well as read the results of the Michigan FMT study on children. So she did about 120 ml of the solution ( emptied a fleet disposable enema, and refilled it with slurry of fecal matter and saline), rather slowly (the children’s study did 4×60 ml over one hour)–120 ml over an hour. She held it for 4 hours, no almost no discomfort or gases ( we asked our donor to follow a similar diet, with fish and eggs, veggies, with no dairy, no red meat or white meat, no gluten). She did get a very slight fever (37.1, I guess its about 98.9), so we gave her Tylenol (some kids I the study also developed a s
          Ight fever). I can’t say that we’re seeing progress yet. It’s probably too early… I’m just hoping it won’t get worse, since she was getting better and stronger. So wish us luck and I will keep updating you!

    • Mike from Ohio
      Mike H June 27, 2013 at 9:29 pm #

      You may already know this but the reason that fecal transplants are not being offered or are being avoided by doctors in the US is because of a new crackdown by the FDA. In order for any physiscian to legally do a fecal transplant the docotr must now do an NDA (New Drug Application) and submit it to he FDA, which is a large amount of tedious paperwork. Then ther is 30 days of consideration and then the decison by the FDA may still be a no. I think the reason the FDA is now involved is because a large study showed that even 92% of the patients hat received a fecal transplant showed improvement there were 8% that got worse and even had adverse reactions. If the FDA is requiring an NDA then I am sure that most health insurance companies will not ocover it and with today’s economy many cannot afford the out of pocket. I currently have a healing J Pouch and so far no regrets, my recent recovery was rough and my final takedown is in September. So far my life without a colon is much better than life with one.

      Mike

      UC Free Mike

      • Joanna June 27, 2013 at 9:56 pm #

        Mike it was actually just annouced on june 17th i believe that the fda will not regulate fecal transplants since they are not considered a drug now. I guess they investigated the matter and decided not to go through with the insane criteria.

  24. Ana June 27, 2013 at 10:53 pm #

    Joanna,
    Great news. Thank you for the info. Here’s the link I found
    http://t.nbcnews.com/health/fda-backs-away-new-fecal-transplant-rules-6C10370978

  25. Michael Hurst
    MichaelKHurst June 28, 2013 at 9:14 am #

    No, the FDA decided to regulate fecal transplants as if they were a biologic drug, because a pharmaceutical company has been developing a drug based on poop and needed to protect that company from competition. They announced a crackdown at a workshop event on May 2-3, however there was significant pushback from doctors because they believed the FDA’s actions were not in the best interests of patients. It also doesn’t make sense to regulate poop like a drug, since it comes from the human body, maybe regulate it like blood perhaps but not like a drug.

    I actually spoke to a woman who was the only patient to attend the FDA workshop which was now publicly announced anywhere except on the FDA website. http://www.thefecaltransplantfoundation.org/our-stories.html

    Then last week the FDA reversed course and said they would not enforce IND permits for fecal transplants, then a few days later they gave fast-track status to a drug from Rebiotix RBX2660 (microbiota suspension.) http://news.yahoo.com/fda-grants-fast-track-designation-143900483.html

    Basically now that a pharmaceutical company can make money doing the same thing that people have already been doing for free for many years, fecal transplants have to be ok. However for now FMT is still considered to be a biologic drug while the pharmaceutical is being fast-tracked.

  26. TJ Harmon July 7, 2013 at 2:40 pm #

    Hi Michael, thanks for sharing your story. I wondered if you or others had experienced any reduction in symptoms prior to FT by simply going out into the sun. Crazy as it seems, for the last 4 years my symptoms disappear each spring when I spend at least 20 minutes a few days a week out in the sun. I’ve read that the incidence of UC is dramatically lower in warmer climates. My UC flares start up again in the fall. I’ve also read that vitamin D may play a roll in UC, so maybe the sun idea isn’t so crazy. I’m in DC too. Sounds like FT may be easier and cheaper than moving south.

  27. Jaimee July 8, 2013 at 8:07 pm #

    About the sun. I live in central AZ. It was 113* F today (like the last 2 weeks) and we get plenty of sunlight, but it doesn’t seem to affect the UC my brother, mother and I have in a positive way. It tends to sap your strength if you’re not careful. Just an observation for us. Michael, about the FT: How much did you administer? Did you mix it with normal saline or sterile water? Or is there a link you have with the “typical” regimine? My brother is bad off and maybe this would help him. He’s to the point where he doesn’t eat anything for fear it will hurt and he’s lost so much weight. Remicade worked for me (for now) but not him. Thanks for any help you can give. Happy your bowel is normal again; most people don’t appreciate a colon that works as it should.

  28. Michael Hurst
    MichaelKHurst July 31, 2013 at 4:02 pm #

    Hi,

    In answer to Jaime’s questions
    – I used about 8 oz. (the contents of a rectal syringe) after mixing one well formed piece of stool with about 200 – 250 mL of water, about enough to really cover the poop. I mixed it with sterile saline I mixed myself with distilled water and a sterile salt packet. I cover this process in more detail on my website and in my guidebook http://www.FecalTransplant.org

    I also got to that point of losing a lot of weight back when I was approaching surgery. I regained my health and got it into a degree of remission by drinking meal replacement shakes using Muscle Milk and / or Cytogainer sometimes mixed with some olive or flax seed oil for helpful fats. Banana bread also helped soak up some of the excess water too.

    Remicade along with some other factors contributed to secondary infections which required a stay in the hospital and when it worked it was only for about a week or so. While it seems to work for some the possible side effects are definitely a major concern.

    Yes, having had Ulcerative Colitis makes me appreciate my colon and not take it for granted!

  29. Michael Hurst
    MichaelKHurst July 31, 2013 at 4:07 pm #

    TJ,

    As for going out in the sun, that could definitely help. Changes in seasons which can lead to Seasonal Affective Disorder (SAD) have long been considered to be a cause of someone having a flare. This could be because depression is a factor for Irritable Bowel Syndrome (IBS) related diarrhea. I think sun can help as it can boost mood and to the extent that Vitamin D is helpful for UC. As you will note part of my treatment approach also involved anti-depressants to help calm diarrhea.

  30. Ana August 22, 2013 at 6:12 pm #

    Update on FT: Day 2 of FT for our daughter (who’s on Asecol–5 a day; Uceris, probiotics, including 1 VSL DS sachets and Ultimate Flora, and supplements)
    We haven´t seen dramatic improvement yet, although today she skipped her early morning bm (perhaps they look better, unless it’s wishful thinking). After about 1 hour of the last infusion, she feels sleepy (per Michael’s experience, I give her about 25’30 drops of Valerian root extract prior to FT) she usually naps for 1 hour), and then after 4 hours she complains of some muscle ache, some feverishness, and her pulse rate goes up (92 today), which prevents her from going to school in the afternoon (today she didn’t have a fever, while yesterday she had a very slight fever (98.9 or so). We read in the Michigan study that some kids developed fevers and were given Tylenol, and so that’s what we did. Although she remains more tired than usual, her symptoms subside in about 4 hours.
    Michael, or anybody with FT experience, did you have anything similar?
    And thank you!

    • Michael Hurst
      MichaelKHurst September 9, 2013 at 10:58 am #

      Hi, how are things going now? I can’t remember having any significant fevers, although I have heard about that happening with other people. Tylenol does sound like a good choice in this case. I didn’t necessarily feel sleepy after the fecal transplants and did not always do them at night.

      Your treatment regiment generally looks good, I think Valerian root extract is helpful for calming urgency and slowing diarrhea at least as well as prescription tri-cyclic anti-depressants and using it before fecal transplants should help retain the enemas. I didn’t actually discover the effects of Valerian until after I had already finished with the fecal transplants. However I would recommend it to anyone to consider.

      I don’t think oral (yogurt-cultured) pro-biotics really make too much of a difference one way or the other when you are doing fecal transplants since you are already introducing a much larger and more diverse colony of bacteria through the enemas and the pro-biotics could potentially cause the production of more gas and bloating.

      I go into some more detail about fecal transplants on my website about the fecal transplants process on my website http://www.FecalTransplant.org although it sounds like you are on the right track.

      • Ana September 12, 2013 at 12:12 am #

        Hi Michael and all,
        So our daughter did 13 FMTs. We do infusions of about 200 ml. Unfortunately, because of her school, we did them in the series of 4, 7, and 2, instead of consecutive and plan to do them every weekend and once during the week. No definitive results yet. Do you know if we can refrigerate or freeze the stool, so that it can be used at night the same day? Which method is preferred? I saw on some sites that people use frozen stools and I think you also used refrigerated stool from your donor (how many hours in the frige?). I couldn’t find any information on storage in medical literature (in the studies, they use the stool within 2 hours). Our doctor had no answer either but thought perhaps freezing is better. We think that in general her stools improved, she no longer has a low fever or feeling jittery after a transplant. On some days, not necessarily when doing FMT) she might have more formed stools. The frequency is 3-6, with usually 2 stools at night. She would have a good day, then followed by a bad day, with more tenesmus, or spasm ( today was really a very difficult day for her). She still hasn’t gain any weight (her albumin levels were fine though when checked in June), which also affects her well being and blood pressure tremendously ( the other day she had 84/53). It seems she became worse after we started getting off Uceris (after 8 weeks), so our GI agreed to continue it for another two weeks. She is down to 4 Asacol from 5 (we thought it might be contributing to diarrhea ). Also we’ve been trying to transition to SCD, although our GI thinks that animal protein (from red and white meat, as well as eggs) contributes to more inflammation.. So I don’t know whether increasing her animal protein intake ( expanding from fish and eggs, and including turkey) and excluding grains completely have contributed to her feeling particularly crampy today and more trips to the bathroom ( she couldn’t go to school). Perhaps, since she hasn’t been eating white meat, she’s lacking the necessary flora in her intestine. Im even afraid to give her home-made chicken broth, since last time we gave it to her in March, she started bleeding ( coincidence?) We’ll try adding some valerian at night to help her keep her intestines more relaxed, keep FMT but as to the diet, I do not know and it drives me nuts! I like the theory behind SCD ( got the books) but every time we try to incorporate more animal protein, she’s feeling worse! Also by doing FMTs we’re trying to change and expand her intestinal flora, while SCD’s goal is really to reduce it by eliminating unwanted bacteria. Also I read in your blog, Michael, that you are in favor of doing a course of steroids while doing FMTs to help keep the inflammation down and giving transplanted bacteria a chance. (and, if it works, give her poor gut and body a break, since she hasn’t been in remission since March). We’ll ask our GI if she should take them but his position was that before we change her medication, he wants to do a colonoscopy to see what’s going on. Aside from other things, I’m afraid that it will also wash out whatever transplanted bacteria she might have. So, I feel at a loss…. All your thoughts and support are so, so welcome!
        Ana

        • Sharon September 12, 2013 at 12:59 am #

          Ana, I do not have any words of wisdom on FMT but I just wanted to let you know we are all rooting for you and your daughter. I have also been flaring and will be starting the GAP diet as soon as I finish all the prep work. Since I am out of medical options FMT may be in my future as well. Could you tell me your daughter’s name so I can pray for her?

          • Ana September 13, 2013 at 11:48 pm #

            Hi Sharon,
            Thank you so much for your kind support. My daughters name is Lisa. She’s back on Uceris and her condition improved–at least she doesn’t have those debilitating cramps. But we’re still getting nowhere. I think the steroid in uceris is enough to maintIn her condition but not enough to put her in remission. However, our GI thinks that doing a course in prednisone won’t do more than what uceris is doing. She never tried a course of steroids and I think their effect is more powerful that the very low dose that Uceris delivers. (also it’s really not that clear that budesonide is that effective in UCs.

            So, it’s a transplant weekend and then will try to continue with the frozen ones at night.

            And keep fighting!
            Ana

  31. Tarrin September 8, 2013 at 12:12 pm #

    For 34 years I took taking a dump for granted. After my recent experiences with a complete gut bacteria collapse post strong antibiotics and reading sites like this. I swear to be grateful. I believe I had Cdiff post antibiotics although it was never diagnosed because I could not afford to go back to the doctor. The symptom were as described on most articles. I fixed it with probiotics and after 45 days I almost have healthy looking stools again. I’m not sure if the relationship with me and probiotics going forward is permanent but I hope not so that I can stop once I reach a healthy population of good bacteria again. Probiotics are expensive and I object to buying bacteria. Once I’m healthy, I will freeze my own stools to make sure this never happens again. (No relatives or good friends to help out) OMG, I don’t know how you people cope. I seem to be somewhat on the mend but still have a problem with painful wind trapped in my gut. After I eat my stomach distends like a pregnant person. Don’t know how to get around that. Does anyone have any suggestions. It’s not related to any specific food type, Have had meat only as well as carbs only and no difference. The only things my gut really does not seem to like is dairy, vegetables, fruit and fat in high quantities.

    • bev September 9, 2013 at 6:01 am #

      Hi Tarrin,

      What a GREAT post! You nailed one of the causes of UC…antibiotic use.

      So, you DO NOT have UC per se? You just realized that you had all of the same symptoms, and took probiotics? I am in remission from UC now, thanks to a good probiotic. I’m fairly certain that I will HAVE to take them forever. Mu gut cannot seem to sustain enough good gut bacteria any more.

      Cheers, and thanks for the very informative post…how did you get so smart and know what was happening to you??? It took me 15 years…lol

      :)

  32. Tarrin September 9, 2013 at 7:02 am #

    Thanks Bev

    I have not tried withdrawing from probiotics yet so I can’t say for sure if this is resolved but I’m assuming that if I replace the colony it should be able to look after itself. Not sure if I have the courage to withdraw just yet but will have to as the dose I’m taking is 100 US per month. I also read somewhere that ribbon like stools are a sign of an obstruction in the colon but that is not always the case. So maybe I’m not out of the woods yet, wont know until I consult a doctor. What I do need to get rid of is the gas, I’m used to having a flat stomach and the constant running to the bathroom is affecting my productivity at work. It’s a huge problem and short of stopping eating, I’m not sure what else to do.

    I suspect the reason why you are struggling to maintain a good colony is because your peristalsis is moving too fast. You bowl excavates itself before the colony can take hold and gain critical mass. During my Googling’s I read that Loperamide, Octreotide acetate and oral opiates slow this process down. I cannot personally recommend any of these as I have not tried them. I also read somewhere that Probiotic manufacturers use strains that do not produce spores to increase your dependence on their drugs. It’s a bit like buying seedless apples, they taste great but you can’t throw the core in your backyard afterwards and hope a tree will grow. Best thing is to eat unwashed veggies, furry cheese, beef jerky, home made dried fruit (not irradiated) and sun dried tomatoes. Buy from open markets where food is left open and on display. There is a reason babies eat sand, it is in our programming to replace lost bacteria. All of this grocery store, pre-wash, pre-packaged irradiated food does not help to replace a colony created over the span of a lifetime.

    Maybe if I do have colon cancer it will be a good thing. I can get the whole damn thing cut out and lose some weight for a change. Strangely before this antibiotic event I was permanently constipated. It was a way of life for me and I accepted it as normal. All of this running to the bathroom is traumatic and I just want it to be over with.

    Still I can’t imagine being you, having to put up with this for 15 years must really affect your quality of life. I’d have gone mad already.

    I hope you manage to resolve this, maybe you should stand under the mistletoe this year and kiss a lot of people. That should help to get some good old fashioned spore producing bacteria into your gut :)

    All the best

    Tarrin

    • bev September 9, 2013 at 8:47 am #

      Tarrin, you are remarkable in all of your knowledge! Thank you so much…what you said all makes so much sense. It seems that we cannot ‘bank’ the good bacteria in the probiotics, and what you said about the bowel excavating before the good bacteria can take hold. Also, perhaps the probiotics are structured the way that they are by the companies who make them so that we have to keep purchasing them? This is all such good insight, it’s almost exhilharating! Fantastic. You are actually helping us all to understand what’s happening ‘in there’ and why. Is EVERYONE READING TARRIN’S POST????

      Hopefully, those capital letters will pulsate out so that you all will read the posts by Tarrin. They may be the best ones ever. Thank you so much for taking the time to explain all of this and help us all to look at UC in this way. It’s truly less frightening to realize how simple this all really is…lol…yet how complicated it is to knock it into remission.

      What a gift you are and have also given me (us).

      Bev
      :)

  33. Michael Hurst
    MichaelKHurst September 9, 2013 at 11:07 am #

    Pro-biotics can be helpful, also slowing the rate of bowel movements using anti-depressant or anti-anxiety drugs or supplements like Valerian root extract is helpful for enabling healthy bacterial colonies to develop. The only downside to pro-biotics which use bacteria that is not native and self-sustaining in the human body is that you have to keep taking them.

    Whereas with fecal transplants with the help of some drugs and supplements like I used, once you have gotten the inflammation under control, established a sustainable bacterial colony and healed the intestinal walls to repair the gut barrier then you can be done with drugs, diets and supplements for good!

    • bev September 9, 2013 at 5:43 pm #

      Yet more excellent information!

      I SO want the FTs, Michael, so that I don’t have to keep taking a probiotic every single day.

      I can’t believe how much ‘trouble’ I got into just changing the probiotic that was working for me, to a special ‘colon’ one! Obviously, different strains…and it took me a whole month to get my remission back again after going back on the one that I should have stayed on. That’s very telling. The bacteria just are not sustained!

      • Michael Hurst
        MichaelKHurst September 19, 2013 at 12:51 pm #

        Bev,
        While fecal transplants may seem like a big deal, I think it might be worth it for you. I recently had to take antibiotics (Amoxicillin) for the root of one of my teeth becoming infected and amazingly enough it is not causing any GI upset. I think the transplanted bacterial colony is very resilient. If you can find a donor with a very good GI health history I think it would really be worth it.
        No more worry about having to consistently take pro-biotics. If I had it to do over again I would even consider taking it in gelatin capsules by mouth which would make things even more convenient.

        • bev September 19, 2013 at 6:03 pm #

          I think that you are absolutely correct Michael. FTs are the ultimate panacea for UC I am certain. If I can do them, I will. No question. I would love to be free of having to buy or take anything at all. Before UC, I never took anything every day. Now, I have to just to retain the good bacteria. I want to be free of HAVING to take anything.

          That is true freedom!

          Thank you!

  34. Tarrin September 9, 2013 at 11:56 am #

    Thank Michael!

    Glad to hear that you managed to get your UC under control. If anybody discovers a food group that does not irritate the colon and does not produce gas, would love to hear from you.

    Thanks
    Tarrin

  35. Ana September 13, 2013 at 11:57 pm #

    Probiotics–so many out there. Perhaps Ultimate Flora Colon wasn’t good for you, Bev, because its very heavy on various bifidus strains, which, according to the Viscous Cycle book, might not be that good for you and can overpower other bacteria. Another thing that I wonder is whether the inulin in Culturelle is counterproductive (again if you adhere to SCD diet) .

    • bev September 14, 2013 at 6:40 am #

      That sounds correct, Ana. I still really haven’t attained the full remission that I had before I tried that Colon probiotic. This has been sort of a trial, let me tell you. I am once again doubling up on the ‘Critical Care’ probiotic, which, it seems, I may need to keep doing indefinitely.

      I swear that I could kick my own butt around the block for trying a different probiotic when the other one was doing a fantastic job…

  36. Lynn November 18, 2013 at 1:22 pm #

    Hi Michael –

    As a mother of a college age son with UC your story parallels his a lot. We tried the SCD, GAPS and really neither helped much. Some foods agree with him better than others so we have created a diet that fits him. Kind of a SCD, GAPS, and Paleo mix. He is a 19 year old sophomore at a big ten school. I believe from his journey that it is about the bacteria in your gut. He went into his sophomore year taking no meds and ended up in his worsted flair yet. He tried strict intro GAPS and just got worse. He almost quit school. He decided to take a small dose of the devil drug which helped with symptoms and then a GI doctor called in a prescription for UCerise. Now off prednisone but on UCerise as he is two weeks into 6mp which makes me cry. I have him on a therapeutic dose of probiotics. The doctor wants him to stay on UCerise as a bridge until the 6mp kicks in? He is also on an ADHD med. We are a family that eats no sugar or gluten a lot of fermented foods, organic everything fruits and veggies and grass fed beef. So all these meds so go against our beliefs. We have traveled around and visited doctors that do FMT but no one wants to do the procedure on a UC patient. In the above post you mentioned something about taking in gelatin caps. This has crossed my mind as I’ve seen gelatin caps and my son said he wouldn’t mind swallowing a pill. In fact in Canada there has been a study using gelatin caps. If you’d freeze the caps would that work? Have you heard anything about this procedure as a twist on the FMT?

    • Bev November 18, 2013 at 2:57 pm #

      I would love to know about this as well. I still maintain that FTs are the way to manage UC safely and affectively!!!!

      Bev

      • Bev November 18, 2013 at 2:57 pm #

        The ONLY way….

      • Ana November 18, 2013 at 5:24 pm #

        Hi Bev,
        Glad to hear from you. As I mentioned in the previous post, we started FMT a month ago. Prior to that, we started oral steroids at 40 mg, and then a week of antibiotics (initially, we had given FMT a try without steroids or antibiotics but it didn´t seems to work, if anything it made my daughter’s condition worse; it might be perhaps because we didn´t do FMTs long enough but our daughter couldn’t continue any longer with her symptoms that were exhausting her), aside from not being able to go to school, etc.). But in all accounts, FMTs are more effective when the gust is healed. So, we don´t know the answer yet whether they have worked for her or not but we’re determined to continue with the FMT treatment—so far so good (for at least a year, there’s a schedule described in Sky Curtis’s book that we are following) and to reduce first her prednizone slowly (she’s now on 22 1/2), and then Asacol. I think nobody knows for sure the length of the treatment but for many IBD people is usually over a week of treatments.

  37. Ana November 18, 2013 at 1:50 pm #

    Lynn,
    So sorry about your son but he’ll pull through. We’re also a family who eats very healthy and organic, no sugar, etc, and try to avoid any drugs that do not seem necessary or have secondary effects that are worse than the disease. So we resisted for a long time before deciding to go on Prednizone for our 15 year old daughter. Before the oral dose, she also did Uceris but it didn´t help. We tried various diets and supplements which were marginally successful. So, once we started oral steroids, we also began FMT. We’ve been using the information from Sky Curtis book, as well as information we’ve read online and Michael’s video, story, and his very helpful advice. So far, it’s been going well and we’re going down on Prednizone. Looking back I think we should have started it earlier (her flare began in March, we started oral steroids and FMT in October), which, we think, would have avoided her colon to be so ulcerated, and which will require so much longer to heal. I think it’s OK to take 6 mp if absolutely necessary and he’ll be able to go off them once he’s healed. I don´t know much about caps, it seems quite involved, taking more than 30 at a time. I also do not know how and if they survive all the digestive enzymes and bacteria prior to reaching colon. The bacteria in frozen FMTs survives when frozen at –80 centigrade, however, I couldn’t find information about freezing in a home freezer. Said that, we’ve used both fresh and frozen donations. If at all possible, he can do those FMTs himself at home (check the donor first). The clinics might be good but from what I’ve read a lot depends on the length of treatment, which is longer than the course of treatment offered by those clinics (BTW, there’s one in Oregon, who might do it http://fecalmicrobiotatransplantation.com/FMT/home.html). Don’t give up—your son WILL get better!

  38. Bev November 18, 2013 at 6:06 pm #

    Hello to you too!

    I am still convinced that FTs will be the answer for all of we sufferers.

    Please do continue and let us know what happens. I can’t wait for good news for your gal!!

    Bev

  39. AJ February 26, 2014 at 6:01 pm #

    Hello. Congrats on the cure. I currently take remicade every 6 weeks for my severe UC. I have good days then some bad days but for the most part feel a lot better. What protein shakes are ok for UC? I see you used muscle milk so I’m curious what other options I may have. Also, ever hear of garcinia cambogia used for UC? Thanks

  40. dinger09 June 29, 2014 at 6:31 am #

    Michael – You need to investigate the use of camels milk as a part of your long term strategy. It has some incredible probiotic without the lactose tolerance issues of milk or yogurt. Recommend you visit the Camels Milk Association in Wisconsin to lean more. Congratulations on your recovery.

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