Why DIY fecal transplants are a thing (and the FDA is only part of the reason)

Michael K. was three days away from surgery to remove part of his intestine (the last-resort treatment for his ulcerative colitis) when he heard about a treatment his doctor had never recommended: fecal transplants. He canceled the surgery, sought help from a mentor, and chose a friend who he thought would be a good source of healthy donor material. What happened next sounds a bit like an oddball marriage proposal: he took the friend on a hike, made a few poop jokes, and then popped the question.

The friend said yes, as he writes in his success story on The Power of Poo, a website created to help patients find help with fecal transplants (DIY or otherwise.) The two moved in together for more convenient poop swapping, since he wanted to do the transplants frequently, and they need to be fresh.

If you want something done, you’ve got to do it yourself?

Is the age of the do-it-yourself fecal transplant upon us? That was several experts’ concern after the FDA’s recent decision to regulate fecal transplants as an investigational new drug. (Judy Stone‘s is one take worth reading) As a result, the treatment, which was on a trajectory toward mainstream acceptance, will once again–temporarily–be rare and hard to get in the US.

Fecal matter occupied a gray area, neither drug nor device nor tissue, when Maryn McKenna reported two years ago that “fecal transplants work, but the regulations don’t.” At the time, several researchers were applying to begin clinical trials. That would be the road toward getting the transplants, known as FMT (for “fecal microbiota therapy”, although there are a lot of other names: stool transplant, fecal bacteriotherapy, human probiotic infusion…) approved and widely available. Now, FMTs are considered to be in Phase 1 of a three-phase process.

In the meantime, doctors operated within the gray area and tried it out. It worked, they shared results, and soon FMT got its own billing code (44705) and a set of guidelines that include a battery of tests for donors: blood tests for diseases like HIV, and stool screening for parasites and the like. The price of donor testing is estimated at anywhere from $500 to $1500+, depending on who’s doing the estimating and what tests they include. Good luck getting insurance to cover it.

If you have the cash, though, FMT is worth it. The studies that have been done so far are astounding: in one trial of patients suffering from C. difficile infection (a diarrheal disease that can be life-threatening and antibiotic-resistant), an infusion of feces cured 94% of the patients. The usual treatment, an antibiotic called vancomycin, only cured 27%. The trial was stopped early because the difference was so drastic; it was unethical to keep half the patients on antibiotics alone when a better treatment was available. Gastroenterologists agree: FMT is not just effective for C. diff, it’s extremely safe. The American College of Gastroenterology writes in their C. difficile treatment guidelines that “no adverse effects or complications directly attributable to the procedure have yet been described in the literature.”

Dr. Michael Edmond, who used to offer the procedure, blogged recently about canceling patients’ appointments and applying for the Investigational New Drug permit that is now required. (The FDA will approve or deny the application within 30 days, but won’t tell him the criteria they use to decide.) He told The Verge: “by trying to make fecal transplants safer, the FDA is actually pushing them underground.”

The underground

They have been underground for a while, of course. Only a few clinics offer the treatment, and some (like the Centre for Digestive Diseases in Australia) give patients instructions on doing the procedure at home. Meanwhile, sufferers of inflammatory bowel disorders are already sharing tips and support online, so DIY instructions fit right in. If you are desperate and willing to try anything, Dr. Google and Dr. Facebook are there for you.

The gross-out factor probably contributes to the scarcity of medical professionals offering the treatment. Tracy Mac, who runs the Power of Poo website, describes her gastroenterologist’s reaction when she suggested a fecal transplant: “He screwed up his nose like a seven-year old and observed ‘but it’s putting someone else’s poooo inside of you’. An interesting comment coming from someone who makes a living sticking cameras up bums!”

The thing is, if you have Crohn’s, C. diff, or ulcerative colitis, fecal transplants mean dealing with less poop, less often. “[I] realize that doing the fecal enemas is not that bad,” Michael writes. “Afterall the illness caused me to poop my pants with bloody diarrhea at times.”

Also spurring the do-it-yourself phenomenon: those amazing results I mentioned earlier are from C. diff infections, but many patients seeking the treatment have ulcerative colitis, Crohn’s, or sometimes other disorders. The evidence is less definitive on those, although still promising. It may be the nature of the disease: If you have C. diff, your problem can be traced back to a single misbehaving species of bacteria.

This one.

For inflammatory bowel disorders, the disease and its causes may be more complex. Tracy Mac attributes mental health problems to an unhappy gut, which is not as far-fetched as it may sound: a recent study found that gut microbes can influence brain function in humans. Scientists in the Netherlands are testing fecal transplants for weight loss and insulin resistance. The gut microbiome seems to be a key player in health and disease, so FMTs have a lot of potential. Potentially.

How it’s done

While C. diff treatment often uses one transplant or a short series, sufferers of inflammatory bowel diseases like ulcerative colitis and Crohn’s often prefer a long term strategy. Kathy explains why she has been doing FMTs for her daughter for the better part of a year: she was in a trial testing fecal transplants for ulcerative colitis, and did so well that they decided to continue at home. “We have kept up the FMT because we believe the intestines take a long time to heal, and because we don’t think it can hurt,” she writes. “While we have faith in the treatment, we don’t want to stop it yet, either.”

Kathy has a fascinating, simple, instructive video on youtube. Neatly dressed–and still spotless at the end–she prepares a sample in her bathroom, as she does several times a week. She has a dedicated blender, cup, strainer, and spoon, and she wears gloves. Ten minutes for prep, she says, five minutes for cleanup, and about thirty seconds to administer. Afterward, she used to ask her daughter to lie down and watch a movie; after nine months of treatment, she’s as likely to do a handstand for a few minutes and then go about her day.

In a hospital setting, the transplant is often performed with colonoscopy equipment, to infuse the sample as far back in the colon as possible. It’s also possible to run a tube from the patient’s nose down past their stomach. For the do-it-yourselfers, the more accessible option is to simply use an enema bottle. (The smaller size, I keep hearing: a little goes a long way.) In fact, there is research suggesting that enemas may be the most effective delivery method, but there’s just not enough data yet to say for sure.

What? Sometimes a glass of chocolate milk is just a glass of chocolate milk. Photo by mynameisharsha.

What now?

There are lots and lots of questions about fecal transplants. We’re just coming to grips with the gut microbiome’s impact on health and disease, and we know so little about what is actually in that magical brown pellet (which is about 55% bacteria, in case you were wondering.) Does a donor have to be matched to the patient, or is any healthy stool good enough? Do some patients respond to the treatment and others don’t – maybe in a predictable way? Does the sample need to be fresh, and if not, what is the best way to store it? Can poop be replaced entirely by a synthetic, probiotic concoction? Are there legions of failed FMT patients who are too disappointed, or embarrassed, to publish negative results?

I’m looking forward to hearing the answers to those questions, and I hope the FDA’s rules don’t keep life-saving treatment from those who need it (They have promised emergency approvals in dire situations). In the meantime, if you want to hear about the current state of the science from those on the front lines, the transcripts from the recent FDA workshop will make excellent reading on the beach this summer. All summer. We’re talking 600+ pages. Enjoy?

(Update: I’ve corrected this piece to refer to inflammatory bowel diseases, or IBD, an umbrella term for diseases including Crohn’s and ulcerative colitis. That’s distinct from irritable bowel syndrome, which is what I originally wrote. Not the same thing! Thanks to Tracy for setting me straight.)

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40 Responses to Why DIY fecal transplants are a thing (and the FDA is only part of the reason)

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  5. Jesse Parker says:

    How do we choose a donor?
    I want to do this treatment at home and I’m afraid to make things worse.
    Can anyone tell me what are the criteria for choosing a donor and does the donor need to go through a series of tests prior to doing this?
    Also, are there any risks when doing it yourself?

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    • Max says:

      My best friend, an MD, is suggesting I be my wife’s fecal donor since we live together, eat together, have sex together etc and I don’t have what’s ailing her. We are going to try it.

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    • nancy says:

      a donor should be healthy, have no stomach or gut issues and eat a well balanced diet. Also they can take broad-spectrum probiotics before donating the sample so you receive as many organisms as possible. The idea is to have healthy organisms from the donor populate your gut. You can do a comprehensive stool analysis of the donor beforehand if you chose to.

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  6. Lee says:

    I think this is an awesome article…. I just recently done my second DIY fecal transplant for Ankylosing spondilitus and starting my third one soon.

    I think fecal transplants have a lot of potential for many diseases, since many diseases are believed to triggered & caused by BAD bacteria…..

    The trick is to get your new donor bacteria to take hold in your system.

    At first this treatment seems disgusting to think off, but when you look at it from a scientific perspective it all makes sense…..I have read we are about 90% bacteria and 10% human!

    There are many videos on youtube which discuss fecal transplants……It might save your life…

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  7. Bob says:

    I have two questions just in case anybody knows answers. I realize that answers may not be gettable. (1) I have food intolerances and allergies – beef, dairy, mushrooms, etc. If I accept a donation from my brother, who eats all those things, am I going to have problems? (2) What would be better, getting a donation from a brother who lives 1500 miles away or getting a donation from a friend who lives in my neck of the woods?

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    • nancy says:

      the donation you will receive is from food that is already digested and so shouldn’t have any allergic affects for you. the lower bowel doesn’t absorb much except water from the waste. The idea is for the microorganisms to take root and survive in your bowel.

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  8. Bob says:

    OK. I’m sold. I’ve been radicalized. I was radicalized last night at 7:32 p.m.

    I had c. diff last year for nine months. I vanquished it with Vancomycin or so I thought. The beast hath returned. I’ve had some diarrhea the last couple of weeks but I thought I was “herxing” from an anti-candida protocol I’ve been doing. Well, last night I had terrible, intolerable cramping, and I happened to be on a crowded city bus at the time. Somehow I held it in. (The alternative was to create mass hysteria and generate a really weird article in the newspaper.) I do believe I turned as white as alabaster from the pain. I made it home, bent over like a crab. I made it inside my apartment. The time was 7:32. (I saw a digital clock.) I made it inside the door and that was as far as I got. Let us draw a curtain over what happened next.

    Anyway, yeah, I’ve been radicalized. My worries about self-administering a transplant vanished at 7:32 p.m. and I’m ready to proceed. I’ll get some testing done but I’m 98 percent sure the beast is back. This web page is helpful – I appreciate your funky, funny tone, and of course appreciate the advice.

    By the way, there’s little doubt in my mind FDA is in bed with the pharmaceutical companies. FDA has done many good things over the years but you can’t have that much money floating around without people climbing into bed with one another.

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  9. Deb says:

    Hi,

    I’m just wondering if using a young child or toddler as a fecal donor would be best (in terms of optimal gut flora balance) or is the gut flora of a child this age developed enough to be of benefit to an adult.

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    • Beth Skwarecki says:

      As far as I’m aware, we really don’t know how to spot (much less create) an optimal population of gut flora. A child’s immune system is very different than an adult’s, and it takes years for a child’s gut flora to resemble an adult population. Does that make it better or worse? I don’t think we have good data on that yet.

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  10. amanda says:

    I’m intrested in the research on this to treat obesity. It works in animal models.

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    • Beth Skwarecki says:

      I agree that it’s promising, but the animal tests are very different than what a human treatment would look like. For example, they typically start with mice that have been raised without any good bacteria, and then introduce flora for the first time. I don’t believe any of the mouse studies have shown weight loss, either, just comparatively less weight gain.

      You may be interested in the FATLOSE trials going on in Europe. I believe they are focusing on insulin resistance, but as the name suggests, they seem to be hoping this could work for obesity too.

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  11. Chuck says:

    it works!!!! my brother used the Australian Dr’s system and after 17 yrs of Asicol, colonoscopys, and steroids, he found a cure. he’s been medicine free for a month. the Fda won’t look into it due to financial losses, but fuck the government!!!

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    • Roger Bird says:

      Oh, Chuck, your manner of speaking concerning the FDA is MUSIC to my ears. If people would only look closer at the FDA, they would realize that the FDA is not their friend, unless of course they are the CEO of a big pharmaceutical company. This fecal transplant movement (excuse the pun) is likely to bring down the pharmaceutical companies, or at least cut them down to a managable size.

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      • susan szoke says:

        At-home fecal transplants WORK! It is inexpensive but takes dedication to the not-so-pretty job. I know I saved my father’s life by researching procedure and carefully picking a donor. I did both my elderly parents so one could not re-infect the other and so forth. My Dad nearly died prior to this solution. When he was much healthier I did the transplant on both parents at the same time. I was the only relative willing to do this and I’m so glad I did! Neither ever had a problem after the transplant.

        To have a Dr. do it would’ve required thousands of $$ and multiple trips too far away. To have the Dr. ‘oversee’ me do it myself would have cost just a little less. And the Dr. would never leave his office!

        C-diff kills, especially the very young and the elderly. The spores can be present a very long time. Re-infection rates are high. Dealing with the diarrhea clean-up was far worse than the cure. I don’t know about the other diseases mentioned here, but the patient’s suffering is certainly worth the effort to try to end it.

        Hopefully, this site has all the info you need.

        If you are considering a fecal transplant and have any questions about my experience or need encouragement, I will be notified of your followup request and be happy to be put in contact with you. No jokers, please.

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        • Roger Bird says:

          Susan, since you are so willing to do (not just talk about) fecal transplants, you might check out Urine Therapy. I found it to be a panacea.

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  14. Kat says:

    I’m doing one right now for my Ulcerative Proctitis. I’m only on day two, but feeling much better already. I wish I had heard about this 4 years ago when I got ill.

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  16. Ed Wapole says:

    Its easy to understand why the FDA is obstructionist. They are the lapdog of the Medical-Industrial Complex (MIC).

    Fecal Transplants are so cheap and so easy to do at home, the MIC is desperate to make sure only the most expensive way to do it will be approved by the FDA.

    What the FDA will finally approve is an artificial intestinal biome, that will be half as effective as natural feces, but will cost a fortune to buy and administer.

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  17. Doug says:

    pharmaceutical companies would go broke.. Asacol cost 900 $ a month for me…. my wife’s poop is free… duh…

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  18. Craig says:

    Hi Justin or anyone else that has successfully tried this procedure. Can you advise if you did the FT during a flare? or did you do it while no symptoms present.

    Also, what would you recommend eating during doing it.

    Mary, there are quite a few you tube videos explaing how to DIY if you feel.up to it

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    • Justin says:

      I did my first FT during a mild flare and on Remicade. It actually made me worse for about 3 days and then things cleared up and so far so I haven’t had any problems since.

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  19. Mary Walden says:

    Is it possible to sent me the procedure of the faecal transplants,
    and how to chose a donor, I read one person use a infant stool, is it the best to use? Do you know any doctor in UK will offer this procedure

    Early replied will be appreciated

    Regard

    Mary

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  22. Justin says:

    Three years ago at age 21 I was diagnosed with moderate to severe Pan-Ulcerative Colitis. I’ve been on 6mp, Lialda, Apriso, every enema possible, and Remicade. The remicade worked the best but even then I was having symptoms of UC. Finally, after a doctor recommended surgery I decided to investigate into alternative/experimental therapies. A study published by Dr. Borody prompted me to pursue Fecal Transplant. Ironically my sister just had a baby girl, so I thought she would be the perfect donor. So out of sheer desperation I started a home FMT protocol.

    The first FMT I actually felt worse for the first week and thought it was the wrong decision. But after that first week I started to feel better and better. Soon after about the third FMT my symptoms subsided and I stopped all medications except Apriso. Within three weeks of starting FMT I gained 15 pounds, the nausea and vomiting subsided, and had 1 to 3 formed bowel movements per day (compared to 3-5 with mucus, severe cramps, and urgency). As far maintenance, I continue to do the FMT, I have my sister save the dirty diaper and make sure I get it in me within 12 hours. My sister lives very close to me so it is extremely convenient. Based on my experience FMT works for treating Ulcerative Colitis.

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  23. getwell says:

    Regarding the study using fMRI to detect probiotic effect on the brain, any idea if those specific probiotic strains used are important, or would a good probiotic in general work?

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  25. JSM says:

    Here’s the most important thing to realize about FMT:
    It worked two years ago; it worked when medical journal articles were published five years ago; it worked decades ago. Desperate patients resourceful or lucky enough to get access to the treatment, whether for C. Diff, IBS, Colitis or IBD see great benefit.

    Meanwhile, many doctors have been dismissive, the FDA has been absent (and now, suddenly, obstructionist), and patients have suffered. There are millions of people in the USA alone with GI conditions who could potentially benefit from FMT. Most of them haven’t even heard of it.

    The FDA and the medical community need to get over their fears and get this treatment moving NOW. It’s smart for the FDA to be cautious about it, as it carries some risk, but their recent policy change is idiotic and obstructionist.

    Helminthic Therapy, a very effective treatment for autoimmune disorders, is blocked even more strongly by the FDA, and leads to still more suffering.

    Why are we so slow at accepting and implementing treatments that obviously work?

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  27. Tony says:

    Did my own in 2007 following a procedure from a medical journal article from Australia. Mostly Colitis free for about 5 years now.

    See http://groups.google.com/group/hpit

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  28. vklj says:

    I don’t really get why fecal transplants are more gross than blood transfusions or inseminations. It’s not like you have to eat it, afterall.

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  29. Pete says:

    I enjoyed reading this article and learned some things about fecal transplant even though I have studied it for many months now. I did a review of the literature of fecal transplants and included some doctors that are doing it in the United States. I plan to read all 600 pages of the FDA transcript and write a post!

    http://crohnszone.blogspot.com/2013/01/fecal-transplant-cures-c-difficile.html

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  30. Janis says:

    I can see how it would be much easier to use actual donated poop than to try to artificially make something that humans crank out in volume every day, and which we KNOW has been tested in situ by the donor, who is presumably walking around full of the stuff and in rude health.

    Also, artificially culturing gut flora runs the risk of creating a sort of intestinal version of kudzu, where one bacterium in the donor’s system is only beneficial when in context with all the rest of that ecosystem, but when placed alone into another environment, it could run rampant. A piece of poop really is its own little ecosystem, and we already know what happens when we try to separate out the individual components of an ecosystem and treat each as independent and disconnected: kudzu, rabbits and cane toads in Australia, pigs in Hawaii, etc. You just don’t pick one or two members of a whole biome out of context and put them someplace where they are alien, not without risk.

    Far, far better and safer to take a piece of a single, road-tested, complete ecosystem than to culture a fake, disjoint version that still requires decades of testing. Sure it’s gross, but if you’re at death’s door, I imagine you stop caring about grossness.

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    • Beth Skwarecki says:

      I can see both sides here. When you’re transplanting a whole ecosystem, you don’t necessarily know what’s in it. Are there really different enterotypes, and does it matter which one you get? If gut microbes influence mental health, obesity, cancer, and more, could you be putting yourself at risk for those conditions? If so, it could be hard to find an optimal donor.

      On the other hand, I see the synthetic stuff as dangerous, too, for the reasons you describe. But if the purpose is just to sort of press a ‘reset’ button and get the patient to re-grow their own healthy, personalized flora, maybe all you need to do is shake things up a little and the ecosystem will re-establish itself? (I actually reported on a real-world version of this in a rainforest: planting a few seed species in a deforested area resulted in many more species joining it within just a few years.)

      A possible middle ground is to use a small number of donors (some docs use a single donor or a small pool); there are also at least two startup companies working on providing consistent, pre-screened feces as a product.

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