- Faecal transplants, or faecal microbiota transfers (FMT), involve putting a healthy donor’s faecal matter into a patient’s colon.
- The procedure is only FDA-approved (in a medical setting) to treat Clostridium difficile, but people with everything from food allergies to IBS are doing it themselves with the internet’s help.
- On Facebook, YouTube, and Reddit, people are swapping tips on where to find “good donors” and concerns about side effects like terrible gas.
- DIY FMTs aren’t recommended by medical doctors because there’s not enough evidence to show they’re safe or effective, and donor stool needs to be expertly screened to prevent causing disease, rather than curing it.
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Some people turn to YouTube to learn how to paint the perfect “cat eye” with eyeliner, for furniture-assembling guidance, or to learn a new nighttime routine.
Then there are the people who use it to learn how to find a donor with high-quality poop, create a “slurry” of faecal matter, and insert it into their rectums.
The procedure, known as a faecal microbiota transfer (FMT), is approved by the US Food and Drug Administration, in medical settings, to treat recurrent Clostridium difficile infections (CDI), a chronic bacterial infection that can destroy the colon and even kill its victims.
But early research suggests the treatment also holds promise for other bowel conditions like ulcerative colitis, as well as obesity, autoimmune disorders, and neurological diseases. It’s also advertised on the internet, with scant evidence, as a way to treat any chronic illness and even to lengthen your life.
And a growing internet community, tired of waiting for research to catch up, is turning to YouTube, Reddit, and Facebook to learn how to administer it on themselves, including by using a blender, a strainer, and typically an enema bottle.
DIY FMT videos, made mostly by people who’ve done it themselves and want to share what they have learned, garner thousands of views, and internet communities including private Facebook groups are flooded with people swapping tips for using FMT to treat everything from bipolar disorder to Lyme disease.
But despite hundreds of anecdotal reports of success, conventional medicine doctors warn the at-home approach is risky because there’s not enough science to show it’s safe and effective for most of the conditions people are aiming to trait. And plugging forward can mean that rather than gaining good bacteria, you could acquire some that’s bad, or even deadly.
DIY FMT circles thrive in not-so-secret corners of the internet
At-home FMT is not new, but it’s a movement that “absolutely” continues to grow, Dr. Colleen Kelly, a doctor and researcher at Brown Medicine Gastroenterology and Liver Research, told Insider.
YouTube has been hub a for some of the pivotal DIY FMT explainers that have garnered thousands of views.
In 2013, for example, a man named Michael Hurst demonstrated how, he says, FMT cured his ulcerative colitis. He lays out all the tools, including rubbing alcohol, a rectal syringe, a blender, and a jug of water. Using a chocolate-covered banana to represent stool, he shows viewers how to blend it with water, then load the syringe, and insert it laying down on a garbage bag.
In 2017, Davide Patti, who has a master’s degree in chemistry and does “independent research” on FMT, uploaded his own tutorial which takes a more academic approach, with a 47-minute, densely bulleted PowerPoint presentation.
Today, YouTube traffic on the matter has stagnated, perhaps as YouTube has boosted efforts to tamp down on the spread of health information that could be damaging. But other internet circles like Facebook groups like and Reddit threads, however, thrive.
One Facebook group with more than 4,000 members, many of whom have done FMT at home and plenty of others who’ve undergone it in medical settings for C. diff or as a part of a clinical trial, has a handful of new posts a day, each which typically draw dozens, sometimes hundreds, of replies.
In addition to sharing FMT-related research and articles, members seek donor referrals (“This donor in Europe has perfect blood tests, healthy habits, and hasn’t used antibiotics”), boast their successes (“I haven’t felt this good in decades!”) beg for validation that FMT is right for them or their children (“Please tell me a success story of treating autism with FMT”), and commiserate over side effects (“Has anyone else had terrible gas?).
In her recent research including 84 people who’ve done FMT at home, Kelly found that while half of DIY-ers said they received health or advice from a medical professional, 87% also said they figured out how to do it via the internet.
“These people are like, ‘Why am I going to wait five years for a drug to become available?'” Kelly said.
Many people who’ve done at-home FMT are happy with the results – but researchers insist it’s risky
In her research, Kelly and colleagues found that the most common conditions people tried to treat were inflammatory bowel disease (which includes ulcerative colitis and Crohn’s disease) and irritable bowel syndrome.
“If somebody is late in disease, often they have tried the traditional medical route, every medication out there, they have been on and off steroids and are unable to get back into remission,” said Mollie Parker Szybala, a naturopathic doctor in Idaho who’s worked with the first physician in the United States to provide oral FMT capsules and now counsels people on at-home FMT.
“They have run out of options and the only thing remaining for them is to have their bowel or rectum removed,” she told Insider.
A lack of access to medical care also seems to push people toward DIY treatments, even attracting people with CDI who could go to a doctor to receive it. Some 33% of the DIY FMT-ers that Kelly spoke to said their healthcare provider doesn’t offer the treatment and 10% said their insurance doesn’t cover it. Some said they thought it would be cheaper.
One respondent said: “It seemed [my] last hope to live.”
And the uncomfortable truth is, it often works, at least according to people who’ve tried it.
Kelly’s research found that 82% of participants said it helped the condition they were trying to treat, and only 12% reported negative side effects like stomach pain and bloating – expected symptoms even if the treatment is performed in a medical setting.
A whopping 96% of respondents said they’d do it again, and many of them already had: 43% said they had performed more than 10.
“There’s this strong placebo effect: ‘I did something that’s supposed to make me feel better and now I’m more in control,'” Kelly said. “It’s tough to know what’s going on.”
Going rogue can mean implanting another disease and getting sicker
At-home FMT is an unusual medical phenomenon. This isn’t people getting hold of pharmaceuticals to use off-label. In this case, the treatment – someone else’s poop – is everywhere, in some cases free, and otherwise going to waste.
But it is also different in everyone, and changes day to day, and that lack of uniformity that makes going the DIY route especially risky. While medically-supervised FMTs use rigorous screening methods to ensure donor stool is safe, it’s tougher for laypeople to do the same.
“Our stool is a mixture of our undigested waste, the beneficial microbes needed to keep our guts healthy and whatever bacteria, fungi, and viruses we’ve picked up in our busy lives,” Dr. Amy Shah, a gastroenterologist in Maryland told Insider.
“So if you use faeces from a donor, this donor should be screened for pathogens like viruses, fungi, and bacteria, that might make a sick recipient sicker.”
The starkest example of this is a man who died last year from the e. coli he contracted from a faecal transplant, and even that was done in a medical setting.
Many internet resources, including Patti’s, encourage people attempting at-home transfers to send their donor’s stool for screening or to use stool from an established donor whose medical information and test results are known.
But sending out stool samples for testing is expensive (“easily” $US1,000, Szybala said), and paying a donor for his or her “service” and having it shipped – sometimes overseas – can cost just as much, which can defeat the cost-saving benefit some people are seeking when the skirt the medical system.
Plus, testing isn’t fool-proof, especially since every bowel movement, even from the same person, is different, and a donor’s stool that works well in one person might not in another.
“We’re still unable to guarantee you won’t contract something from it,” even if you do get it screened, Szybala said, adding that she chooses to counsel people on DIY FMTs rather than release them to the internet, which is “full of misleading information.”
For Kelly’s part, she tries to direct patients interested in “off-label” FMT to established medications or clinical trials where their FMT can at least be medically supervised. Outside of screening issues, of course, the at-home route is worrying because it’s being used to treat conditions for which it has little scientific backing when other treatments do.
Drugs like those for IBS “have been around a long time, and they’re helping a lot of people,” Kelly said she tells patients. “I make sure they’re not being overly dismissive of conventional medicine.”
If you’ve done FMT at home and would like to share your experience, email [email protected]
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