One afternoon in October, a skinny 6-year-old boy in navy Crocs plodded into a nondescript Tampa clinic clutching a stuffed monkey. His mom followed him in with a big bag of toys.
Like an estimated 70% of kids with autism, Luke was a picky eater who had been battling an achy tummy, a yeast infection, and chronic constipation for years. He had tried antibiotics, gluten- and sugar-free diets, and therapy. Nothing worked. So now his mom, Julie, was about to try a last-ditch procedure.
Luke lay on his side on a cushioned exam table while his mom held his arms and kept him from squirming. A clinic technician plunged a syringe into a box next to the sink, pulled up a small volume of a brown, smoothie-like liquid — human feces — and pushed it into his colon through a catheter tube.
Luke scrunched his legs together, and Julie soothed him: “Good job, buddy.”
Five minutes later, Luke was off the table and back to his energetic self, playing with a Toby the Tram Engine, chewing on a rubber toy, squatting on the floor, and slinking out into the hallway when his mom’s back was turned.
For Julie, this was a rare moment of relief. This infusion of “healthy” bacteria from someone else’s poop could heal Luke’s gut, she hoped, and maybe even spur him to speak a full sentence for the first time.
“I'm happy we're at this point where we can actually do this,” she said later that afternoon. “I think it's going to help us quite a bit.”
A spate of studies over the last decade have convinced microbiologists and doctors that “fecal microbiota transplantation,” or FMT, works for at least one disease: a deadly bacterial infection in the gut known as Clostridium difficile, or C. diff. No one knows whether the procedures work on other conditions, though dozens of clinical trials are testing them on people with irritable bowel syndrome, Crohn's disease, obesity, diabetes, epilepsy, autism, and even HIV.
The science is advancing rapidly, with more and more scientists excited about the potential and potency of fecal matter and the microbes in it. The FDA regulations on these procedures, however, keep them out of reach for most patients: Since 2013, the agency has banned doctors from doing fecal transplants on anything except C. diff.
It’s difficult, and perhaps futile, to control a “drug” that’s so abundant, free, and 100% natural.
This rogue clinic in Tampa has found ways around the rules. Although the FDA could technically shut it down, hit it with fees, or even pursue criminal prosecution, the clinic has decided it's worth the risk. So far, an FDA spokesperson told BuzzFeed News, it “has not taken action to date against any clinic or doctor.”
Even some critics of poop clinics are sympathetic to the FDA’s plight: It’s difficult, after all, and perhaps futile, to control a “drug” that’s so abundant, free, and 100% natural. Experts estimate that tens of thousands of people worldwide have already figured out how to get access to the treatment, and are eagerly sharing the information with others online.
In a YouTube video that has been viewed 92,000 times, for example, a mom with a blender in her bathroom demonstrates how she prepared a transplant sample, using her own poop, for her daughter. In private Facebook groups, people solicit samples from young donors, and trade tips about battling side effects and diet swings. One Reddit user, LuckyJenny, shared that their wife “reported having a Dunkin' Donuts medium latte and a double chocolate donut prior to donating ‘the specimen.’”
Raphael Lataster, a theology student at the University of Sydney and a member of one of the Facebook groups, told BuzzFeed News that he’d spent more than $7,000 getting 10 transplants at a clinic in Sydney. The good news was that he’d been feeling leaner and fitter since the transplants. The bad news was that it had not fixed the problem he was hoping to solve: “I was desperate to be cured of my dandruff.”
Many doctors and scientists, however, are wary of these experimental procedures, seeing them as a money-making racket for any condition other than C. diff. No one knows the long-term effects of co-opting someone else’s bacteria. It could well be dangerous: Poop from an unscreened stranger could carry serious infections, like hepatitis or gonorrhea, or dormant viruses.
“If you start having a lot of this craziness,” said Colleen Kelly, a gastroenterologist and assistant professor of medicine at Brown University, “something's going to happen to a patient, or there will be some infection transmission or some bad outcome and that's going to really delegitimize the real value to this treatment.”
These poop-filled pills sometimes replace transplants by enema or colonoscopy and are made at the clinic.
Nidhi Subbaraman / BuzzFeed News
Ever since Luke was a newborn, he often refused to eat, and was consistently underweight. Julie felt like she was failing her fundamental responsibility as a mother. “It was just very hard for me that he didn’t eat,” she said.
Just before Luke turned 1, Julie and her husband moved from Maryland to Tampa. Julie struggled to find a support system, and the right kind of medical help. Once, when she asked a speech therapist if Luke might have a swallowing problem, the doctor turned her focus from Luke to his mother. “They told me to take a feeding class,” Julie said. She was crushed, and felt chastised.
The family lived by Tampa Bay, and Luke enjoyed feeding the ducks. One of his first words, at about 18 months, was “quack.” He didn’t say many more.
He was also fiercely stubborn: He wouldn’t eat a banana unless Julie gave it to him whole. At the Gymboree play area, when the Gymbo puppet was put away, the toddler would cry without reprieve. By the time he was 2, he had stopped making eye contact.
Julie and her husband put Luke in speech therapy, but avoided getting an evaluation for autism. Julie couldn’t fathom the idea that her son might never talk. “Autism was very scary for me,” she said. “It was terrifying.” They eventually got a diagnosis in 2012, before Luke turned 3.
That’s about when he began getting intense bouts of constipation, often going a week or even 10 days without a bowel movement. At a National Autism Association conference in St. Petersburg in 2014, Julie met Scott Smith, a local physician assistant who suspected that Luke had a yeast infection. Smith’s tests later confirmed an abundance of Clostridium bacteria in the toddler’s gut, along with yeast.
Julie felt a wave of guilt for not catching it sooner, or finding a doctor who could. But she was also relieved that finally, someone understood the struggles she faced with Luke.
Julie first heard about fecal transplants from her friend Bonnie, who had a young daughter with autism and had also consulted with Smith. Bonnie had considered fecal transplants for her daughter, but ultimately didn’t try them. She did give the little girl antibiotics and antifungal medications. After a few months taking these drugs, the girl started talking — a transformation that Julie later watched, astonished, on a video recording Bonnie sent her.
Maybe Luke’s autism, Julie thought, was connected to the bacteria in his gut.
Dr. Shepard in his Tampa office.
Nidhi Subbaraman / BuzzFeed News
Gastroenterologist Roland David Shepard sees patients at the Tampa clinic where Luke got his first fecal transplant. The tidy, one-story building sits on quiet, leafy street, with an acupuncturist on one side and an allergy clinic on the other. Shepard’s is among a handful of clinics in the US where anyone curious about poop transplants can get walked through the procedure, even if they don’t have C. diff.
Shepard, who also sees patients for routine colonoscopies and general GI queries, estimates that he’s done a few hundred fecal transplants since 2010, when he tried it for the first time at a patient’s request.
“This has been the most rewarding part of my practice,” he said one afternoon in October, leaning against the exam table in an empty room. “Some of the people who come in are gray — they look like skeletons. If you see them again a month later they’re totally different people, with a smile on their face. It doesn’t take too many of those to see why we do this.”
Shepard usually sees four or five cases of C. diff every week. He will initially consult with these patients in the clinic, but fecal transplants happen at one of two endoscopy centers in Tampa, set up to do colonoscopies under anesthesia. He drives there with the freshly made sample stashed in a cooler in the back seat.
For patients with any other illness, however, those centers won’t do fecal transplants, complying with FDA rules. So Shepard and his team will show new patients, like Luke’s mom, how to do an ever-so-slightly modified version of the procedure themselves, without anesthesia or colonoscopy, and sell them prepared poop samples. Then the patients go home and repeat the procedure, typically buying fresh supplies every month.
Shepard argues that this is not a transplant, but a “tutorial” or “instructional infusion,” and therefore does not violate FDA rules. (Patients entering the clinic sign a form affirming that they, assisted by the doctor or staff, will “self-administer” the procedure.) “The main thing is that we’re teaching, behind the door, we’re teaching,” Shepard said.
His clinic is owned by Florida Medical Clinic, a company that runs multiple medical facilities near Tampa. But because of concerns over the regulatory gray zone, Shepard said, he bills his transplant work through a Florida LLC, RDS Infusions, that is separate from Florida Medical Clinic.
A colonoscopy for patients with C. diff is $675, plus fees to the endoscopy center, and three office tutorial sessions cost about $1,000. Shepard said that these rates just about cover the costs of testing donors, buying equipment, and paying his staff for the work. Last year’s revenue was “above a break even point, but it wasn’t much over that,” Shepard said. And if the price is too high for a family, he said, he sometimes does the procedures for free.
(The CEO of Florida Medical Clinic, Joe Delatorre, confirmed through his executive assistant that he is “aware and supportive of Dr. Shepard’s Fecal Transplant program, and this program is conducted separate from FMC.”)
A handful of other clinics in the US are willing to help patients get fecal transplants, but take a more conservative approach. The Bright Medicine Clinic in Portland, Oregon, for example, offers “counseling” for patients with irritable bowel diseases who want to try the procedure on their own at home. It’s a way to lower the risk for patients who are determined to try it anyway, the clinic founder said.
“There are all kinds of crazy stories of people who are doing FMTs at home with unscreened stool or animal stool, using material that may not help them in any way,” Mark Davis, a licensed naturopath who built the Bright Medicine Clinic practice in Portland and now practices in Maryland, told BuzzFeed News.
Davis believes that, for many patients, the benefit of these procedures outweighs the risks. So he will screen poop donors for medical conditions, he said, and has drawn up a hygienic protocol for DIYers who want to try it at home in the safest way possible.
Scientists and doctors know quite a bit about the effect of fecal transplants on gut woes like Crohn’s disease and ulcerative colitis. But other conditions are less understood. Although there are links between gut bacteria and psychiatric disorders, for example, no one knows for sure whether fecal transplants will reliably offer relief.
There’s been one published study of poop transplants for autism.
There’s only been one published study of poop transplants for autism, out this January, involving just 18 children with an autism diagnosis and gut problems. Half the group received prepared fecal samples orally, mixed in juice or milk, thrice a day over two days; the other half had the transplant by enema. Then they all drank a more dilute mixture once every day for eight weeks. The groups were then monitored for two months.
By the end of the study, most of the kids had fewer digestive symptoms like constipation and indigestion, and most also showed improvements in their communication and social behaviors. The study found no adverse effects related to the fecal transplants.
“We saw that it was remarkably safe,” said James Adams, who heads the autism research program at Arizona State University and led the study. Still, the trial was small, and the treatment was not compared to a placebo.
Despite the dearth of evidence, Shepard has no doubt that poop transplants help kids with autism. He said he has seen between 100 and 200 cases of autism, and heard from many parents that fecal transplants do wonders for digestive symptoms.
Has he seen the changes in children himself? “Oh, absolutely,” he said. Patients kept ordering prepared samples — they wouldn’t be doing so, he figured, if it didn’t work.
There is perhaps no one who understands the growing demand for poop better than Catherine Duff. The 61-year-old mother of three is a transplant veteran.
“When I had to do my own with my husband, there weren’t any videos on YouTube,” she said, recounting her ordeal over cinnamon rolls at a café in the Virginia suburbs.
Duff did her first transplant in 2012, when she was dying from the bacterium Clostridium difficile, her seventh infection in as many years. She was in constant pain, could rarely keep meals down, and was bedridden from incessant diarrhea.
Nidhi Subbaraman / BuzzFeed News
Her daughter Caroline, a lawyer, stumbled across a Grey’s Anatomy clip that described fecal transplants. She printed out a few studies on transplants she found online, along with a protocol a DIYer had posted, and offered the pages to her mom’s doctors at the hospital, begging them to try it. When they refused, Duff went home, figuring she didn’t have much to lose. Her husband had his stool tested for infections, and a few weeks later, lying on her bed with the bottom elevated on risers, she received a homemade enema with a slurry of his poop.
Within a day, she recalled, she was out of bed and joining her husband for a meal at the table. The chronic diarrhea and pain vanished, and her energy returned. Her rebound was so successful that when she contracted C. diff again, six months later, she was able to persuade a doctor to do a fecal transplant at the hospital.
She couldn’t stop thinking about the thousands of other C. diff patients who couldn’t get a transplant — “this easy, low-risk way to save their lives.” So she founded a nonprofit, the Fecal Transplant Foundation, to advocate for patients who were having trouble convincing doctors to do the procedure. She also started a private Facebook group for people contacting her with questions.
At first, Duff only heard from people infected with C. diff. But over the years, she received more and more queries from patients with conditions that are not typically associated with the gut.
“The science seemed to really explode,” Duff said. In the past few years, scientists have linked the trillions of bugs in our digestive tissues — the gut “microbiome” — to everything from autism to cancer to depression.
Now everybody has heard of the microbiome, and lots of sick people are wondering whether their problem could be gut bacteria. Every day, Duff fields dozens of phone calls, emails, and texts from strangers asking which doctor she recommends for the procedure, where they can find equipment online, or what they should do about their father-in-law’s trouble with gas.
She responds to as many as she can, though has grown increasingly worried about some of the things these DIYers have tried putting in their colons.
“People are doing kefir enemas!”