Meet The People Doing Poop Transplants The Government Doesn’t Want Them To



The FDA has banned doctors from performing poop transplants for
most illnesses. But a Tampa clinic is teaching the procedure to
desperate patients with a variety of gut troubles — even kids
with autism.

Posted on June 28, 2017, 09:01 GMT

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.”

Nidhi Subbaraman / BuzzFeed News

These poop-filled pills sometimes replace transplants by
enema or colonoscopy and are made at the clinic.

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.

Nidhi Subbaraman / BuzzFeed News

Dr. Shepard in his Tampa office.

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!”

“It’s like a wild west: ‘I’m gonna use my 4-year-old’s
[poop], I’m gonna get my dog’s poop,’” Duff said. Breast
milk, goat milk, kimchee, coffee, pickle juice. “People are
doing kefir enemas!”

Duff’s Facebook group hovers at just over 1,000 members. Most
of the posts ask about members’ transplant experiences, like
how quickly they found relief, or if anyone had experienced a
certain side effect. Sometimes people make specific requests:
Someone wanted poop samples near Santa Fe, a woman with
chronic fatigue was looking in Seattle, and a Las Vegas
resident wanted poop gluten-free. Sometimes members simply
announce that they are about to try the procedure, as a call
for moral support. Duff tries to remind everybody that donors
need to be tested for infections first. And she does her best
to prevent people from passing on amateur medical advice.

Duff is troubled by the fact that, partly because of the
FDA’s restrictions, wealthy people are far more likely to
gain access to the procedure. They can fly to clinics in
Argentina, the Bahamas, the UK, or Australia. But people who
rely on medical insurance aren’t likely to coverage for the
experimental procedure — even if they are C. diff patients
who can convince a doctor to do it.

“One woman in one of these groups, her car has been repo’ed,
her TV has been repo’ed, all because of C. diff,” Duff said.
“And now she is having trouble arranging for rides just
getting to her appointments.”

Because of her own experience, Duff empathizes with those
resorting to repurposed kitchen tools and poop donated by
strangers. “Unless you can get into the clinical trials for
some of these other conditions, people really have no
choice,” she said.

She has mixed feelings about the Tampa clinic and others like
it. She doesn’t like the idea of skirting medical
regulations, but knows better than anyone that it’s the only
way for most people to access the treatment. “I try to be
Switzerland on that,” she said.

Nidhi Subbaraman / BuzzFeed News

Clinical assistant Helena Lebron stands at the freezer
where samples are kept until ready for preparation.

When the Tampa office first started doing fecal
transplants, Shepard made the samples himself, adding bottled
water to stool and mixing the two in an electric blender. He
also made poop capsules, by filling empty pill shells with an
eyedropper, for patients who needed a transplant but were too
sick to travel.

These days, his clinic’s poop is prepped by Helena Lebron, a
clinical assistant and steward of the “Transplant Room,” a
fluorescent-lit exam room with a sink, freezer, and private
bathroom. This is where she shows patients how to perform an
“infusion” — a poop transplant delivered through a clear
plastic catheter that travels a few inches into the rectum.

Lebron has worked at the clinic for six years, and has been
preparing fecal samples for about three. The morning Luke
came in for his transplant, she slipped off her finger rings,
dropped them into the pocket of her nurse’s smock, and
snapped on a pair of lavender disposable gloves.

A Tupperware box from the freezer was thawing in the sink.
She extracted her tools from a cabinet underneath: a white
collecting tub, a bigger vessel to act as a lid and to
prevent splashing, a wire strainer, and a handheld mixer with
twin metal attachments.

The metal blades hitting the frozen turd sounded like a
drill. The smell enveloped the bathroom, then crept into the
adjoining exam room. Lebron barely noticed.

Nidhi Subbaraman / BuzzFeed News

The Tampa office gets its stool samples from three donors.
One is Michael Garcia, a goateed 27-year-old fitness trainer
who will go to graduate school for physical therapy in the
fall. He found out about it through his cousin, who works
with Shepard.

Garcia does his best to keep his samples pristine, eating
mostly complex carbs like brown rice and quinoa, and lean
meat like fish and chicken breasts. He’s sworn off junk food
and almost never drinks.

“I know it’s helping people so I have that in my head — I
have to do this the right way,” he said.

Garcia collects a sample about once a day. He simply squats
holding a Tupperware jar in position, then puts on the lid
and throws it into a separate freezer he has reserved for
poop tubs. He drops off between four and six frozen samples
about once a week, and gets $40 for each. Every year, he
estimates, he makes at least $7,000 on these donations, money
he plans to put toward grad school.

One of the clinic’s other donors is the 14-year-old daughter
of two Shepard employees. She wants to be a competitive
dancer, so exercise and strict diet are part of her lifestyle
anyway.

Lebron has done the procedure often enough that she can tell
the donor from the sample. Nodding to the tub in the sink,
labeled “MG,” she said, “I know he does a lot of rice and
beans.”

He drops off his frozen samples about once a week, and gets
$40 for each.

As the mass melted, Lebron held a wire strainer over a
collecting box with one hand and swirled the tub containing
poop with the other. Then she poured the liquid through,
revealing a tattoo in the shape of an EKG pulse running up
her forearm. “We really want it to be kind of thick, like a
milkshake, or maybe even thicker than that,” she said, adding
a little more water into the bowl.

Lebron aims for just over 40 milliliters of filtered product.
After about 45 minutes of drilling, swirling, and straining,
she closes the lid and the white tub disappears into a
cooler, due to be deposited into a patient that afternoon.

Lebron wiped down the basin and platform with napkins soaked
in hand sanitizer. Before the equipment disappeared under the
sink, she flashes the name of the model: Hamilton Beach.

“Same thing you make your mashed potatoes with,” Lebron said.
“Needless to say I make mine by hand.”

Later that afternoon she made another sample. That one was
for Luke.

Nidhi Subbaraman / BuzzFeed News

A frozen sample at Dr. Shepard’s clinic.

The FDA didn’t weigh in on poop transplants until May
2, 2013, when the agency announced it would consider the
procedure an “investigational new drug” — the same label it
gives to experimental pharmaceutical medications. That was a
big problem for patient advocates like Duff, because it
suddenly meant that any C. diff patient getting the procedure
at a hospital had to first enroll in a clinical trial.

The announcement was also surprising to the scientific
community because of a landmark Dutch study that had just
come out. In a randomized
control trial of 43 C. diff patients, researchers showed
that fecal transplants offered relief 94% of the time. The
researchers were so stunned by the results
they stopped the trial early, arguing that was unethical
to keep the poop treatment from people who could benefit from
it.

The FDA made the announcement at a two-day workshop on poop
transplants, attended by about 140 doctors, scientists, and
other transplant experts, including Duff. When she heard them
describe the new regulation, she felt a panic attack coming
on. She persuaded the workshop moderator to give her the
microphone between speakers.

Duff doesn’t remember exactly what she said, but she
tearfully begged the agency to reconsider. In written
comments to the FDA later on, doctors and policymakers backed
her up: Such a stringent regulation, many wrote, would keep
the procedure from saving dying patients.

Two months later, in July 2013, the FDA
clarified its position on fecal transplants: The agency
would allow doctors to perform the procedure on patients with
recurrent C. diff. But anyone else would need to enroll in a
formal clinical trial.

Nearly four years have passed, and the science is moving
fast. Many studies suggest that chronic GI diseases like
Crohn’s disease and irritable bowel syndrome could be helped
with fecal transplants (though trials indicate that success
might depend on the choice of donor and a longer course of
treatment). Stool banks like OpenBiome in Boston have sprung
up to furnish researchers with a steady supply of prescreened
frozen poop. But the FDA’s stance has only become more
restrictive. In 2016, it
proposed an effective ban on doctors buying samples from
stool banks.

Some scientists and legal experts have suggested that poop

be
regulated like a tissue — something that was derived from
the body, and therefore subject to less stringent regulation
than an artificial substance. A handful of startups and
pharmaceutical companies
are attempting to identify and isolate active bacterial
species, and turn them into poop pills, but only two of

those
attempts are being expanded into large-scale trials. No
one has yet been able to distill the combination of
ingredients in some people’s poop that has such a seemingly
miraculous effect.

It’s unlikely that the FDA will change its position until the
messy procedure is replaced with such a pill. Once that
happens, some experts expect the FDA will probably shut down
poop transplants. That’s Rachel Sachs’s bet, anyway.

In two cases, the procedure reversed “alopecia”: Bald
patients grew back some of their hair.

“We don’t actually know because in some ways it’s without
precedent,” Sachs, a professor of law at Washington
University in St. Louis, told BuzzFeed News.

Some doctors wish the FDA would better enforce the rules
already on the books. Take Colleen Kelly, the
gastroenterologist at Brown, who was one of the first doctors
in the country to offer the procedure. Kelly said she has
done about 350 procedures on C. diff patients since 2008. For
other infections, she thinks it’s time to hit the pause
button on clinical use: No one knows why poop transplants
work, which bacteria are key to their success, or what the
long-term consequences may be.

“I want this to be legitimate. I want this to be
scientifically driven, I want it to be data driven, I want it
to be done right,” she said.

She’s seen some weird outcomes herself. In a
case report published in 2015, for example, she described
how a patient had ballooned from 136 pounds to 170 pounds in
the year and a half after a poop transplant. In two other
cases, the procedure reversed “alopecia”: Bald patients grew
back some of their hair.

In 2016 Kelly and others
launched a study in which 4,000 patients with recurrent,
antibiotic-resistant C. diff will undergo the procedure and
then be watched for 10 years. Until that data is collected,
she thinks doing the procedure on other conditions is
premature, and that clinics like Shepard’s cross an ethical
boundary she holds sacred. It’s why she hasn’t done the
procedure on people who don’t have C. diff, though plenty
have asked her to.

“I never wanted to be a snake oil salesman,” she said. “To
me, doing it for these other indications is like researching
on a person without their consent.”

Pete Ryan for BuzzFeed News

Julie and her husband knew that the FDA hadn’t
approved poop transplants, and weighed their options
carefully for at least a year. When Luke, at 6, was still
nonverbal and beset with a gut infection that antibiotics
couldn’t kill, they decided he had more to gain than lose
from the $1,100 procedure.

“I know it’s not approved, but I don’t see how healthy
bacteria can hurt somebody,” Julie said. “It seemed like a
better option to me than medication that causes side
effects.”

At Julie and Luke’s first visit to the Tampa clinic, the
technician Lebron performed the infusion while Julie watched
closely. Julie then returned twice later that week and did it
herself, while Lebron watched. She wanted to be comfortable
with the steps when she recreated the process at home in
Orlando, using frozen stool shipped from RDS Infusions.

For about six months, RDS shipped the family samples from its
second facility in Atlanta, on dry ice, in batches of eight.
(It costs the family $320 for eight samples, plus $100 for
shipping.)

Three nights a week, Julie would set out a sample to thaw for
about an hour. Then she and her husband would take Luke
upstairs to bathe. Afterward, she laid a waterproof mat on
the floor of his bedroom and flicked on a white-noise
machine. As the room filled with the simulated sound of
crashing ocean waves, Julie would repeat the procedure she
learned at the Tampa clinic.

“I know it’s not approved, but I don’t see how healthy
bacteria can hurt somebody.”

Things went smoothly for the first six weeks. Luke was
pooping regularly, and though he was uncomfortable during the
transplant itself, he seemed to feel better afterward.
Sometimes, Julie let him push the plunger on the syringe so
he felt like he had control.

But then one day, after eating a popsicle, Luke didn’t poop
for 10 days. Julie freaked out. “That’s how it had been when
he was 3 years old.”

So in addition to the transplants three times a week, she
started giving Luke poop pills — she had bought a batch of
Shepard’s formulation from the clinic — on days that he
wasn’t getting the bacteria by enema.

At a new school in Orlando, Luke was keeping up. But by the
end of March, Julie found it harder and harder to steel
herself for the procedure every night. “I’m giving him these
enemas like three times a week. It’s not probably a normal
thing.”

So in early April, she decided to stop. It seemed Luke, who
was growing increasingly fidgety during the procedure, had
had enough too.

In some ways the transplants made a big difference: Luke is
no longer chronically constipated and seems to be in better
spirits as a result. “I would say that he’s going now every
other day and I feel like it’s a good improvement,” Julie
said. After the school year ended, he even went to a summer
day camp.

She stands by her decision to choose what she considered the
more natural option over the antibiotics Luke was previously
taking. “I want other people to be able to choose what they
think might be best,” she said.

But the speech signs Julie was looking for never surfaced. “I
wish I’d seen more,” she said in April. But she hasn’t lost
hope that things will change. “I feel like there’s a lot more
to come from him.” ●

Nidhi Subbaraman is a Science Reporter for BuzzFeed News
and is based in Washington, DC.

Contact Nidhi Subbaraman at nidhi.subbaraman@buzzfeed.com.


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