Regardless of the reasons for our collective disgust, the fear of losing a loved one may be an effective antidote. In fact, doctor after doctor agrees that most patients with a serious gastrointestinal condition – and their families – are beyond caring that a little more faeces may be involved in a therapeutic intervention; they’ve already been through far worse.

Antibiotic resistant

Catherine Duff is deathly afraid of two things: public speaking and crickets. Poo, however, has long since ceased to disgust her. “That dissipates so quickly when you’re dying,” she says. Since 2005, she has had C. diff. eight times. The first six times, it responded to antibiotics. Then it didn’t. “My colorectal surgeon gave me the choice of having my colon removed or dying,” says Catherine, 58, from Carmel, Indiana. She had already lost a third of her colon and wasn’t about to give up any more.

With every bout of diarrhoea and vomiting, she felt the life draining out of her. “I had basically resigned myself to the fact that I was going to die.” Then one of her three daughters, a corporate tax attorney, came across the research of an Australian gastroenterologist named Thomas Borody. His group was recording astonishing results in C. diff. patients with a therapy called faecal transplant.

Catherine read everything she could and brought the printouts to her doctors. By then, she had eight specialists. Only two, an infectious disease expert and a gastroenterologist, had ever heard of the technique. Neither was willing to try it.

And so in April 2012, Catherine became part of a burgeoning DIY movement born out of necessity. Her husband, John, a retired submarine commander who had frequently spent months at a time submerged with 180 other men, readily agreed to be her faecal donor. “Nothing grosses him out,” she says. They convinced her gastroenterologist to at least have John’s poo screened for pathogens, and then found a recipe and protocol on the internet.

Catherine recalls taking the enema at 4pm. “By 7, I felt good,” she says. “It was almost miraculous how quickly I felt better.” The next morning, she took a shower and got dressed, put on make-up and went downstairs for breakfast, “things I hadn’t done in months,” she says.

Six months later, she had to undergo emergency surgery to correct a spinal cord compression caused by an old horseback riding accident. She came down with her eighth case of C. diff. before she left the hospital. But this time was different. This time, her colorectal surgeon agreed to try a faecal transplant using a colonoscopy – delivering the poo through a long, flexible tube inserted the length of her colon – and she became the first patient in the state of Indiana to undergo the procedure at a medical facility. “By the time I woke up from the sedation, I felt fine,” she says.

Officials at the US Food and Drug Administration (FDA) were increasingly feeling otherwise. Struggling over how to regulate the procedure, they labelled it a drug instead of a transplant in April 2013, a move that dismayed patient advocates and sharply curtailed the fledgling field. Providers wanting to continue treating patients would have to file an Investigational New Drug application, an arduous and time-intensive requirement that most individual physicians were ill-equipped to meet.

Lone voice

A month later, the FDA hosted a public two-day workshop on the therapy in Bethesda, Maryland. Catherine, who had just launched the Fecal Transplant Foundation to connect patients with providers and encourage more doctors to offer the treatment, was one of 150 participants. When she scanned the list of attendees, she saw that she was the only patient. Midway through the meeting, she realised there would be no discussion about the impact from a patient’s perspective, and she knew she had to do something. So she wrote an impromptu speech on her iPad over lunch and tearfully begged the moderator to let her talk during the Friday afternoon session.

Just the thought of speaking to the entire group made her hyperventilate. But she signalled the moderator, as he had instructed, and her microphone lit up. Red. She began to tell her story, haltingly. “I was crying. I was so emotional and I was so scared.” She didn’t finish her speech, but it didn’t matter by then. She received a standing ovation from the doctors in the room. Afterwards, she found herself at the end of a reception line. “All of these doctors lined up to introduce themselves and to thank me,” she says. Within a few weeks, she had assembled the majority of her foundation’s board of directors and board of advisers.

Perhaps Catherine’s testimony helped sway the FDA. Perhaps it was the deluge of bad press that caught the agency off-guard as it struggled to balance the growing evidence of benefits with a highly variable and virtually unregulated practice that had flown beneath the radar. On 18 June 2013, the FDA bowed to pressure and partially reversed course, agreeing to exercise “enforcement discretion” for faecal microbiota transplants used to treat C. diff infections that weren’t responding to standard therapy. They wouldn’t be FDA-approved, in other words, but neither would they be prohibited.

Since the small victory, Catherine and her foundation have continued to push for more faecal microbiota transplant (FMT) clinical trials aimed at other digestive disorders, more research funding and more public awareness and education. She and a few board members who share her sense of humour have also begun crafting slogans that might eventually adorn T-shirts or sweatshirts. Her favourites? “Poop is the Sh*t!” and “Give a sh*t. Donate to the Fecal Transplant Foundation.” Her site also features an FMT awareness ribbon. It’s brown.

“It is what it is,” she says with a laugh. “There’s no way around what we’re talking about or what we’re dealing with.”

Despite the ubiquity of home remedies, including Catherine’s first DIY faecal transplant, she stresses that a medically supervised procedure is far more preferable, due to the potential for disaster in patients who do not properly screen their donors. Because so many patients are still struggling to find doctors willing to perform a transplant, however, Catherine is hoping to develop a more comprehensive online database of providers who can help.

‘You’ve got to be kidding’

The unassuming one-storey office building on the periphery of the Wellswood neighbourhood in Tampa, Florida – a discreet concrete box with windows constructed from privacy glass blocks – houses two gastroenterologist practices. One of them, RDS Infusions, is among the few places in the entire Southeastern US where people with C. diff. can go for treatment. The process begins at an endoscopy centre less than a mile away, where donor poo is inserted into sedated patients: up one end through a colonoscope and down the other through an endoscope that extends past the throat and stomach to the jejunum – the midsection of the small intestine.

Among the 60 or so C. diff. patients that have followed his directives, R David Shepard, a gastroenterologist in Tampa, says he hasn’t had a failure yet. Until the FDA forced him to put his ulcerative colitis programme on hold, he had achieved a success rate of about 70% for that condition, he says. Marion’s daughter was the first.

Cautious and unfailingly polite, Shephard describes his foray into a therapeutic field that he, like many other doctors, initially dismissed.“The thought of it was basically one of disgust and ‘Oh, I’ll never do that. You’ve got to be kidding’.”

Elaine Petrof, an infectious-disease specialist at Queen’s University and Kingston General Hospital in Ontario, says doctors in her specialty are often conditioned to associate infections with germs that must be eliminated. “Just conceptually speaking, pouring sewage into people doesn’t seem like a good idea, right?” she says.

The technique lingered on the margins of accepted medical practice for years because there simply wasn’t a great need for it, says Alexander Khoruts, a gastroenterologist and immunologist at the University of Minnesota in Minneapolis. That changed within the last decade, when C. diff. became an epidemic and a more virulent strain emerged from Quebec. Doctors now routinely encounter patients whose infections have stopped responding to all antibiotics.

For Petrof, the turning point came in 2009. After a woman’s recurrent C. diff. infection stopped responding to antibiotics, she began bouncing in and out of the intensive care unit. Every day, the patient’s relatives asked Petrof to consider a faecal transplant. “I thought, ‘This is crazy’,” she recalls. Then they brought her a bucket of poo.

“What completely floored me was the fact that within less than 72 hours, this patient, who had been having over a dozen bowel movements a day, basically completely turned around and at the end of the week walked out of the hospital,” Petrof says.

Ancestor hunt

Although most providers haven’t published their overall success rates, their self-reported results are surprisingly similar, and consistent with what published reports there are. Khoruts says he has achieved a success rate of about 90% after one infusion, 99% after two. Colleen Kelly, a gastroenterologist with the Women’s Medicine Collaborative in Providence, Rhode Island, has performed the procedure on 130 patients with recurrent C. diff., with a success rate of about 95%. Most of the transplants have taken after just one attempt.

For a relatively simple bacterial infection, Petrof says, the potential remedy may be fairly straightforward. “With recurrent C. diff. what you’ve done is you’ve basically torched the forest,” she says. Nearly everything has been killed off by the antibiotics, leaving very low bacterial diversity. “So the C. diff. can just take root and grow.” Adding back almost any other flora – the equivalent of planting seedlings in the dirt – could help the ecosystem keep interloping pathogens at bay.

For more complicated conditions, though, a simple faecal transplant may not be enough, at least with donors from the Western world. One hypothesis suggests that people in lower-income countries might harbour more diverse bacterial populations in their guts than those who have grown up in a more sterile, antibiotic-rich environment. And in fact, a 2012 study found that residents of Venezuela’s Amazonas State and rural Malawi had markedly more diverse gut microbiomes than people living in three US metropolitan areas. Scientists have already raised the idea that a rise in allergies and autoimmunity in industrialised nations may derive from a kind of collective defect of reduced microbial diversity.

“We cannot find people who’ve never been on antibiotics,” Khoruts says of his donors. For complex autoimmune diseases such as ulcerative colitis, faecal transplants may offer only a partial solution. And with some data suggesting that susceptibility may be linked in part to past antibiotic exposure, perhaps no Western donor can provide the microbes needed to fully reseed the gut.

Khoruts says it may be necessary to seek out ancestral microbial communities – the ones all humans hosted before the advent of the antibiotic era – within people in Africa or the Amazon. “It’s just a disappearing resource,” he says.

Thomas Borody, founder and Director of the Centre for Digestive Diseases in Sydney and a pioneer in the faecal transplant field, finds some merit in the notion that we should seek out a more natural human microbiome. Any donor-screening process, though, would have to account for endemic parasites and pathogens. And researchers, he says, still know very little about the components of this complex and variable organ that may derive its power not only from bacteria but also from fungi and viruses such as bacteria-infecting bacteriophages.

‘Everybody giggles’

Providers repeatedly stress the importance of careful donor screening. If an untested donor passed on a significant infection or condition, it could be devastating to the field as well as the recipient. With a growing body of evidence linking the microbiome to obesity, diabetes and allergies, Khoruts also worries about the potential long-term impacts of poo from a donor with those conditions. “At this point, I think science tells us to be very cautious with this material,” he says.

Building up a bank of super-donors has not been easy. Given the rigid selection criteria, Khoruts has disqualified about 95% of respondents. “It turns out that healthy people are rare,” he says. So far, 17 volunteers have participated in his programme, but only 10 are still actively donating.

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