man wearing rubber gloves and a nose peg during a DIY faecal transplant
Josiah during his DIY faecal transplant. All images courtesy of the interviewees. 
Health

How a Faecal Transplant Changed My Life

While it could help to treat IBS and potentially even alcoholism, doctors warn patients to leave the procedure to medical professionals.
October 12, 2020, 5:01pm

A version of this article originally appeared on VICE Italy.

The human microbiome is a beautiful thing. Recent studies have confirmed that the trillions of microorganisms living in our gut play a vital role in our physical and mental health – and while the research field is new, it’s also promising, because unlocking the secrets to a healthy microbiome could help us to treat conditions ranging from Irritable Bowel Syndrome (IBS) to potentially even alcoholism.

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If a happy gut makes for a healthy life, a sad microbiome can make it a living hell. For instance, Clostridium difficile (or C. diff) is a bacterial infection that can cause explosive diarrhoea up to 20 times a day, and even kill you. The condition is usually caused by excessive use of antibiotics and, as the Latin name suggests, can be extremely difficult to cure.

For decades, C. diff infections were treated with special antibiotics, with limited success – so researchers tried a therapy fighting fire with fire. A 2013 study found that Faecal Matter Transplants (FMT) are much better at treating C. diff than antibiotics. Also known as bacteriotherapy, FMTs are basically what they sound like: faecal matter donated by a healthy person is transplanted into someone with a gut bacteria imbalance. Since our stool is made up of 30 percent bacteria, a faecal transplant can boost a sick microbiome with someone else’s healthy gut bacteria.

The Gemelli Hospital in Rome is one of Europe’s leading FMT centres. Like most public hospitals, the Gemelli performs the treatment only on patients affected by C. Diff, following very strict rules. In Italy, the procedure is regulated by the National Transplant Centre, an institute that certifies the facilities allowed to perform organ transplants. Despite poo being more readily available than a kidney, the risks of the operation are high.

“I always joke that it’s easier to be a heart donor than a faeces donor,” says Dr Maurizio Sanguinetti, a microbiologist and director of the infectious disease department at the Gemelli hospital. “Identifying someone who can donate their microbiome is more difficult than you’d think.”

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You might expect your microbiome is healthy because you feel healthy, but that’s not necessarily true. Our gut can contain harmful viruses and bacteria that would wreak havoc if transplanted into another fragile microbiome. That’s why screening for the right sample can take weeks. As Dr Sanguinetti explained, a potential donor’s blood and stool are tested multiple times for gastrointestinal issues, other known viruses, like HIV and hepatitis (plus many more), as well as other conditions we know might be remotely associated with gut health, like autism, schizophrenia, diabetes and heart disease.

For this reason, the Gemelli is setting up a donor bank of people it can rely on. Once a match is found, the faeces is filtered, blended with saline solutions and transplanted – either fresh or frozen – via colonoscopy or enema. One day, these implants could be available in capsule form.

Marisa Capezzuto, 38, is a photographer in Minnesota. She has Crohn’s disease and used to have recurrent C. diff infections. “It was really painful and stressful,” she said. “C. diff gave me watery diarrhoea over ten times a day, plus nausea, fever, dehydration and stomach pain.” At the height of her disease, she could hardly leave the house or get any proper sleep. “I was chained to the toilet,” she said.

After a few unsuccessful rounds of expensive antibiotics, she decided to have her first faecal transplant at the University of Minnesota. Six months later, the C. diff came back and she had a second FMT at the Mayo Clinic in Minnesota. In both cases, her donors were anonymously sourced through a bank. Now, the infection seems to be gone for good. “It might sound silly, but it was a lifesaver for me,” she said.

Marisa Capezzuto, brown hair in a bob and nose piercing, lying in a bed with tubes coming out of her.

Marisa Capezzuto. Photo courtesy of the interviewee.

Primary school teacher Alice Ten Havre, from Elburg in the east of the Netherlands, was also successfully treated for C. diff with a faecal transplant. The 54-year-old got sick in January of 2018 after a long course of antibiotics to fight a urinary tract infection. She initially took antibiotics to treat her C. diff, too, but the treatment didn’t work.

Havre had a faecal transplant at the Isala hospital in nearby Zwolle, with stool from a Dutch donor bank. She spent three days in the hospital and made a full recovery just a few weeks later. “It was a great success,” she said. “The bacteria never returned.”

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The results of FMT on C. diff infections have been so outstanding that a scientific consensus on the treatment formed fairly quickly. Since research on the human microbiome is making impressive discoveries, scientists are also looking into using faecal transplants to treat a variety of medical issues. For example, Dr Sanguinetti says reputable studies on animals affected by a condition similar to autism have found a reduction in symptoms after a faecal transplant. Others are looking into using FMT to treat IBS, complications from colon cancer and even alcoholism.

But there is simply so much we still don’t know about FMTs. For one, it’s unclear whether the treatment cures the symptoms or the causes of medical issues. We don’t know if the researchers’ findings are a mere correlation. We don’t know which tiny microorganisms within the microbiome make a difference and which don’t.

“It’s not sci-fi,” said Dr Sanguinetti, “but it is absolutely necessary that we respect a rigorous scientific process as not to feed false hopes.” All in all, he thinks the science is progressing fairly quickly, and says we might see some concrete implementations soon.

Unfortunately, “soon” isn’t fast enough for the internet. The treatment’s often miraculous results have made it famous online, with groups dedicated to sharing information and, more worryingly, DIY transplant tips and tricks. In some Facebook groups, users say they want to try the procedure to treat conditions like anxiety and depression, even though there is no scientific consensus on its effectiveness for these conditions. Others are desperate to find solutions for debilitating medical problems related to their gut that don’t fit a diagnosis that would be treated with an FMT.

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That was the case for Josiah Pugh, a 35-year-old photographer from New Orleans. “In 2013, I was in an accident and [technically] died,” he said. “I was resuscitated and stayed in a coma for 13 days.” At the hospital, he was given aggressive antibiotics that led to gut problems. “The diarrhoea was basically every waking hour and many times at night,” he said. Despite the crippling symptoms, his initial colonoscopy revealed no issues and he was sent home with a dysbiosis diagnosis, or a general microbiome imbalance.

Desperate, unable to work and totally isolated for over a year, Pugh decided to take matters into his own hands with a DIY procedure. “My mother is a pathobiologist and was afraid I might give myself a fatal infection,” he said, “but I went ahead when my brother agreed to be my donor.”

Following instructions found on a website, he implanted frozen stool via an enema and said he saw immediate results. “Although it didn’t cure me completely, roughly 70 percent of my symptoms were gone,” he said.

Josiah Pugh. Man with blond short hair and blue eyes, taking a selfie in front of the Taymount clinic sign.

Josiah Pugh at Taymount Clinic.

In 2019, Pugh decided to travel to the UK for another round of FMT for his dysbiosis, this time at the private Taymount Clinic. In the US, treating dysbiosis with FMT is illegal. But some private clinics across the world, including Taymount, controversially perform the transplant even in cases where FMTs are not recommended by the current scientific consensus. The procedures are also very costly; Pugh paid about €4,500.

Despite the risks, he says he’s happy with the results: “I felt so trapped by my illness that I even talked to my loved ones about possibly ending my own life. I'm incredibly excited and grateful to move on.”

Both Dr Sanguinetti and Dr Giovanni Cammarota, a gastroenterologist at Rome’s Gemelli University Hospital, say Pugh was very lucky not to have run into any complications after his DIY procedure. Last year, two patients in the US contracted E. Coli after a transplant in a hospital, and one of them died.

“People have difficult problems that they want to solve – that’s totally understandable from a human point of view,” said Dr Sanguinetti. “But what’s even more important is that we try to avoid further damage.”