Dec. 9, 2015 -- Hallie found relief from 7 years of unrelenting stomach pain at the bottom of her 3-year-old nephew’s froggy potty.
She took his stool out of the training toilet, “mushed it up” with some saline solution in a plastic baggie and then squirted it into her rectum using an empty enema bottle.
“People say, ‘Didn’t it gross you out?’ And I would say no. This was like gold to me,” says Hallie, age 40, who lives in California. She asked us not to use her full name to protect her family members.
A growing number of patients like Hallie have flocked to blogs and social media sites like YouTube and Facebook to share advice and techniques for at-home fecal transplants. A web site called PowerofPoop even helps connect people to potential stool donors for a small fee, which ranges from $30 to $200 per deposit. The recipient typically also pays for any laboratory tests, if they choose to do them, to screen their donor.
Why All the DIY?
People are going the do-it-yourself route to relieve everything from a child’s autism to male pattern baldness to bad breath, according to Catherine Duff, executive director of The Fecal Transplant Foundation, a nonprofit that is advocating for safer, more widespread access to the treatment. Based on telephone and Internet inquires to her site, she estimates that about 10,000 people do at-home fecal transplants in the U.S. each year.
“It’s crazy,” says Duff, who years ago did an at-home fecal transplant herself after doctors told her she was dying of an intestinal infection. “It’s ironic that I’m saying this because it saved my life. But now it has become a Wild West, and the things people are doing aren’t safe,” she says.
Doctors have reported cases of sudden weight gain and new bowel disease after fecal transplants. And even people who appear to be in robust health can silently carry germs they can pass to others.
Because the stool is about 50% bacteria, the theory behind the transplant is that it can replace bacteria that have gone missing from the gut. It can have dramatic results, even after a single treatment.The process of doing it at home is surprisingly simple.
After someone obtains a donation, the stool is then mixed with saline solution -- a smoothie blender works well for this, according to one instructional video -- and then the solution is then squirted into the rectum with an enema bottle or bag.
“If you’ve ever made a milkshake, you can do it,” says Michael Silverman, MD, chair of the infectious diseases division at the Schulich School of Medicine at Western University in Toronto.
About 10 years ago, Silverman helped a handful of gravely ill people do fecal transplants at home. All those patients had been afflicted with repeated bouts of an infection called C. diff, which causes severe, sometimes deadly, diarrhea. The bacteria that causes that infection, C. difficile, has become resistant to nearly all the antibiotics doctors have to treat it.
Fecal transplants, in which stool is obtained from a healthy friend or relative and injected into the colon during a colonoscopy procedure, have been shown to cure C. diff about 90% to 95% of the time. It’s a cure rate that Silverman and other experts call “utterly remarkable.”
Fecal transplants have become standard care for people who have repeated bouts of C. diff. It’s much easier to get them in a medical setting than it was even 2 years ago. And the stool doesn’t even have to be delivered via colonoscopy anymore. Doctors can order new capsules of carefully screened, freeze-dried donor stool made by a biotech startup company called OpenBiome that patients swallow to get nearly the same benefits.
But while the FDA allows the use of fecal transplants for C. diff, the agency has tighter restrictions for other conditions where the treatment has shown promise -- for example, for people with irritable bowel syndrome or ulcerative colitis. In those cases, patients can only get a fecal transplant in a medical setting if they’re participating in a clinical trial.
And many, especially those who might need repeated treatments, say that option simply isn’t available to them. They say they can’t afford to wait for either science or the FDA to catch up.
Hallie was one of them.
'I Was Really Open to Trying Anything'
About 10 years ago, she returned from a trip to Europe with a lung infection. And then, mysteriously, her stomach started to hurt.
“For me it was sort of a dull ache. It wasn’t cramping like I’ve heard other people have. I was really bloated and I had a fair amount of pain with eating in a way I had not had before,” she says, recalling that the pain eventually reached a 7 or 8 on a 10-point scale.
She changed her diet, spent tens of thousands of dollars consulting with specialists and alternative practitioners. She changed jobs in an effort to reduce her stress. She moved to a different house. Nothing helped.
“Water hurt, to give you an idea how I was doing. I couldn’t take a drink of water.” She lost 15 pounds.
Then her sister shared a newspaper article about fecal transplants.
“By that time I was really open to trying anything,” she says. Within about 2 weeks of her first do-it-yourself treatment, she was feeling better.
She repeated her at-home fecal transplants about six times over the course of a year and a half.
“I wouldn’t say I made full recovery. I don’t have a normal stomach, but I have zero- to 1- or 2-level pain, and I can eat anything I want. My quality of life is dramatically improved,” she says.
A Mother's Story
In another apparent, if temporary, success, a woman named Kathy Lammens has posted a popular video on YouTube that walks people through the process of an at-home fecal transplant. Lammens says in online testimonials that she’s been donating stool to her daughter for twice-a-week at-home treatments for more than a year.
Before the treatments, her daughter, Emma, who had been diagnosed with ulcerative colitis, was having bloody, painful bowel movements -- up to 11 each day. Her condition worsened, despite taking a cocktail of six different daily medications. Doctors gave them two options: Start a powerful biologic drug, or have surgery to remove the colon, an option that might leave her 10-year-old with a colostomy bag for the rest of her life.
With the support of her doctors, Lammens started doing fecal transplants at home. Results were nearly immediate. The blood stopped. Emma needed fewer trips to the bathroom each day. They thought they’d found a miracle. But after 10 months, the disease came creeping back. They added a second stool donor to try to get more bacterial diversity into her gut. They even did the transplants more often, but the symptoms returned. By 2013, the family was again looking for other options.
Doctor: 'There Are a Number of Risks'
Studies have shown that when fecal transplants are done under medical supervision, they have a low rate of complications.
But some doctors and other experts have seen signs of trouble. Colleen Kelly, MD, is a gastroenterologist and assistant professor in the Warren Alpert Medical School at Brown University. She’s been doing fecal transplants to treat C. diff since 2008.
Most have gone well, but two of her patients have had problems. One woman who received stool from her obese daughter rapidly gained 30 pounds after her transplant.
Kelly isn’t sure why the woman gained weight, but animal studies have suggested that gut bacteria may play an important role in how the body processes and stores calories.
“I’m definitely more careful. I use only lean donors now,” she says. “It’s enough of a theoretical risk that we’re being cautious about it.”
Kelly had also had a couple of other patients who’ve had flares of preexisting inflammatory bowel disease after being treated with fecal transplants for C. diff. And one patient got a new diagnosis of bowel disease after a fecal transplant.
“There are a number of risks around it,” Kelly says. “It’s a really powerful therapy. You’re transmitting a whole community of microorganisms from one person to another person along with all the genes that those bacteria carry and all the metabolic functions of those bacteria.”
“There may be a downside. And we really don’t know what those things may be at this point,” she adds.
That’s one reason that the folks at OpenBiome -- the place that’s making those new FDA-approved, capsules of freeze-dried stool -- are extremely picky about their poop. Donors must pass a rigorous screening process. Only 3% of applicants are accepted, says James Burgess, the company’s executive director and co-founder.
Burgess says they exclude candidates at different stages of the screening process. Often it’s because a potential donor harbors a germ in their stool they didn’t even know they had.
He says his team found a lot of people who have gut viruses like rotavirus and carry them without symptoms. "It’s something you wouldn’t want to pass on,” he says. “They seem very healthy but when you go to test them, they test positive.”
And Duff at The Fecal Transplant Foundation says she’s heard about problems after people have made their own poop capsules to swallow at home.
The capsules used by OpenBiome are made of a special material designed to dissolve slowly in the digestive tract so they release their contents in the colon.
Duff says people have tried to copy that approach using gelatin capsules purchased over the Internet. Those capsules dissolve much more quickly, releasing the stool into places it shouldn’t be, like the stomach or small intestine. When that happens, it can cause a condition called SIBO, short for small-intestine bacterial overgrowth, which causes pain, bloating, constipation, and diarrhea that can persist for years.
Duff is part of a committee of experts who are working with the FDA to reclassify bacterial treatments. The new definition would apply to any bacteria that are harvested and re-applied to the body. The panel, which met for the first time in early December, will continue to meet periodically for the next 2 years.
Duff hopes the effort will help make fecal transplants safer and more accessible than they currently are, so that fewer people will feel like they need to go it alone.
Hallie says after seeing her success, another family member also tried a DIY fecal transplant for his own digestive problems, which she described as “gassiness from carbohydrates.”
In his case, she says, it didn’t work.