Some colitis patients trying do-it-yourself fecal transplants
Published Thursday, October 3, 2013 6:01PM EDT
Last Updated Friday, October 4, 2013 11:06AM EDT
Fecal transplants are beginning to be used more often to cure people who have persistent, recurrent C. difficile intestinal infections. Now, studies are underway to test whether the transplants can help with other irritable bowel disorders, including ulcerative colitis and crohns.
But some can't wait for science; they are learning how the transplants work and performing them themselves.
Rebecca Kirstein is one of those. Her 10-year-old daughter, Madison, had been suffering from crohn’s for four years and had been growing more and more ill before she tried a fecal transplant.
"Her entire digestive tract, from her esophagus all the way (down), all the way in between, was damaged… pretty severely damaged," Kirstein says.
Her daughter was constantly beset by stomach pains, cramps, and diarrhea that were leaving her so exhausted, she no longer had the energy to move. The drugs to treat her inflammatory bowel disease (IBD) weren't doing much to help and Kirstin was growing desperate.
"We tried a lot of different medication and dosages as well as therapies, reflexology, massage acupuncture acupressure -- you name it and we tried it. And just nothing worked," Kirstein remembers.
While reading online IBD message boards, Rebecca heard about fecal transplants.
"My first reaction was, 'Okay, this is a little strange.' But when your child is sick, there is nothing you won't do and suddenly, something that seems gross or all around strange is worth a shot," she says.
Kirstein decided to take Madison to a naturopath in Oregon who was offering a "fecal microbiota transplant," or FMT, using stool material from a child who had been screened for infections.
The naturopath took stool from the donor, mixed it with water and used enema tools to inject it in Madison's colon.
After undergoing 10 transplants over a few days, Madison says the transformation was almost immediate. Within 24 hours, she was already feeling better.
"The first day I had it, we went outside. We played tennis, we went swimming, we played Wii, we went swimming again… It was very, very fun and I felt very good."
In just three days, Madison went from having six to 10 watery bowel movements a day, to one formed bowel movement daily.
"Her energy levels also increased dramatically and she was able to eat foods she hasn't eaten in years, such as raw fruit and veggies, and grainy breads," says Kirstein.
In patients with IBD, it's thought that an imbalance of harmful bacteria in the gut leads to the inflammation. Some recent research has shown that replacing that imbalance with helpful bacteria from the stool of a healthy donor can give a colitis patient's immune system a rest and perhaps even reset the chronic inflammation.
After Madison and her mother returned from Oregon, Kirstein wanted to keep her daughter healthy by continuing the transplants. But with no one in Canada offering FMT treatment for colitis. And with no studies on children underway, Kirstein decided to take things into her own hands.
She herself has performed several more transplants on Madison, using stool both from herself and donated from a friend. Like other parents trying this for their children, Kirstein says she would rather not have to do it herself and would prefer a health professional be involved.
"But when you don't feel you have any choices and this is not available in your country -- let alone in your town or city -- as a parent, you have no choice if you think this could potentially work for your child," she says. "I don't know a parent alive who wouldn't you know blend up anything to make that happen."
Kirstein reports that Madison has maintained good health in recent months, although tests show she still has high levels of proteins that indicate inflamed bowels. So Kirstin wants to try other stool donors in hopes samples that are as successful as the donor samples they used in Portland.
The Kirsteins aren't the only family trying this approach. Across North America, people suffering from bowel diseases are joining this desperate do-it-yourself trend.
But Dr. Michael Surette, a microbiologist at McMaster University in Hamilton, Ont., is worried. He's currently leading a randomized controlled trial to evaluate the effectiveness of fecal transplants in ulcerative colitis. While he understands the desperation of some of these patients, he warns that transplants can be dangerous.
"There is always a risk of infection," he says.
Surette says he hasn't yet heard of anyone transmitting infections through FMT, but he says all the clinical trials done so far screened donors for viral and bacterial pathogens. He also cautions that fecal transplants are still a new area of study and there is still much that isn't known about the longer-term effects.
"The potential to transmit a pathogen that we don't know… is a real concern," he says. "There is a low but potential risk of physical damage."
Surette says his team will have results from their study on FMT in colitis in about 12 months. He urges patients to wait for science to get some answers.
But Kirstein says she's not interested in waiting. She says she will continue to do the transplants and to press for better access to this treatment for other colitis patients.
"I think one day, we will have donor banks -- just like we have blood banks and all of those things. And the taboo around this will wear off. One day we will have fecal matter banks like everything else," she says.
"That is my hope for people like Maddy, for people who are born into this, that they can have access to that."
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip