Saffron Cassaday had been coping with ulcerative colitis — a type of inflammatory bowel disease (IBD) marked by painful inflammation and ulcers in the digestive tract — since she was diagnosed 15 years ago. “It’s an autoimmune condition whereby the immune system attacks the colon,” the 36-year-old tells Yahoo Life. “It can be quite painful.”
The burden of the disease affected her every day, she says. One of the most common and debilitating symptoms of ulcerative colitis is a sudden and urgent need to have a bowel movement. “I had what I call ‘trigger situations’ where traffic jams would make me panic because I thought I wouldn’t be able to get to a bathroom in time,” she shares. At the airport, security lines and the seat belt sign coming on when flying “would send me spiraling,” along with the “shame and embarrassment” over having her condition. “It made me afraid to leave my house sometimes,” she says.
To make matters worse, the medications Cassaday was taking to control her condition were becoming less and less effective. “It felt like every year my condition was getting worse,” she says.
Then she read an article about a man who had Crohn’s disease and how his mom heard about fecal microbiota transplantation, or FMT, which involves transferring a medically processed stool sample — and all of the healthy microbes and good bacteria that go with it — from a screened donor to a patient via an enema. The mom then treated her son using her own stool at home “DIY style,” Cassaday says. “From there, I started doing my own research and realizing there were clinical trials going on for fecal transplant to treat IBD and a lot of other conditions,” she says. “And these clinical trials were showing some promising results.”
But she immediately ran into an obstacle. Cassaday couldn’t access the treatment because it’s not FDA-approved for ulcerative colitis. “I couldn’t get a doctor to help me,” she says. “But I thought if I could just find a way to do this, there’s a 30% chance it might help me.”
So Cassaday did something doctors don’t recommend: She decided to take matters into her own hands by trying it DIY style, using her healthy partner (and now husband) Al Mukadam as a donor — something she documents in her new film, Designer S***, which premieres Nov. 14. “I felt that I was running out of options,” she says, “and there was a certain degree of risk I was willing to take on as a patient.”
As far as how Cassaday got over the ick factor of collecting her partner’s stool, blending it with water or saline and then putting it in an enema bottle to administer it to herself, she says it was born out of desperation. “Even when I watch the film now I get so grossed out and I can’t believe that I did it,” she shares, adding: “It’s a matter of desperation that propelled me to do it, to ignore how gross it was and just get it done.”
And it seems to have worked. After doing “over 100 fecal transfers” over the course of two years — along with becoming pregnant, which is also known to put autoimmune diseases into remission — Cassaday is now symptom-free.
“I feel great,” she says. “It’s been about three and a half years of having no symptoms whatsoever. And my colonoscopies show complete histologic remission.” She adds: “I really feel like I’ve gotten my life back.”
What to know about FMT
First, the name. Dr. Ari Grinspan, gastroenterologist and director of the GI Microbial Therapeutics at Mount Sinai Hospital, tells Yahoo Life that doctors are trying to change the name of fecal microbiota transplantation, “which has a lot of yuck,” with some using “intestinal microbiota transplant,” or IMT, instead. But regardless of the name, the purpose of the treatment is to take a screened donor’s healthy microbiota — “all the microbes, not just bacteria” — and “give it to someone else who doesn’t have a healthy microbiome and try to restore the health of their intestinal microbiota to lead to overall health benefits.”
And it’s already been proven to treat a particularly bad infection in the colon called C. diff. “It works incredibly well at preventing this infection from causing any more harm to patients,” says Grinspan. In fact, stool transplants — which are a “one and done” treatment for C. diff, meaning a single treatment is effective — have become the standard of care for patients with recurrent C. diff infections, he notes.
There’s even a pill for it (Vowst), which eliminates the ick factor. “It’s still donor-derived stool that is processed and treated and freeze-dried into an encapsulated form, and I can prescribe that to patients who have recurrent C. diff infection to prevent the development of C. diff in the future,” he says.
While standard antibiotics for C. diff “can get the job done 30% to 40% of the time,” he says, stool transplantation can lead to “a nearly 90% cure rate.” He adds: “It’s a shocking difference.”
Compare that to stool transplants for Cassaday’s condition, ulcerative colitis, which Grinspan says leads to an improvement in about 25% of people, with 10% improving after taking a placebo. “We’re talking a significant difference there, while C. diff is a home run,” he says.
Cassaday “chose to do something that was quite dangerous and she got lucky,” he notes. “I’m cautiously optimistic that IMT will have a role in patients with inflammatory bowel disease, but it’s not going to be a significant role. This is not for everybody.”
What other conditions might FMT treat?
Everybody is looking at FMT as a potential treatment right now, notes Grinspan, and there are more than 200 clinical trials assessing its capabilities. “Every field of medicine, from gastrointestinal, looking at IBS [irritable bowel syndrome], looking at liver diseases, looking at Crohn’s disease and ulcerative colitis, and then people are looking at autism and people are looking at obesity, diabetes, heart disease, allergic conditions, hair loss,” he says. “It runs the gamut.”
Although Grinspan says he’s excited about the treatment’s potential, it’s been tempered until there’s more data to show it can actually help improve these conditions and diseases. “I fully expect this to not work in a lot of these conditions, but maybe there will be some hits here or there that we can explore further,” he says. “But I don’t expect it will dramatically alter how we treat these conditions.”
Grinspan says that even though doctors are “hopeful” about fecal microbiota transplantation, there’s also “so much hype,” adding: “We need to study so much more about this.”
What are the risks?
The treatment isn’t without some risk, which is why Grinspan says what Cassaday did — “what we call DIY FMT” — is not ever recommended. “Ever, ever, ever,” he says.
However, when performed in a clinical setting, stool transplantation is considered safe and well-tolerated, and serious side effects — such as an infection from another bacterium or virus from the donor if they’re not properly screened — are rare.
To better understand the possible risks, doctors are also enrolling patients in a national registry to follow them for 10 years after stool transplantation, says Grinspan. “Did you develop something we didn’t expect you to? Or if nobody developed anything. That’s a question we’re hoping to answer with this registry,” he says.
How would someone try FMT?
For those interested in fecal microbiota transplantation for health conditions beyond C. diff, both Grinspan and Cassaday agree that the best — and, in truth, only — starting point is to find and participate in a clinical trial (you can search for them at clinicaltrials.gov). “This is a biologic and a drug,” says Grinspan. “This should be done in a safe, rigorous testing environment so we can make sure we’re not hurting anybody.”
That said, “All of us share [Cassaday’s] excitement that maybe there is something here,” he says.