Saffron Cassaday has been managing ulcerative colitis — a form of inflammatory bowel disease (IBD) characterized by painful inflammation and ulcers in the digestive tract — for 15 years since her diagnosis. “It’s an autoimmune condition where the immune system attacks the colon,” the 36-year-old explains to Yahoo Life. “It can be quite painful.”
She’s faced the struggle of dealing with the disease on a daily basis. One of the most common and debilitating symptoms of ulcerative colitis is a sudden, 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.
The burden of the disease affected her every day, leaving her feeling trapped at times, especially during travel. 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 complicate matters further, Cassaday found that the medications she was taking 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 mother had heard about fecal microbiota transplantation, or FMT, a method that involves transferring a medically processed stool sample from a screened donor to a patient via an enema. This piqued her interest, and she began researching clinical trials on the procedure to treat IBD and other conditions. “And these clinical trials were showing some promising results,” she says.
However, 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 she thought if she could find a way to do this, there was a 30% chance it might help her.
Driven by desperation, Cassaday decided to take matters into her own hands by trying it DIY style, using her healthy partner as a donor. After performing “over 100 fecal transfers” and becoming pregnant, which can put autoimmune diseases into remission, Cassaday is now symptom-free. “It’s been about three and a half years of having no symptoms whatsoever. And my colonoscopies show complete histologic remission,” she says. “I really feel like I’ve gotten my life back.”
Fecal Microbiota Transplantation (FMT) has shown great potential in treating conditions such as C. diff infection in the colon. Dr. Ari Grinspan, a gastroenterologist, and director of the GI Microbial Therapeutics at Mount Sinai Hospital, explains that there are even more than 200 clinical trials assessing the capabilities of FMT for various conditions. However, with the treatment’s potential, there are still many unknowns and risks associated with it.
As Grinspan warns, the treatment isn’t without its own risks, and Cassaday’s experience of DIY FMT is never recommended. However, when performed in a clinical setting, FMT is considered safe and well-tolerated. And while there are potential risks, such as infection from another bacterium or virus from the donor if they’re not properly screened, serious side effects are rare.
For those interested in FMT beyond C. diff treatments, both Grinspan and Cassaday agree that the best starting point is to find and participate in a clinical trial. “This should be done in a safe, rigorous testing environment so we can make sure we’re not hurting anybody,” says Grinspan.