A patient living with Crohn’s disease (CD) says that he was so debilitated he was going to the bathroom 40 times per day. Medication wasn’t helpful, he says.
The patient turned to a DIY fecal microbiota transplant (FMT) for relief. He began injecting himself with his mother’s feces as a means of replenishing his gut flora.
The man says that he benefited from the transplant. However, experts say that this DIY approach is not only not FDA-approved for CD but also risky and potentially ineffective.
A Canadian man living with Crohn’s disease says that he found symptom relief after giving himself fecal microbiota transplants using his mother’s feces.
According to news sources, Charlie Curtis, who is in his 30s, says that he had “debilitating Crohn's disease.” Curtis was initially diagnosed with ulcerative colitis (UC) in 2006 and then developed CD. Curtis was medicated, but the treatment failed to relieve his symptoms, which he says caused him to use the bathroom 40 times a day.
CD and UC fall under the inflammatory bowel disease (IBD) umbrella, both impacting the gastrointestinal tract. About one-third of patients with CD will have small bowel involvement, but another 20% will experience only colon involvement. 50% experience both. CD is incurable but manageable, although it runs a relapsing and remitting course.
Curtis’s mother was “[d]esperate for her son to get his life back,” leading her to contact Thomas Borody, MD, Director of the Centre for Digestive Diseases (CDD) in Sydney, Australia, reports Business Insider. According to the CDD, Dr. Borody began performing FMT treatments in the 1980s and has performed over 12,000 surgeries to date. Borody encouraged Curtis’s mother to donate her healthy stools to her son.
In a clinical setting, FMTs are typically performed via colonoscopy or endoscopy, while less common methods include duodenum transplant via the nose or a swallowed or enema-inserted capsule. Through these methods, healthy bacteria from the donor’s feces are inserted into the colon of the recipient. The goal is to repopulate the gut with rich, healthy microbes.
Many people performing DIY FMTs do so using a blender, a strainer, and typically an enema bottle.” It may sound risky, but there are communities of DIY poop transplant enthusiasts across social media who share their tips, techniques, and supposed success stories, Business Insider reports. There’s even a documentary called “Designer Shit” that explores the topic.
Curtis and his mother performed the DIY FMT “‘every day for a month, then every two days for a month, then every third day for a month.’” When they got down to one treatment a month, they did it for 3.5 years.
Curtis told Business Insider that when he was doing the procedure, he’d "feel tingling inside of [him]. It felt healthy, it felt like it was working."
Risk and efficacy associated with FMT
What the Curtises and others like them are doing is risky, experts say. FMTs are only FDA-approved for treating Clostridium difficile (C. diff) infections, says Anurag Maheshwari, MD, a board-certified gastroenterologist at the Institute for Digestive Health & Liver Disease at Mercy in Baltimore, MD. Dr. Maheshwari has over 10 years of experience performing FMTs.
“We’ve done FMT for many years. The standard procedure for FMT is the use of donors from the same household. These donors are put through health screening to prevent pathogens, harmful bacteria, and viruses,” he says. “The risk of pathogen transmission is very real and has been documented with the DIY approach.”
Dr. Maheshwari cites two New York–based immunocompromised patients who were exposed to antibiotic-resistant E. coli bacteria after an FMT procedure. One died.
Furthermore, he says, the literature on FMT for Crohn’s treatment is “extremely controversial, and the results of studies are mixed.”
One 2021 systematic review published in the Journal of Gastroenterology and Hepatology found that while “[p]reliminary studies suggest that FMT may be an effective therapy in Crohn's disease…large controlled trials are needed.” Other findings published in 2020 stated that most of the research done on FMT for IBD focused on UC, not CD.
Researchers have also looked at FMT for treating other conditions, including fatty liver disease, alcoholic liver disease, and celiac disease, Dr. Maheshwari notes. “Again, we believe that there are multiple conditions that may be affected by gut health, and people have postulated that FMT might help, but the data is inconsistent,” he adds. “As a gastroenterologist, the only patient type I'd recommend FMT for is one with C. DIFF recurrent infection.”
Kyle S. Eldredge, DO, a board-certified colorectal surgeon, says that there’s a reason FMT isn’t a go-to CD treatment: “FMT is approved for C. DIFF because that’s a bacterial organism that takes over the microbiota. [However], the issue with Crohn’s is that it’s a systemic autoimmune disease. It doesn't just affect the gut; it has ocular, musculoskeletal, and skin effects.”
When a patient with CD has limited success with medicine, surgery may be the next best option, Dr. Elderedge says: “We can do surgery to address whatever portion of the GI tract is affected. We can repair or take parts of the small intestine or large intestine out.”
The placebo effect may play a role in the success associated with DIY FMTs, Dr. Maheshwari says. With CD patients, he says, “there seems to be a very strong placebo response. There are significant hormonal changes that affect gut health as well. I’m not saying CD is all in their heads, but things like stress and anxiety trigger hormone productions that can affect gut health in negative ways.”
According to findings from a randomized, double-blind, placebo-controlled study of patients with irritable bowel syndrome ( IBS) published in Gut, patients who received a placebo (versus those who received FMT capsules) “experienced greater symptom relief compared with the FMT group after three months.”
However, another study that looked at both IBS and IBD found that the “size of the placebo response appears to be somewhat higher in IBS than in IBD, but in both cases, the contribution of the spontaneous course of the disease (e.g., spontaneous symptom recovery and remission) may contribute 50% or more to the placebo response.”