Ekekezie C¹, Perler BK², Wexler A³, Duff C⁴, Lillis CJ⁵, Kelly CR^2,6. Am J Gastroenterol. 2020 Jan 10. doi: 10.14309/ajg.0000000000000499. [Epub ahead of print]

Author information

1 Division of Gastroenterology, Stanford Medical School, Stanford, California.

2 Department of Medicine, Alpert Medical School of Brown University, Providence, Rhode Island.

3 Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania.

4 The Fecal Transplant Foundation, Louisville, Kentucky.

5 Peggy Lillis Foundation, Brooklyn, New York.

6 Division of Gastroenterology, Alpert Medical School of Brown University, Providence, Rhode Island.

Abstract

OBJECTIVES: Fecal microbiota transplantation (FMT) has emerged as an effective treatment option for Clostridioides difficile infection (CDI) and is considered an investigational therapy for a number of other diseases. Social media has facilitated widespread exposure of the public to the gut microbiome and FMT, ultimately acting as a catalyst for the Do-It-Yourself (DIY)-FMT movement. The aims of this study were to identify factors that influenced willingness to pursue DIY-FMT including common indications, screening processes, sample preparation, and self-reported efficacy and safety outcomes.

METHODS: A twenty-five-point cross-sectional survey was posted online through the websites and social media pages of the Peggy Lillis Foundation, The Fecal Transplant Foundation, and The Power of Poop. Responses were cataloged through the Research Electronic Data Capture tool, and descriptive analyses were performed.

RESULTS: Eighty-four respondents completed the survey between January 2018 and February 2019. The majority were female (71%) and white (92%). Most (80%) reported performing FMT on themselves; 87% used Internet resources to assist in the process, and 92% knew their stool donor. Inflammatory bowel disease (35%) and irritable bowel syndrome (29%) were the 2 most common conditions that respondents attempted to treat. Only 12% reported adverse events, whereas 82% reported improvement in their condition.

DISCUSSION: DIY-FMT is being used for many indications, including those for which there is little evidence. There was a high self-reported success rate among respondents with few adverse events. There is a need for increased awareness around DIY-FMT and research around this phenomenon, which may impact public health.