Amy L. Pakyz, Leticia R. Moczygemba, Lynn M. VanderWielen, Michael B. Edmond

Although effectiveness of fecal microbiota transplantation (FMT) has been adequately documented, the patient experience of undergoing FMT has not. We carried out a qualitative interview study using semistructured questions relating to aspects of health pre-FMT, during FMT, and post-FMT periods with 17 participants. Inductive coding was used to identify core themes during the periods. Pre-FMT themes included physical (continuous diarrhea and weight loss), mental (depression, wanting to die, and fear), quality of life (unable to perform normal activities), social support, and financial (medication costs) factors. Provider resistance/limited awareness were barriers to FMT. Participants reached a tipping point, experiencing feelings of hopelessness, which led them to pursue FMT. During FMT, participants commented on lack of a so-called ick factor. During the posttreatment period, participants experienced symptom relief, but had residual fears. Patient activation was present during all phases, including information seeking and empowerment. During the pre-FMT period, participants experienced extreme discomfort and encountered FMT barriers. Undergoing FMT was reported as easy but residual fear remained. There were displays of patient activation at all FMT time periods, including the seeking of FMT. Participants could have benefited from having undergone FMT sooner, demonstrating a need for improvement in provider education and health system barriers regarding FMT.