Advocacy, Antibiotic Stewardship, and the Hidden Mental Toll of C difficile

Caitlin McClain, a Clostridioides difficile (C difficile) survivor, nurse, and board member and advocate for the Peggy Lillis Foundation (PLF), credits PLF with “saving her sanity” during her illness, when patient stories and peer support gave her hope that she could survive. She described the foundation as a source of peer-reviewed research and clinical trial information that patients can bring to their providers, and as an advocate for individualized care amid policy barriers to FDA-approved treatments; she received 2 rounds of fecal microbiota spores, live-brsj (Vowst; Seres Therapeutics), which did not work for her. She argued that patients should receive microbiome restorative therapy after the initial infection rather than after multiple recurrences, which she said could reduce recurrence, death, and spread.

McClain also voiced support for legislation that would incentivize development of new antibiotics, noting that only 3 are prescribed for C difficile, of which 1 is no longer very effective. She emphasized that C difficile prevention begins with antibiotic stewardship, warning that overprescribing broad-spectrum antibiotics drives resistance and leads to more infections, more antibiotics, and more C difficile.

She closed by highlighting the mental health burden of the disease. McClain described experiencing panic attacks multiple times a day during 15 months of postinfectious irritable bowel syndrome, recently began eye movement desensitization and reprocessing therapy, and keeps a contingency plan listing every US physician who performs donor-directed fecal microbiota transplant. Through peer support, she has found that many patients feel isolated and fear infecting their families. She said the most devastating part of C difficile is losing the ability to experience joy without “waiting for the other shoe to drop,” and that this aspect of recovery deserves far more attention.