Crohn’s perianal fistulae (CPF) impact the physical, emotional, and social wellbeing of patients. Despite the high biopsychosocial burden of CPF, limited data exist regarding how patients navigate challenges associated with this complication of CD and how they perceive treatments. Social media offers a rich opportunity to gain an in-depth understanding of the impact of CPF on patients’ daily lives outside of controlled environments. In this study, we used social media to examine patients’ experiences and concerns with CPF and assess its impact on their behavior and overall wellbeing.