Abstract Background In the era of digitalization, social networking services (SNS) play an increasingly important role as platforms for information gathering and patient communication across various diseases, including rare and intractable disorders. Inflammatory bowel disease (IBD) often develops at a young age, and its patient population tends to be digitally literate; therefore, SNS usage is expected to be higher among these patients compared with those with other diseases. During the COVID-19 pandemic, unreliable medical information was widely disseminated on SNS, influencing people’s health-related behaviors. Understanding what types of information are being shared and how patients engage with them on SNS is thus of great importance. Methods Posts written in Japanese and containing the terms “ulcerative colitis,” “Crohn’s disease,” or “inflammatory bowel disease” were collected from X. Both qualitative and quantitative analyses were conducted, including thematic classification and frequency analysis using text mining. Results From July 29, 2024, to September 25, 2025, a total of 6,340 IBD-related posts were collected. Posts were classified into eight categories: (1) diet, (2) daily life, (3) examination, (4) symptoms, (5) consultation/treatment, (6) medical costs, (7) mental aspects, and (8) others. Posts concerning symptoms (n = 1,852) were the most frequent, followed by those related to consultation/treatment. Text mining revealed frequent nouns such as “treatment,” “examination,” “abdominal pain,” “worsening,” and “hospitalization”. Posts were mainly authored by patients themselves. Conclusion This study collected and classified IBD-related posts written in Japanese from X and analyzed their content characteristics. Posts concerning symptoms and treatment were the most common, suggesting that patients use social media to share real-time changes in their symptoms and treatment progress and to seek empathy and information exchange with others. Frequent appearance of terms such as “treatment,” “examination,” “abdominal pain,” “worsening,” and “hospitalization” indicated a strong focus on medical aspects among users. These findings highlight patients’ high interest in medical information and the potential value of providing accurate and supplementary information through social media by healthcare professionals to reduce misinformation and improve treatment adherence. As this analysis focused on Japanese-language posts, future studies in other regions and languages will help clarify cross-cultural differences in patient needs and further advance digital health research. Conflict of interest: Ms. Ogasawara, Kanako: No conflict of interest Kakuta, Yoichi: No conflict of interest Iwaki, Hideya: No conflict of interest Okamoto, Daisuke: No conflict of interest Nagai, Hiroshi: No conflict of interest Shimoyama, Yusuke: No conflict of interest Naito, Takeo: No conflict of interest Moroi, Rintaro: No conflict of interest Shiga, Hisashi: No conflict of interest Masamune, Atsushi: No conflict of interest
Ogasawara et al. (Thu,) studied this question.