EP917 - What Questions Do You Have? - A Reddit-based analysis of patient-directed questions on living with an ileostomy

ePoster Presenter(s)

• 

  Abd-elrahman S. Hassan, MD, MAS

  Colon and Rectal Surgery Fellow
  Baylor University Medical Center
  Baylor University Medical Center
  Dallas, TX, United States

  Disclosure information not submitted.

Author(s)

• 

  Arielle Brackett, MD (she/her/hers)

  Colon and Rectal Surgery Fellow
  Baylor University Medical Center
  Baylor University Medical Center
  Dallas, TX, United States

  All of the relevant financial relationships listed below have been mitigated.
  This individual has no financial relationships with ineligible companies.
• ZR

  Zachary Roberts, MD

  Staff Surgeon
  Baylor University Medical Center
  Dallas, Texas, United States

  Disclosure information not submitted.
• WL

  Warren Lichliter, MD

  Surgeon
  Baylor Scott & White Health
  dallas, Texas, United States

  Disclosure information not submitted.
• 

  Loree Beth Thornton, MD

  Colorectal Surgery Fellow PGY 6
  Baylor University Medical Center
  Baylor University Medical Center
  Dallas, TX, United States

  Disclosure information not submitted.

Senior Author(s)

• 

  Katerina O.K Wells, MD MPH (she/her/hers)

  Chief, Division of Colon and Rectal Surgery, Baylor University Medical Center, Dallas
  Baylor University Medical Center, Dallas
  Baylor University Medical Center, Dallas
  Dallas, TX, United States

  Disclosure information not submitted.

Author(s)

• ZQ

  Zeena Qiryaqoz, MD

  Resident physician
  Baylor University Medical Center
  Dallas, Texas, United States

  Disclosure information not submitted.
• 

  Sarah Stringfield, MD (she/her/hers)

  Attending
  Baylor University Medical Center
  Texas A&M College of Medicine
  Dallas, TX, United States

  Disclosure information not submitted.
• 

  James W. Fleshman, Jr., MD

  Surgeon
  Baylor Scott & White Health
  Dallas, Texas, United States

  Disclosure information not submitted.
• AW

  Anthony Waddimba, PhD

  Research Investigator
  Baylor University Medical Center
  Dallas, Texas, United States

  Disclosure information not submitted.

Purpose/Background: Living with an ileostomy can be a life-changing moment. Even with substantial support during a patients' hospitalization, managing a stoma is significantly challenging. Numerous patient-reported outcome measures have been validated to capture real world experiences of affected individuals. However, their utility can be limited by inadequate patient uptake or by specific concerns being unaddressed in current versions. The emergence of the internet and social media presents additional platforms for patient-focused support and scientific inquiry. While platforms like Facebook™, Instagram™ and Twitter/X™ have been investigated, there is a paucity of published evidence on experiences of persons living with an ileostomy, as shared with the online community via Reddit™. We conducted a qualitative research study addressing this evidence gap.

Methods/Interventions: Utilizing an automated software application, we retrieved all text-based posts from the Reddit platform, specifically within the "r/Ostomy" community of persons living with end or loop ileostomies spanning the June-August 2025 period. We then utilized OpenAI™ to code the contents of multiple validated quality-of-life questionnaires (Stoma Quality of Life Score, Ostomy Adjustment Scale, City of Hope QOL-Ostomy Questionnaire) into a combined master set of thematic categories (Figure 1). The Reddit-sourced textual data were then qualitatively compared to the QoL thematic categories. Each Reddit post was sorted into the most relevant primary and secondary theme(s).

Results/Outcomes: Of the 980 posts retrieved, 366 were pre-labeled with the relevant anatomy (end/loop ileostomy, end colostomy, etc.). Another 614 were manually reviewed and categorized as related/unrelated to this anatomy. We found that 345 posts related to end/loop ileostomy issues, 316 posts were related to other variants of stoma anatomy, and 247 posts had no relevance to stomas. Of the 345 relevant posts, a majority addressed physical health and functioning (n=269; 78%). Cross tabulating primary and secondary themes (Figure 2) revealed that physical health and functioning were most frequently associated with healthcare and support systems (n =60); social functioning (n=46); and psychological/emotional wellbeing (n=39). Further sub-categorization of the 269 posts on physical health and functioning, revealed that the majority sub-theme addressed stoma product complications (n=207), especially leaks (n=59), product fit (n=48), and skin issues (n=40).

Conclusion/Discussion: Living with an ileostomy can be a challenging and isolating experience. Our qualitative study found that many ostomates turn to Reddit to educate themselves and others on the scope of disease-specific challenges. While many complications pertain to physical health and well-being plus healthcare and support systems, a major subtheme of stoma-product management also emerged. These findings potentially can foster a more in-depth understanding of patients' needs, leading providers to engage in more comprehensive counseling of patients. Findings can also provide insights to suppliers and companies for product quality improvement and smarter targeting of patient concerns.

Figure 1: Primary Theme Count
Figure 2: Primary and Secondary Themes Heat map