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"Learning to live with the pouch": perceptions of people living with an intestinal stoma expressed on X (Twitter)
Luis Fernando Reis Macedo1, Camila Takáo Lopes1
1Escola Paulista de Enfermagem, Universidade Federal de São Paulo, Brazil; Programa de Pós-graduação em Enfermagem da EPE/UNIFESP, Brazil.
Background:
Intestinal stoma formation is a life-sustaining surgical intervention frequently associated with cancer treatment and entails significant physical, emotional, and social challenges. While previous studies have explored these experiences in clinical settings, limited evidence exists on how people living with an intestinal stoma spontaneously express their perceptions and experiences in digital social media environments.
Aim:
To analyze discourses published on X (formerly Twitter) regarding the perceptions and experiences of people living with an intestinal stoma.
Methods:
A qualitative, exploratory, and descriptive study was conducted using lexical analysis of social media content. Forty public posts written in Portuguese by individuals living with an intestinal stoma were collected from X in November 2025. The textual corpus was analyzed using IRaMuTeQ software, employing Descending Hierarchical Classification and similarity analysis.
Results:
Three central lexical classes emerged: (1) the stoma as a challenging and adaptive process, encompassing acceptance, stigma, and re-signification; (2) the oncological treatment trajectory, in which the stoma is integrated into narratives of illness, faith, and, at times, gratitude; and (3) the immediate bodily experience of living with a stoma, characterised by pain, daily pouch management, bodily adaptation, and impacts on self-esteem. Similarity analysis highlighted emotional, identity-related, and technical dimensions of the experience.
Conclusion:
Discourses shared on X demonstrate that living with an intestinal stoma is a multidimensional experience involving bodily, therapeutic, and psychosocial adaptation, particularly within the context of cancer. Social media platforms function as legitimate spaces for expressing and processing health experiences and may offer valuable insights to inform person-centered oncology nursing care, supporting technical competence, emotional support, and stigma reduction.
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