The embodied experience of pregnancy with an ileostomy

Aims and objectives To understand women's experience of pregnancy with an ileostomy following bowel resection for inflammatory bowel disease or familial adenomatous polyposis. Background While symptoms of IBD/FAP can be debilitating and life‐threatening, ostomy formation can effectively manage symptoms. Research on pregnant women with an ostomy is sparse. While some literature suggests pregnant women with an ostomy can have a normal pregnancy and birth, documented stoma complications include intestinal obstruction, peristomal hernia, retraction, stenosis, laceration, bleeding, prolapse, pouching problems, nausea, vomiting and dehydration. Design Hermeneutic phenomenology. Methods All known women (n = 8) who had been pregnant with an ileostomy were recruited from the stomal therapy departments of two teaching hospitals. Single in‐depth interviews were digitally recorded and transcribed verbatim. Hermeneutic phenomenological analysis was guided by the philosophy of Merleau‐Ponty. Reporting rigour was guided by the consolidated criteria for reporting qualitative research. Results There was a lower level of concern among pregnant woman with an ostomy than anticipated. Women described the following: the “hell” of the disease; the stoma as a lifeline; heading into uncharted waters; wanting to be normal; the shared space of the baby and the diseased abdomen; pregnancy as a dark tunnel; and the unreliable body. Conclusion Women with inflammatory bowel disease frequently experience debilitating symptoms and serious ill health. Ileostomy formation improves symptoms and the sense of “feeling normal,” facilitating readiness for conception, pregnancy and motherhood. However, women's uncertainty about conception and pregnancy persists due to the scarce information and experiences offered by clinicians, and fears around their unreliable body during pregnancy. Given this uncertainty for both women and their treating clinicians, outcomes should be documented and shared to reassure women of child‐bearing age that pregnancy and birth can be safe with a stoma. Relevance to practice Women and clinicians should aim for disease remission, peer support, ongoing monitoring and involvement of a Stomal Therapy Nurse.