Living with a resected rectum after rectal cancer surgery—Struggling not to let bowel function control life

Aims and objective To illuminate what it means to live with a resected rectum due to rectal cancer, after reversal of a temporary loop ileostomy. Background Today, treatment for rectal cancer is performed with increasing emphasis on sphincter‐saving surgery, meaning that an anterior resection often includes construction of a temporary loop ileostomy that is later reversed. The majority of patients will subsequently have disordered bowel function, with symptoms ranging from urgency to faecal incontinence. The symptoms are thought to decrease over time, reaching a plateau 1 year after surgery. There is a lack of knowledge about patients’ lived experience after 1 year. Design An explorative qualitative study. Methods In‐depth interviews were conducted with ten participants, 12–20 months after surgical closure of a temporary loop ileostomy following rectal cancer surgery. The transcribed interviews were analysed using a phenomenological hermeneutical method. Results The thematic structural analysis resulted in three themes: living with uncertainty, struggling to live with altered bowel function and a preoccupation with bowel function. In the comprehensive understanding, a deeper overall understanding emerged, illuminating that the meaning of living with a resected rectum could be interpreted as being resilient. Conclusions The participants’ lived experiences were understood as being resilient in that they struggled with the uncertainty and adversity of living with an unpredictable bowel, which was a constantly preoccupation and affected every aspect of life. The participants had not yet adapted to their situation but were struggling in solitude to get there, with little or no help from healthcare professionals. Relevance to clinical practice The insight from this study highlights the importance of patients being systematically examined and followed up in regard to functional results and impact of symptoms on everyday life. Treatment, information, advice and counselling should be given to promote adaption to the new situation.