Danique Heuvelings

212 Chapter 10 tapering of medications afterwards. One participant (P8) reported a negative experience with transrectal vacuum-assisted drainage of their AL due to pain, which resulted in difficulty sleeping. Physical rehabilitation proved challenging as participants struggled with weight loss and a lack of energy, finding it difficult to resume exercise post-illness. While some physical symptoms persisted beyond AL treatment, participants generally expressed having learned to live with and manage the physical symptoms. Ongoing and more long-lasting physical issues included ‘abdominal wound problems’ (P2), ‘parastomal or incisional herniation’ (P2/6), ‘fistula’ (P3), and ‘stricture’ (P8), requiring additional interventions. Participants who did not have a stoma created at their index surgery, and those who underwent stoma reversal described experiencing defecatory issues including incontinence, urgency, and incomplete bowel evacuation. These participants were all diagnosed with low anterior resection syndrome (LARS), for which some required educational, medical, or operative management. Emotional impact Participants felt fearful, anxious, scared, vulnerable, and disappointed when they were informed that they had developed an AL, with some expressing a sense of determination to overcome the complication. The voiced reasons for these emotions included concerns about having to return to the hospital shortly after being discharged home and experiencing pain. Other participants were concerned about the possibility of requiring a permanent stoma or another surgery, and some expressed concerns about the risk of dying. Participants reported feeling anxious about the potential for escalating or new pain. Some reported fear associated with going to the bathroom due to diarrhea, obstipation, or pain during defecation. Several participants who underwent cancer resections expressed greater fear of cancer recurrence than of the consequences of an AL. Lastly, some participants expressed a renewed sense of determination to survive and overcome the AL. Participants who required reoperation for stoma creation described feeling insecure about their body image. Many expressed concerns about their stoma bag leaking, especially when away from their homes. While some participants expressed minimal concern about having a temporary stoma to solve AL, most feared a permanent one. For some participants, this was informed by prior negative functional and emotional experiences reported by family members who had a stoma (P5). Despite having learned how to manage their stomas, many participants opted for stoma reversal, driven by a desire to regain a sense of normalcy. The fear of complications during reversal surgery was generally low, with participants expressing confidence in their surgical team, despite the previous AL complication. Work-related issues due to the AL diagnosis were also described, primarily delayed return to work. Learning how to manage drains or a stoma added to the physical difficulties. It was

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