215 The patient perspective on colorectal anastomotic leaks: A qualitative study Table 2. Continued Theme Time Quotes Treatment • ‘I want the rejoin of my stoma. I think it’s just to get a bit of body security back, a bit of normality, so I don’t have to worry about leaks. It’s a bit scary, but I know I’m going to be alright.’ – P1 • ‘I mean my mother had ovarian cancer in the 90s, and it metastasized into her bowel. And then she had a permanent colostomy and it really made her miserable. And I think that experience me seeing her go through, that affected me negatively in terms of definitely not wanting a permanent colostomy, so I did not want to have a permanent colostomy.’ – P5 • ‘The stoma just has to be managed. I do not have problems. But still I want to feel normal again.’ - P7 • ‘The stoma did not bother me in daily activities, it did not affect me that but. But still… It’s just nice to not have it; if it can be removed then remove it.’ – P6 • ‘I didn’t really like the stoma, it was depressing. Uh, and it limited my ability to go outside, do things. At least psychologically. I didn’t want to be walking around with a bulge in my T-shirt or whatever. It’s just annoying: poop in a bag. There’s some, you know, body illusions of a body autonomy that are involved there maybe in terms of what we can control and what we can’t.’ - P9 Recovery phase • ‘Yes it impacted my quality of life cause I couldn’t work.’ – P1 • ‘Learning all this medical care sucked. These were not really the things that I wanted to learn about or things that I wanted to do. Again, due to my wife’s support we made it work. She was all over the Internet looking for information…’ – P9. Longer term • ‘I’m a very stoic person. The complication did give me compassion for people that are dealing with chronic diseases. It gave me a whole different viewpoint and I’m actually glad about that.’ – P8 • ‘I don’t know that it’s from the leak itself, but I guess the experience contributed to my anxiety and my anti-anxiety medication now. My anxiety going to any doctor or specialist is really quite high because I’m not a very forceful person by nature, and so advocating for myself when I was so ill was very hard.’ – P10 Coping strategies • ’It’s just staying positive and figuring out what are the best treatment options to stop the leak and how to deal with it. You know, I mean, in hindsight.’ – P8. • ‘I was so focused that the tumor was gone and that part of the operation was successful, that I kept on being so positive, maybe too much, despite the fact that I developed a leak’ – P6. • ‘Obviously it can turn badly so there was a small part of me that perhaps was thinking that this could be pretty dangerous. But then once I was in the hospital, I felt reassured. I was in the right place with the right people around me. Honesty and transparency of the medical team are so important, and this made me feel safe. ’ – P3 • ‘I have always felt massively well looked after by my medical team and I was fully informed at all times about what they thought it could be. Therefore, I felt fine, this was my most positive experience.’ – P4 • ‘Luckily, my wife was nearby and taking care of me. She helped out, thankfully. (…) I prayed and read my Bible and all that it was at that point of my thoughts’ – P9 10
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