214 Chapter 10 Table 2. Illustrative quotes per theme and timeframe Theme Time Quotes Physical impact Diagnosis • ‘I felt sort of bubbly, popping feeling, something I’ve never felt before, so I knew something was wrong.’ - P3 • ‘You know, the incontinence and the diarrhea was just out of control and I just felt like I was getting sicker and sicker.’ - P10 Treatment • ‘I had 5 drains at one point and that was constant going down to radiology and having them drained. Honestly, that was the most difficult part of everything. It wasn’t supposed to be painful, but it was. (…) Like at times they’d say, well, we need to go back in, either we need to relocate it, or we need to drain it again, I was already completely panicking. So that was a very difficult part of the illness, very difficult. It was so painful.’- P7 • ’Oh, the drain, it was really painful. I could hardly walk with that. The pain was horrendous.’ – P1 • ‘The drain, it was like a dog walking behind me, so annoying. (…) The impact of waking up with a stoma did not affect me that much, but the pain of the drainage did. They say it does not hurt. They said it’s just a small puncture, but they should call it ram or crash it in.’ – P2 • ‘I did find having a drain extreme. Just going to the toilet and anytime I had to like move (…) irritation on that bag area was very painful. It gave me anxiety. And I just kept wanting it to be gone. You know, it was so painful. It just seemed such a long time.’ – P10 • ‘The internal VAC did so much pain. It’s stitched to your rectum and the outside of your buttocks. The sound was annoying; the alarm went off all the time, so my wife put a thick blanket over it and multiple pillows, so it wouldn’t wake us up. It was terrible.’ – P8 Recovery phase • ‘I hated my colostomy, but got used to it very quickly in, in some respects, but it still disturbed my sleep. It leaked occasionally and that was always in the middle of the night or somewhere else. I just did not like having this. (…) I did not want to think about the fact it could happen. ’ – P5 Longer term • ‘I’d rather live my life with a permanent stoma, then the thought of having to go through the fistula again.’ – P3 • ‘I end up having a hernia greater my right side was greater than 4 inches. My hernia stuck out over 4 inches, so it was a huge complication and it became more and more and impacted my mobility.’- P8 Emotional impact Diagnosis • ‘Having to go back into hospital when you’ve just come out is always negative, isn’t it?’ – P3 • ‘I just wanted the best chances of not having to have another surgery.’ – P5 • ’I was scared to death to get a stoma. I was like, anastomotic leaks who cares, it’s just going to heal! That was my mindset. (…) But I was at some point I did become fearful of pain because it was so painful. (…) There was a time I was ready to, I was ready to go to heaven.’ – P8 • ’I was just thinking: okay I’m maybe going to wake up with a stoma, as long as I survive. I just want to survive.’ – P4
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