Patient perspective
Complications after treatment affected the patient’s life in
different ways. Problems such as difficulties urinating, infections
with unpleasant smells of pus from the wounds and
leakage from the stoma were described as problematic and
soiling clothes and sheets. For some patients, the stoma
restricted life by not wanting to travel or visit public toilets.
Others made smaller changes such as always bringing clean
underwear. Complications could cause rehospitalisation or
intense and tiring visits to the outpatient clinic:
Yes, on the one hand I had a very difficult time urinating and
extensive bleeding from the wound. So I had to get an ambulance and
stay at the hospital. (Patient 4)
Removing the rectum caused difficulties sitting and riding a
bike, which still affected life a year after surgery. Other side
effects were sensitivity changes in fingertips and feet that made
it difficult to button shirts, walking long distances or playing
golf. For some, a devastating tiredness caused unwanted
retirement from work or difficulties maintaining household
chores and leisure activities. One patient put the summerhouse
up for sale. However, not all patients suffered side effects and
complications; some patients regained their strength fast and
felt both stronger and better than before surgery