Dealing with bodily waste in an unusual way, worrying about hygiene or social embarrassment and having a part of your insides sticking out can profoundly affect one’s self-image and social confidence. Our usual ways of thinking about cleanliness, adulthood, sexual and gender identity, or even what it means to be ‘normal’ can seem as if they do not apply when we have a stoma. While many people soon come to feel that having a stoma is simply different rather than abnormal, for others feelings of discomfort persist.
People whose surgery for colorectal cancer did not require them to have a stoma often saw this as a lucky escape. As one woman put it “There’s a lot worse could happen but I must admit that when I didn’t have it I could have shouted through the roof.” Many people said that their first conscious act after surgery was to feel around for a stoma bag.
One or two people expressed no distress at having a stoma but the majority, including those who later adjusted successfully, vividly remembered their fears. Many said their fears were worse than the reality of the situation. One woman agreed that the fear was worse than the reality but still felt she had lost control of her life until she began to practise colonic irrigation.
Having known other people with ileostomies helped him feel positive about his own.
Remembers his early fears about having a colostomy.
Having a colostomy left her constantly anxious about possible accidents and social embarrassment.
Many people described themselves as “fastidious” or “meticulous” about personal hygiene and worried that, with a stoma, they would never feel entirely clean. This feeling often subsided as they gained confidence with stoma management and developed a new cleanliness regime. One man describes his initial feelings about his stoma and how he eventually overcame them and learned to deal with it. A woman explains that even after many years her stoma still makes her feel unclean.
Describes how he overcame his initial negative feelings about his stoma and developed a new…
After many years she still worries about her stoma.
While there was little concern about stoma bags being visible under clothing, almost everyone said that one of their greatest fears was offensive smells. There was also widespread concern about the possibility of leaks or other accidents in public. Many people were embarrassed by the noises their stomas made. One man describes his concerns as he tried to carry on with his usual activities.
He recalls trying to carry on with normal activities while adjusting to having a stoma.
Many people disliked having to carry around and consciously dispose of bodily waste but found it particularly distressing when others were or wanted to be involved. Several people found it disturbing to have part of their insides on the outside of their body. One woman quickly learned how to manage her stoma so she could re-establish a sense of privacy. Another woman recalls her feelings about her stoma and how she disliked having other people help her with it.