Information and support about colostomy or ileostomy

Learning to live with a colostomy or ileostomy, whether on a permanent or a temporary basis, can be a challenge. The information and support available to people both before and after surgery has a major impact on how they experience this process. Different people need different kinds of information and support at different times. When these needs are met the process of adjustment is generally easier. The levels of information and support available to people, the ways in which information and support were offered, and the quality of what was offered were extremely variable.

Many people identified the period before surgery as crucial to their experience. Those who knew what to expect because they had received good information before their operation, usually from a specialist stoma nurse, were better prepared to deal with their situation afterwards. One woman describes what was for her a “well-managed” part of her experience. Another man had benefited from being shown a video which gave him a clear idea of what to expect. Seeing pictures of stomas and being able to handle stoma bags before surgery was generally considered helpful.

Explains how her information and support needs were well met.

Age at interview 33

Gender Female

Age at diagnosis 28

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Face to face discussion with a stoma nurse or other appropriate person before surgery was also highly valued. One woman found the printed information she was given confusing and wished she’d had an opportunity to talk things over with someone.

A man who has lived with a colostomy for nearly 30 years argues for the importance of pre-operative visits to new stoma patients by volunteers from the Colostomy Association.

Felt she needed face to face contact to fill in information gaps about her colostomy.

Age at interview 53

Gender Female

Age at diagnosis 39

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Argues that the shared experience of other people with stomas is invaluable to new stoma patients.

Age at interview 87

Gender Male

Age at diagnosis 62

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Sometimes anxiety about having a stoma is so great that people are unable to take in the information and support they are offered. One woman explains how her dread of a temporary colostomy meant that even discussing it before her operation was a painful process:

Her anxiety about having a temporary colostomy made it hard to take in information before surgery.

Age at interview 56

Gender Female

Age at diagnosis 53

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Occasionally, people received no information before their surgery because they were not expected to need a stoma. But for others information and support were inadequate and offered too late. One man explains how he did not receive a visit from the stoma nurse until minutes before his surgery (Interview 16).

Information and support are equally important after surgery when people are learning to live with their stoma.

Chris obtained information about diet and other matters via booklets, from the internet and from…

Age at interview 46

Gender Male

Age at diagnosis 45

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One man describes the difficulties he experienced when the necessary information and support were not available:

Having both a permanent colostomy and a temporary ileostomy he had to learn to manage them with…

Age at interview 54

Gender Male

Age at diagnosis 48

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Most people did receive support and information from a stoma nurse, but many still said that important aspects of their experience were never mentioned until something went wrong. They felt strongly that they would have been less distressed if more comprehensive information about common problems with stomas and quality of life issues had been offered as a matter of routine.

Many people were extremely alarmed the first time their stoma bag ballooned (became inflated with gas) although they later learned that this happens commonly. A woman who counsels other cancer patients believed that people should be offered more information about quality of life issues like how a stoma might affect their personal relationships (Interview 08).

A man who has had an ileostomy for 30 years maintains that the best information and support comes from other people with stomas. He describes a phone call from a distressed friend who did not know what to do when his ileostomy began to bleed:

He feels that there is no substitute for personal experience of life with a stoma.

Age at interview 65

Gender Male

Age at diagnosis 35

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For more about some of the issues raised here see: Learning to manage a stomaDaily living with a stomaSexuality and relationships with a stoma, and Feelings about having a stoma.