Living with a stoma
Having a stoma, even temporarily, is a big change in a person’s life and takes some getting used to. However, thousands of Australians have a stoma and most lead a relatively normal life.
The stoma may sometimes affect your travel plans, social life and sexual relationships, but these issues can be managed, especially with some planning. Unless your job or hobbies are particularly strenuous, you should still be able to participate in your usual activities.
You may worry about how you will look. Although the stoma bag may seem obvious to you, most people won’t notice anything is different unless you tell them. The stoma’s location may make some clothes less comfortable (e.g. tight waistbands or belts), but you will generally be able to continue wearing your normal clothes. You might consider buying underwear designed for people with a stoma.
Many people with a stoma worry that the stoma will affect their ability to give or receive sexual pleasure. In women, if the rectum is removed, there may be a different feeling in the vagina during intercourse. It may be uncomfortable, as the rectum no longer cushions the vagina. In men, creating a stoma usually involves removing part or all of at least one organ in the pelvic area. This may affect the nerves controlling erections.
For people with a stoma, some foods can cause blockages. This means solids, fluids and gas can’t move through as they normally would. To help the stoma settle and to avoid blockages, you may need to make some dietary changes. Over time, most people find they can eat a normal healthy diet.
A stoma blockage can be uncomfortable and cause a bloated feeling or nausea (see some tips on avoiding blockages). If you experience symptoms of a blockage for more than two hours or you start vomiting, contact your nurse or hospital.
Support for people with a stoma
If there is a chance you could need a stoma, the surgeon will probably refer you to a stomal therapy nurse before surgery. Stomal therapy nurses are registered nurses with special training in stoma care. They can talk to you about the best place for the stoma to be located, answer questions about your surgery and recovery, and give you information about adjusting to life with a stoma. For more details, visit the Australian Association of Stomal Therapy Nurses or call Cancer Council 13 11 20.
Join a stoma association
With your consent, the stomal therapy nurse will sign you up to a stoma (or ostomy) association. For a small annual membership fee, you will be able to obtain free stoma appliances and products. Stoma associations also provide assistance and information to members and coordinate support groups for people of all ages. The Australian Council of Stoma Associations represents stoma associations across Australia.
Register for the Stoma Appliance Scheme
The Australian Government’s Stoma Appliance Scheme (SAS) provides free stoma supplies to people with a temporary or permanent stoma. To apply for the SAS, you must hold a Medicare card and belong to a stoma association.
Download a PDF booklet on this topic.
A/Prof Craig Lynch, Colorectal Surgeon, Peter MacCallum Cancer Centre, VIC; Prof Tim Price, Medical Oncologist, The Queen Elizabeth Hospital, Adelaide, and Clinical Professor, Faculty of Medicine, The University of Adelaide, SA; Department of Dietetics, Liverpool Hospital, NSW; Dr Hooi Ee, Gastroenterologist, Sir Charles Gairdner Hospital, WA; Dr Debra Furniss, Radiation Oncologist, Genesis CancerCare, QLD; Jocelyn Head, Consumer; Jackie Johnston, Palliative Care and Stomal Therapy Clinical Nurse Consultant, St Vincent’s Private Hospital, NSW; Zeinah Keen, 13 11 20 Consultant, Cancer Council NSW; Dr Elizabeth Murphy, Head, Colorectal Surgical Unit, Lyell McEwin Hospital, SA. We also thank the health professionals, consumers and editorial teams who have worked on previous editions.
View the Cancer Council NSW editorial policy.
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