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.

Learn more about:

• Living with a stoma
• Support for people with stomas

Living with a stoma

The stoma may sometimes affect how you travel, your 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 do your usual activities.

How a stoma might look

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, belts), but you will generally be able to keep wearing your normal clothes. You might consider buying underwear designed for people with a stoma.

How a stoma might affect your sex life

You may worry that the stoma will affect your ability to give or receive sexual pleasure. In males, 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. In females, 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.

How a stoma might affect what you can eat

Sometimes foods can build up and 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 change what you eat. 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. If you experience symptoms of a blockage for more than two hours or you start vomiting, contact your nurse or hospital. Learn ways to manage stoma blockages.

Support for people with a stoma

See a stomal therapy nurse 

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 are available at most major hospitals, district nursing agencies and in private practice.

A stomal therapy nurse can talk to you about the best position for the stoma, answer questions about your surgery and recovery, and give you information about adjusting to life with a stoma. To find a nurse, 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.

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