Having a stoma

The two types of stoma are a colostomy (made from the colon in the large bowel) and an ileostomy (made from the ileum in the small bowel). A stoma may be temporary or permanent.

A temporary stoma is needed only until the newly joined bowel has healed. In this situation, a loop stoma is often used. A loop of the bowel is brought out, and then opened and stitched to the skin. This creates two openings. If you have a temporary stoma, you will have another operation, usually after 3–12 months, to close the stoma and rejoin the bowel. This is called a stoma reversal. The process for reversing the stoma will depend on the type of stoma you have. Less than 10% of people with bowel cancer need a permanent stoma.

Like the inside of the mouth, a stoma is soft, moist, and red or pink in colour. It may be level with the surrounding skin or slightly raised. The stoma itself doesn’t have any feeling, but the skin around it does.

Stomas vary in size and can change shape during the weeks after surgery. A stomal therapy nurse will usually see you before any surgery which may result in a stoma. They will also see you after your operation to teach you how to look after the stoma and give you advice about any changes to your stoma or the skin around it.

Bowel stomas

Click on image to enlarge

When the bowel moves, wind and waste matter (faeces, stools or poo) come out through the stoma. You cannot control when this happens, but a small disposable bag is worn on the outside of the body to collect the waste. This is called a stoma bag or an appliance. Stoma bags have adhesive on the back so they stick firmly to the skin and provide a leak-proof, odour-proof system. A filter lets out any wind (but not the odour), which should stop the wind inflating the bag. The bag usually can’t be seen under clothing.

Attaching the bag – A stomal therapy nurse will help you choose an appliance that suits your body shape and the stoma, and will explain how to attach it securely.

Emptying the bag – Stoma bags can be drainable (able to be emptied) or closed (discarded after each bowel movement). With an ileostomy, you wear a drainable bag because the waste matter tends to be watery or soft. With a colostomy, the bag may be drainable or closed, depending on the consistency of your waste matter. A drainable bag has to be emptied down the toilet when it is about one-third full. A closed bag should be put in a rubbish bin after each bowel movement (not flushed down the toilet).

Some people don’t like to wear stoma bags. If you have a colostomy in your descending colon, you may be able to learn how to give yourself a type of enema (colostomy irrigation) to remove the waste every day or two. Talk to your doctor and stomal therapy nurse about this option.

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. If you experience symptoms of a blockage for more than two hours or you start vomiting, contact your nurse or hospital.

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 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.