Living with a stoma

What is a stoma?

When an illness involves the removal of a section of your bowel or bladder, your surgeon may need to form a hole in your abdomen called a stoma (sometimes referred to as an ‘ostomy’). The stoma opening is used to remove bodily waste — faeces (‘poo’) or urine, in the case of a urostomy — into a small collection bag.

Your stoma will look moist and pinkish-red and will protrude slightly from a circular hole in your abdomen. Your stoma may be swollen to begin with, but usually reduces in size over time. You shouldn’t feel anything in the stoma, and it shouldn’t be painful. Over time, bodily waste and gas will pass out through the stoma instead of your anus or urethra.

Living with a stoma can seem daunting at first — but you’re not alone. Around 46,000 Australians live with a stoma and, with help and support, many maintain a normal quality of life. While it may take time, there are specialist healthcare professionals who can help with the adjustment process.

When is a stoma used?

Stomas are needed by people of all ages, from newborns to older people. Stomas are needed for a variety of reasons, including:

• trauma to the abdomen (for example, caused by a car accident or other major injury)
• surgery to remove bowel cancer or other cancers in your pelvic area
• diseases such as Crohn’s disease or ulcerative colitis
• congenital (birth) abnormalities
• rare genetic disorders
• neurological disorders that make going to the toilet difficult
• changes to the bowel’s blood supply in premature babies and older people
• following radiotherapy in your pelvic area

Stomas can be created anywhere along the digestive system. Common types of stoma include:

• colostomy — in your colon or large intestine
• ilieostomy — in your small intestine or ileum
• urostomy — in your small intestine, which diverts urine from your bladder

Many stomas are temporary and can be reversed with surgery. In some cases, you will need a stoma permanently — for example, if the ends of your bowel can’t be reconnected after surgery, or if your anus needs to be removed due to a tumour.

How do I manage daily life with a stoma?

While it’s not easy at first, with the right help and support most people manage their stoma as part of their daily hygiene routine. Specialist healthcare professionals can help you as you adjust to this.

Using your stoma equipment

Learning to live with your stoma may take a little time. A dedicated stoma nurse will show you how to clean your stoma and change your bag, and can offer advice. There are several different types of ileostomy, colostomy and urostomy bags, and your nurse will help you to work out which one is most suitable for you.

Diet

Immediately after surgery you may need to eat less and more often, but you should gradually build up to 3 meals a day. This helps you to regain more predictable bowel movements.

Try to maintain a well-balanced diet while including your favourite foods. Chew your food properly so that your digestive system has less work to do later on. You may want to avoid certain foods that are difficult to digest, such as peanuts.

Odour and wind

Some foods may produce more wind (flatulence, or ‘gas’) than others. If this bothers you, cut down on those foods. Beer is fine in moderation but may produce wind and make your stoma output more watery.

Sport and exercise

Having a stoma shouldn’t stop you from enjoying your favourite sport or physical activity. There are special supports, bags and caps you can use to cover your stoma when swimming and playing sport.

Travel

After surgery, you may have an increased risk of deep vein thrombosis (DVT). Talk to your surgeon before any air travel, and remember to pack enough stoma-related supplies for your time away.

Sex and body image

Once your body has had time to heal from surgery, it’s OK to have sex with a stoma. Sexual intercourse won’t harm your stoma. Emptying your pouch beforehand will lower the chances of any unwanted ‘accidents’.

It’s important to talk to your partner about how you feel regarding sex and intimacy. Who and how much you tell them about your stoma is entirely your choice. If you’re nervous about how your partner may react to your stoma, remember that there’s more to how they feel about you than your physical appearance.