| Bladder cancer | Diagnosing bladder cancer | Treatment for bladder cancer |
| Sexuality & bladder cancer | Living with a stoma |
This information has been reviewed by:
Associate Professor Jeremy Millar
Alfred Hospital, William Buckland Radiotherapy Centre.
Some people with bladder cancer will need a radical cystectomy and urostomy. Most people who have a urostomy live a normal life. Many return to their jobs and take up their hobbies again, including swimming. Learning to look after a stoma, however, takes time and patience and no one expects you to cope straight away. Like anything new, it will get better with practice.
Most hospitals have specially trained nurses called stomal therapy nurses, who will show you how to look after your stoma and help you cope with any problems. You may also find it helpful to talk with someone who has already learned to live with a stoma. Your nurse or doctor can often arrange for a volunteer to visit you and talk to you about the more personal aspects. This advice, which comes from their own experience, can be very useful, especially in the first few months after your operation.
Before your operation the doctor or nurse will carefully plan the position of your stoma, so that your bag will stay in place whether you are sitting, standing or moving about. The stoma is usually formed on the abdomen, to the right of the navel (belly button), but there are many things that must be taken into account when planning the site. Wrinkles, scars and prominent underlying bones must be avoided, as placing the stoma near them may cause leakage later on. Sometimes the stoma can be tailored to a person's particular need, for example a golfer may prefer a stoma placed so that it doesn't interfere with playing their sport.
For the first few days after your operation, the nurse will look after your stoma for you and make sure the bag is emptied and changed as often as necessary. At first your stoma will be slightly swollen and it may be several weeks before it settles down to its normal size. The stoma may also produce mucus (a thick white substance). As time passes the amount of mucus produced will lessen, but will never disappear completely.
As soon as you feel ready the nurse will show you how to clean your stoma and change the bags. It may be helpful for a close relative or friend to join you at this time in case you ever need help at home. There are several types of bag or appliance available and the nurse will help you to choose one that suits you best. When you are changing your bag, it will help to allow yourself plenty of time and privacy, so that you can work at your own pace without interruptions.
Before you leave hospital, the nurse will make sure you have a good supply of urostomy bags. Later, you will get your supplies direct from a local stockist. The urostomy or ileostomy association in your state will be able to help: call the Cancer Council Helpline on 13 11 20 for the phone number of your local association.
Once you are at home you will still be able to phone your stomal therapy nurse for advice. Your doctor may also be able to arrange for a district nurse to visit you for a few days when you first leave hospital, to sort out any problems you may have with your urostomy.
