Living with a urostomy

Some people with cancer of the bladder will need the complete cystectomy operation that leads to having a urostomy. This can feel very frightening at first. Learning to look after a urostomy takes time and patience, and help is available. Like anything new, it gets easier with practice.

Daily life

Most people who have a urostomy can get back to a normal life. Many return to their jobs and take up their favourite pastimes again, including swimming.

Most hospitals have specially trained nurses called stoma care nurses, who will show you how to look after your urostomy 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 urostomy. Your nurse or doctor may be able to 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 invaluable, especially in the first few months after your operation.

The stoma

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, but there are many considerations which must be taken into account when planning the position. Wrinkles, scars and prominent underlying bones must be avoided, as placing the stoma near them may cause problems with leakage later on. Sometimes the stoma can be tailored to a person’s particular need, for example a keen golfer may prefer a left-sided stoma so that it doesn’t interfere with playing golf.

For the first few days after your operation, the nurse will look after your urostomy for you and make sure that the bag is emptied and changed as often as is 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 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 different types of bag (appliance) available and the nurse will help you to choose one that suits you best. When you are changing your bag, it helps to allow yourself plenty of time and privacy, so that you can do things at your own pace without interruptions.

Appearance

Most modern urostomy bags are designed to be flat and unnoticeable under clothing, but the size and position of the stoma will be the most important factor in whether or not the bag or appliance is noticeable through your clothes.

The style of clothing you wear is obviously important, but many young people with a urostomy find that they can wear the tightest clothes without other people knowing that they are wearing a stoma bag. Although you may stay conscious of your urostomy, few other people will ever notice unless you tell them.

Stoma supplies

Before you leave hospital, the nurse will make sure you have a good supply of urostomy bags. When you are at home you can get all your supplies from your chemist. As some chemists do not have a very large stock, it is often a good idea to place your order well in advance. Sometimes it is better to get your supplies direct from a local stockist. The Urostomy Association can give you details of these.

Support

Once you are at home you will still be able to phone your stoma care nurse for advice. Your GP may also be able to arrange for a district nurse to visit you for a few days when you first leave hospital. The nurse can help to sort out any problems you may have with your urostomy.