Living with a urostomy
Some people with bladder cancer may need an operation to remove the bladder (cysectomy) that leads to having a urostomy. This can feel very frightening at first. Getting used to a urostomy and learning to look after it takes time, but help is available. Like anything new, it gets easier with practice.
A specially trained nurse called a stoma care nurse will show you how to look after your urostomy and can 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 with you about how they coped. This kind of advice can be very helpful, especially in the first few months after your operation.
Most people who have a urostomy can get back to a normal life. Many go back to work and take up their favourite pastimes again, including swimming. Your stoma nurse can give you information and advice.
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, and it may be placed on the right or left of the belly button (navel).
Sometimes the stoma can be tailored to a person’s particular need. For example, a keen right-handed golfer may prefer a left-sided stoma so that it doesn’t interfere with playing golf.
For the first few days after your operation, your nurse will look after your urostomy for you. They will make sure that 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 final size. The stoma will also produce mucus (a thick white substance), which might appear as pale ’threads’ in the urine.
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 be shown as well in case you ever need help at home.
There are different types of bags (appliances) available. Your nurse will help you choose one that suits you best. When you’re changing your bag, allow yourself plenty of time and privacy so you can do things at your own pace and without interruptions.
Urostomy bags are flat so they won’t be noticed under your clothes. The size and position of the stoma is the most important factor in how noticeable the bag is through your clothes. Many people with a urostomy can wear their tightest clothes without anyone knowing they have a stoma bag. Although you may be very aware of your urostomy, people won’t usually notice it unless you choose to tell them.
Before you leave hospital the nurse will make sure you have a supply of urostomy bags. When you’re at home, you can get all your supplies from your chemist. As some chemists don’t have a very large stock, it’s often a good idea to give them your order well in advance. Sometimes it’s better to get your supplies direct from a local stockist. The Urostomy Association can give you details of stockists close to you.
Once you’re at home, you’ll still be able to phone your hospital stoma care nurse for advice, and you may also have contact with a community stoma nurse. The hospital staff can arrange for a district nurse to visit you when you first leave hospital and are recovering. The nurse can help sort out any problems you may have with your urostomy.