Living with a urostomy

Daily life Back To Top

Most people who have a urostomy can get back to a normal life. Many go back 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 how they coped. This kind of advice can be very helpful, especially in the first few months after your operation.

The stoma Back To Top

Before your operation, the doctor or nurse will carefully plan the position of your stoma. This is to make sure 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 belly button (navel). 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, 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 normal size. The stoma will 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 different types of bag (appliance) available and your nurse will help you to choose one that suits you best. When you’re changing your bag allow yourself plenty of time and privacy, so that you can do things at your own pace and without interruptions.

Appearance Back To Top

Most urostomy bags are designed to be flat so that they can’t be noticed under your clothes. However, the size and position of the stoma will be the most important factor in how noticeable the bag or appliance is through your clothes.

The style of clothes you wear is also important. Many young 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.

Stoma supplies Back To Top

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 don’t have a very large stock, it’s often a good idea to give them 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 stockists close to you. 

Support Back To Top

Once you’re at home you will still be able to phone your stoma care nurse for advice and you may 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 to sort out any problems you may have with your urostomy.