Living with a Urostomy

Information and support

The Urostomy Association has many years experience of answering questions about urinary diversions.

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. The Urostomy Association may be able to arrange for a volunteer to visit you and talk with you about how they coped. This kind of information and support 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 and dancing. We can give you information and support.

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, 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.

Appearance

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.

How to use a Urostomy bag

A urostomy bag is designed to stick onto your abdomen where it collects urine from your stoma. It’s waterproof so you can wear it while showering or bathing.

A urostomy bag has special features including a non-return valve to stop urine from washing over the stoma, helping prevent urinary infections. There’s also a tap or bung at the bottom of the bag to make it easy to drain the contents into a toilet.

When should I drain or change my bag?
Your urostomy will work steadily throughout the day. Most people tend to change their bag in the morning as their urine output is usually at it’s lowest at this time (providing of course that you haven’t drunk all night). Another good tip is to cough a few times before changing your bag as this will empty most of your urine into the bag first.

How often you need to drain or change your bag will vary from person to person. During the night, a urostomy bag or a small urostomy appliance can be attached to a night bag so you don’t need to get up to drain your bag.

Your specialist stoma nurse will be able to give you information and support on how often you need to change your bag. It’s recommended that you empty the bag before you remove it. Then seal the bag inside a disposal bag and place in the dustbin. DO NOT flush your bag down the toilet, as it will cause a blockage.

Taking care of your skin

One of the most important things to remember is to take good care of the skin around your stoma. Here are a few tips that you may find helpful:

The adhesive plate must fit snugly around your stoma

If the hole in the adhesive plate is larger than your stoma, your skin will become exposed to the harmful effects of the urine and become sore. Also, if the adhesive plate is cut too small, it may cause damage to your stoma. So check regularly to ensure that the adhesive plate has a snug fit around your stoma.

Watch out for irritants
Leakage on to the skin, excessive removal of the adhesive plate and harsh skin cleansers can all cause irritation of the skin.

Bleeding

It’s usual to experience a small amount of bleeding around your stoma when cleaning. This is not a cause for alarm. However, if bleeding comes from inside the stoma you should see your doctor urgently.

Stoma supplies

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.

Support

Once you’re at home, you’ll still be able to phone your hospital stoma care nurse for information and support, 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.

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