Living with a stoma (urostomy)

Get tips on how to cope practically and emotionally after a urostomy, bladder reconstruction or surgery to remove early bladder cancer.

What is it?

After surgery to remove your bladder, you might have a small, spout like hole called a stoma on your tummy (abdomen).

Your urine now comes out through the stoma. So it might take some time to get used to this.

Your stoma nurse can help you to look after the urostomy. They can also help with other practicalities, such as how to put a bag over the stoma to catch the urine.

Getting used to the changes in your body

It can take some time for you to come to terms with the changes in your body. But it helps to have supportive family and friends. There may be times after surgery when you feel discouraged. You may feel alone and isolated. This is normal, but talking to others may help. If you find this difficult, you might need some help from other people.

You might worry about how your stoma will affect:

  • your job
  • your relationships
  • your sex life
  • sports and hobbies

Learning to live with a urostomy may seem like a big challenge, but it will get easier over time. You will likely find that there is very little that you can’t do as a result of your surgery. You will become more confident about living with a stoma.

Your job

Having a urostomy should not affect your working life, unless your job involves heavy types of manual work such as digging.

Ask your stoma nurse for advice if you are unsure about this.

Your relationships

You will probably worry about how the stoma will affect your relationships, whether with a partner or with friends. You might have practical worries about the bag leaking or being noticeable. Or you may have emotional worries about how your friends or partner may react.

Stoma appliances are very well designed. They are not easily seen through your clothes and they shouldn’t leak. Talk to your stoma nurse if you have problems with your bag. A different type of bag may suit you better.

You will probably find that your fears will disappear if you can talk openly to friends and family about your surgery and urostomy. Most people understand and are very willing to help if they can.

Your social life can be as active as it was before surgery. You can enjoy all the things you did before, such as travel, sporting events, and eating at restaurants. The first time you go out of the house after surgery, you may feel as if everyone is staring at your pouch even though it can’t be seen under your clothes. Remember, you may feel the pouch on your body, but no one can see it.

Your sex life

After bladder surgery you might have some physical changes that can affect your sex life.

Keep in mind that the first time you become intimate after surgery, things may not go perfectly. Men may have trouble getting and keeping an erection and women sometimes have pain during sex. These problems usually get better with time. If they do not, speak to your doctor about treatments that might help.

Your interest in sex is likely to return as your strength returns and you get better at managing your pouch system. Body contact during sex will usually not harm the stoma or loosen the pouch. If the pouch or stoma covering seems to be in the way during sex, try different positions or use ostomy accessories to support the pouching system.

If possible, empty the pouch beforehand.

See how bladder cancer and its treatment can affect your sex life

Sports and social life

Everyone needs daily exercise to maintain good health. A urostomy should not keep you from exercising and playing sports. But you might need to take a few steps to make exercise safer or easier.

You can exercise and swim. You can wear a smaller urostomy bag while you swim if you prefer. Your stoma nurse can advise you about this.

There is no reason why you shouldn’t drink alcohol with a urostomy. But bear in mind that the more liquid you drink, the more urine you will pass. So you might have to get up in the night to empty your bag.

To get a good night’s sleep it can help to avoid drinking large amounts of any liquid later on in the evening. You can also attach a night drainage bag to your day bag so that it holds more urine.