Living with a urostomy, urine pouch or new bladder

After surgery to remove your bladder, you need another way to collect and pass your urine. Doctors call this urinary diversion. There are different types of urinary diversion. 

You might have:

• a bag outside your body to collect urine (urostomy or ileal conduit)
• an internal pouch to collect urine (continent urinary diversion)
• a new bladder (bladder reconstruction or neobladder)
• a pouch made from your back passage (recto sigmoid pouch)

How you pass urine depends on which surgery you have. Your nurse will support you after your operation. They help you learn and adapt to a new way of passing urine.

After the operation, you have to adjust to big changes to your body. This can affect  your day to day life. It can take time to get used to these changes.

Changes to your bowel movements

You may notice that your bowel movements change after surgery to remove your bladder. This is because the surgeon removes part of your bowel to make the urinary diversion. So your bowel is shorter than before.

Your bowel movements may become looser. This can improve over time but sometimes it doesn’t.  You might need medicines to help control your bowel movements, although this is rare.

Getting used to the changes in your body

It can take some time for you to adjust to the changes in your body. It can help to have support from family and friends. If you find this difficult, you might need some help from other people.

You might worry about how body changes will affect: 

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

With time you will hopefully find that there is little that you can't do, that you could do before your surgery. You will become more confident about living with these body changes. Your specialist nurse will be able to help you overcome some of your fear and build up your confidence.

Your job

The effect on your working life will depend on what job you do, and also what type of operation you have. After a urinary diversion, you will need access to a toilet at work.

After some recovery time, the surgery should not affect your working life, unless your job involves heavy types of manual work. For example, digging, or working in a warehouse or construction. Ask your specialist nurse for advice if you are unsure about this. 

If you have a new bladder (neobadder)

You might find, for example,  that your new bladder leaks if you're lifting something really heavy. You find out by trial and error whether any activities cause problems with leaking. 

Try emptying your new bladder more often. If it's leaking slightly when you're not doing anything too strenuous, pelvic floor exercises can help to stop this. Talk to your doctor or specialist nurse, they can also help you find ways to stop any leaking.

Your relationships

You will probably worry about how the surgery will affect your relationships, whether with a partner or with friends. For a few months, your body will be recovering from having major surgery. So you may not have the energy to meet people or go to places like you did before.

You might have practical worries about the urostomy bag leaking or being noticeable. Or about your new bladder leaking. This can make you feel embarrassed and anxious. So you may not want to be far from your home or toilets. 

You might find it helpful if you can talk openly to friends and family about your surgery. Most people understand and are very willing to help make things easier if they can.

If you have a urostomy

Stoma appliances are very well designed. They're 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.

If you have a new bladder (neobladder)

It will take time for you and your body to get used to your new bladder. It’s a good idea at the beginning to empty your new bladder more often. Reducing the amount you drink in the evening can help reduce accidents overnight. 

Your sex life

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

Sports and social life

Your surgery shouldn't stop you enjoying your favourite pastimes.

You can exercise and swim. If you have a urostomy, you can wear a smaller urostomy bag while you swim if you prefer. Or you can wear a waterproof dressing. Your stoma nurse can tell you about this. 

There is no reason why you shouldn't drink alcohol. But bear in mind that the more liquid you drink, the more urine you will pass. So you might have to get up more frequently in the night.

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

Radar key and just can't wait card

Many people worry about having access to a toilet when they’re out. There are special keys called radar key’s you can get that gives you access to thousands of toilets in the UK. It also tells you where they are.

Also, you can get a just can't wait card, this gives you peace of mind and access toilets in a rush. 

Speak to your specialist nurse about getting a radar key or just can't wait card.

Cancer Research UK nurses