Managing your urinary diversion

Most people find that they soon get used to having a urinary diversion. Your nurse will make sure that you have enough supplies at home before you leave hospital. They will give you advice and will arrange for a district nurse to visit you at home.

  • If you have a urostomy, your stoma nurse will show you how to look after the stoma. Most people with a urostomy can get back to their normal life.
  • If you have a bladder reconstruction, you will have a catheter for the first few weeks after surgery. After this, you will empty your new bladder yourself.
  • If you have a continent urinary diversion, you will have two catheters for the first few weeks after surgery. After this, your nurse will teach you how to empty and clean the pouch.

It can be difficult coping with a permanent change to your body, but there is lots of support available. Some people find it helps to talk to a partner or close friend about how they feel. Your doctor or nurse can help you with any worries.

Managing your urinary diversion

Getting used to a urinary diversion and learning to look after it takes time, but help is available. Like anything new, it gets easier with practice. Most people find that they soon get used to it.

Before you leave hospital, the nurse will make sure you have a supply of the equipment you need. When you’re at home, you can get your supplies (urostomy bags or catheters) directly from a supplier or your chemist. Your stoma nurse will tell you more about this. The Urostomy Association can also give you details of suppliers.

When you get home, you will still be able to phone your specialist nurse for advice. You may also have contact with a community stoma nurse. The hospital staff will arrange for a district nurse to visit you when you first leave hospital. The nurse can help you if you have any problems with your urinary diversion.


Urostomy

A stoma 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 stoma nurse or doctor may be able to arrange for someone to visit or phone you and tell you about how they coped. This 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 activities again, including swimming. If you are worried about your life after surgery, you can talk to your stoma nurse.

The stoma

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. 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 bag. It may be helpful for a close relative or friend to be shown as well, in case you ever need help.

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 it 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.


Bladder reconstruction

After your surgery, you will go home with a catheter to drain the urine from your new bladder (neobladder).

Your nurse will explain how to look after it before you go home. The bowel tissue used to make the new bladder continues to make mucus. This can block the catheter, so you will need to flush your catheter several times per day using fluid and a syringe. Your nurse will teach you how to do this or they can refer you to a district nurse who will help.

After a few weeks, you will return to hospital to have an x-ray called a cystogram. The catheter will also be removed. You may have to stay in hospital for a day or two after this, to make sure your bladder is emptying fully.

Emptying your new bladder

At first, you will have to empty your bladder every two to three hours. Over time, your new bladder will stretch and be able to hold more urine. But you may still have to empty it every four to six hours. Some people may also need to pass a catheter into their urethra (self-catheterise) to empty the new bladder completely. Some people may leak urine at times to start with, but this usually improves over a few months. If this doesn’t get better, talk to your specialist nurse or surgeon. They can suggest things to help and may refer you to a continence adviser.

Before your surgery, your nurse will show you how to do pelvic floor exercises. It’s important to keep doing these as they can help with continence.


Continent urinary diversion

When you go home, you will have two catheters. One goes into the pouch through your tummy and the other through the stoma.

Once the pouch has healed, usually six weeks after your surgery, you will return to hospital. You will usually stay in hospital for a day or two for the catheters to be removed. You will also learn how to empty the pouch and wash it out. Your specialist nurse will teach you how to do this.

Emptying your pouch

To empty your pouch, you will put a fine tube (catheter) through the stoma into the pouch. At first, you will need to do this every couple of hours until your pouch stretches. In time, you may be able to leave the pouch for up to six hours without emptying it during the night.

Washing out your pouch

As well as emptying your pouch, you will need to wash it out. The bowel tissue used to make the pouch continues to make mucus, which could cause an infection if it isn’t washed out.

You’ll need to wash out your pouch several times a day. To do this, you put fluid through the catheter that you use to drain your pouch. Your specialist nurse will teach you how to do this.

Different surgeons may give slightly different instructions on how you should empty and flush out your pouch, and the equipment you should use. Follow the advice you are given. If you need more support, talk to your specialist nurse or doctor.


Toilet card

If you need to go to the toilet more often, or feel that you can’t wait when you do want to go, you can get a card to show to staff in shops, pubs and other places. The card allows you to use their toilets without them asking awkward and embarrassing questions. Macmillan produces a toilet card, which you can order from be.macmillan. We hope this card helps you get urgent access to a toilet, but we cannot guarantee that it will work everywhere.

The National Key Scheme (NKS) offers access to about 9,000 locked public toilets across the UK. You can buy a key from Disability Rights UK. They can also send you details of where the toilets are located.

You can read other people’s experiences of bladder cancer and urinary diversion on our Online Community. You can also talk with people who know what you’re facing. Visit macmillan.org.uk/community

Support groups are another way to meet and talk with people going through a similar experience – visit macmillan.org.uk/supportgroups


Body image changes

You may be worried about adapting to changes in the way your body looks and works. This may affect how you think and feel about your body (body image). This is a normal reaction and it can take time to adjust.

Over the years, everyone develops an image in their minds of what their body looks like. Although someone may not be completely satisfied with that image, most people are used to the way they see themselves. It can be upsetting to have that changed permanently by surgery.

Many people find that they feel reassured once they’ve talked about their fears. You could talk to your partner or someone close to you about it. Talking also gives other people the chance to understand more about how you are feeling.

You can also talk to your doctor or nurse about your concerns, and the organisations on our datatbase can give you support.

You may find our information about body image and cancer helpful. It’s been developed with the help of people who have experienced body changes and includes quotes about their experiences.

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