Before your operation, the surgeon and/or a stomal therapy nurse will plan where the stoma will go. It will usually be created on the abdomen, to the right of the bellybutton. Sometimes the position can be tailored for particular needs.

For the first few days after the operation, the nurse will look after your stoma for you and make sure 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. The stoma may also produce a thick white substance (mucus), which might appear as pale threads in the urine. The amount of mucus will lessen over time, but it won’t disappear completely.

The stomal therapy nurse will show you how to clean your stoma and change the bags (appliances). This will need to be done regularly, usually every 2–3 days. A close relative or friend could join you for the instructions in case you need help looking after the stoma when you’re at home. There are different types of bags and the stomal therapy nurse will help you choose one that suits you.

How often you need to empty a bag is affected by what you drink. The first few times you empty your bag, allow yourself plenty of time and privacy so that you can work at your own pace without interruptions. Empty a drainable bag into the toilet when it is about one-third full.

Having a urostomy is a significant change and many people feel overwhelmed at first. It’s natural to be concerned about how the urostomy will affect your appearance, lifestyle and relationships. Learning to look after the urostomy may take time and patience. After you learn how to take care of it, you will find you can still do your regular activities.

Although the urostomy may seem obvious to you, most people won’t be aware of the bag unless you tell them about it. Modern bags are usually flat and shouldn’t be noticeable under clothing.

After bladder surgery, you might have some physical changes that affect your sex life. You may be worried about being rejected, having sex with your partner or starting a new relationship. Sexual intimacy may feel awkward at first, but open communication usually helps.

Speaking to a counsellor or cancer nurse about your feelings and individual situation can be helpful. You can also get support from:

• a stomal therapy nurse – nurses who are trained in helping people with stomas. They can answer your questions, help you adjust to living with a stoma, assist with fitting and using a urostomy bag, and support you once you're home. 
• a stoma association – your stomal therapy nurse will usually help you join a stoma association. For a small annual membership fee, you will be able to get support, free bags and related products. 
• the Stoma Appliance Scheme – provides free stoma bags and related products to people who have a stoma. To be eligible, you must have a Medicare card and belong to a stoma association.
• our cancer nurses by calling 13 11 20.

It takes time to get used to a new bladder. The neobladder will not have the nerves that tell you when your bladder is full, and you will have to learn new ways to empty it.

The neobladder may produce a thick white substance (mucus), which might appear as pale threads in the urine. The amount of mucus will lessen over time, but it won’t disappear completely.

At first, the new bladder won’t be able to hold as much urine and you will probably need to empty your bladder every 2–3 hours. This will gradually increase to 4–6 hours, but it may take several months. During that time the neobladder may leak when full, and you may have to get up during the night to go to the toilet. 

Discuss any concerns with your nurse, physiotherapist, GP or urologist, and arrange follow-up visits with them. You may also find the following support useful:

• See a continence nurse or a pelvic floor physiotherapist – they will work with you to develop a toilet schedule to train your new bladder. Strengthening the pelvic floor muscles before and after surgery will help you control the neobladder. It can sometimes be difficult to fully empty the neobladder using your pelvic floor muscles, so the nurse will also teach you how to drain the bladder with a catheter. This is called intermittent self-catheterisation and it should usually be done twice a day to reduce the risk of urinary tract infections.
• Ask about the Continence Aids Payment Scheme (CAPS) – this scheme is operated by Services Australia (Medicare) and provides a payment for eligible people needing a long-term supply of continence aids, including catheters for draining the bladder. Ask the continence nurse if you’re eligible.
• Contact the National Continence Helpline – to speak to a nurse continence specialist and learn more about continence health.

You will have regular appointments to monitor your health, manage any ongoing side effects and check that the cancer hasn’t come back or spread. How often you see your doctor will depend on the cancer type and treatments.

People who still have a bladder will have regular follow-up cystoscopies, as this is the best way to find bladder cancer that has come back. The cystoscopy may be done in hospital in the outpatient department under local anaesthetic or in an operating theatre under general anaesthetic.

Depending on the stage and grade of the bladder cancer you had, you will need a follow-up cystoscopy every 3–12 months. This may continue for several years or for the rest of your life, but will become less frequent over time. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems. 

Sometimes bladder cancer does come back after treatment, which is known as a recurrence. If the cancer recurs and you still have a bladder, the cancer can usually be removed while it is still in the early stages. This will require a cystoscopy under general anaesthetic. If this isn’t possible, your doctor may consider removal of the bladder (cystectomy).

Some people need other types of treatment, such as chemotherapy, immunotherapy or radiation therapy. The treatment you have will depend on the stage, grade and risk category of the cancer, your previous treatment and your preferences.