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Managing changes after treatment

If you have surgery to remove the bladder, you will need another way to collect and store urine. This is known as a urinary diversion. It is a significant change, and your treatment team will offer support to help you adjust.

You can talk to your surgeon about the best type of urinary diversion for your situation. They will recommend one of the following options:

  • urostomy – creates an artificial opening to your urinary system
  • neobladder – creates a new bladder from your small bowel
  • continent urinary diversion – creates a pouch for holding urine from your small bowel.

The surgery and other bladder cancer treatments can have a range of impacts on sexuality and fertility, but there are ways to manage these.

Also known as an ileal conduit, a urostomy means that urine will drain into a bag attached to the outside of the abdomen. It is the most common type of urinary diversion.

The surgeon will use a piece of your small bowel (ileum) to create a passageway (conduit). This ileal conduit connects the ureters (the tubes that carry urine from your kidneys) to an opening created on the surface of the abdomen. This opening is called a stoma.

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How the stoma works

A watertight bag is placed over the stoma to collect urine. This small bag, worn under clothing, fills continuously and needs to be emptied throughout the day through the tap on the bag. The small bag will be connected to a larger drainage bag at night.

Positioning the stoma

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.

Your surgeon will discuss the placement of the stoma with you and ensure that it doesn’t move when you sit, stand or move. They will consider any skin folds, scars or bones, as placing the stoma in the wrong place could cause leakage later on. Sometimes the position can be tailored for particular needs. For example, golfers may prefer the stoma to be placed so that it doesn’t interfere with their golf swing.

Having a stoma

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.

Attaching the bag – The stomal therapy nurse will show you how to clean your stoma and change the bags (appliances). This will need to be done regularly. A close relative or friend could join you
for these instructions in case you ever need help at home. There are different types of bags, and the stomal therapy nurse will help you choose one that suits you.

Emptying the bag – The first few times you change 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. It’s okay to put an empty bag into a rubbish bin, but don’t flush it down the toilet.

Living with a stoma

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.

You may worry about how the bag will look under clothing. 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.

Learning to look after the urostomy may take time and patience. The stoma may sometimes affect your travel plans and social life, but these issues can be managed with planning. After you
learn how to take care of it, you will find you can still do your regular activities.

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. If you meet a new partner during or after treatment, it can be difficult to talk about your experiences, particularly if your sexuality has been affected.

Sexual intimacy may feel awkward at first, but open communication usually helps. Many people find that once they talk about their fears, their partner is understanding and supportive, and they can work together to make sex more comfortable.

Support for people with a stoma

See a stomal therapy nurse – Stomal therapy nurses are trained in helping people with stomas. Nurses can:

  • answer your questions about the surgery and side effects, including the impact on sexuality and intimacy
  • help you adjust to having a stoma and regain your confidence
  • assist you with fitting and using urostomy bags
  • give you (and any carers) details about looking after the stoma
  • provide ongoing care and support once you are home.

Stomal therapy nurses work in many hospitals. Before you leave hospital, the stomal therapy nurse will make sure that you feel comfortable changing the urostomy bag and that you have a supply of bags. Once you are back home, you can contact the stomal therapy nurse for advice, and your doctor may also be able to arrange for a community nurse to visit you.

Your surgeon or GP can help you find a stomal therapy nurse, or you can ask
Cancer Council’s 13 11 20 nurses.

Join a stoma association – Your stomal therapy nurse will usually help you join a stoma association for support, free bags and related products. You can visit the Australian Council of Stoma Associations at australianstoma.com.au.

Register for the Stoma Appliance Scheme – The Australian Government’s Stoma Appliance Scheme (SAS) provides stoma bags and related products free of charge to members of stoma associations.

This method of collecting urine creates a pouch that works the same way as the bladder. This new bladder is called a neobladder and it allows you to urinate as usual without the need for a stoma.

The procedure for creating a neobladder is more complex and takes longer than creating a urostomy. The neobladder is made from a short length of your small bowel that is shaped into a pouch and placed in the same area as your original bladder. The surgeon will stitch your ureters into the top area of the neobladder (chimney). Urine will drain from the kidneys through the ureters into the neobladder.

Strengthening the pelvic floor muscles before and after surgery will help you control the neobladder. A physiotherapist can teach you exercises.

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Living with a neobladder

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. Discuss any concerns
with your nurse, physiotherapist, GP and urologist, and arrange follow-up visits with them.

See a continence nurse – This specialist nurse will work with you to develop a toilet schedule to train your new bladder. 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. This may mean that the neobladder leaks when full, and you may have to get up during the night to go to the toilet.

It can often 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 should usually be done twice a day to reduce the risk of infection.

Ask about the Continence Aids Payment Scheme (CAPS) – The Continence Aids Payment Scheme is operated by the Department of Human Services (Medicare) and provides a payment for eligible people needing a long-term supply of continence aids, including catheters for draining the bladder. You can ask the continence nurse if you’re eligible. Visit their website or call the CAPS Team on 1800 239 309.

Contact the National Continence Helpline – Call 1800 33 00 66 or email helpline@continence.org.au for more information.

In this procedure, the surgeon uses a piece of the small bowel to create a pouch inside the body. A valve allows urine to be stored inside the pouch and then removed through a stoma (an opening on the surface of the abdomen). This procedure is not commonly used today but may be an option in some circumstances.

How continent urinary diversion works

The surgeon connects the pouch to the ureters, which drain urine into it from the kidneys. The pouch valve is joined to the surface of the abdomen, where the stoma is created. Several times a day, you will need to drain the urine by inserting a drainage tube (catheter) through the stoma into the pouch. Once the pouch is empty, you remove the catheter. You do not have to wear a bag over the stoma.

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Living with a continent urinary diversion

Continent urinary diversion became popular for a time because it doesn’t require a stoma bag, but there is a high risk of problems requiring further surgery.

Using the catheter requires good hand–eye coordination, so continent urinary diversion may not be an option if you are elderly or if your coordination is limited for another reason.

See a stomal therapy nurse or urology nurse – They can teach you how to use the catheter to drain your pouch and will help you set up a schedule so that you are emptying it regularly. You will probably need to empty it about five times a day. It may take a while to become comfortable using the catheter, but most people find that they can return to their usual activities over time.

Keep the stoma and surrounding skin clean – Regularly wash your stoma with mild soap and water, and wipe away any extra mucus. Rinse the stoma well and dry it thoroughly.

Look for signs of blockages – The opening to the pouch may become blocked by urinary tract stones, a mucus plug or another obstruction. This will cause pain. It can usually be relieved using the catheter to drain the urine through the stoma. If this doesn’t work, seek urgent medical attention.

In rare cases, a swollen abdomen and/or abdominal pain can mean that the pouch created to store urine has ruptured. This is a medical emergency, so you should go straight to hospital.

Your treatment team can give you more information about ways to manage any changes to your sexuality and fertility. You may find these changes upsetting and worry about the impact on your relationships. It may be helpful to talk about how you’re feeling with your partner, family members or a counsellor. 

Changes for men

nerve damage – A cystectomy can often damage nerves to the penis, but t he surgeon will try to prevent or minimise this. Nerve damage can make it difficult to get an erection. Options for improving erections include:

  • oral medicines available on prescription that increase blood flow to the penis
  • injections of medicine into the penis
  • vacuum devices that use suction to draw blood into the penis and make it firm
  • an implant called a penile prosthesis – under general anaesthetic, flexible rods or thin inflatable  cylinders are inserted into the penis and a pump is placed in the scrotum; the man can then turn on or squeeze the pump when an erection is desired.

orgasm changes – You will not be able to ejaculate after a radical cystectomy if the prostate and seminal vesicles were removed along with the bladder. Many men can still feel the muscular spasms and pleasure of an orgasm even if they cannot ejaculate or get an erection, but it will be a dry orgasm because they no longer produce semen.

fertility changes – If the prostate and seminal vesicles are removed, you will no longer produce semen. This means you will no longer be able to have children naturally. If you may want to have
children in the future, talk to your treatment team about whether you can store sperm at a fertility clinic before treatment. The sperm could then be used when you are ready to start a family.

Changes for women 

vaginal changes – In some women, the vagina may be shortened or narrowed during a cystectomy. In addition, some nerves that help keep the vagina moist can be affected, making the vagina dry. These changes can make penetrative sex difficult or uncomfortable at first. You can manage them by:

  • using a hormone cream (available on prescription) to keep your vagina moist
  • asking a physiotherapist how to use vaginal dilators to help stretch the vagina – vaginal dilators are plastic or rubber tube-shaped devices that come in different sizes
  • when you feel ready, trying to have sex regularly and gently to gradually stretch the vagina – a water-based or silicone-based lubricant (available from pharmacies and supermarkets) can make this more comfortable.

arousal after cystectomy – A cystectomy can damage the nerves in the vagina or reduce the blood supply to the clitoris, which can affect sexual arousal and the ability to orgasm. Talk to your surgeon or nurse about ways to minimise potential side effects. You can also try exploring other ways to become aroused, such as caressing of the breasts, inner thighs, feet or buttocks.

menopause and fertility – Some women may have their uterus and other reproductive organs removed during a radical cystectomy. If you have not yet gone through menopause, this will cause menopause. Your periods will stop and you will no longer be able to conceive children. As your body adjusts to changes in hormone levels, you may experience symptoms such as hot flushes and vaginal dryness.

Download our booklet ‘Sexuality, Intimacy and Cancer’

Download our booklet ‘Fertility and Cancer’

This information is reviewed by

This information was last reviewed in February 2020 by the following expert content reviewers: Prof Dickon Hayne, UWA Medical School, The University of Western Australia, and Head, Urology, South Metropolitan Health Service, WA; BEAT Bladder Cancer Australia; Dr Anne Capp, Senior Staff Specialist, Radiation Oncology, Calvary Mater Newcastle, NSW; Marc Diocera, Genitourinary Nurse Consultant, Peter MacCallum Cancer Centre, VIC; Dr Peter Heathcote, Senior Urologist, Princess Alexandra Hospital, and Adjunct Professor, Australian Prostate Cancer Research Centre, QLD; Melissa Le Mesurier, Consumer; Dr James Lynam, Medical Oncologist Staff Specialist, Calvary Mater Newcastle and The University of Newcastle, NSW; John McDonald, Consumer; Michael Twycross, Consumer; Rosemary Watson, 13 11 20 Consultant, Cancer Council Victoria.