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 when the bladder has been removed by surgery.
Learn more about:
- How it is done
- How the stoma works
- Positioning the stoma
- Having a stoma
- Living with a stoma
- Support for people with a stoma
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.
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.
Before your operation, the surgeon and/or 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.
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.
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.
Of course I’ve had nightmares about standing in front of a room of people and noticing a leak in my bag. But having a stoma hasn’t been a problem, and on the rare occasion the bag has leaked, it’s because I haven’t fitted it properly or changed it soon enough.
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 consultants.
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 also visit the Australian Council of Stoma Associations.
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. Visit health.gov.au and search for “Stoma Appliance Scheme”.
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.
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