Urinary diversions

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

How the stoma works

A watertight, drainable 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 a tap on the bag. The small bag will be connected to a larger drainage bag at night.

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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, usually every 2–3 days. It’s okay to put an empty bag into a rubbish bin, but don’t flush it down the toilet. 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.

Emptying the bag – 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.

Living with a stoma

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. 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.

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.

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. Your doctor may also be able to arrange for a community nurse to visit you.

If your hospital doesn’t have a stomal therapy nurse, your treatment team can help you find one. You can also visit the Australian Association of Stomal Therapy Nurses.

Join 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. Visit the Australian Council of Stoma Associations for more information.

Register for the Stoma Appliance Scheme – The Australian Government’s Stoma Appliance Scheme (SAS) 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.

Speaking to a counsellor or cancer nurse about your feelings and individual situation can be helpful. You can also call Cancer Council 13 11 20 to talk to a health professional about your concerns.

This method of collecting urine creates a pouch that works the same way as the bladder. This pouch is called a neobladder, and it allows you to urinate as usual. Having a neobladder means you won’t need a stoma.

The procedure for creating a neobladder is more complex and takes longer than creating a urostomy. The neobladder is made from a portion 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.

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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.

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.

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

See a continence nurse or a pelvic floor physiotherapist – They 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. During that time the neobladder may leak when full, and you may have to get up during the night to go to the toilet.

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

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. You  can ask the continence nurse if you’re eligible. Find out more at servicesaustralia.gov.au or call the CAPS Team on 1800 239 309.

Contact the National Continence Helpline – Call 1800 33 00 66 to speak to a nurse continence specialist or visit 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. Several times a day you will need to drain the urine by inserting a drainage tube (catheter) through the stoma into the pouch.

This diversion procedure is not commonly used, but may be an option in some circumstances. Your surgeon or nurse will explain the risks and benefits of this procedure, and how to empty urine from the pouch.