Living with a bladder reconstruction

Thursday 1 February, 2018

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On this page: Urostomy | Neobladder | Continent urinary diversion


If you have a radical cystectomy and your bladder is removed, you will need another way to collect and store urine (urinary diversion). You can discuss the best option for your situation with your medical team.

They will recommend one of the following options:

  • urostomy (also known as an ileal conduit) – creates an artificial opening to your urinary system (see below)
  • neobladder – creates a new bladder from your small bowel
  • continent urinary diversion – creates a pouch for holding urine from your small bowel.

Urostomy

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 bladder reconstruction.

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.

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.

Urostomy

Positioning the stoma

Before your operation, the surgeon and/or stomal therapy nurse will plan the position of your stoma. Your surgeon will discuss the placement with you and ensure that it doesn't move when you sit, stand or move.

The stoma is usually formed on the abdomen, to the right of the bellybutton (navel). The medical team will take into account any skin folds, scars or bones near the stoma, as placing it in the wrong place could cause leakage later on.

Sometimes the position of the stoma can be tailored to a person's particular needs. For example, golfers may prefer the stoma 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 will lessen over time, but the mucus won't disappear completely.

Attaching the bag

The stoma nurse will show you how to clean your stoma and change the bags (appliances), which will need to be done regularly. A close relative or friend could join you at this time in case you ever need help at home. There are different types of appliances available, 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. An empty bag can be put in a rubbish bin (not flushed down the toilet).

"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." – David

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 lifestyle, relationships and appearance.

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 appliance will look under clothing. Although the urostomy may seem obvious to you, most people won't be aware of the appliance unless you tell them about it. Modern appliances are usually designed to be flat and unnoticeable under clothing.

After bladder surgery, you might have some physical changes that affect your sex life. Some people with cancer have the support of a partner, while others do not. 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 impacted.

Sexual intimacy may feel awkward at first but 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 have specialist training in helping people with stomas. Nurses can:

  • answer your questions about the surgery
  • 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 an ostomy 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 stomarelated products (aids and appliances) free of charge to members of stoma associations. Visit health.gov.au and see "Stoma Appliance Scheme".

David's story

"One day I noticed some blood in my urine. I postponed going to the doctor – I talked myself into it being an infection. I eventually saw sense and went to see my GP who referred me to have an ultrasound scan.

"An ultrasound and cystoscopy confirmed that I had bladder cancer. During the cystoscopy, the surgeon removed the tumour, which was contained in the lining of the bladder.

"My urologist recommended that I have a course of BCG to prevent the cancer returning. Because the drug is inserted directly into the bladder, I didn't have any unpleasant side effects, except embarrassment!

"After BCG treatment, I had another cystoscopy. The cancer had come back, so it was removed again and I was given chemotherapy. Like the BCG, it was delivered directly into the bladder.

"Unfortunately, a third cystoscopy showed the chemotherapy hadn't worked, so the urologist recommended that I have my bladder removed. He told me that I would have a stoma. After getting a second opinion and talking to a friend with a stoma, I decided to have the operation.

"During recovery in hospital, I had a catheter in the stoma to drain my urine. Before I went home, the catheter was removed and the nurse explained how to look after the stoma and use the urostomy bags.

"Having a stoma and urostomy bag was difficult at first, but I got used to it after a few weeks. The stoma and bag really aren't visible and I can do almost everything I did before the operation. I have been swimming and cycling and have travelled extensively. When I speak to anyone in a similar situation, I always emphasise that there is life after having a stoma."

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Neobladder

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 an ileal conduit.

How the neobladder works

The neobladder is made from a short length of your small bowel, which 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.

Neobladder

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, 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 capacity of the new bladder will be small 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 empty the neobladder.

The nurse can also teach you how to drain your bladder with a catheter in case you can't empty it completely using your abdominal muscles. This is called intermittent self-catheterisation.

Check if you're eligible for the Continence Aids Payment Scheme (CAPS)

This 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 your bladder. You can ask the continence nurse if you're eligible. Find out more at bladderbowel.gov.au/caps 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.

Continent urinary diversion

In this procedure, a piece of small bowel is used to create a pouch inside the body. A valve allows urine to be stored inside the pouch for a period of time before being removed through a stoma (an opening on the surface of the abdomen).

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.

Continent urinary diversion

Living with continent urinary diversion

Continent urinary diversion became popular for a time because it doesn't require a stoma bag, but it has a higher complication rate. 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 with 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

Urine may become blocked due to urinary tract stones, a mucus plug or another obstruction causing pain. This 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.


Reviewed by: Phil Dundee, Urological Surgeon, Epworth Hospital, VIC; David Connah, Consumer; Dr Elizabeth Hovey, Senior Staff Specialist, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, and Conjoint Senior Lecturer, University of New South Wales, NSW; Colleen McDonald, Clinical Nurse Consultant Urology, Westmead Hospital, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council Western Australia, WA; Kerry Santoro, Urology Nurse Consultant, Repatriation General Hospital, SA.

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