If you have a radical cystectomy, the surgeon will create an artificial opening to your urinary system (urostomy). A urostomy is a significant change, and it’s natural to feel overwhelmed. Learning to look after the urostomy may take time and patience. However, after you learn how to take care of it, you will find you can do your regular activities.
Before your operation the surgeon and/or stomal therapy nurse will plan the position of your stoma. The stoma is usually formed on the abdomen, to the right of the belly button (navel). The medical team must take into account any wrinkles, scars or bones near the stoma, as placing it in the incorrect place could cause leakage later on.
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 to its normal size. The stoma may also produce a thick white substance (mucus). This will lessen as time passes, but the mucus won’t disappear completely.
Sometimes the position of the stoma can be tailored to a person’s particular need. For example, a golfer may prefer a stoma placed so that it doesn’t interfere with playing sport.
The stoma nurse will show you how to clean your stoma and change the bags (appliances), which will need to be done regularly. It may be helpful for a close relative or friend to join you at this time in case you ever need help at home. There are several types of appliances available, and the nurse will help you to choose one that suits you best.
The first few times you are changing your bag, allow yourself plenty of time and privacy so that you can work at your own pace without interruptions.
It’s natural to worry about how the urostomy will affect your lifestyle, including your relationships and appearance. You may be worried about rejection, having sex with your partner, or starting a new relationship.
Some people with cancer have the support of a partner, while others do not. 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. Many people find that once they talk about their fears, their partner is understanding and supportive.
Although the urostomy may make you feel self-conscious, most modern appliances are designed to be flat and unnoticeable under clothing. Whether or not your appliance is noticeable through your clothes will depend on its size and location.
The style of clothing you wear is also important, but most people with a stoma find that they can wear fitted clothing without it being obvious that they are wearing a bag. It’s unlikely that anyone will notice unless you tell them.
Stomal therapy nurses have specialist training in helping people with stomas.
Stomal therapy nurses work in many hospitals. Your surgeon, GP, Cancer Council 13 11 20 or an ostomy association can help you find a stomal therapy nurse.
"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."
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 prescribed chemotherapy. Like the BCG, it was delivered directly into the bladder.
Unfortunately, another 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 who had a stoma, I decided to have the operation.
During recovery in hospital, I had a catheter to drain my urine. A couple of days before going home, the stoma nurse showed me how to take care of 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.
Before you leave hospital, the nurse will make sure you feel comfortable changing the urostomy bag and have a supply of bags.
When you are at home you will be able to contact your stomal therapy nurse for advice. Your doctor may also be able to arrange for a district nurse to visit you when you first leave hospital to sort out any problems you may have with your urostomy.
You can join an ostomy association for support, free bags and related products. Visit the Australian Council of Stoma Associations website at www.australianstoma.com.au.
The Stoma Appliance Scheme (SAS) provides stoma-related products (aids and appliances) free of charge to members of stoma associations. The scheme is funded by the Australian Government.
"Medicare subsidises urostomy bags and associated appliances. I pay for membership to my state’s ostomy association and then all I have to pay is the postage when the urostomy bags are sent to me."