Urostomy

What is a urostomy?

Also known as an ileal conduit, a urostomy is the most common type of urinary diversion. In a urostomy, 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 connects the ureters (the tubes that carry urine from your kidneys) to an opening created in the abdomen. The opening is called a stoma.

Urostomy

How the stoma works

A watertight, drainable bag is placed over the stoma to collect urine. The bag has an adhesive backing that sticks to your abdomen. This small bag is worn under clothing, fills continuously and needs to be emptied several times a day through a tap or bung on the bag. The small bag will be connected to a larger drainage bag at night if required.

Positioning the stoma

Before the operation, the surgeon and/or a stomal therapy nurse will plan where the stoma will go. They will discuss the position with you and aim to place the stoma so it doesn’t move when you sit, stand or move. 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. The stoma will usually be created on the abdomen, to the right of the belly button.

Having a stoma

For the first few days after the operation, the stomal therapy nurse will look after the stoma and make sure the bag is emptied and changed as often as necessary.

Once you are ready, the stomal therapy nurse will teach you and/or your carer/family member how to care for the stoma. At first, the 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.

Stents (small plastic tubes) will be used to help with the flow of urine while the ureters heal. These stents are placed at the time of surgery and are temporary. They will be removed before you are discharged from hospital, or up to 3 weeks after surgery. Your surgeon will talk to you about when the stents will be removed.

Attaching the bag – There are different types of bags (sometimes called appliances) and the stomal therapy nurse will help you choose one that suits you. The nurse will show you how to clean your stoma and change the bags. This will need to be done regularly, usually every day while in hospital (for teaching purposes) and every 2–3 days after that. It might be helpful to have a close relative or friend join you when the nurse gives the instructions so they can support you at home.

Emptying the bag – How often you need to empty a bag is affected by how much you drink. Staying hydrated is very important with a urostomy. The first few times you empty the bag, allow yourself plenty of time and privacy so that you can work at your own pace without any interruptions.

Living with a stoma

Having a urostomy is a major change and many people feel overwhelmed at first. It’s natural to worry about how the urostomy will affect your appearance, lifestyle and relationships.

Learning to look after the urostomy may take time and patience. It may sometimes affect your travel plans and social life in the early days while you are gaining confidence, but these issues can be managed with planning. After you learn how to take care of the stoma, 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 know you are wearing a bag unless you tell them about it. Modern bags are usually flat and shouldn’t be noticeable under clothing.

After bladder surgery, you may have some physical changes that affect your sex life. You may worry about being rejected or having sex with your partner. If you meet a new partner during or after treatment, it can be difficult to talk about your experiences, particularly if your sex life and body image have 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 sexual activities more comfortable.

Having a stoma hasn’t been a problem. On the rare occasion the bag has leaked, it’s because I haven’t fitted it properly or changed it soon enough.

David

Support for people with a stoma

See a stomal therapy nurse

Stomal therapy nurses are trained in helping people with stomas. They will:

• arrange for you to speak with another person living with a stoma
• answer your questions about the surgery and side effects, including the impact on sexual activities and intimacy
• help you adjust to having a stoma and regain your confidence
• assist you with fitting and using urostomy bags
• give you written instructions on caring for your stoma
• provide ongoing care and support once you are home.

Stomal therapy nurses work in many hospitals. Before you leave hospital, the nurse will make sure that you feel comfortable changing the urostomy bag and that you have a supply of bags.

If your hospital doesn’t have a stomal therapy nurse, your treatment team can help you find one. Or you may be able to find a nurse near you by visiting the Australian Association of Stomal Therapy Nurses (AASTN). Your doctor may also be able to arrange for a community nurse to visit you.

Join a stoma association

Your stomal therapy nurse will usually help you join a stoma association. For a small annual fee, you will be able to get support, free bags and related products. Visit the Australian Council of Stoma Associations.

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.