Living with a stoma
Some people with cancer of the rectum will need to have a colostomy.
Being told you need a colostomy can be daunting at first. Learning to look after a stoma takes time and patience, and no one expects you to be able to cope straight away. Like anything new it will get easier with time and practice.
In most hospitals there are specially-trained nurses called stoma care nurses (or colorectal nurses) who you’ll usually meet before your operation. They will show you how to look after your stoma and help you cope with any problems.
You may also find it helpful to talk to someone who has already learned to live with a stoma. Your nurse or doctor can often arrange for a volunteer to visit you and talk to you about the more practical and personal aspects of living with a stoma. This advice can be invaluable, particularly in the first few months after your operation. You can also contact the Colostomy Association.
The Healthtalkonline website has information about colostomies. It also has video and audio clips of people who have stomas talking about their experiences.
Before your operation, the nurse or doctor will carefully plan the position of your stoma so that your bag stays in place, whether you are sitting, standing or moving around.
For the first few days after your operation, the nurse will show you how to look after your colostomy and make sure that the bag is emptied and changed as often as necessary. At first your stoma will be slightly swollen and it can take several weeks before it settles down to its normal size.
As soon as you’re feeling well enough, the nurse will show you how to clean your stoma and change the bags. There are several different types of bag or appliance available, and the nurse will help you choose a suitable one.
When the nurse is showing you how to look after your stoma, it may help for a partner or close relative to be with you, in case you have any difficulties when you get home.
Before you leave hospital, your nurse will make sure that you have a good supply of stoma bags. Before you start to change or empty your bag, make sure that you have plenty of bags and cleaning materials to hand. It’s a good idea to keep everything you need in one place, so that you don’t have to search for things at the last minute. Make sure you allow yourself plenty of time and privacy, so that you can work at your own pace without any interruptions.
Some people with a colostomy avoid wearing a bag by flushing-out (or irrigating) their colostomy about once a day, although this method doesn’t suit everyone. Your stoma nurse will be able to discuss this with you in more detail.
There are different ways of getting stoma supplies when you’re at home. You can get all your supplies from your chemist. Sometimes it’s better to get your supplies direct from a specialised supply company. These may also offer a cut-to-fit and home delivery service. The Colostomy Association has details of companies.
The supplies are free, but you’ll need a prescription from your GP. If you’re aged between 16 and 60, make sure that your doctor signs the form saying that you’re entitled to free prescriptions.
Once you’re at home you can phone the stoma nurse if you have any problems. Your GP may also arrange for a district nurse to visit you for a few days when you first leave hospital. They can make sure you’re coping at home, and sort out any problems that you may have with your stoma.
Having a colostomy is a big change in your life. Many people find that they are embarrassed by the stoma, and that it affects the way they feel about their bodies. Embarrassment about a stoma can also affect relationships, and some people are uncomfortable about their partner seeing it.
These feelings are a natural part of coming to terms with the changes that a stoma causes, and usually decrease gradually over time.
You can contact our cancer support specialists if you want to chat about any concerns you have. Details of other helpful organisations can be found in the further resources section.