If you need an ileostomy for bowel cancer

• A quick guide to what's on this page
• What an ileostomy is like
• Temporary ileostomy
• The stoma nurse
• Looking after your stoma
• Going home

An ileostomy is formed when the end of the small intestine, known as the ileum, is stitched to a hole that the surgeon cuts in the skin of your abdomen. The hole is called a stoma. The stoma is round or oval. It is moist and red like the inside of your mouth. Bowel motions (stools) pass out of the stoma. They will be a mixture of bowel liquid and semi-solid motion with some wind. The stoma has no nerve supply, so does not hurt. So you must be careful not to injure it because you won't be able to feel if you have done any damage.

The stoma is swollen just after your operation. But it will get smaller and flatter. You wear a bag stuck to the skin over the stoma to collect the stools. The stoma also oozes a white mucous. This is normal and the mucous collects in the bag with the faeces.

Some people with colorectal cancer have a temporary ileostomy. The ileostomy allows the bowel to heal after the cancer has been removed. A few months later, the bowel is rejoined and the stoma closed (reversed) in another operation.

Stoma nurses are experienced in looking after ileostomies and teaching you how to look after them. They will probably visit you on the ward before and after your operation and will help you to learn to look after your stoma. At the first visit, the nurse will answer your questions and show you the type of ileostomy bag you will be using at first. You will learn how the bag works and how to fit and empty it. For the first few days after your operation, your stoma nurse will help you to look after your ileostomy, clean the stoma and change the bags. They will also help you to find which type of ileostomy bag is the best for you.

It is helpful to keep everything you need to change your ileostomy together in a bag or in one place.  That way, you won't be halfway through and realise something vital is missing.

Learning to look after an ileostomy takes time and it can be worrying at first. But you will not be expected to cope on your own. You will find that it gets easier with time.

Talk to your stoma nurse or the ward nurses about the kind of support you feel you will need at home. Before you leave hospital you may want the stoma nurse to show your close relatives how to look after the ileostomy so they can help out when you get home. Your stoma nurse will give you their contact details before you leave the hospital. You can ring them for advice and support, and the nurse may arrange to visit you at home. Or a district nurse may visit for a few days to make sure you are coping.

Your stoma nurse will make sure you have plenty of ileostomy bags to take home. You can get more from the chemist or direct from a local stockist. Make sure that you order more well before you are likely to run out. The supplies are free, but your GP needs to give you a signed prescription and, if you are between 16 and 65, will also need to sign a free prescription form.

The Ileostomy and internal pouch support group have lists of stockists of ileostomy equipment. They also give support and information for anyone with an ileostomy. You can find details of other supportive organisations on our bowel cancer organisations page.

There is more information about coping with an ileostomy in the living with bowel cancer section of CancerHelp UK.