Having an ileostomy for colon cancer

An ileostomy is a way to bring the small bowel (ileum) onto the surface of the tummy (abdomen).

Your poo no longer passes out of your body through your back passage. Instead it passes out through the ileostomy (stoma). You wear a bag stuck onto the skin over the stoma to collect your poo. The poo is usually looser rather than solid. It’s like the consistency of toothpaste or wallpaper paste.

Why you might have an ileostomy

You might have a temporary or loop ileostomy with surgery to remove part of the colon. This is to give your colon time to rest and heal after surgery. Your surgeon joins the ends of the bowel back together in another operation. This is called a stoma reversal.

Your surgeon will tell you when you are likely to have this operation. Stoma reversal is often at the end of your cancer treatment. If you are having chemotherapy after surgery to remove your cancer this happens first.

You might need a permanent ileostomy if there are no options to reverse the stoma. This might be because there is no bowel beyond where your ileostomy is. Your surgeon will avoid this if at all possible.

The decision about a permanent ileostomy might be made between you and your surgeon. Some people with existing bowel problems might find a permanent ileostomy easier to manage.

What an ileostomy looks like

The opening on your abdominal wall (stoma) will be round or oval. It looks red and moist like the inside of your mouth. It doesn't hurt because it has no nerve supply. You must be careful not to injure your stoma because you won't be able to feel if you have done any damage. 

The stoma will be swollen just after your operation but it will get smaller and flatter. An ileostomy tends to stay more spouted than a colostomy. It sticks out slightly more. This means it sits well within the ileostomy bag.

The stoma nurse

Stoma nurses are experienced in looking after stomas (ileostomies and colostomies) and teaching you how to look after them. A specialist nurse will visit you on the ward to show you what to do.

You usually see the stoma nurse on the lead up to your operation. This means they can talk things through with you and offer advice and support.

The stoma nurse will also see you on the day of the operation. They use a pen to mark where a stoma might be created. For the first few days after your operation the stoma nurse will help you look after and clean the stoma, and change the bags. This is called stoma education. They will also help you to find which type of stoma bag is the best for you.

Your stoma nurse will give you stoma bags to take home. You get more from the chemist, local stockist or delivery service. Supplies are free, but you need a prescription from your GP. 

Looking after your stoma

Learning to look after a stoma takes time and it can be worrying at first. But you won't be expected to cope on your own. You will find that it gets easier with time. 

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

Going home with an ileostomy

Talk to your stoma nurse or ward nurses about the kind of support you will need at home. Before you leave hospital you might want the stoma nurse to show your relatives how to look after the ileostomy. They can help out when you get home. 

Your stoma nurse will give you a contact number before you leave the hospital. You can ring them for advice and support, and the nurse may arrange to visit you at home.