Having a colostomy for anal cancer

A colostomy is an operation to create an opening (stoma) of the large bowel (colon) onto the surface of the tummy (abdomen). You might have a stoma if you have surgery for anal cancer. 

Your poo no longer passes out of your body through your back passage. Instead, it passes out through the stoma. You wear a bag stuck onto the skin over the stoma to collect your poo.

When you might have a colostomy

You have a permanent colostomy if you have surgery to remove your anus, rectum and part of your bowel (colon). This operation is called an abdominoperineal resection (APR). 

After surgery to remove your rectum, poo can't pass out this way anymore. So you need to have a colostomy.

Doctors usually try other treatments such as chemoradiotherapy first. This lowers the chance that you will need a colostomy. But if chemoradiotherapy doesn't completely get rid of your cancer or your cancer comes back, you usually have this type of surgery. 

You might also have a stoma if you have an APR as your first treatment instead of chemoradiotherapy. This is not very common and can be when you:

• had previous radiotherapy to your lower tummy (pelvis), and you can’t have more radiotherapy to cure the cancer
• have a type of anal cancer called adenocarcinoma or adenosquamous carcinoma. These cancers are less sensitive to radiotherapy.
• are having drugs to suppress your immune system as part of a transplant, and you might not be fit enough to complete chemoradiotherapy without taking breaks
• decide against having chemoradiotherapy

What does a colostomy look like?

Your surgeons make an opening of your large bowel (colon) onto the surface of your tummy. The opening is called a stoma. 

After your operation, the stoma will be swollen, but it gets smaller over a few days as it heals. It is round or oval and red like the inside of your mouth. It has no nerve supply, so doesn't hurt. But you have to take care not to injure it because you won't be able to feel pain there. 

You put a special bag over the stoma (colostomy bag). Your poos (stools) pass out of the stoma into the bag. As well as passing stools, the stoma oozes mucus. This is normal, and it collects in the bag with the poo.

Looking after your colostomy

Learning to look after a colostomy takes time. Your medical team will help you to cope. And usually a stoma nurse visits you on the ward before and after your operation to help you to learn to look after your stoma.

The stoma nurse can answer your questions and show you the type of colostomy bag you will use at first. You learn how the bag works and how to fit and empty it. The stoma nurse or ward nurse look after your colostomy and change your bag for the first few days. They gradually encourage you to do it yourself.

The stoma nurse also gives you information about your diet. They can answer any questions you have about practical things, such as:

• travelling
• doing sports
• what to wear

You might also have questions on more private matters like how the stoma will affect your sex life. People often feel too embarrassed to discuss these details. But these questions are natural. Remember that the stoma nurse has experience in this and understands that a colostomy might affect your life in many personal ways. They will give you tips and support.

It is helpful to keep everything you need to change your colostomy together in a bag or in one place, so it is a smooth and easy process.

Going home with a colostomy

Talk to your stoma nurse or the ward nurses about the support you feel you will need at home. You can ask the stoma nurse to show a close relative how to look after the colostomy, so they can help out when you get home. Adjusting to living with a stoma is not always easy and might take time.

Your stoma nurse will give you their contact details before you leave the hospital. You can ring them for advice and support. The nurse may also arrange to visit you at home. Or a district nurse might visit for a few days to make sure you are coping.

Stoma supplies and prescription charges

Your stoma nurse will give you colostomy bags to take home, but you will need to get more from the chemist or direct from a local stockist. The stoma nurse will give you the order code for the supplies you need. Make sure you always have plenty of extra supplies so you don't run out.

The stoma supplies are free, but your GP needs to give you a signed prescription. In England, you can also apply for a Medical Exemption Certificate (MedEx) so that all your medicine prescriptions are free. You get the form to apply for the Medical Exemption Certificate from the hospital or your GP. Prescriptions are free in Scotland, Wales and Northern Ireland.

Colostomy UK has lists of stockists of colostomy equipment. They also give support and information to anyone with a colostomy.