Coping with a colostomy after anal cancer

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). 

Getting used to your colostomy

After surgery to remove your lower bowel (rectum and anus), poo can't pass out this way anymore. So you need to have a colostomy.

A colostomy means the surgeon brings the end of the bowel out onto the surface of your tummy (abdomen). This opening is called a stoma. You wear a bag over the opening to catch your poo.

After a colostomy, you'll need to think about and adjust to practical issues and feelings around having a colostomy. It can take time to get used to all these changes. But most people learn to do so. Your stoma nurse can give advice and support at all stages.

Your body image and mood

It is normal to feel worried about how you will look if you need to have a colostomy. You may also worry about how other people react. While you are in hospital the stoma nurse will teach you how to manage the stoma. It might be helpful for a close family member to be there too. Then you can both get used to your colostomy and can ask the nurse questions.

Once you get home, help is still available if you need it. You might have problems or questions about looking after and dealing with your stoma. Or you may feel low or depressed. Do talk to your GP or stoma nurse. They will either be able to help you or put you in touch with someone who can.

Bowel Cancer UK or Colostomy UK can also give support.

As you learn to cope with your colostomy, it will affect your daily life less. You may also find that you feel more positive and less sad once you get back to the things you enjoy in life.

Working

Having a colostomy usually doesn't interfere with most jobs. It might affect your work if it involves heavy digging or other kinds of manual work. Ask your stoma nurse for advice.

Sports and hobbies

A colostomy doesn't have to stop you from doing sports or hobbies. All sorts of physical activities are possible. Even strenuous exercise and swimming. Your stoma nurse can tell you how to protect your stoma. Special small and waterproof bags and seals are available for swimming and other water activities.

Rectal discharge

After having a stoma, some people may have discharge from the back passage. The discharge is mucus from the lining of the bowel. Mucus normally keeps the bowel moist and helps the poo (faeces or stools) to pass along the bowel. After a stoma, the bottom part of the bowel no longer has poo passing through it, but it still produces mucus. Dead cells from the lower bowel or rectum may be mixed in with the mucus. 

The mucus may leak out of the anus, or you may feel the urge to go to the toilet. The mucus is normally clear or white and looks like egg white or glue. Sometimes the mucus dries up into a ball inside the rectum and can cause pain. Depending on the type of stoma you have, a small amount of poo may pass into the bottom part of the bowel, resulting in a brown discharge. 

How often and how much rectal discharge there is varies in different people. It may be a couple of times a day or once every few weeks or months. If the mucus looks green, smells or has blood in it, you should let your stoma nurse or doctor know as you might have an infection.

Sitting on the toilet daily and gently bearing down (without straining) may help you naturally pass the mucus out of your rectum. Some people may need a suppository to help loosen the mucus. If you are worried about leaking discharge unexpectedly, you may want to wear a small absorbent pad to protect your clothes.

If mucus does leak out, it can make your skin sore. So you may want to use a barrier cream to help protect your skin. If you are having radiotherapy, you should check with the team looking after you before using any creams. After a shower, remember to pat your skin dry with a towel rather than rub it. 

Having rectal discharge may feel embarrassing. But the team looking after you will be very used to supporting people with this. Your stoma nurse can tell you what to expect and how to deal with any discharge. They can also teach you pelvic floor exercises to help strengthen the muscles that help to control the leakage from the rectum.

If the stoma bag smells

It is normal to smell your stoma bag when emptying or changing it. But if it smells otherwise, it could be due to the bag not fitting properly. There are anti odour products that can help.

Types of colostomy bags

Stomas are of different shapes and sizes. Some bags may not fit you, and others will. If the bag doesn't fit properly, you are likely to have problems with smell and leakage. You could get in touch with a stoma nurse at your hospital. They can get different types of bags for you to try. And they will help you fit them. If you don't have a stoma nurse, ask your GP or surgeon to refer you. You might have to try a few bags before you find the one that suits you best. 

Some bags have charcoal filters built into them. Charcoal is good for absorbing smells, and the filter lets gas escape from the bag, so it doesn't get too full and uncomfortable. If the bag fits properly, you should only be aware of the smell when changing or emptying the bag.

Anti odour products

Some products can help to mask the smell of a colostomy. They are often liquids, and you use a few drops each time you change your bag. These are the last resort because you shouldn't have this problem if possible. But some people have a lot of difficulties finding the perfect fit for their colostomy bag, and these products can help. You can ask your stoma nurse or Colostomy UK to suggest products for you.