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.
The bowel cancer or colostomy organisations can also give support.
As you learn to cope with your colostomy, it will have less of an effect on your daily life. 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 advise you on how to protect your stoma. 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, although the bottom part of the bowel no longer has poo passing through, 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 a bit 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 once every few weeks or months, or a couple of times a day. 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 every day and gently bearing down (without straining) may help you to pass the mucus out of your rectum naturally. 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.
Although having rectal discharge may feel embarrassing, the team looking after you will be very used to supporting people with this. Your stoma nurse can give you advice on 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
If the stoma bag smells it could be due to the bag not fitting properly or it could be due to diet. There are anti odour products that can help.
Types of colostomy bag
Stomas are 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 that it doesn't get too full and uncomfortable. If the bag fits properly you should only be aware of the smell when you are changing or emptying the bag.
Anti odour products
Some products can help to mask the smell from a colostomy. They are often liquids, and you use a few drops each time you change your bag. These are a last resort, because you shouldn't have this problem if possible. But some people have a lot of difficulty finding the perfect fit for their colostomy bag and these products can then help. You can ask your stoma nurse or the Colostomy Association to suggest products for you.
