Find out more about living with a colostomy or ileostomy after bowel cancer, how it can affect you and what can help.
Getting used to your stoma
When you have a colostomy or ileostomy the end of your bowel is brought out into an opening on your tummy (abdomen). The opening is called a stoma.
You might have a temporary colostomy. This is done after surgery to allow time for your bowel to heal. You have another operation to close the stoma after a couple of months.
Or you might have a permanent colostomy or ileostomy.
It can take a while to get used to dealing with a stoma.
You'll have help both practically and emotionally. There is a lot of support available. Your stoma nurse can give a lot of advice and support. As you learn to manage your stoma, it should have less and less impact on your day to day life.
It is normal to feel worried about how you will look if you need to have a colostomy or ileostomy. 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 or ileostomy 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.
It normally takes about 6 to 8 weeks for the bowel to settle down after surgery. After this, most people can go back to eating the foods they used to eat before their operation. Your stoma nurse will give you advice about what you can eat and drink shortly after your operation and in the long term.
Generally you can eat what you like. But some people may find that particular foods cause problems such as wind, bad smells or loose poo (stool). Foods that one person finds causes problems may not have the same effect in another.
So it's often down to trial and error to find out if a particular food disagrees with you. You can try the food again after a few weeks to see if it is still causing a problem. Once your bowel settles down after your operation, you can gradually increase the amount of fibre in your diet. This will help your poo to be firmer.
When going back to your normal diet, it's a good idea to introduce one food a day at first. You can keep a food diary and make a note if a particular food causes cramps or diarrhoea. If so, you can try it again in a few weeks to see if it has the same effect.
The small bowel is narrower than the large bowel, and so some foods such as celery, tough fruit skins, nuts and mushrooms, may cause a blockage. This is usually only temporary but can cause pain and cramps. When you start to eat these types of foods again, try eating them in small portions and chew them really well. You lose more fluid through an ileostomy, so it is important to drink plenty.
Having a colostomy or ileostomy should not make any difference to your job unless your work involves heavy digging, or other kinds of manual work. If you are not sure about this, ask your stoma nurse for advice.
The stoma won't stop you enjoying your favourite pastimes. All sorts of physical activities are possible – even strenuous exercise and swimming. Your stoma nurse can give you advice on how to protect your stoma. They can also tell you about waterproof bags and seals for swimming and water sports.
Religious and cultural differences may have an affect on how you, or your family, feel about having a stoma. For some people, these beliefs can make it harder to adjust to life with a stoma. Your stoma nurse will talk to you about this before and after your operation, and support you in meeting your religious and cultural needs while caring for your stoma.
In some religions, such as Islam, ritual washing is done before prayer. Muslims have 5 set periods of prayer each day. This can mean changing the stoma bag at least 5 times a day. Removing a 1 piece stoma bag several times a day could result in damaging the skin around the stoma. So it may be better to use a 2 piece stoma bag, where clean bags can be put on to the same base several times. Your stoma nurse will help advise you about this.
You may worry about how the stoma will affect your relationships with a partner or with friends. You may have practical worries about the stoma bag being noticeable, leaking or smelling. Or you may have emotional worries about your friends or partner rejecting you.
Stoma bags are very well designed. They can't be seen through your clothes and should not smell or leak.
Many people find that if they talk openly to close family and friends their fears of rejection disappear. Most people want to understand what is happening so they can help you.
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. So, 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 possibly 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 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.
Some foods are particularly likely to cause a smell. You could try reducing or cutting out:
- cabbage, sprouts and similar vegetables
- strongly spiced foods
- foods with a lot of garlic
- beer and other gassy drinks
- very rich or fatty foods
You may need to try out various foods to find which ones cause you to have wind.
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 at all 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.
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 to help control the leakage from the rectum.