Coping with a stoma

When you have a colostomy or ileostomy the end of your bowel is brought through an opening on your tummy (abdomen). The opening is called a stoma.

 If the small bowel (ileum) is brought out onto the abdominal wall, it is called an ileostomy.

If the large bowel (colon) is brought out, it is called a colostomy.

You might have a temporary colostomy or ileostomy. This is done after surgery to allow time for your bowel to heal. You have another surgery to close, or reverse, the stoma. This is usually done after you’ve finished treatment. So the timing is different for everyone.

You might have a permanent colostomy or ileostomy. Your surgeon should explain to you before surgery if they think you need this.

It can take a while to get used to dealing with a stoma.

You'll have practical and emotional help. 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.

Your mood and body image

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.

Eating when you have a stoma

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.

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.

Some foods might cause your colostomy or ileostomy to smell. You could try reducing or cutting out:

• onions
• 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. People often find that whichever foods caused them wind before surgery will do the same after.

Colostomy

Some people with a colostomy might be able to eat certain foods that other people have problems with. So, you’ll need to find out what works for you. You might find certain foods cause problems such as wind or loose poo (stool). These foods can be the same ones that caused you to have wind before you had a stoma.

You can try foods again after a few weeks to see if it still causes you 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.

Ileostomy

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 well. You lose more fluid through an ileostomy, so it is important to drink enough to keep you well hydrated. Keep an eye on how much you are weeing and the colour of your wee. Your wee should be a pale straw colour throughout the day. Keeping hydrated can be harder if it’s hot as we sweat more.

Too much fluid could increase the output of your ileostomy and make any dehydration worse. Your healthcare team will give you advice on how much to drink.

Your healthcare team may suggest eating something salty, such as a packet of crisps, at times. This is because sodium (salt) is lost through the ileostomy too.

Speak to your doctor or stoma nurse straightaway if you think you may be dehydrated.

Working

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.

Sports and hobbies

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.

Religion and culture

Religious and cultural differences may have an effect 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.

Your relationships and sex life

You might worry about how the stoma will affect your relationships with a partner or with friends. Or have practical worries about the stoma bag being noticeable, leaking or smelling.

Stoma bags are 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.

Stoma bag smells

Everyone will get a smell when changing or emptying the pouch.

A few drops of essential oils can help with any odour when emptying or changing the bag. There shouldn’t be a noticeable smell if the stoma pouch is intact and sealed.

Getting the right product is key in managing any odour.

If there is a smell, this could be because the filter on the stoma is blocked, or the bag isn’t stuck down properly.

Ask your stoma nurse for help if this is an ongoing problem for you.

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. Some people have a lot of difficulty finding the right fit.

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. You might have to try a few bags before you find the one that suits you best. If you don't have a stoma nurse, ask your GP or surgeon to refer you. 

All bags have filters built into them. Many have charcoal filters. 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.

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. Having chemotherapy may increase the amount of rectal discharge you have. This is because chemotherapy can inflame the bowel.

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.

What can help

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. 

Talking about rectal discharge

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.