Beating bowel cancer together

Stomas

A stoma is where a section of bowel is brought out through an opening on your stomach area (abdomen). Poo (waste) is collected in a bag attached to the skin around your stoma.

A stoma can be temporary or permanent. A temporary stoma is formed to allow the bowel to heal after surgery. If there’s not enough bowel left to join the healthy bowel to the anus, you may have a permanent stoma.

If you have bowel surgery you may need to have a stoma. Your surgeon will tell how likely you are to need a stoma. They may not know for certain whether you'll need a stoma until they've started your operation.

Your surgeon or stoma care specialist nurse will explain:

  • why you may need a stoma
  • what type of stoma you might have
  • how long you might need it for

You'll meet your stoma care specialist nurse before the operation. They'll show you the stoma equipment and talk to you about living with a stoma. They may put an ink mark on your tummy (abdomen) where the stoma will be. They'll also support you after surgery while you learn how to look after your stoma.

Types of stoma

There are two types of stoma. A colostomy is formed from the large bowel. An ileostomy is formed from the small bowel.

Colostomy

A colostomy is a stoma formed by bringing part of the large bowel (colon) out on to the surface of your abdomen. This is usually on the left side of your body. If you have a colostomy, the poo will usually be more solid than liquid. This is because the body absorbs water from the waste as it passes through the large bowel. The poo passes out of the colostomy into a sealed bag outside the body (colostomy bag). You'll need to change your colostomy bag once or twice a day, depending on your bowel habit.

Ileostomy

An ileostomy is a stoma formed by bringing the end or a loop of the small bowel (ileum) out on to the surface of your abdomen. This is usually on the right side of your body. Waste (often called output) passes out of the ileostomy into a bag outside the body (ileostomy bag). You may have an ileostomy to let the newly-formed join in the bowel (anastomosis) rest and heal. The poo produced is usually liquid rather than solid. You'll need to empty your ileostomy bag four to six times a day and fit a new bag every one to two days.

You can find more information about surgery in our booklet, Your operation.

Stoma reversal

Some stomas can be reversed and you may hear this being called a temporary stoma. A temporary stoma is formed to allow the bowel to heal after surgery. Once the bowel has healed, a temporary stoma may be reversed. Stoma reversal is an operation that involves rejoining the two healthy ends of your bowel to close the stoma that was formed during your first operation.  

Your healthcare team will tell you when this is likely to happen. Some people have their stomas reversed after a few months, while others have their stomas for several years before they have a reversal. It can take a while for your bowel function to return to normal after your stoma is reversed.

Not all temporary stomas are reversed. This is dependent on lots of factors including whether your cancer has spread, a change in your treatment or on the recommendation of your healthcare team.  

You can find more information about stoma reversals in our Stoma reversal factsheet.

Stoma supplies

Your stoma care specialist nurse will give you a two-week supply of stoma appliances to take home. They'll then visit you at home or in an outpatient clinic to see how you’re coping with your stoma.

Once your stoma has settled, your stoma care specialist nurse will give your GP the details of your stoma supplies. You can then get a monthly prescription from your GP. You can use this to get more supplies from a pharmacy or stoma supply company.

If you live in England and usually pay for your prescriptions, your GP or stoma care specialist nurse can help you apply for free prescriptions. All GP prescriptions are free if you live in Scotland, Wales or Northern Ireland.

There are many types of stoma bag. They come in different sizes and can be either closed at the bottom or drainable. Your stoma care specialist nurse will help you decide which one is right for you. Colostomy UK also have more information about different types of stoma bag.

Managing your stoma

It may take time to get used to your stoma and managing it in your day-to-day life. It may also affect how you see and feel about yourself. Your stoma care specialist nurse is there to support you and answer your questions.

Until you get used to looking after your stoma, you might worry about smells or leakage. You may worry that other people can see the pouch through your clothes and you may wonder how other people will respond to your new stoma. Your stoma care nurse specialist can help you with any worries you may have. Having a stoma should not stop you doing the things you enjoy. There are companies that sell underwear, swimwear and other products that can help you feel more comfortable. Ask your stoma care nurse specialist for more information.

Colostomy UK and the Bladder and Bowel Community have more information about managing your stoma.

Eating and drinking with a stoma

When you leave hospital, your stoma care specialist nurse should give you information on diet. Try to eat a balanced, healthy diet and drink six to eight glasses of fluids a day.

For the first two months after surgery your bowel will be swollen, so you'll need to chew your food well. You may find it helps to eat five or six smaller meals a day instead of three larger ones.

It might take a little while to find which types of food you can and can’t eat. The Food and symptoms diary in our Eating Well booklet can help you with this.

Eating and drinking with an ileostomy

When you first have an ileostomy, you may find that some types of food are harder to digest. Your healthcare team may advise you to follow a low-fibre diet to start with.

Avoid fruit straight after surgery, except for bananas which thicken the output from your ileostomy. Gradually introduce cooked fruit, like stewed apple. After six to eight weeks, you should be able to start eating more types of food.

You can eat vegetables and fruit as part of a healthy, balanced diet, but chew them well to reduce the risk of blockages. If you have problems eating these foods, you could try taking off the skin and removing the seeds or eating tinned vegetables and fruit in natural juice or water.

Eating lots of small, hard foods like raisins, nuts and sweetcorn can sometimes block the ileostomy. You can help prevent this by eating small amounts of these foods and chewing them well. You could try crushing nuts or creaming sweetcorn.

You may sometimes get an increased output of poo from your ileostomy. This may be caused by stomach infections, stress, antibiotics, spicy food, beer or lager. Here are some things you can do to help:

  • Keep drinking water to stay hydrated – aim for six to eight glasses a day
  • If you’re able to, eat salty foods or add a little salt to your meals to replace the salts lost in loose poo. If you have high blood pressure, heart or kidney problems, check with your stoma care specialist nurse first
  • Cut back on foods that increase the amount of poo you pass, such as fruit, vegetables, fried foods, fruit juice, caffeine and alcohol
  • Thicken the output by eating bread, rice, potatoes, pasta, oats, smooth nut butter, bananas and crackers

Tell your stoma care specialist nurse if you have increased output over a long period of time, feel thirsty or faint, or have dark yellow urine. These can be signs of a high-output stoma, which can cause dehydration. If your ileostomy stops working, you may have a blockage. This can cause pain in your stomach area (abdomen) and you may feel sick. Contact your stoma care specialist nurse for advice. They may suggest that you:

  • keep drinking fluids
  • stop eating solid food
  • don’t use laxatives
  • make the opening of your stoma appliance slightly larger if your stoma swells
  • massage your stomach area (abdomen) and around the stoma
  • try a warm bath to ease pain in your stomach area
  • go to the hospital emergency department if you haven’t passed any poo or wind from your ileostomy for more than six hours

Get medical help from your hospital emergency department straight away if your stomach area is very painful and bloated and you start being sick (vomiting). Your bowel may be blocked, and you may need treatment quickly.

Eating and drinking with a colostomy

Many people with a colostomy can eat a healthy, balanced diet. If you had constipation or diarrhoea before having a colostomy, you may find that you continue to have these symptoms.

You may find that some types of food give you bowel symptoms such as wind or loose poo. Cutting back on these types of food can help.

To help prevent constipation, drink six to eight glasses of fluids a day. Water is best but you can also have tea, coffee or sugar-free squash. Limit fruit juice to one glass a day.

Make sure you’re eating enough fibre and have at least five portions of vegetables and fruit each day. For the first few days after surgery, make sure vegetables are well cooked. You may cope better with fruit that’s cooked, rather than raw.

If you have constipation, make sure you’re eating regular meals to keep your stoma working. Food that is spicy or high in fibre can help to relieve constipation. If you want to eat more fibre, introduce it to your diet gradually and make sure you’re drinking enough fluids.

Contact your stoma care specialist nurse or call 111 if there are any signs that your colostomy isn’t working properly, such as:

  • watery poo or not passing many poos
  • stomach cramps and bloating
  • feeling or being sick (nausea or vomiting)
  • a swollen colostomy

Constipation

To help prevent constipation, drink six to eight glasses of fluids a day. Water is best but you can also have tea, coffee or sugar-free squash. Limit fruit juice to one glass a day.

Daily gentle physical activity such as walking is also important.

If you have constipation, make sure you’re eating regular meals to keep your stoma working. Food that is spicy or high in fibre can help to relieve constipation. If you want to eat more fibre, introduce it to your diet gradually and make sure you’re drinking enough fluids.

Diarrhoea

If you have diarrhoea, speak to your stoma care specialist nurse. They may give you medicine to slow the movement of food through your bowel and thicken the output. Foods that may thicken your poo include very ripe bananas, boiled rice, porridge, smooth peanut butter, white bread or pasta.

You can find more information on eating and drinking with a stoma in our booklet, Eating Well.

Returning to work

Returning to work can be quite daunting if you're still getting used to your stoma. So can the thought of having to talk to someone about making changes to accommodate your needs.

The Equality Act 2010 and the Disability Discrimination Act 1995 protect you from discrimination at work. Employers must not treat you less favourably for any reasons relating to your cancer. Your employer must make reasonable arrangements to help you return to your job. What ’reasonable’ means depends on the type of work you do and will take into account cost, practicality and how effective the arrangements will be in helping you to perform your role.

These tips might help when returning to work:

  • If your organisation has an Occupational Health department, make an appointment to speak to an advisor to discuss your needs
  • If you feel able, talk to your line manager or a colleague you trust
  • If you work in an office, it is reasonable to ask if you can move to a desk nearer the toilets
  • If you commute, it might be less stressful to travel outside of normal rush-hour times. Ask your employer about flexible working
  • If you are self-employed, you may need to find different ways of managing your day-to-day activities and workload. Citizens Advice and local business networks can often give you support to work through any issues
  • It’s useful to have a bag to keep some stoma supplies in. Having these with you can give you confidence even if you never need to use them
  • Download a smartphone app such as Flush and Toilet Finder, which can be useful for finding nearby toilets
  • Carry a ‘Just Can’t Wait’ card, which can make it easier to ask to use a toilet so you don’t have to wait. These can be ordered from Bladder & Bowel UK or Bladder & Bowel Community
  • Get a Radar key, which allows you to open locked public toilets around the country. This is part of the National Key Scheme. You can get a Radar key from multiple organisations such as Disability Rights UK and Bladder & Bowel Community. There may be a cost involved
  • Disability Rights UK also has more information on your rights
  • Scope provides advice on benefits to help with extra costs due to long-term health problems, as well as information on your rights at work

Travelling with a stoma

You can travel with a stoma but you may need to prepare more for your trip. You can ask your stoma care specialist nurse for advice about:

  • stoma supplies
  • travel certificates
  • travel insurance
  • diet and water

A travel certificate is a document that you can show to travel authorities and their staff. It tells them important information about your stoma and any supplies you carry when travelling. This helps them to know what to expect and aims to prevent potential embarrassment. You can ask your stoma care specialist nurse for a travel certificate which is also translated into several languages. You can also download and print a travel certificate from Colostomy UK.

It can also help to plan ahead when visiting venues and sports stadiums. Venues should be able to provide easy access to accessible toilets and other assistance. Check the venue’s website for more information.

 Download our Living well booklet

More information

Colostomy UK provides support, reassurance and practical information to anyone who has, or is about to have, a colostomy.

Bowel and Bladder UK provides support and advice to people living with conditions that affect their bladder or bowel.

Bladder and Bowel Community provides information and support for people living with conditions which affect their bladder or bowel. They also have advice for managing and caring for your stoma.

Disability Rights UK works to ensure that everyone with a disability or health condition has equal rights and opportunities.

IA (Ileostomy and Internal Pouch Support Group) is a support group run by and for people with ileostomies and internal pouches.

 

Reviewed February 2024

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