What is a stoma?
A stoma (colostomy or illeostomy) is an opening made during surgery. It connects the bowel to the surface of the tummy.
What is a stoma (colostomy or illeostomy)?
A stoma is an opening that is made through the tummy (abdominal) wall. It connects the bowel to the surface of the tummy. The stoma is round or oval-shaped, and it looks pink and moist. It has no nerve supply, so it does not hurt.
Having a stoma means poo (stools) will not pass out of the rectum and anus in the usual way. Instead, it will pass out of the stoma, into a disposable bag that is worn over the stoma.
Types of stoma
- If the stoma is made from an opening in the colon, it is called a colostomy.
- If the stoma is made from an opening in the small bowel (ileum), it is called an ileostomy.
Is a stoma permanent?
Stomas may be temporary or permanent. Only a small number of people with colon cancer need a permanent stoma.
If you have rectal cancer, and the cancer is very low in the rectum and close to the anus, you are more likely to need a permanent stoma.
The surgeon may make a temporary stoma to allow the bowel to heal after surgery. If you have a temporary stoma, you will usually have an operation to close the stoma and rejoin the bowel after you have finished your treatment. This operation is called a stoma reversal (see below).
Your surgeon will tell you whether you are likely to have a stoma, and whether it will be temporary or permanent. If you need to have a stoma, you will be referred to a nurse who specialises in stoma care. They can talk to you about what to expect.
A colostomy and colostomy bag
An ileostomy and ileostomy bag
If you have a stoma
Having a stoma is a big change to your body, whether it is temporary or permanent. It can take time to get used to having a stoma and managing it.
You will usually meet a stoma care nurse before your operation. They will talk to you about what is involved and can answer any questions you may have.
You may also find it helpful to talk to someone who has experience living with a stoma. Your specialist nurse, doctor or stoma nurse may be able to arrange this for you. You can also contact Colostomy UK or the Ileostomy and Internal Pouch Association.
Looking after your stoma
A stoma nurse will usually meet with you the day after your operation. For the first few days, they will show you how to look after the stoma and change the bags.
The stoma will be swollen at first. It can take several weeks before it settles down. The stoma nurse will help you cope with any problems and make sure you feel able to look after your stoma before you go home.
It is a good idea to have a family member or friend with you when you are shown how to look after your stoma. They can then support and help you at home, if needed.
Nobody expects you to be able to cope straight away. Looking after a stoma will get easier with time and practice. The stoma care nurse will continue to support you after you go home.
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If you have an ileostomy
You will wear a bag that opens at the bottom, so you can empty it. An ileostomy produces semi-liquid waste all the time. You will need to empty the bag several times a day.
If you need to empty the bag very often, your doctor can prescribe anti-diarrhoea medicines to help.
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If you have a colostomy
A colostomy may be active 2 or 3 times a day, but this will vary from person to person. What you eat will also affect how active the colostomy is. It may settle into a pattern after a few weeks. You may be able to predict when it is likely to be active. You will usually need to change your stoma bag 1 to 3 times a day.
You may be taught how to flush out (irrigate) your colostomy once a day. This helps to control when it is active. If you want to try this, talk to your stoma care nurse. You can find more information about irrigation on the Colostomy UK website.
Whenever you change or empty your bag, make sure that you have everything you need before you start. It is a good idea to keep all your stoma equipment, such as bags and cleaning wipes, together. Give yourself plenty of time, so you can work at your own pace without any interruptions.
Stoma supplies
There are different types of ileostomy and colostomy bags and supplies. Your stoma care nurse will give you some supplies to take home with you. They will also provide prescription information so your GP can prescribe stoma supplies when you are at home.
You can get stoma supplies from a pharmacy or a specialist stoma supply company. Your stoma nurse will advise you about this.
In England, prescriptions are free for people with cancer. But if you are aged between 16 and 60, you will need to make sure your doctor signs an FP92A form saying that you are entitled to free prescriptions.
Prescriptions are free for people living in Scotland, Wales or Northern Ireland.
Diet with a stoma
If you have a stoma, your nurse or dietitian will usually advise you to follow a low-fibre diet for a few weeks. When your stoma becomes less active, you can start to introduce more foods into your diet.
Some people find that certain foods make their stoma more active, so they need to avoid them. Examples are:
- pips and skins of fruit
- beans
- nuts and seeds
- dried fruit
- bran
- raw vegetables.
It is important to drink plenty of fluids. But if your stoma is very active, your stoma care nurse or dietitian may advice you to reduce the amount of fluid you drink in a day.
Limiting caffeine and alcohol can help. Your stoma nurse or dietitian can give you more advice.
Support when living with a stoma
When you are at home, you can contact the stoma nurse if you have any problems. Or your local district nurses may visit you to make sure you are coping with your stoma.
Having a stoma is a big change in your life. It may affect your relationships, as you may feel uncomfortable about your body. For example, you may be worried about a partner seeing your stoma and how it will affect your sex life. These feelings are a natural part of coping with a stoma.
Your stoma nurse will be able to tell you about any stoma management programmes that may help. We have information about coping with changes in your body.
Support videos
There are helpful videos to support you if you have a stoma:
- You can watch Pat’s story of living with a stoma.
- Healthtalk.org has video and audio clips of people with stomas talking about their experiences.
Macmillan Online Community
Our ileostomy, colostomy and stoma support group provides peer support for people:
- having an ileostomy or colostomy
- living with a stoma
- after a stoma.
People can support each other and discuss things like bag recommendations, managing a stoma and foods to avoid.
Support from other organisations
- Colostomy UK has a 24-hour free helpline. They also have Live Chat available on their website Monday to Friday, 9am to 5pm.
- The Ileostomy and Internal Pouch Association offers one-to-one support as well as an online forum where you can chat to other people who may be in a situation similar to you.
Booklets and resources
Stoma reversal
A stoma reversal operation is when the piece of bowel that formed your stoma is rejoined with either the colon or small bowel. The stoma opening is closed. This means you will pass poo (stools) from your bottom again.
If you have a temporary stoma, you can usually have a stoma reversal sometime after your treatment finishes.
When you have a stoma reversal operation is different for each person. Your surgeon and specialist nurse can tell you more about having a stoma reversal and when it might be best to have it done. They can advise you about what to expect, how long it may take to recover and what your bowel function may be like.
After a stoma reversal, it can take some time for your bowel function to get back to normal. Your specialist nurse will be able to give you advice and support during this time.
You can also learn more about stoma reversal from Colostomy UK.
About our information
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References
Below is a sample of the sources used in our bowel cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk
R Glynne-Jones, PJ Nilson, C Aschele et al. ESMO-ESSO-ESTRO Clinical practice guidelines for diagnosis, treatment and follow up for anal cancer. July 2014. European Society of Medical Oncology. Available from www.esmo.org/Guidelines/Gastrointestinal-Cancers/Anal-Cancer (accessed October 2019).
National Institute for Health and Excellence (NICE). Colorectal cancer: diagnosis and management clinical guidelines. Updated December 2014. Available from www.nice.org.uk/guidance/cg131 (accessed October 2019).
Association of Coloproctology of Great Britain & Ireland (ACPGBI). Volume 19. Issue S1. Guidelines for the management of cancer of the colon, rectum and anus. 2017. Available from www.onlinelibrary.wiley.com/toc/14631318/19/S1 (accessed October 2019).
BMJ. Best practice colorectal cancer. Updated 2018. Available from www.bestpractice.bmj.com/topics/en-gb/258 (accessed October 2019).
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Reviewers
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
About our information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Below is a sample of the sources used in our bowel cancer information. If you would like more information about the sources we use, please contact us at
informationproductionteam@macmillan.org.uk
National Institute for Health and Care Excellent (NICE). Colorectal cancer. NICE guideline [NG151]. Updated December 2021. Available from: www.nice.org.uk/guidance/NG151 [accessed Jan 2023].
Cervantes A, Adam R, Rosello S, et al. Metastatic colorectal cancer: ESMO Clinical Practice Guideline for diagnosis, treatment and follow-up. Annals of Oncology. 2023;34(1):10-32. Available from: www.annalsofoncology.org [accessed Jan 2023].
Date reviewed
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