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.
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 it is made from an opening in the small bowel (ileum), it is called an ileostomy.
Temporary or permanent stoma
Stomas may be temporary or permanent. A surgeon may make a temporary stoma to allow the bowel to heal after surgery. If you have a temporary stoma, you will usually have a second smaller operation a few months later to close the stoma and re-join the bowel. This operation is called a stoma reversal (see below).
Your surgeon will tell you whether you are likely to have a stoma after your operation, and whether it will be temporary or permanent. If you need to have a stoma, you will be referred to a stoma nurse who specialises in stoma care. They can talk to you about what to expect.
Having a stoma is a big change to your body, whether it is temporary or permanent. It can take time to get used to the change.
In most hospitals, there are stoma care nurses who you will usually meet before your operation. You may also find it helpful to talk to someone who is used to living with a stoma. Your specialist nurse, cancer doctor or stoma nurse may be able to arrange this for you. You can also contact Colostomy UK or the Ileostomy and Internal Pouch Support Group.
You will usually see a stoma care nurse on the first 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, and it can take several weeks before it settles down. The stoma care nurse will help you cope with any problems. You may want to have a family member or friend with you when you are shown how to care for your stoma. This means they will know how to help you at home, if needed.
Learning to look after a stoma takes time and patience. No one expects you to be able to cope straight away. It will get easier with time and practice. The stoma care nurse will continue to support you after you go home.
If you have an ileostomy, you will wear a stoma bag that opens at the bottom, so you can empty it. An ileostomy produces semi-liquid waste continuously, so you will need to empty the bag several times a day. If the bag needs emptying very often, your doctor can prescribe you anti-diarrhoea medicines to help.
A colostomy may be active 2 or 3 times a day, but this will vary from person to person. It will also be affected by what you eat. It will usually settle into a pattern after a few weeks, so you can predict when it is likely to be active. You will usually need to change your stoma bag 1 to 3 times a day.
Some people with a colostomy are taught how to flush out (irrigate) their colostomy once a day. This helps them to control when it is active. If you want to try this, talk to your stoma care nurse.
Before you change or empty your bag, make sure that you have plenty of bags and cleaning materials with you. It is a good idea to keep everything you need in one place, so that you do not have to search for things at the last minute. Give yourself plenty of time, so you can work at your own pace without any interruptions.
There are different types of ileostomy and colostomy bags and supplies. Your stoma care nurse will give you supplies to take home with you. When you have used these, you will need to order supplies from your pharmacy or a specialist supply company. Your stoma care nurse will help you choose what is suitable for you.
You will need a prescription from your GP to get stoma supplies. In England, prescriptions are free for people with cancer. However, 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 and Northern Ireland.
Once you are at home, you can phone the stoma care nurse if you have any problems. Or a district nurse can visit you to make sure you are coping with your stoma.
Having a stoma is a big change in your life. It can also affect relationships, as you may feel uncomfortable about your body or about a partner seeing your stoma. These feelings are a natural part of coping with having a stoma, and usually slowly get better over time.
We have support available if you have a stoma, call us on 0808 808 00 00 to talk to our cancer support specialists.
Healthtalkonline has video and audio clips of people with stomas talking about their experiences.
If you have a temporary stoma, you can usually have an operation to reverse the stoma when your treatment finishes. This is when the piece of bowel from your stoma is re-joined with either your colon or small bowel, and the stoma opening is closed. This means you will pass poo (stools) from your bottom again.
How the stoma reversal is done depends on the type of stoma you have. When you have a stoma reversal the operation is different for each person. It can be from a few months after the stoma was made, to 1 or 2 years later. Your surgeon and stoma nurse can tell you more about having a stoma reversal and when it might be best to have it done.
After a stoma reversal, it may take some time for your bowel function to get back to normal. We have information about coping with bowel changes. You can also learn more about stoma reversal from Colostomy UK.
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 email@example.com
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).
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.
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