A Patient Journey for Stomas

A stoma, also often called an ostomy, are often used interchangeably. People who have had stoma surgery are sometimes known as ‘ostomates' or 'ostomists'.

It is estimated that one in 500 people in the UK are currently living with a stoma.

What is a stoma?

A stoma is an opening made on the abdomen to divert and drain the flow of faeces and/or urine into a stoma bag (often called a pouch). The most common is a colostomy, where the stoma contents come from the colon or large bowel, while other types include an ileostomy (coming from the small bowel) and urostomy (coming from the kidneys).

Usually, the surgeon will tell you before the operation that it will be necessary to have a stoma but, on occasion, the decision may be made during the surgery. You may need a temporary stoma e.g. to allow the bowel time to heal, or a permanent one and your healthcare professional will discuss this with you.

A stoma can vary in shape and size, some being fairly flat while others protrude slightly, and it shouldn't be painful as it doesn't have a nerve supply.

Having an operation is hard physically and emotionally. So, it's natural to have a lot of questions before stoma surgery. Being well prepared can help you know what to expect, while reducing some of the stress you may have.

After the operation

A stoma nurse will visit you in hospital during the first few days following your operation. They will answer any questions you may have, explain how to look after your stoma and care for your skin, helping you to feel confident in managing your stoma when you return home.

Going home

You should be able to go home within 3 to 7 days after the operation and, at this point, you’ll be given a date for a check-up appointment with your own doctor to talk about any further treatment you may need.

Once home, avoid strenuous activities that could place a strain on your abdomen, such as lifting heavy objects. Your stoma nurse will give you advice about how soon you can go back to normal activities.

The first few days after stoma surgery can be challenging and it takes time to adjust to having the stoma, but it will all get easier with practice and you should soon be able to do the things you’ve always done.

In the first few weeks after your operation, you may have more wind than usual (flatulence), and a discharge from your stoma. This should start to improve as you recover from the effects of the operation.

How often you need to clean your stoma and empty your bag/pouch each day depends on what you eat and what kind of stoma you have. It helps to be prepared when changing your stoma bag. Give yourself plenty of time so that you can work at your own pace and without any interruptions. Before you change or empty your bag, make sure that you have plenty of bags and cleaning materials with you. It’s a good idea to keep everything you need in one place, so that you don’t have to search for things at the last minute.

You may be concerned that your day-to-day activities will be restricted, and other people will notice you are wearing a colostomy bag but modern colostomy equipment is discreet and secure.

If you find that it takes time to adjust to the situation, whether physically or emotionally, you may want to ask your nurse about organisations that can put you in touch with someone who has experience of living with a stoma to offer practical and emotional support.

The Colostomy Association (www.colostomyuk.org), provides support, reassurance and practical advice to anyone who's had, or is about to have, stoma surgery. Their website also has details of stoma support groups in your area.

The first three months

Maintaining healthy skin

Most people living with a stoma will experience irritated skin at some point or another and so it’s very important that you keep the skin around your stoma healthy. For your stoma bag/pouch to be comfortable and worry-free, it’s important to prevent skin irritation and maintain healthy skin in the area.

If your skin becomes irritated, the adhesive on your pouch may not attach properly and this can lead to leaks. There are a number of cleansing products available that have been specifically designed for stoma care. Your stoma nurse or GP should be able to advise you.

Stoma bag/pouch leakage

Leakage leads to contact between output from the stoma and the skin, which can cause irritation. This can be a big concern for many people, so it is useful to find ways to prevent leakage from your stoma.

This means it’s important that you make sure your skin is clean and completely dry before applying the adhesive part of the pouch and then ensure there is full contact between the adhesive and your skin by exerting light pressure with your hand.

Your stoma nurse will have explained how to use the stoma appliance and accessories most appropriate for your body profile, allowing for normal changes to your body shape and size of stoma following the surgery. You may need to try different brands until you find the bag/pouch and accessories that are best suited to you.

Removal of a temporary stoma

If you have a temporary stoma, when your treatment is over you can usually have an operation to reverse the stoma. This may be a few months after the initial surgery or up to one or two years later.

The reversal process will depend on the type of stoma and your GP or stoma nurse can explain what will happen for your circumstances.

More information

Your GP and stoma nurse can help with any concerns you may have with your stoma, with more advice and information available on websites such as NHS Choices, Macmillan, Cancer Research and many others.

You may want to talk to other people who are living with a stoma – the talkbowel discussion forum is always open for you to share experiences and ideas and talk with others.

Read a blog post navigating you through the different types of stomas in a comprehensive guide.

Sources used in writing this article are available on request.

Last revised: 4 December 2017

Next review: 4 December 2020