Essential information to help you live better with a stoma...
Every year almost 42,000 in the UK are diagnosed with bowel cancer and, for many of them, treatment will include surgery to remove part of their bowel and this may mean living for a time, or even permanently, with a stoma and using an ostomy bag (sometimes called a pouch). But there are other conditions too, such as Crohn’s disease, that involve this type of surgery and it’s estimated that one person in every 500 in the UK is an ostomate – that’s someone who has a stoma and has to use an ostomy bag. You’ll find quite a few ostomates on the Live Better With Cancer Community Forum…
But what exactly is a stoma and why do you need an ostomy bag? And when and how do you empty or change an ostomy bag. We’re answering these and some of the questions that people ask most often about life with a stoma. You are probably finding the prospect of a stoma very challenging, so we hope this information and advice will reassure you, especially in the early days, when everything seems so new and so different from what you have always been used to.
What is a stoma?
The most common operations that involve a stoma are a colostomy, where part of your large intestine is removed, or an ileostomy, when the small intestine is affected. A stoma is an opening that the surgeon makes on your abdomen to allow digestive waste to leave your body, after part of your bowel has been removed. Depending on your cancer diagnosis and the extent of your surgery, your stoma might be temporary – for a few weeks or months while your surgery heals – or permanent.
A stoma isn’t painful, although it may look a little red, and can become irritated and inflamed, so it’s important to learn the basics of good stoma care.
Why do you need an ostomy bag?
After this type of surgery, digestive waste can’t leave your body in the usual way, through the lower bowel and anus, so the stoma is created to divert that waste out of your body. The waste needs somewhere to collect so it can then be disposed of - and this is the job of an ostomy bag. It’s normally attached to your body with a baseplate that surrounds your stoma and is held in place with a gentle medical adhesive, which can be easily removed with a special no-sting product such as OstoPEEL.
How to empty an ostomy bag – and how often
This depends on the type of stoma you have but you will need to empty your bag between three and 10 times a day – and ideally when it is no more than a third to a half full. There are different types of bag and your stoma nurse will tell you which type will be most suitable for you. You empty your ostomy bag into a toilet and, just as there are different types of bag, so there are different ways to empty the bag. Your stoma nurse will explain the best way to empty your bag but don’t be surprised if it takes a while, and some experimenting, to decide what suits you best. You’ll find a simple step by step guide here and there are plenty of videos on YouTube, like this one, produced by the American College of Surgeons.
How to change an ostomy bag – and how often
You need to change your ostomy bag every three to five days, using warm water initially, (immediately after surgery) to wash the stoma area, and then applying a barrier cream or powder to protect your skin and prevent irritation. Your stoma nurse will show you how to change and dispose of your stoma bag and let you know when you can start to use a gentle natural soap, like Weleda Calendula when you wash. This free online guide from Colostomy UK is very helpful, as is this video (also from the American College of Surgeons).
Do make sure that you ask your stoma nurse about the best way to dispose of used stoma bags in your area, as individual local authorities may have different rules. Don’t put used bags down the toilet, unless you are using special flushable bags.
How to control ostomy bag odour
This is one of the biggest fears that people have about living with a stoma. In fact, if you practise good stoma care, your ostomy bag won’t smell but Live Better With has some great products that will give you added reassurance at home, at work and when you use the bathroom. These include neutralising spray and drops, and bag deodorisers,
Going out with an ostomy bag
You’ll almost certainly feel nervous about going out in the early days after stoma surgery but, like most ostomates, you should find it fairly easy to get out and about and travel with an ostomy bag, once you are used to it. Always make sure you have your basic essentials – gentle wipes, extra bags and wafers (ostomy barriers), and your favourite odour eliminator with you.
And did you know that ostomates are entitled to use accessible toilets (sometimes referred to as ‘disabled’ toilets), which make emptying or changing your ostomy bag much easier. A RADAR key gives you access to over 9000 of these toilets in the UK and charities such as Colostomy UK and medical organisations offer identity cards that you can show if anyone ever challenges your right to use an accessible toilet or bathroom.
You can read more about RADAR keys and accessible toilets here.
Clothes and underwear for an ostomy bag
Standard underwear styles are not designed for ostomy bags, which can make things awkward for you. So, for a more secure fit around your bag, specially designed ostomy underwear is the perfect solution, as it holds the bag close to your abdomen. It means that no-one can see your bag, even when it is quite full, so you can still wear more or less what you like, including fitted clothes. Having a stoma and using an ostomy bag do not mean that you have to resign yourself to wearing baggy, shapeless clothes!
Live Better With has some comfortable and stylish ostomy underwear for women and men; the range includes support vests, hernia belts, pants and briefs, pantie girdles, boxers, camis and intimacy styles for those special moments. If you’re planning a beach holiday or enjoy swimming, look out for special ostomy swimwear too.
See the full Live Better With range of recommended ostomy underwear here.
UK organisations that offer advice, information and support to people living with a stoma:
Download our free Stoma Care Guide for more information on looking after your stoma, wearing your bag with confidence, what you can eat, and getting out and about.
Read a selection of Live Better With articles and guides on living with a stoma here.
Visit the Live Better With Cancer Community Forum – for information, advice, and tips on living with a stoma - and to share your own questions and suggestions.