Are you having a colostomy as part of your treatment for bowel cancer? Here’s what you need to know.
If you’ve been diagnosed with bowel cancer, your treatment may mean that you will have a colostomy and have to use a colostomy bag. It’s a life-changing procedure so it’s a daunting prospect for most people. At the same time, it can be life-changing in a positive way, as many of our online Community Forum and Facebook group members have found. April is Bowel Cancer Awareness Month so we’ve put together some information and advice, as well as links to useful websites, to help you adjust to making a colostomy bag part of your everyday life.
What is a colostomy?
Colostomy is a type of surgery in which your surgeon moves one end of your large intestine to an opening, which you can see, in your abdomen. This opening is called a stoma and it’s where your colostomy bag (a small, disposable pouch) is fixed. There are different types of colostomy bag (see below) but all do the same work – they collect the waste products that would normally go through your colon and into your rectum and anus – and that you eventually pass as a stool (faeces). So instead of going to the loo for a poo . . . you’ll be checking your colostomy bag, emptying it, or removing and replacing it.
Will I always have to use a colostomy bag?
It depends on the position of your bowel cancer and whether or not your surgeon can reconnect your bowel once the cancer has been removed and the affected area has healed. So, while one person might only have to use colostomy bags for a few weeks, other people will have to use them for several months or longer, or even permanently.
How do colostomy bags work and which type is best for me?
There are several different types of colostomy bag and stoma nurse will help you to decide which type is best for you. It will depend on things your lifestyle, your normal routine, and your usual diet, for example.
- Closed bags –best if you have firm stools; change the bag twice a day. Some have special liners, which you can flush down the toilet.
- Drainable bags – best for liquid, very loose stools; emptied through a hole at the bottom of bag and change the bag every two to three days are emptied through a hole at the bottom of the bag.
- Mini pouches – as the name suggests, these are small bags and you need to change them often.
- One-piece bags – these fit round your stoma and you attach them with a gentle adhesive. Just remove the bag and adhesive when you need a fresh bag and attach the new one. Some one-piece bags are flushable.
- Two-piece bags – you’ll have a base plate that fits snugly round your stoma and you attach the bag to this. Change the bag whenever you need to and the base plate every two to three days.
Do I have to pay for colostomy bags?
In the UK, your hospital will give you a start-up supply of colostomy appliances and information for your prescription. After that, you will need to ask your GP for prescriptions. The good news is that, if a colostomy is part of your cancer treatment – whatever age you are and whether your colostomy is temporary or permanent – you won’t have to pay for prescriptions.
(NB This information applies to the UK only. If you are visiting Live Better With from outside the UK, please check with your own local or national healthcare
Do I have to change my diet if I use a colostomy
Your stoma doctor or nurse will give you advice about your diet in the short term and beyond. Most colostomy patients start on a low fibre diet and then gradually introduce more high fibre foods and a wider range of food. There is no reason why you shouldn’t enjoy your favourite foods, although some foods are more likely to cause gas, diarrhoea or constipation. You will, however, have to get used to chewing your food really well; as one of our Community Form members says, ‘From now on, you’re going to be chewing like a cow!’
Should I tell people that I use a colostomy bag?
We know it can be embarrassing to talk about using a colostomy bag, especially in the early days, but the more people you tell, the easier you will find it. Start with family members and close friends and go from there. When it comes to work colleagues, you can choose whether or not to tell anyone but it can be helpful to tell one person whom you know and trust, in case you need a touch of personal support.
More and more people, including public figures like much-loved Irish singer, Brian Kennedy, are now speaking openly about living with a stoma and colostomy. Following major surgery for rectal cancer in 2018, Brian has to use both colostomy and urostomy bags. YouTube has plenty of videos, like this one, which features Alex, who was diagnosed with bowel cancer at 29, and this is helping to break down the taboos that have the surrounded the subject for too long.
Will people know I am using a colostomy bag – will it smell?
Although you may be able to smell your own colostomy, don’t worry – other people, even people standing close to you won’t know. Modern colostomy equipment is fitted with a charcoal filter to eliminate any odours and you’ll find special deodorisers in our online shop – for extra reassurance. (See link below.) If you’re still unsure, try asking a trusted friend or family member if they can notice anything. If you have any worries, do talk to your stoma nurse or GP, contact one of the organisations listed at the end of this post, or join our free online Community Forum and ask a question. Someone may already have asked the question and other members have shared advice and tips, based on their own experience. The forum has a search facility, so you can look up and follow or join discussions on any topic that concerns you.
Will I ever get used to using a colostomy bag?
The answer is ‘yes’ but we are all different so it takes some people longer to adjust than others. Having to use a colostomy bag can make you feel anxious, especially in the early days, and some people find the idea of life with a colostomy depressing. But, as some of our Community Forum members have found, having a colostomy and using a colostomy bag is definitely preferable to struggling without one.
Equally important, although you will have to get used to a different routine, you’ll still be able to work, exercise, socialise, wear normal clothes, and travel. And, yes, you can still enjoy a sex life, even if it means exploring different positions to help you feel more relaxed and comfortable.
Live Better With has an excellent range of stoma care products, aids and books, all designed, to make living with a stoma and a colostomy (or an ileostomy or urostomy) easier for you. Our range includes specially designed ostomy underwear, bag deodorisers, and radar keys to access disabled toilets across the UK.
Where can I find out more about living with a colostomy?
At Live Better With, we understand that you may be struggling with the thought of having to use a colostomy bag – but you are not alone and we are here to help.
Download: the free Live Better With Stoma Care Guide.
Do read: our blog post Living With a Stoma.
- The Live Better With online shop’s stoma care section.
- The Live Better With Community Forum is free to join and welcomes new members. Post your own questions and share information, advice and tips.
- Colostomy UK – this national charity offers information, advice and support to people living with a colostomy. It also runs projects such as Active Ostomates, to encourage people who have a stoma to take more exercise, and runs campaigns ‘to ensure that facilities across the UK meet the needs of people living with a stoma.’
- Healthtalk – offers free online information based on the personal experiences of people who are have specific health conditions. You’ll find several videos of people talking about learning to live with a colostomy after bowel cancer surgery.
- Living with a colostomy. This is a detailed NHS guide, which covers everything from colostomy bags and equipment to travel, work, exercise and sex.
- Stomawise – a national charity that supports ostomates (people who are living with a stoma).
- YouTube has plenty of useful videos, including guides like this one, featuring Nurse Gail Kerr of Macmillan Cancer Support, demonstrating how to change colostomy and ileostomy bags.