If you have bowel or bladder cancer and your treatment has involved an ileostomy, colostomy or a urostomy, you will be learning to live with a stoma. This blog post explains how you can make life better…
For most people, having a stoma is a life-changing experience. It affects every aspect of your daily life, including those most basic functions: eating, sleeping and going to the toilet. You have to adjust to these changes physically, mentally and emotionally – that’s a big ask of anyone. But living with a stoma may well be life saving, as well as life changing, so we wanted to show how you can make life better with a stoma. You may be pleasantly surprised…
Before you leave hospital, your stoma nurse will have given you advice, guidance and information on living with a stoma. The amount of information can be daunting, as can those early days and weeks at home after surgery. And, despite all the information, you may still have questions that have arisen as you learn to adjust – or questions you may have felt too embarrassed to ask. One of the most important things to remember is that one in 500 people in the UK have a stoma – so you are not alone, there are thousands of ostomates just like you. And if you are worried or have a question about life with a stoma, you can be sure that other people have had the same concerns and queries!
Will people know I have a stoma?
The only people who will know you have a stoma are the people you tell. Modern stoma appliances are extremely well designed, neat and discreet – and shouldn’t leak. No-one will notice that you are using an ostomy bag.
Until recently, having a stoma was something that would cause embarrassment for and many ostomates still find it difficult to talk about the subject. But social media is changing that, not least because many more young people are having stomas fitted. Journalist, Hattie Gladwell, was just 19 when she had an ileostomy. Rather than hiding away, Hattie blogged about her experience, posted photos on her Instagram feed, and wrote articles for newspapers and magazines. You may not want to go that far but the more we can talk about living with a stoma, the better. It helps to break down taboos and create a climate of awareness.
Will my stoma smell?
This is probably one of the biggest fears that you might have about a stoma. The answer is ‘no’ but Live Better With has some excellent products that will give you added reassurance at home, at work, and when you use the bathroom.
These include Na’Scent ostomy bag deodoriser, OstoMIST In Pouch Neutralising Drops, and Diamonds™ Gelling and Odour Control Sachets.
Will I have to wear boring underwear?
Not unless you want to, is the answer to that one! Vanilla Blush Ostomy Intimacy Underwear is pretty and stylish, while being specially designed for anyone who uses an ostomy bag. The cotton protective pocket reduces sweating and irritation and helps to prevent leaks, so you can feel sexy and secure at the same time. Live Better With has custom-designed ostomy underwear ranges that combine comfort with style for men and women.
What’s the best way to look after my stoma?
The best way to look after your stoma is to look after the skin surrounding it, as it can become raw, irritated or moist – and that makes it difficult to attach your stoma appliance. OstoSEAL Protective Powder, for example, contains gently soothing aloe vera gel that helps sore skin to heal, making it easier to secure stoma adhesive and to remove your ostomy bag.
OstoPEEL No Sting Medical Adhesive Remover allows you to change appliances easily and comfortably, without tearing your skin. It’s available in different scents and as handy wipes in sachets – ideal when you are at work, or out and about.
Using a disabled toilet
Did you know that ostomates are entitled to use disabled toilets? Many people who live with a stoma prefer to use a disabled toilet, of which there are 9000 across the UK. To prevent misuse, many are kept locked. But with a Radar Key, you have 24-hour access to disabled facilities that use a Radar lock, for example in shopping centres, pubs, cafes, restaurants, stations and airports.
You can still enjoy life to the full with stoma!
There are many misconceptions about what you can and can’t do with a stoma. For example, if you enjoyed sports and keeping active, will that change? There is no reason why it should and you can exercise and swim with a stoma, possibly using a smaller bag and with a waterproof dressing.
Once you have recovered from surgery, you should be able to eat and drink normally, so make a point of having tasty meals that you enjoy at home, when eating out, or when you are on holiday.
And there’s no reason why you shouldn’t have an enjoyable sex life. Talk to your partner about your feelings and any concerns you have, so that they understand and can be supportive.
Feeling good about yourself – and about life with a stoma
It’s understandable that the prospect of living with a stoma could leave you feeling low and despondent – research published in India in 2012 showed that more than 50 per cent of stoma patients experienced depression following surgery. Try to focus on the things you can do, rather than what you can’t, and on all the things that you can still enjoy, make you happy, and that give you pleasure (see above).
Live Better With has some great books and products that can help you with this, from guides to mindfulness to tension soother balm and aromatherapy oils. Finding ways to relax and feel good will boost your confidence and sense of well being.
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.