Let's talk about stomas

For some people who have bowel cancer surgery, they may need to have a temporary or permanent stoma.

Having a stoma is a big change to your body and some people can find it difficult to adjust. We spoke to Angela Wheeler, Gastrointestinal Clinical Nurse Specialist at The Wellington Hospital, about stoma care, the difference between temporary and permanent stomas, the common challenges of living with a stoma and the wealth of support available.

Is it difficult to use a stoma?

Learning to look after your stoma can take a little time and patience. You will be given lots of guidance and support for how to care for and use your stoma, including changing your bag, bathing and showering, clothing choices, exercise and anything else that concerns you. In fact, you won’t be discharged home until your stoma nurse is completely happy that you are able to care for your stoma bag.

Your stoma care nurse will continue to provide support once you are home. They will arrange visits and follow up appointments with your Consultant.

You can get in touch with your stoma nurse or your CNS at any time if you have any issues or questions, we are here to support you.

What are the most common concerns of living with a stoma and what advice would you give?

A lot of people worry about going out, being away from home, especially at first. My advice is always to build up slowly by taking short trips at first. Then increase your time or distance gradually as you build confidence. Having the things you need to change your bag, just in case, is important too. And remember that people with stomas are entitled to use accessible toilets.

Another common concern is worrying that other people can smell your bag. There should only be odour when emptying or changing your bag, the same as when you would pass a stool normally. If there is smell when not emptying or changing your bag this could indicate a leak or a faulty bag.

Whilst there are practical challenges, most often we find that people struggle with the psychological impact of living with a stoma rather than the practical aspects.

Ok, let’s talk about that. What are the main psychological challenges?

Having stoma surgery is a body-image-altering operation, and that comes on top of having been told you have cancer and having treatment. It can be overwhelming for some patients, very understandably.

Having a stoma can negatively affect the way people feel about their body and their self-image which can affect their relationships, in particular they may feel uncomfortable about their sexual partner seeing their stoma.

These feelings are completely normal and are all part of living with a stoma and nobody expects you to cope straight away. In most cases people begin to feel better over time and most people with a stoma enjoy a healthy sex life.

I tell my patients that having a stoma has not changed who they are, they are still the same person they were before they had their surgery. It can take time to come to terms with their altered body image and I always encourage them to access support, because there’s lots of help available.

That’s great, what specific support is available and what do you think works best?

Well, everybody is different, has different concerns and needs different levels of support, so it’s about understanding what will work best for them. Working with the patient and their clinical team we will try to identify the best support.

For example, we find that those who are struggling to come to terms with the requirement of a stoma can benefit greatly from talking to somebody else who has gone through the same experience. We have a number of patients who have previously had stoma surgery who offer to talk to these patients.

We can also refer you for one-to-one psychological support and your CNS is always on hand to help.

Most importantly, you need to remember that you can contact your clinical team at any time if you are struggling.