Jennie Burch covers what you need to know if you have an ostomy formed as part of surgery for colorectal cancer

Being diagnosed with cancer is already difficult to cope with. Learning that this also means having a stoma formed brings even more major life changes for you to adapt to. Fortunately, research has shown that having a stoma does not need to have a negative effect on your quality of life.¹

Maintaining a healthy lifestyle

Surviving cancer is often an opportunity to reconsider your lifestyle and make sure it is a healthy one. There is plenty of evidence linking poor diet, tobacco smoking, excess alcohol consumption and a lack of exercise to poor health outcomes, especially related to cancer.²

Eating a healthy diet improves your health in many ways, including keeping your weight within a healthy range. Stopping smoking can be as difficult as it is important, but your GP can usually help you get started. If you stopped smoking for surgery, try to keep at it. If you drink alcohol, it should be in moderation. Check whether you drink more units or more frequently than is recommended in health service guidelines (www.drinkaware.co.uk), and try to keep a couple of alcohol-free days each week. Everyone is recommended to exercise for several sessions each week. This will increase your heart rate and help you maintain a healthy weight and feel good. The type of exercise will depend on your personal preferences and abilities. If you haven’t exercised for a while, it is ideal to see a health professional before you start.

Having a stoma should not stop you doing any of these activities towards healthy living.

Chemotherapy concerns

Chemotherapy after cancer surgery can affect ostomates in a couple of ways.

The output from an ileostomy or colostomy can become looser. One way to help thicken your stoma output is to change your diet to include more processed foods, such as white instead of wholemeal bread. Of course, this goes against the normal recommendations for healthy eating, but it can be worth it if it helps you manage your stoma better.

Chemotherapy can also change the sensation in your fingertips, which can make it more difficult to change your pouch. Usually, this can be overcome simply by taking more care and time during changes. However, if these changes in sensation are new, you should tell your oncologist, as they may be able to change your chemotherapy dose.

Back on your feet

People whose stoma is temporary, as opposed to permanent, sometimes feel that they will have to wait until their stoma is reversed before they can get back to enjoying life. However, this is not necessary. No matter what kind of stoma you have, once you feel physically fit, it is ideal to start gradually adding things you enjoy back into your life. A good example is physical exercise, which should be gradually increased, following advice from your surgeon or stoma care nurse. This might begin with a short walk the day you get home from hospital, but after some time you will be able to go to the gym or swimming pool. With care and patience, you can work towards whatever level of activity you are comfortable with.

Exercise, essential for recovery and long-term health, should be reintroduced gradually

Adapting to new routines

After you have recovered from cancer surgery, it is important to try and get on with your normal routine. This can help you feel better and improve your general quality of life. A study of people recovering from stoma-forming surgery for bowel cancer found that many people, once they had gone through a process of adaptation, described their overall quality of life as ‘good’ or ‘excellent’.³

Socialising away from home can be difficult at first, especially when it comes to knowing where to find appropriate toilet facilities. There are many tips you can pick up from your stoma nurse and other ostomates, such as using a RADAR key to access disabled toilets, which are usually larger and better equipped than other public facilities and allow you to take as long as you need. It is important to remember that neither bowel cancer nor a stoma, though they present challenges, are a disability, and more complex toileting needs can be adapted to.

More tips

Exercise – Stoma fit: exercises to strengthen your core muscles (StomaTips no 2)

Sexual health – Back in the sack: sex with a stoma (StomaTips no 3)

Temporary stomas – Stoma reversal: what to expect after (StomaTips no 4)

Diet – Healthy eating with a stoma: a guide to food, diet and nutrition (StomaTips no 5)

Body image and mental health

Sometimes, physical recovery is faster than mental and emotional recovery. People often take time to get used to changes in their physical body, such as the formation of a stoma or appearance of scars. This can affect their relationships with other people, including friends and romantic partners. Although sexual activity is safe after bowel cancer surgery, if you do have problems, you are encouraged to discuss them with your surgeon or stoma care nurse.

However, this altered body image is not always realistic and typically improves with time. Many people whose body image is initially disturbed by an operation soon come to feel positively about those changes. If you are having difficulties in coping, please speak to your GP about referral to a counsellor, who can help you adjust to these changes.

Sex after surgery is generally possible, but speak up if you have any problems

Sources

Jennie Burch is Head of Gastrointestinal Nurse Education at St Mark’s Hospital, London

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Surviving bowel cancer: so you’ve got a stoma