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Living with bowel cancer

Listed below are some questions that may be helpful to ask your doctor or treatment team when discussing practical support during treatment for bowel cancer:

  • What will the treatment you are recommending cost?
  • Will I need to have time off work?
  • If I take time off work, how do I apply for temporary income support?
  • Will I need to travel for treatment?
  • Am I eligible for help with travel and accommodation costs?
  • How can I find out about help with childcare while I’m being treated?
  • How can I find out about home help while I am being treated?
  • How can I find out about counselling or psychological support?

The Cancer Council Helpline can be accessed from anywhere in Australia by calling 13 11 20 for the cost of a local call. More information can be found on their website www.cancer.org.au.

Travelling for treatment

People who live outside a major city may need to travel to see a specialist surgeon, radiation oncologist or medical oncologist. You may be able to get help with the cost of travel and accommodation needed for treatment. Each state and territory has a government-funded scheme to help patients who have to travel long distances to obtain specialist treatment that is not available locally, for example:

  • Interstate Patients Transport and Accommodation Service (ACT)
  • Transport for Health – Isolated Patient Transport and Accommodation Assistance Scheme (NSW)
  • Patient-Assisted Travel Scheme (Western Australia).

Depending on a person’s individual situation and where they live, assistance with childcare, meals and general home help may also be available. Some people may be eligible for a sickness allowance while having treatment.

Sources of information about financial and practical help include:

Emotional effects

Having cancer can cause a range of emotions. These may include shock, anxiety, relief, sadness and depression. Different people deal with serious problems in different ways. It is hard to predict how knowing you have cancer will affect you. You and your loved ones may find it helpful to know about the feelings that people diagnosed with cancer have reported.

Having practical and emotional support during and after diagnosis and treatment for cancer is very important. Support may be available from family and friends, health professionals or special support services.

Your doctor or nurse may be able to reassure you if you have questions, or you may find it helpful to talk to a trained counsellor, psychologist or specialist telephone helpline operator. Your doctor's surgery will have information on these. Some people find it helpful to talk to others with bowel cancer at a local support group or through an internet chat room.

In addition, state and territory Cancer Councils provide general information about cancer as well as information on local resources and relevant support groups.

More information about finding support can be found on the Cancer Australia website www.canceraustralia.gov.au or Bowel Cancer Australia www.bowelcanceraustralia.org.

Fatigue

Many people find that tiredness, or fatigue is a major challenge. Your tiredness may continue for some time after treatment has finished. Some people find it takes them up to two years to feel really well again.

Tips for managing tiredness:

  • Plan your day so you have time to rest.
  • Save your energy for the things that are most important to you.
  • Take short naps or breaks.
  • Eat well and drink plenty of fluids.
  • Take short walks or do light exercise.
  • Let other people help you.

You will also find some useful general information on returning home and short and long-term goals for your recovery on the Bowel Cancer Australia website. 

Living with a stoma

Having a stoma, even just for a short time, is a big change in a person's life and takes some adjustment. Your stomal therapy nurse will discuss all aspects of living with a stoma and provide you with booklets and videos if you wish.

Call the Cancer Council Helpline if you would like to arrange to speak to another person with a stoma. It can be helpful to hear how someone else copes with a stoma.

Your family may also need information and support, and the stomal therapy nurse will be happy to include them in these discussions.

You will be advised to join an ostomy association so you can obtain free bags and related products. There are support groups for people of all ages and the Cancer Council Helpline can advise you of the group nearest to you.

People may also have questions about the following areas.

Diet

As you recover you can start to eat a healthy balanced diet that includes plenty of fresh fruit and vegetables. You will work out for yourself if some foods cause more gas or bloating than others.

Colostomy equipment

There are a wide range of colostomy appliances available and your stomal therapy nurse will help you to choose the most suitable appliance.

Once a colostomy has healed, there’s no reason not to bathe or shower as you like. Your stomal therapy nurse will instruct you on caring for your stoma and surrounding skin.

To help reduce skin irritation, colostomy appliances are made from hypoallergenic (non-allergic) material, and contain special filters that ensure that the appliance does not release any unpleasant odours.

It may also be possible to perform irrigation of your stoma as an alternative to wearing a colostomy appliance. It involves washing out your colon with water either every day or every other day.

Smell and wind

Many people worry that their colostomy will give off a smell that other people will notice.

All modern appliances have air filters that have charcoal in them. The charcoal is an odour eater, therefore this neutralises the smell. Most people will be aware of the smell of their colostomy because it is their own body. However, someone standing next to you will not be able to smell the stoma.

Immediately after your surgery your colostomy will make excess wind and noise. This will slowly reduce as your bowel recovers.

Your stomal therapy nurse can advise you of products that you can use to help reduce any smell and dietary advice to reduce wind.

Exercise

In the weeks following surgery, it is usually recommended that you do some gentle exercise to help you recover. 

How you recover will determine how much exercise you can do. If you feel any pain, stop immediately.

Clothing

Having a stoma should not limit what you can wear. To be comfortable, you may want to avoid belts or waistbands right at the stoma level or tight bands just above.

Work

Once your bowel has healed, there is no reason why you can't return to work. If your job is particularly strenuous and involves a lot of heavy lifting, you may need to wear a support belt or a girdle. Your stoma nurse can advise you about this.

It's likely to take several months before you're ready to return to work. It you've had laparoscopic surgery you may be able to return to work sooner than after an open operation. However, it all depends on how you recover and the type of work you do. Whenever you do return you are likely to find it very tiring. It's a good idea to discuss the potential options with your employer before having a colostomy operation.

Some employers may be happy to provide a degree of flexibility, such as allowing you to work part-time or at home, until your strength improves. Your employer may also be able to provide additional support, such as giving you access to changing facilities or adjusting your work responsibilities so that you don't have to do lots of heavy lifting.

You don't have to tell your work colleagues about your colostomy (unless you want to). Some people find it's a good idea to tell one person in your workplace in case you need any support or advice.

Travel

There's no reason why you can't travel freely when you've had a colostomy, although you will probably need extra time when planning your journey.

Your stomal therapy nurse can give you advice about travelling with a stoma. It's recommended that you have travel insurance.

When travelling abroad, it's a good idea to take plenty of colostomy supplies with you because you may have difficulty getting hold of them in another country.

If you are in a country with unsafe drinking water you should use bottled or boiled water if you irrigate your colostomy.

Sex

There are several practical issues that could arise after having a colostomy, which could have an impact on your sex life and your relationships.

Women

Women who have had their rectum removed, may find that having sex in the traditional 'missionary position' is painful because the rectum no longer supports the vagina during sex. Trying different positions may help.

After surgery, many women also find that their vagina is much drier which can also make sex uncomfortable. Applying a lubricating jelly before having sex may help.

Having weight placed on your stoma during sex can be painful, so you may want to avoid positions that could cause pain. Alternatively, you could protect the stoma with a cushion or pillow.

Your stomal therapy nurse will be able to give you more advice.

Men

Following a colostomy, some men find that the blood supply and nerve endings to their penis have been damaged. This can make it difficult getting or maintaining an erection.

There are several ways to treat erectile dysfunction. You should discuss options for treatment with your doctor.

Other sex-related issues

Aside from the practical issues, you may be concerned about body image, self-confidence and how your partner may react to your colostomy, which can also have an impact on your sex life.

However, it's important to stress that many people who have a colostomy enjoy good sex lives, but it can take several months to build up the confidence and trust to make this possible.

If you have a long-term partner, you may want to ask them if they want to see your stoma and colostomy equipment. Some people’s partners want to take an interest but others may find it too upsetting, at least in the short term. There is no right or wrong way to react, so try not to take a refusal as a personal rejection.

If the appearance of your stoma and colostomy equipment is off-putting during sex, you can always cover them with a nightgown or boxer shorts.

Other tips that may help improve your sex life include:

  • changing your appliance before having sex
  • changing your appliance to a small stoma cap before having sex
  • covering the appliance with a satin or cotton cover (if the feel of the appliance against your skin is a distraction during sex)
  • keeping your sense of humour: embarrassing mishaps often occur during sex, whether or not you have a colostomy.

Last reviewed: August 2016

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