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  • Managing the symptoms and side effects of bowel cancer

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    After treatment for bowel cancer, many people find that they need to adjust to changes to their digestion or bowel function.

    Incontinence

    After treatment for bowel cancer, many people find that they need to adjust to changes to their digestion or bowel function. The movement of waste through the large bowel can become faster after surgery or radiotherapy. This can mean you need to go to the toilet more urgently and more often. It may also result in a loss of control over bowel motions (faecal incontinence).

    Bowel surgery or radiotherapy may weaken the anus, making it difficult to hold on when you feel the need to empty your bowels, particularly if you have loose stools (diarrhoea).

    Some people have difficulty controlling when they pass urine (urinary incontinence), and find they need to urinate more often or don’t fully empty the bladder. For example, radiotherapy can irritate the lining of your bladder, because the bladder is located near the large bowel. This can cause temporary urinary incontinence.

    If you have bladder or bowel changes, you may feel embarrassed, but there are ways to manage the symptoms. Incontinence issues usually improve in a few months, but sometimes take years. Talk to your health care team about whether any bowel or bladder changes are likely to be permanent. For more information, contact the Continence Foundation of Australia on 1800 33 00 66.. To locate public toilets near you, visit toiletmap.gov.au. You can also download the National Public Toilet Map iPhone App from the iTunes App Store.

    Having a stoma

    A stoma is a surgically created opening in the abdomen that allows faeces to leave the body. The end of the bowel is brought out through the opening and stitched onto the skin. Some people need a stoma after bowel surgery.

    The two types of stoma are a colostomy (made from the large bowel) and an ileostomy (made from the small bowel).

    A stoma may be temporary or permanent. A temporary stoma is needed only until the newly joined bowel has healed. In this situation, a loop stoma is often used. A loop of the large bowel is brought out, and then opened and stitched to the skin. This creates two openings. If you have a temporary stoma, you will have another operation, usually after 3–12 months, to close the stoma and rejoin the bowel. This is called a stoma reversal. The process for reversing the stoma will depend on the type of stoma you have. Less than 10 per cent of people with bowel cancer need a permanent stoma.

    Like the inside of the mouth, a stoma is soft, moist, and red or pink in colour. It may be level with the surrounding skin or slightly raised. The stoma itself doesn’t have any feeling, but the skin around it does.

    Stomas vary in size and can change shape during the weeks after surgery. A stomal therapy nurse can give you advice about any changes to your stoma or the skin around it. Most people need time to adjust to having a stoma.

    How the stoma works

    When the bowel moves, wind and waste matter (faeces) come out through the stoma. You cannot control when this happens, but a small disposable bag is worn on the outside of the body to collect the waste. This is called a stoma bag or an appliance.

    Stoma bags have adhesive on the back so they stick firmly to the skin and provide a leak-proof, odour-proof system. A filter lets out any wind (but not the odour), which should stop the wind inflating the bag. The bags usually can’t be seen under clothing.

    Attaching the bag—a stomal therapy nurse will help you choose an appliance that suits your body shape and the stoma, and will explain how to attach it securely.

    Emptying the bag—stoma bags can be drainable (able to be emptied) or closed (discarded after each bowel movement). With an ileostomy, you wear a drainable bag because the waste matter tends to be watery or soft. With a colostomy, the bag may be drainable or closed, depending on the consistency of your waste matter. A drainable bag has to be emptied down the toilet when it is about one-third full. A closed bag should be put in a rubbish bin after each bowel movement (not flushed down the toilet).

    Some people don’t like to wear stoma bags. If you have a colostomy in your descending colon, you may be able to learn how to give yourself a type of enema (colostomy irrigation) to remove the waste every day or two. Talk to your doctor and stomal therapy nurse about this option.

    Living with a stoma

    Having a stoma, even temporarily, is a big change in a person’s life and takes some adjustment. However, thousands of Australians have a stoma and most lead a relatively normal life.

    The stoma may sometimes affect your travel plans, social life and sexual relationships, but these issues can be managed, especially with some planning. Unless your job or hobbies are particularly strenuous, you should still be able to participate in your usual activities.

    You may worry about how you will look. Although the stoma bag may seem obvious to you, most people won’t notice anything is different unless you tell them. The stoma’s location may make some clothes less comfortable (e.g. tight waistbands or belts), but you will generally be able to continue wearing your normal clothes. You might consider buying underwear designed for people with a stoma.

    To help the stoma settle and to avoid blockages, you may need to make some dietary changes. Over time, most people find they can eat a normal healthy diet.

    Many people with a stoma worry that the stoma will affect their ability to give or receive sexual pleasure. In women, if the rectum is removed, there may be a different feeling in the vagina during intercourse. It may be uncomfortable, as the rectum no longer cushions the vagina. In men, creating a stoma usually involves removing part or all of at least one organ in the pelvic area. This may affect the nerves controlling erections.

    Support for people with a stoma

    See a stomal therapy nurse—​​​​​​​if there is a chance you could need a stoma, the surgeon will probably refer you to a stomal therapy nurse before surgery. Stomal therapy nurses are registered nurses with special training in stoma care. They can:

    • talk to you about the best place for the stoma to be located
    • answer questions about your surgery and recovery
    • provide you with printed, online and audiovisual resources
    • give you information about adjusting to life with a stoma

    For more details, visit the Australian Association of Stomal Therapy Nurses at stomaltherapy.com or call Cancer Council 13 11 20.

    Join a stoma association—​​​​​​​with your consent, the stomal therapy nurse will sign you up to a stoma (or ostomy) association. For a small annual membership fee, you will be able to obtain free stoma appliances and products. Stoma associations also provide assistance and information to members and coordinate support groups for people of all ages.

    The Australian Council of Stoma Associations represents stoma associations across Australia. Go to australianstoma.com.au.

    Register for the Stoma Appliance Scheme—​​​​​​​the Australian Government’s Stoma Appliance Scheme (SAS) provides free stoma supplies to people with a temporary or permanent stoma. To be eligible for the SAS, you must hold a Medicare card and belong to a stoma association. Visit health.gov.au/stoma for more details.

    Diet after treatment

    Immediately after treatment—​​​​​​​particularly surgery—​​​​​​​you might be on a low-fibre or soft diet. During and after recovery from treatment, you may find that some foods cause discomfort or diarrhoea.

    Your treatment team may tell you about some foods to avoid, but different foods can affect people differently, so you will need to experiment to work out which foods cause problems for you. It is best to limit—​​​​​​​not eliminate—​​​​​​​these foods from your diet, as you may find that what you can handle improves over time. Keeping a food and symptom diary can help.

    If you have a stoma, you may need to make some dietary changes in the first few weeks to help the stoma settle. Nuts, seeds and very fibrous foods can lead to a blockage in the stoma. The level of stoma output will vary depending on how much you eat and when you eat. By trial and error, you might identify particular foods that irritate the stoma, but these vary considerably between people.

    Most people with a stoma return to their normal diet. If you have concerns, your doctor or stomal therapy nurse may refer you to a dietitian.

    The Australian Government’s booklet Improving Bowel Function After Bowel Surgery provides some helpful tips. Visit the website bladderbowel.gov.au to order a copy, or call 1800 330 066.

    Diarrhoea

    Diarrhoea, the frequent passing of loose, watery faeces, may be caused by different types of treatment:

    Surgery. If you have had part of your bowel removed, your bowel motions may be looser than you were used to. This is because the bowel absorbs water to form your stools. With a shorter bowel, the stools don’t form as solidly as before. This may be ongoing.

    Radiotherapy. Diarrhoea is a common side effect of radiotherapy. It can take some weeks to settle down after treatment has finished—​​​​​​​for a small number of people, diarrhoea is ongoing.

    Chemotherapy. This can cause diarrhoea and nausea. These side effects will go away after treatment and you can gradually resume a normal diet.

    The fast movement of food through your bowel before your body can absorb the water and nutrients can make you dehydrated. If left untreated, this can be dangerous. To manage dehydration, drink plenty of water and consider using a rehydration drink. If your anus becomes sore, a pharmacist can recommend a cream.

    Having diarrhoea can also make you feel tired. Try to rest as much as possible and ask family or friends to help out with chores. Talk to your doctor and nurses about ways to control diarrhoea, such as using medicines, changing your diet and replacing fluids. You may also be referred to a dietitian or to a physiotherapist who specialises in bowel function.

    Wind (flatulence)

    Many people who have treatment for bowel cancer, especially surgery, find that it gives them wind. Reducing the foods that produce wind may be helpful. These might include fruit and vegetables with a high amount of carbohydrates that cannot be digested and absorbed in the intestine.

    Blockages

    For people with a stoma, some foods can cause blockages. This means solids, fluids and gas can’t move through as they normally would. It can be uncomfortable and cause a bloated feeling or nausea. If you experience symptoms of a blockage for more than two hours or you start vomiting, contact your nurse or hospital.

    This website page was last reviewed and updated November 2018

    Information reviewed by: A/Prof Craig Lynch, Colorectal Surgeon and Chair, Lower Gastrointestinal Cancer Service, Peter MacCallum Cancer Centre, VIC; Merran Findlay, Executive Research Lead–Cancer Nutrition, and Oncology Specialist Dietitian, Royal Prince Alfred Hospital, NSW; Jackie Johnston, Palliative Care and Stomal Therapy Clinical Nurse Consultant, St Vincent’s Private Hospital, NSW; A/Prof Susan Pendlebury, Radiation Oncologist, St Vincent’s Clinic, NSW; Jan Priaulx, 13 11 20 Consultant, Cancer Council NSW; A/Prof Eva Segelov, Professor of Oncology, Monash Health and Monash University, VIC; Heather Turner, Consumer; Lynne Wolowiec, Consumer.

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