Charter Journal Stoma Care Issue 30

Issue 30

Charter stoma care

Emergency stoma surgery – practical advice to help you adapt to changes in your body image

Babies with a stoma – helping you to provide the special care required Committed to meeting your need for quality products and services

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Contents

Comment

Spoilt for choice Psychological issues 5

Coming to terms with emergency stoma surgery

by Carol Donaldson

7

Practical care Caring for a baby with a stoma

by Pat Coldicutt

9

Medical insight Assessing the risk of bowel cancer through genetic counselling

by Sharon Rowe

Coloplast 11 Is it time to review your product?

Straight talking 12 How women can deal with sexual dysfunction caused by a stoma

by Marie Waller 14 Resources Forum 15 Your questions answered

Cover pictures IMAGES.COM/CORBIS; BRAND X/SUPERSTOCK

CHARTER STOMA CARE ISSUE 30

The right to choose is something we take for granted. Most of us, I am sure, will have experienced a time when making a choice was just too difficult or too much of a responsibility, and we would rather have had someone tell us what to do, where to have gone or even what to have worn. If we do not understand the different choices available, we can often regret our decision.

I am forever wishing I had ordered a different meal when I see the one I did not choose arriving on a neighbouring table. If only I had known it would look like that!

I holiday in France and tend to eat in small, local restaurants where there is no choice. You are simply presented with the ‘menu du jour’. I find this pure relaxation and am rarely dissatisfied with the food that is put before me. It is still my choice, however, to go to that type of restaurant. Even when we find it difficult to make choices, we do still expect to have that opportunity. If choice is denied us, then we If choice is denied rightly feel aggrieved. us, then we rightly Choice is a popular word in the modern feel aggrieved NHS. The government is keen to ensure that patients get the right to choose, not only where they are treated, but also when and how.

When I started working in the NHS, patients were told what was wrong with them and what treatment was required. There was no discussion on alternatives, risks and benefits. Times have changed. Healthcare professionals spend more time discussing various treatment options, and they expect the patient to make a choice that can have lifelong consequences. Choice, therefore, cannot be taken lightly. It comes with responsibility and, as such, we need guidance from experts to help us in our decision-making.

There was no alternative to having a stoma for the majority of Charter stoma care readers, but you can still choose how your stoma is managed. This includes which type of appliance you use – for example, onepiece versus two-piece, opaque versus clear, and so on.

It also includes which manufacturer’s products you use

❛

❜

Continued overleaf 3

and how you obtain your supplies. There is a good reason why there is so much diversity in the stoma world. Stoma patients are unique individuals and one size does not fit all. For as long as I have been involved in stoma care, that choice has been valued by patients and professionals alike.

Choice means money

Charter stoma care Publication of Charter stoma care is made possible through the support of Coloplast Limited.

Providing choice, however, does have economic consequences. My French lunch, with wine, only costs me €11, simply because I do not have a choice of options. And now that the UK government is looking to reduce the economic burden of prescribing stoma and continence products, this may also affect our choice.

At the time of writing, healthcare professionals, stoma patients and the industry are waiting to hear the outcome of a Department of Health consultation regarding the reimbursement and remuneration of stoma and incontinence appliances and services. If the proposals outlined in the document remain unchanged, there is concern that the choice of appliances that manufacturers can offer will be greatly reduced, and that some of the services currently enjoyed by patients may have to be withdrawn. Much work has been done to ensure that the decision-makers fully understand how important these services are to people living with a stoma, and we are hopeful that a solution that suits everyone can be found.

Whatever the outcome, however, there will still be experts who can help and advise you about your own stoma care. Do not hesitate to contact them should you have any concerns; they are there to help.

Specialist (Cognitive Behavioural Psychotherapy), St Leonard’s House, Lancaster

Tina Lightfoot, Editor

Hazel Pixley National Secretary, Urostomy Association, Uttoxeter

The Editor Charter stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Tel: 020 7240 4493 email: edit@hayward.co.uk

Useful contacts ■ For urgent medical information or health advice, please ask your doctor or stoma care nurse, or phone NHS Direct. Tel: 0845 4647.

■ For advice on, or to order, stoma care products, please contact Charter Healthcare.

Freephone: 0800 132 787. website: www.charter-healthcare.co.uk

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Editor Tina Lightfoot RGN MSc Lead Colorectal Specialist Nurse, Countess of Chester NHS Foundation Trust, Chester Editorial Board Anne Demick National Secretary, IA, Ballyclare Helen R Dorrance MBChB(Ed) FRCS (Gen Surg) Consultant Colorectal Surgeon, Victoria Infirmary, Glasgow Susan Fell MN (Glasgow) PG DipN PG Cert Comm Coun RGN SCM Lecturer, Glasgow Caledonian University Ernie Hulme Trustee, Colostomy Association, Reading Charles Knowles PhD FRCS Consultant Colorectal Surgeon, Homerton University NHS Foundation Trust and Barts and The London NHS Trust Tim Norton RMN BSc(Hons) Dip Behavioural Psychotherapy Dip Human Sexuality Clinical Nurse

Theresa Porrett RGN MSc Nurse Consultant in Coloproctology, Homerton Hospital, London Paul Rooney DM FRCS Consultant Colorectal Surgeon and Head of Colorectal Surgery, Royal Liverpool University Hospital, Liverpool Editorial Director Elaine Bennett. Senior Sub Editor Mark James.

Sub Editor Joel Barrick. Editorial Assistant Claire Robertson.

Senior Designer Richard Seymour. Art Director Andrina de Paiva.

Creative Director Martin Kennedy. Publisher Christopher Tidman.

The data, opinions and statements appearing in the articles herein are those of the contributor(s) concerned; they are not necessarily endorsed by the sponsor, publisher, Editor or Editorial Board. Accordingly, the sponsor, publisher, Editor and Editorial Board and their respective employees, officers and agents accept no liability for the consequences of any such inaccurate or misleading data, opinion or statement.

Published by Hayward Medical Communications, a division of Hayward Group plc, The Pines, Fordham Road, Newmarket CB8 7LG. Tel: 01638 723560. Fax: 01638 723561. email: admin@hayward.co.uk Design & Editorial Office Hayward Medical Communications, 8–10 Dryden Street, London WC2E 9NA. Tel: 020 7240 4493.

Fax: 020 7240 4479. email: edit@hayward.co.uk Copyright © 2008 Hayward Group plc. All rights reserved.

ISSN 1466-3708. Printed by Warners Midlands plc, UK.

CHARTER STOMA CARE ISSUE 30

Psychological issues

Coming to terms with emergency stoma surgery Undergoing emergency stoma surgery is a shock. Here, Carol Donaldson provides practical advice to help your mental recovery and reassures you that all of your feelings are normal Coming to terms with an emergency stoma operation can be difficult. Most people recover well and adapt to the changes in their body quickly; but for some, this adaptation is more complicated and it takes them longer to come to terms with what has happened.

Adapting to an altered body image is like going through a grieving process, but it is normal to feel like this

Before surgery

surgery are diverticular disease (a disease of the large intestine that may cause the bowel to perforate), fistula formation or bowel cancer.

Hartmann’s procedure involves the removal of the sigmoid colon (a muscular part of the large intestine that causes stool to move into the rectum) but not the upper rectum, and the creation of an end-colostomy from the remaining colon, while leaving the rectal stump closed inside the patient. Suddenly becoming unwell, being admitted to hospital and then being told that you require this type of surgery is very frightening, and it is natural to feel afraid.

At a later stage, it may be possible to reconnect the bowel to the rectal stump and close the colostomy, thus technically reversing the stoma.

Hartmann’s procedure

Following surgery

There are many different conditions for which patients will require emergency stoma surgery.

One of the most frequent emergency operations seen in hospital is called Hartmann’s procedure.

Some of the conditions that can lead to this

Sometimes patients get a mucus discharge from their rectum and they feel they need to pass a motion from their back passage. This is normal.

Mucus is a bowel secretion that acts as a natural lubricant to aid the movement of faeces. The

CHARTER STOMA CARE ISSUE 30

IMAGES.COM/CORBIS

Before emergency surgery, there is often not the time to fully explain the implications of having a stoma, and often patients are too unwell to take in this kind of information. When surgery requiring the formation of a stoma is planned, patients are seen by a stoma nurse, who explains the operation, how a stoma functions and how to deal with it practically. They may also show you a stoma pouch and a picture of a stoma.

They can arrange for you to meet with another patient who has had the same type of surgery. All this will help you to start to come to terms with the operation and life with a stoma.

A key area of a stoma nurse’s job is to mark the optimum site for the stoma – if the stoma is not formed in the best position, it can lead to practical problems after surgery. The patient can participate in the decision-making process, which gives them some control of the situation.

In the case of an emergency, this may not happen, either because there is no time or the stoma nurse is off duty. If the stoma nurse is unavailable, it is the surgeon who decides the position for the stoma. In some cases of abdominal surgery, it is not realised that a stoma will be needed until the surgeon undertakes the operation, so the patient will have no idea, before the effects of the anaesthetic wear off, that the formation of a stoma was required.

Carol Donaldson RGN RM BSc (Soc Sc-Nurs)

Clinical Nurse Specialist Stoma Care, Victoria Infirmary, Glasgow

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Psychological issues rectum and anus do not recognise that they are not currently in use, so this part of the bowel continues to produce mucus. Mucus can build up in the rectum and this is when you get the feeling that you need to move your bowel. To help reduce this build-up, it is advisable to sit on the toilet daily and relax to expel any mucus.

Emotionally, it is normal to want to be left alone in the first few days. It is difficult to come to terms with stoma surgery. A lot of people blame themselves – how could they have been fit and healthy one minute, and then become ill and require surgery the next? Patients try to work out how they could have prevented it happening.

The reality is: you have done nothing wrong.

Discharge home Once discharged from hospital, you are faced with the challenges of caring for your stoma, while your body is recovering from major surgery. The reality often does not become apparent until you are back home. Confidence is gradually gained from practical experience.1 Recovery time varies: most people will be feeling fitter within six to eight weeks but it can take up to a year, sometimes more, to fully recover physically, psychologically and socially. It can be difficult to adapt to the physical change in your body.

Adapting to an altered body image is like going through a grieving process. Patients grieve for the loss of a body function, a body part and their own self-image.2 Accepting the physical change is the first step towards recovery.

You may experience changes in mood and, at times, feel frustrated that you are not recovering as quickly as you were hoping to. It is normal to feel like this. Throughout your recovery, it helps to talk about your feelings, maybe with your partner or with a close relative, or you may find support from a patient who has been through the same experience helpful. Your stoma nurse can put you in touch with such a patient. There are often local support groups that meet regularly, and your stoma nurse will also be able to provide you with this information. These groups allow ostomates (people who have had an operation to create an opening from an area inside the body to outside) to meet in a confidential environment, where they can talk openly about their problems. The Colostomy Association is also a good source of information and support (see Box 1), and produces a quarterly magazine full of useful articles.

Key points ● Before emergency stoma surgery, there is often no time to fully explain the implications of the operation to the patient. ● Following surgery, you have to adapt to the physical changes and accept your new body image, which can be difficult. ● Many people find it is invaluable to speak to another ostomate to find out how they have managed adjusting to life with a stoma.

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Box 1. The Colostomy Association’s contact details ■

Tel: 0118 939 1537 ■ Helpline: 0800 587 6744 or 0800 328 4257 ■ email: cass@colostomyassociation.org.uk ■ website: www.colostomyassociation.org.uk As you start to recover, daily life issues – returning to work, going on holiday, re-establishing a relationship with your partner – may become more of a concern. Adjusting to life with a colostomy takes time. This is when many people find it is invaluable to speak to another ostomate.

Reversal of a colostomy The reversal of a colostomy is usually done within six months to one year after the initial surgery. This gives you time to get physically fitter. Your stoma nurse and surgeon will discuss with you the possibility of a reversal. The abdominal wound will need to be opened again and you will be in hospital for around ten to 14 days. The risks will be fully explained to you by your surgeon. It may be helpful to speak to someone who has undergone a reversal.

This can be arranged by your stoma nurse.

It is a big decision to have your stoma reversed. Patients can feel apprehensive about it, especially if the first operation was carried out as an emergency and they were very unwell. Remember, this time it will be a planned procedure and you will be much fitter. Your surgeon and anaesthetist will decide if you are fit enough for further surgery. You also need to consider that bowel function can change after the reversal. You may find that you need to move your bowel more frequently or that you have poor control of your bowel. It can take time to settle down.

When the bowel is rejoined to reverse the stoma, the surgeon may feel this new join needs time to rest and heal, so occasionally patients will need to have a temporary stoma higher up their bowel. It is usually in place for about three months before it is reversed, which involves further surgery. Many patients, feeling they are managing well with the colostomy, decide that they have been through enough. Almost half of patients do not have their temporary stoma reversed, either because they choose not to or because of surgical difficulty. Speaking to other patients and professionals will help you to gain enough information to enable you to make an informed choice.

Recovering from stoma surgery can take time, both physically and psychologically. There are many different anxieties for new ostomates. The recovery can seem to take longer for patients who had their surgery as an emergency, but things get easier with time and, as your confidence builds, this enables you to adapt to living with a stoma, leading to a full and active life ■ References 1. Metcalf C. Stoma care: empowering patients through teaching practical skills.

Br J Nurs 1999; 8: 593–600.

2. Borwell B. Psychological considerations of stoma care nursing. Nurs Stand 1997; 11: 49–55.

CHARTER STOMA CARE ISSUE 30

Practical care

Caring for a baby with a stoma Nursing young children who require or who have a stoma is a rewarding job, says Pat Coldicutt. Here, she offers plenty of useful advice for parents and carers

BRAND X/SUPERSTOCK

Nursing children aged 0–16 who have had a stoma is a very rewarding job. Stoma care has progressed a great deal since the first stoma was fashioned by Duret – a paediatric surgeon – in 1793. Nursing children is different from nursing adults for many reasons. Children have stomas mainly because of congenital malformation (a physical defect present in the baby at birth), and occasionally because of trauma or constipation.

On average, the number of children requiring such an operation is about 30–50 per year in the Royal Liverpool Children’s NHS Trust. Most of these children, at some point in their lives, will have their stoma reversed.

Support and advice Babies can be transferred from the baby care unit at any time of day or night, and surgery can follow within a few hours of birth. Often, the stoma care nurse meets the infants after surgery.

The nurse not only deals with their immediate needs but also with those of their parents. A sympathetic, empathetic approach is required during this very worrying time. Support can be given in a number of ways.

Each infant has an allocated nurse to look after them and the medical team gives ongoing care, support and explanations to the family. The stoma care nurse will give support and advice whenever required. Other important members of the team include the dietitian, the psychologist and the play specialist. Other parents experiencing a similar problem play a vital role too, as they can offer support and advice different from that given by professionals.

Learning how to care Once the infant has had surgery, the parents and carers are encouraged to participate in some, if not all, of the care. Teaching begins by the parent or carer observing their child’s nurse emptying the stoma pouch. The pouch of choice is usually a clear, drainable one, as it can be kept in place for up to three days – so you avoid damaging the child’s delicate skin any more than necessary. The carer will then teach the parent to remove the pouch and to cut a new one to the correct size, which can take practice.

CHARTER STOMA CARE ISSUE 30

Cleaning the stoma can be carried out in a bath or with warm water and unperfumed soap.

The skin should be patted dry gently and the pouch can then be applied. This is best done in a relaxed atmosphere with the infant kept warm, and not too long after a feed, so that the child is not hungry and distressed. Applying the pouch does take a little practice. No pressure should be put on the parents or carers to complete this task in any set time limit. They should be encouraged to do it in their own time, with guidance and ongoing support.

Parents are also taught how to deal with certain situations, such as a prolapsed stoma or sore skin. They are urged not to panic and to seek help as soon as possible. The stoma is usually red in colour, and painless, but it may change colour if the baby cries. This is normal and the usual colour should return.

After cleaning the stoma with warm water and unperfumed soap, the skin should be dried gently before a pouch is applied

A better range of products As the infant grows and becomes more active, they may require a different pouch. If the pouch is not sticking, or if it needs to be changed more often during the day, a different pouch or additional products may be required to obtain a good seal. The nurse will advise the family on what other products are available and give the necessary advice and support.

When a leaky pouch is removed, the skin may look inflamed, but it should settle after the

Pat Coldicutt RSCN RGN BA(Hons) DPSN ENB 216 N100 C&G 7307

Nurse Specialist Stoma Care and Promotion of Continence, Royal Liverpool Children’s NHS Trust, Alder Hey, Liverpool

7

Practical care pouch has been removed and the peristomal skin should be gently cleansed. Water and unperfumed soap are advised, but not baby wipes as they can cause irritation.

If the skin becomes sore, it is important to ensure that the pouch has been cut correctly. Often, if it has been cut too big, it leaks underneath and the faeces burn the delicate skin. If the infant has creases or dips in the skin, leakage can occur at these areas. To avoid this, the skin can be filled with a specially designed paste. Strip paste is very helpful as it can be moulded to the right shape and placed either on the problem area or on the back of the pouch that coincides with the problem area. The strip paste also swells when wet, which ensures a smooth surface, and is easy and painless to remove.

Stoma care companies do listen to patients’ needs, either when explained to them by the stoma care nurses or from the patients themselves – for example, at open days. As a result, there is now a better range of products to choose from, to meet the needs of all babies and children who have a stoma.

Useful tips Once confident with the procedure, the parents or carers carry out the care whenever it is required. They often pass tips on to their stoma care nurse. Here are some of the useful ideas that I have heard. ● Warm the pouch before use, either by leaving it on a radiator or near a hairdryer on a low heat setting. ● Before use, coat the inside of the pouch with a few drops of baby oil on a cotton bud. This helps the faeces slide out and makes drainage easier. ● When applying the pouch, a good seal is really important. Insert your index finger up through the drainable port and, using your finger, press all around the stomal edge. ● If any problems occur, do not try to deal with them alone. Seek help and advice earlier rather than later. ● If the pouch leaks, change it, do not patch it up. This prevents enzymes in the faeces getting in contact with the child’s skin and making it very sore. ● Always have a good supply of pouches and products, and take extra supplies with you when you go on holiday.

Key points ● Children mainly have stomas because of a physical defect (congenital malformation) at birth. ● Each infant has an allocated nurse who gives the parents or carers ongoing support and advice. ● Parents are taught how to deal with difficult situations and are urged not to panic and to seek help as soon as possible. ● Play specialists use games, diagrams and relevant information to gain the trust of the child and to build a rapport with both them and their family.

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Figure 1. This doll was drawn by one of our play specialists to help explain to a four-yearold girl about her stoma

Figure 2. The Stomopoly game can be used to explain the normal bowel, to show which part of the bowel is affected and, if a part is being removed, where it is situated

Early preparation Whether you are dealing with an infant, a toddler, or a young person requiring, or having, a stoma, preparation should be started as soon as possible – in the case of babies, it is, of course, the parents who need the preparation.

Preparation should be carried out in a series of meetings in 30–40 minute slots, so that the child or young person does not get overloaded with information. The information given should be accurate, honest and in a language that everyone understands. Time should be allocated to answering questions and reflecting on what has been said.

The involvement of a play specialist is really important.

By using games, diagrams, snap cards, flash cards and ageappropriate information (see Figures 1 and 2), the child’s trust can be gained and a rapport established both with the child or young person and their family.

Stoma care companies provide lots of educational information that helps with the preparation process.

Booklets and DVDs can be given to be read or viewed in the comfort of their own home, and any questions can be written down and asked at a later stage.

Caring for children and young people with a stoma is a very important role and, as a paediatric nurse, I am honoured to be involved with the lives of vulnerable children. Parents never fail to impress me. They are so positive, even when the situation is difficult. They help other parents and give them the moral and practical support that professionals cannot give ■ Further reading

• Johnson H. Stoma care for infants, children and young people. Paediatric nursing 1992; 4: 8–11.

• O’Brien BK. Coming of age with an ostomy. Life with a stoma may be especially difficult for teens. Am J Nurs 1999; 99: 71–76.

• Parry A. Stoma care in neonates – Improving practice. Journal of neonatal nursing 1998; 4: 8–11.

CHARTER STOMA CARE ISSUE 30

Medical insight

Assessing the risk of bowel cancer through genetic counselling Are you worried about bowel cancer in your family? A genetic counsellor may be able to help you – and send you for screening and tests if necessary – explains Sharon Rowe Bowel cancer is the third most common cancer in the UK and affects about one in 35 people (both men and women). It is also known as colorectal or colon cancer because most tumours occur in the rectum or colon. Many of us will know someone who has had bowel cancer. Most of the time it occurs by chance, but about 5% of people with bowel cancer have an inherited tendency to develop the disease. It is important to remember that it is rare to have an inherited form of bowel cancer.

Genetic counselling is aimed at helping individuals and families understand the science of genetics and how it may relate to them, if they are faced with a possible diagnosis of a genetic disease. It is available, for example, to anyone who may have questions about bowel cancer in their family. You may be concerned that there is a higher risk of you, your children, your brothers or your sisters developing bowel cancer. You may have questions about screening, or you may have heard about genetic testing and want to know more about what it entails.

● The types of cancer that your relatives were diagnosed with ● The ages at which the diagnoses were made.

The genetic counsellor will use the information to draw your family tree (see Figure 1). You should not worry if you cannot find the information, or are unwilling or unable to talk to family members who could help you with it. Sometimes the genetic counsellor will be able to check what type of cancer relatives may have died of by searching cancer registries (registries that collect information on the incidence or survival of all cancers and can therefore indicate historical trends).

Dorothy died of unknown cancer aged 45

Bill died of old age at 79

Sharon Rowe RN HV MSc

Genetic Associate, Department of Clinical Genetics, Countess of Chester Hopsital, Chester

Sara died of old age at 80

Robert died of a heart attack aged 50

Meeting a genetic counsellor

CHARTER STOMA CARE ISSUE 30

Jane b. 1940

Peter b. 1935

Marian b.

1958 diagnosed with endometrial (womb) cancer last year

Stephen May b. 1940 b. 1937 died diagnosed with of bowel cancer bowel cancer aged 43 aged 55

Patrick b. 1960

Anne is worried about the history of cancer in her family and would like genetic counselling Key:

Men

Women

Anne b. 1962

James b. 1957

Ellie b. 1990

Tom b. 1992

Frank b. 1937

Betty b. 1939

Jenny b. 1961

John b. 1960

Mike b. 1995

Shaded shapes = individuals diagnosed with cancer

CANCERBACKUP

Your GP, consultant or colorectal nurse specialist can refer you to the genetic clinic, where you will be seen by a genetic counsellor or a consultant geneticist. They are experts in genetics and will listen to your concerns, assess the risk for you or for members of your family in developing bowel cancer and advise you about the possible ways of managing that risk.

Before you attend the clinic, you may be sent a questionnaire or receive a phone call from a genetic counsellor seeking to obtain details of your family history. It is usually a good idea to find out as much as you can about your family history of bowel cancer and other cancers before your appointment at the clinic. Information that you may be asked to provide includes: ● The names and ages of your family members – usually people are only able to go back as far as their grandparents; if you can go back further you are doing exceptionally well!

deceased

Figure 1. This is what a family tree might look like for a family with a suspected cancer gene

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Medical insight people with some family history of bowel cancer ❛fallMost into the group of people who are at moderate risk ❜ Moderate or high risk Most people with some family history of bowel cancer fall into the group of people who are at moderate risk. This group includes people who have: ● One first-degree relative (that is to say a parent, a brother, a sister or a child) with bowel cancer diagnosed before the age of 45 ● Two close blood relatives on the same side of the family diagnosed with bowel cancer.

These people may be at an increased risk of getting bowel cancer during their lifetime. This increased risk may be due to a number of as yet unknown faulty genes in the family – that the geneticist would be unable to test for – along with environmental factors such as diet.

Bowel cancer in moderate-risk families is unlikely to be hereditary and therefore, if you fall into such a family, you are more likely not to develop bowel cancer than you are to develop it.

People who are at moderate risk of developing bowel cancer may be offered screening to detect abnormal changes in their bowel. This type of screening is known as a colonoscopy (an examination that looks inside the large colon and part of the small bowel).

To develop an inherited form of bowel cancer is very rare and generally only occurs in families where: ● At least three close relatives (parent, brother, sister or child) on the same side of the family have developed bowel cancer at a young age (before the age of 45) ● At least two close relatives on the same side of the family have developed bowel cancer at a young age, and another close relative has developed a different type of cancer – such as endometrial (cancer of the womb), ovarian, stomach or bladder cancer ● At least one person in the family has developed hundreds of polyps in their bowel (polyposis).

Testing for risk of bowel cancer In some situations, genetic testing is available for people who are suspected of belonging to a high-risk family, so that they can find out if they have inherited a faulty gene that puts them at a high risk of developing bowel cancer.

The genetic counsellor may discuss two types of genetic tests. In the first test, tumour cells from the bowel (of a family member) that have been removed by surgery are tested for a genetic trait called ‘instability’ of the DNA. If this trait is present, then it is more likely that the bowel cancer in the family is hereditary. However, this test is more indicative than conclusive.

The second test requires a blood sample from a family member who has had bowel cancer. The sample is tested for a gene alteration which may be running in the family.

If the altered gene is identified, then other family members can be offered the same blood test to see if they have the same alteration.

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People identified with an altered gene are at an increased risk of developing bowel cancer. Having a genetic test raises many issues, both for relatives who have not had cancer and for those who have had it.

Genetic counselling gives families the opportunity to talk these issues through, which may help in making decisions about screening and gene testing. If no gene alteration is identified, the bowel cancer in the family might still be inherited. There might be an alteration in another gene that has not yet been discovered. This would mean that family members might still be at an increased risk, and it would be important for them to continue with any screening programme recommended.

Shared tendencies Just as relatives tend to resemble one another in height and appearance, they also tend to share any tendency to develop – or not to develop – specific illnesses. Many diseases – for example, arthritis, diabetes, heart disease and cancer – are somewhat more common in the relatives of people who have developed the conditions themselves.

Predisposition to bowel cancer or polyps also runs in families, but we do not yet understand all the genes, nor all the environmental factors – though it is known that poor diet and smoking will increase the risk.

Following your visit to the genetic clinic, it is important to remember that any new information about your family history may change your situation. If there is a change in your family history, contact the clinic and they will review matters to see if it changes the advice that was given to you when you were first seen ■

Key points ● Bowel cancer is the third most common cancer in the UK, affecting about one in 35 people. ● Most of the time bowel cancer occurs by chance, but about 5% of people who develop it have an inherited tendency to do so. ● Genetic counsellors are experts in genetics who can help assess the risk for you and members of your family in developing bowel cancer. ● Genetic testing may be available for people who are suspected of belonging to a highrisk family. ● Genetic counselling gives families the opportunity to discuss the issue and may help family members reach decisions about what they want to do.

CHARTER STOMA CARE ISSUE 30

Is it time to review your product?

New products are released frequently and could provide you with a better quality of stoma care.

If you are interested in trying the latest innovations, please see our most up-to-date products below.

To order complimentary samples, visit www.charter-healthcare.co.uk or use the form at the end of this journal and return it in the reply-paid envelope provided. Alternatively, call 0800 220 622. We will be happy to help you identify the best option for you.

Closed bag one-piece Figure 1.

SenSura one-piece, closed bag

SenSura closed We believe this offers you a new era in stoma care. Released in 2006 following years of development, the feedback on this product is amazingly positive. Its unique double-layer adhesive can provide you with enhanced security and skin friendliness, allowing you to have all-round confidence in your choice (see Figure 1).

Assura Inspire closed with dual filter Assura Inspire offers you a comfortable product with the proven adhesive and two filters so you can easily control any ballooning that occurs (Figure 2).

Figure 2.

Assura Inspire, closed bag, dual filter

Drainable bag one-piece SenSura drainable This offers a new era in stoma care, giving you all-round confidence. With the drainable bag, you benefit from an improved Hide-away outlet and the split soft cover option that allows the bag to be folded to half its normal size for more discretion when you need it (Figures 3 and 4).

Figure 4.

SenSura one-piece, cosmetic closing

Figure 3.

SenSura onepiece, open bag, midi

Assura Inspire drainable with Hide-away outlet and dual filter Assura Inspire offers you a comfortable product with the proven adhesive and ground-breaking Hide-away outlet, the first integrated opening in the UK. The two filters also allow you to easily control any ballooning that occurs (Figure 5).

Only the single filter product is available in Scotland.

Figure 5.

Assura Inspire drainable, with Hide-away outlet and dual filter

Urostomy bag one-piece Assura Urostomy Multichamber This innovative product has a specifically designed thicker anti-corrosion baseplate.

The multichambers in the bag are designed to reduce splashing sounds and provide a Figure 6. Assura low profile to the bag as it fills, giving you an overall more discreet product. The white bags have the option to fold up the outlet for even more discretion (Figures 6 and 7). Urostomy, modified for easy removal

Assura Urostomy Assura offers a comfortable product with the proven adhesive and a wide range of sizes to allow you to choose your best option (Figure 8).

All the products mentioned are available in shallow convexity, called Soft Seal, which is designed for people with flush or retracted stomas or stomas situated in skinfolds. Soft Seal should only be used after prior assessment of suitability by an appropriate healthcare professional.

CHARTER STOMA CARE ISSUE 30

Figure 7.

Assura Urostomy Multichamber bag Figure 8. Assura Urostomy onepiece bag

11

Straight talking

How women can deal with sexual dysfunction caused by a stoma Express your fears, talk to your partner and set your own pace: this is some of the useful advice Marie Waller has for women whose sex life is affected by a stoma Having a stoma can affect many aspects of your life, temporarily or permanently. One aspect is RGN BSc(Hons) Health Studies ENB 216 931 980 sexuality, and sexual issues are often difficult to Clinical Nurse Specialist talk about. This article highlights issues around Coloproctology/Stoma, sexual function for women who have a stoma. It Cambridge University tries to demystify the issue so that people can Hospitals NHS Foundation Trust, talk more openly. It also proposes some simple Addenbrooke’s strategies to overcome potential problems.

Hospital, Cambridge ‘Sexual function’ encompasses much more than the ability for sexual intercourse. It includes sex drive, intimacy, arousal and sensuality. ‘Sexual dysfunction’ usually refers to problems in these areas that are both physical and emotional in cause and effect – as are the potential implications of having a stoma.

Marie Waller

Physical factors The nature of the surgery can have a physical effect on sexual function, primarily because of the proximity of bladder, vagina/uterus and rectum (see Figure 1). For example, low pelvic surgery can affect nerves that play a role in arousal and sexual feeling. Removal of the rectum can change the position of the uterus,

12

Fallopian tube

Anus

Ovary Uterus (womb) LL/ SC IE N CE P HOTO LI BR ARY

Changes to sexual function following stoma surgery can be positive. For example, a woman’s quality of life may have been previously reduced by a predisposing condition, such as incontinence or inflammatory bowel disease.

Having a stoma may improve quality of life altogether, including physical wellbeing, hence improving libido and sexual function. Those who had no symptoms before surgery, as can be the case for cancer patients, are more likely to experience a negative change in their quality of life, at least in the early stages of recovery.

Some people may feel that because they have had lifesaving surgery they should be satisfied with being alive and well, regardless of any sexual dysfunction. Others may only realise after the surgery what their sexuality was like before, and any changes may prompt their dissatisfaction.

Rectum

Bladder Pubic bone Urethra Vulva

CU

Quality of life

Colon

R TE PE

Vagina

Perineum

Figure 1. Side view of the female pelvis showing the proximity of bladder, vagina/ uterus and rectum which ‘flops’ back. Removal of the bladder may imply removal of the uterus and vaginal wall as well, which also alters the anatomy. This can result in pain during sexual intercourse.

Some surgery – for example, the removal of the rectum and anus – can result in a wound or scar in the perineum (between the vulva and the anus). This is an obvious boundary to sexual activity. Initially, the area around this wound is likely to be very tender and possibly numb. Even when the scar has healed, there may be fear of causing damage or pain to the area when sexual activity takes place. Healing internally takes longer than externally, so tenderness may still be an issue for a while after surgery.

General physical recovery from surgery can have an effect on the libido. Dryness of the vagina can occur if the nerves that lubricate it

CHARTER STOMA CARE ISSUE 30

Straight talking during sex are damaged, which can lead to discomfort and pain. Some women also worry that their stoma may be active or could get damaged during sexual activity.

techniques can also be employed by the woman to explore how she feels about her body and what feels good and comfortable.

Emotional issues

Making the stoma more discreet

Having a stoma may affect how a woman sees herself and how she perceives that others see her. She needs to come to terms with her stoma, which takes time and patience.

There is no set length of time for this acceptance, as everyone is unique.

Some women fear that the stoma will reduce the sexual activity they experienced ‘pre-stoma’, that they will not be sexually attractive to their partner any longer, or that the stoma will alter their role as a wife and/or lover. The actual appearance of the stoma and pouch, together with passing bodily waste from the abdomen, can affect a woman’s perception of her femininity.

In order to make the stoma more discreet during sexual activity, it is advisable to empty or change the bag immediately beforehand. This will ensure that there will be much less concern about it leaking and it will be flatter and less noticeable.

For intimate times, women with colostomies – or indeed urostomies – can wear a stoma cap. Looking like oversized plasters, these caps hold a very small amount of waste and have an absorbent layer. If they do not inspire confidence in terms of capacity, or for women with ileostomies, there are mini-sized pouches, which are more discreet, slightly smaller versions of the standard pouches. You can ask your stoma care nurse about these products and obtain samples from the manufacturing companies.

Wearing pretty or sexy lingerie helps all women to feel feminine and sensual. For a woman with a stoma, lingerie has the added benefit of covering or disguising the stoma and pouch. Crotchless knickers, basques and camisoles allow for sexual intercourse without the pouch being exposed. There are mail order companies – for example White Rose and CUI Wear – that offer lingerie specifically designed for women with a stoma. Some products have a pocket to keep the pouch discreet and in place.

If a woman experiences, or is anxious about, dryness during sexual intercourse, lubricating gel – for instance, K-Y® Jelly – can be applied beforehand. Involving the partner in the application can increase the pleasure of the experience and allows the woman to express what she finds comfortable and enjoyable. Trying different positions helps to find out which is the most comfortable, and again encourages communication about sex between the woman and her partner.

Having a stoma can affect many aspects of life for anyone, regardless of gender or age. Sexual dysfunction following stoma surgery can occur in both men and women. Some physical and emotional sexual issues are specific to women, but not all women with a stoma are confronted with them. Sexual dysfunction is often temporary, even more so if you have the support of loved ones and healthcare professionals, and if you employ simple strategies such as those suggested in this article ■

Overcoming anxieties It can be difficult to talk about sexual problems after stoma surgery. In the early stages of recovery, there are other priorities, like getting well and going back to normal life. However, talking with your partner or with someone close can help, both in expressing your concerns and in getting a clearer idea of how they feel. If feelings are not expressed, misunderstandings often occur. Reassurance from their partner or loved ones that the stoma does not change how they feel about the person, as well as reassurance about practical issues – how the stoma/pouch looks, and if it smells – are crucial in helping women to overcome their anxieties.

Talking with your stoma nurse can also help to dispel fears, and they will provide practical suggestions for coping with any sexual problem. Sometimes people feel they need ‘permission’ to resume physical activity, including sex.

Involving your partner in these discussions can be beneficial, because it makes it easier to talk together in the presence of someone else, and because it gives your partner a sense of being included and a chance to express their feelings. If you need further help, your stoma care nurse or doctor can refer you to an appropriate source.

Setting your own pace With intimacy and sexual activity, it is important to set your own pace. Physical recovery from surgery can inhibit sexual activity. But small things like kissing, holding hands and hugging can provide huge emotional support and help maintain the intimacy in the relationship. Any activity should be built up gradually; this applies to sexual activity, as well as to how far you walk and how much you take part in social activities. As soon as you are able to, it is advisable to resume your normal routine, including sharing the same bed.

Touch can help to give a feeling of being wanted and loved. It can also be important as part of the sexual activity, even if it does not necessarily mean touching the genital areas. Stroking can be very sensuous and part of the build-up to resume full sexual activity. Touch

CHARTER STOMA CARE ISSUE 30

Key points ● Having a stoma may improve quality of life, hence improving libido and sexual function. ● With intimacy and sexual activity, it is important to set your own pace. ● Sexual dysfunction is often temporary, even more so if you have the support of loved ones and healthcare professionals.

13

Resources

Bowel Cancer UK

The Urostomy Association

Inside Out Stoma Support Group

14

2008 is Bowel Cancer UK’s 21st year and we remain as busy as ever, raising awareness of bowel cancer, including its symptoms, the ways of reducing risk and the issues and developments surrounding the disease. We continue to campaign on behalf of patients for greater access to the effective treatments they have been unable to receive on the NHS. This is done through the support of lawyers working pro bono on our behalf, and by our Patient Campaigning Pack, first published in 2007 and to be reprinted this year.

We continue to actively support national bowel cancer screening programmes in England and Scotland, by co-organising regular awarenessraising visits to screening centres, inviting MPs/MSPs, the media and local councillors. We are also encouraging the early roll-out of similar screening programmes in Wales and Northern Ireland. In November 2007, we published our own report into the progress of screening to date.

Our core offering remains our advisory service, run by experienced, specialist colorectal, stoma and oncology nurses. This is of invaluable help to people concerned about, or affected by, the disease. We updated our website recently and plan to expand it further, along with the advisory service, this year.

In 2008, we will continue to raise awareness of bowel cancer among younger people. In addition, we will be focusing on the information needs of ethnic minorities. Future plans include talking to other hard-to-reach groups, such as mental health service users, people with disabilities and those living in isolated or deprived communities.

Bowel Cancer UK 7 Rickett Street, London SW6 1RU. Tel: 020 7381 9711.

Advisory service: 08708 50 60 50. email: admin@bowelcanceruk.org.uk website: www.bowelcanceruk.org.uk

The Urostomy Association (UA) held its national annual general meeting (NAGM) in Daventry in October 2007. About 150 people attended for the weekend, enjoying talks and DVDs, and visiting the large stoma care exhibition.

One highlight was the showing of a new patient DVD, presented by Pam Flint, actor Dennis Waterman’s partner. It was well received and we hope to have it available for distribution shortly.

Rob Pickard, a consultant urologist from Newcastle-upon-Tyne, told everybody about the latest research into the causes and treatments of urinary tract infections in people with a urostomy.

After the business meeting, a conference dinner was held, followed by dancing.

The next NAGM is 10–12 October 2008 at a hotel near Nottingham. Further details are available from our National Secretary, Hazel Pixley (contact details below).

Urostomy Association 18 Foxglove Avenue, Uttoxeter, Staffs ST14 8UN. Tel: 01889 563191.

Fax: 01889 568222. email: secretary.ua@classmail.co.uk website: www.uagbi.org

This stoma support group was founded by patients at St Mark’s and Northwick Park Hospital, Harrow, London. It is run by the patients themselves for the benefit of all stoma patients and their families, as well as for those considering surgery.

Our aims are, broadly, as follows: to be a selfhelp group providing friendship and support for all stoma patients and/or their families; to keep members up to date through our quarterly newsletter and meetings throughout the year; to collect information about living with a stoma; and to increase public awareness of what a stoma is.

One thing we try not to lose track of is that living with a stoma affects not just the patient, but also their families and friends.With this in mind, our coffee mornings and meetings are open to all.

Inside Out Stoma Support Group 218 Long Elmes, Harrow Weald, Middlesex HA3 6LG. Tel: 020 8428 4242.

Mob: 07721 76 79 43. email: support@iossg.org.uk website: www.iossg.org.uk

CHARTER STOMA CARE ISSUE 30

Forum

In conversation with …

In this regular feature, we will answer your questions and address any difficulties you are having related to your stoma. Let us know what you need Tina Lightfoot RGN MSc Lead Colorectal Specialist Nurse, Countess of Chester NHS Foundation Trust, Chester

I had a urostomy due to cancer of the bladder in 2004. As you know, one of the consequences is erectile dysfunction. I was wondering whether you had received any feedback on a vacuum pump that I have seen advertised as ‘the natural method for stronger/larger erections and penis enlargement’. If it is of any benefit, then I would like to find out whether it is available on the NHS.

Mr WW, Swansea Erectile dysfunction is, unfortunately, a welldescribed complication of pelvic surgery.

On a positive note, there are many treatments available now. Before you rush into buying any apparatus from a catalogue or via the internet, I would advise you to discuss your condition with either your urologist or GP. They will explain to you the possible options.

Some hospitals have special clinics to help patients who experience erectile dysfunction.

If there is one in your local hospital, your stoma nurse will be able to advise you ■ I have had a urostomy for 21 years, and until now have had no problem with the stoma or my skin. Recently, I noticed that the skin around where the stoma comes out on my stomach was starting to go a greyish black colour. It actually looks like bruising, but as my flange and bag cover the stoma, I do not see how I could have bruised it. I would be very grateful for some advice, as I do not have a stoma care nurse.

Ms WA, via email It is very difficult to advise without seeing what the problem is. However, discolouration

CHARTER STOMA CARE ISSUE 30

of the skin around the stoma is quite common. It can be caused by a number of things – for example, interaction with the adhesive or urine. For patients who use a convex flange, this discolouration can be due to pressure on the skin around the stoma. If you let me know which hospital you attend I will tell you who your stoma care nurse is ■ I too am in the position where my local council will change to fortnightly waste collection (see the ‘Comment’ in issue 28 of Charter stoma care, ‘Time to go green’). Is it possible to approach manufacturers/suppliers of colostomy pouches to trial blank plate with adhesive on, to reseal used pouches?

When they are cut, obviously, the peeloff bit has the hole and is not restickable anyway. However, if each pouch had a similar peel-off blank with adhesive on, then they could reseal the pouch to prevent odours.

Is there a way to record, in a council area, the number of people in this position who require proper waste disposal (which could even include a dirty disposable nappies service, as they are in the same category)? This could be used to pressurise the authorities to possibly rethink or provide this service.

Mr JM, Stafford I think that you will find that an adhesive seal would prove far too expensive. If, however, you fold the adhesive flange over on itself, you will find that it adheres and will completely seal in the contents.

Your second query is an interesting one.

I think that many of your fellow ostomists would feel unhappy about their name being on a ‘register’ held by their local council.

The question of disposable nappies is also interesting. You may like to contact your local councillor on this issue ■

I was interested to read the article

by Evan Robinson about irrigation in Charter stoma care 28. I have been irrigating for about five years, and began about three years after a colostomy. Initially, I found that very little information was available about irrigation. It required my stoma nurse to make contact with someone in Perthshire – about 100 miles away – and they led me through the process over the phone. I have managed ever since and would not return to the old method! However, I found that irrigating every 48 hours was not sufficient and now irrigate every 24 hours. I accept that it all depends on how much one eats, what kind of food, and so on. If I am to go away early in the morning for the day and miss irrigation, I eat very lightly the night before and also during that day, but this can slow down the system for the ensuing few days and sometimes requires the help of lactulose to regain the norm.

I was also interested in the experience of using water for irrigation when abroad. I would not risk going anywhere doubtful, either for food or water.

This is the first time I have read anything about irrigation. I found it informative and helpful and would welcome more.

Mr PW, Roxburghshire Thank you for your interesting letter.

Irrigation is little known but quite popular with those who irrigate successfully. I hope that it continues to work well for you ■

Please address your correspondence to: The Editor,

Charter stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Alternatively, you can email the Editor at: edit@hayward.co.uk

15

A new era in stoma care

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For free samples please use the

reply card on the outside of this journal, or call us on:

Freephone UK: 0800 220 622 Eire: 1 800 409 502 www.sensura.coloplast.co.uk and SenSura are registered trade marks of Coloplast A/S or related companies. Š 2007-01. All rights reserved Coloplast Ltd, Peterborough PE2 6FX, United Kingdom.

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* British Journal of Nursing, 25 January 2007

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