Charter Journal Stoma Care Issue 31

Issue 31

Charter stoma care

Coping with rectal discharge and pain – what you told us

Healthy diet and other tips to ensure you have an adequate fluid intake Committed to meeting your need for quality products and services

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All rights reserved Coloplast Ltd, Peterborough PE2 6FX, United Kingdom.

Contents

Comment

You make the journal 5

Medical insight What you told us about your experience of rectal discharge

by Penny Fitzgerald

7

Practical care Are you drinking enough of the right kinds of fluids?

by Liz Bonner

9

Lifestyle Sexual issues and other problems for the gay ostomist

by Tim Norton

Coloplast 11 New SenSura two-piece systems – you have the choice Straight talking 12 Pelvic exenteration – what is it and why is it performed?

by Jane Booker 14 Resources Forum 15 Your questions answered

Cover pictures IMAGES.COM/CORBIS; MAKSIM SHMELJOV/SHUTTERSTOCK

CHARTER STOMA CARE ISSUE 31

When my colleague wanted to find out patients’ experiences as part of a piece of research, I suggested she appeal to the readership of this journal. We were overwhelmed in the office by your response. Some of the stories you told were truly amazing. It is thanks to you, then, that Penny Fitzgerald has been able to collate all that information and arrive at some suggestions which may help people who suffer from what sounds to be a condition that is irritating at best and very painful at worst.

The one thing our readers all have in common is that they, or their loved ones, have a stoma, be it a colostomy, ileostomy or urostomy. That, however, is where the common denominator ends. As with people in all walks of life, each and every reader Each and every is unique and while problems may be reader is unique similar, each one will experience those problems in a unique way. How on earth, then, can we provide a journal that suits all the people all of the time? Well, the honest answer is, we can not! What we do aim to do is achieve a balance and try to ensure that over the course of a few journals there has been something for everyone.

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Appealing to individual needs There is no hiding away from the fact that intimate relationships can be daunting when you have a stoma and, in the past, we have covered this topic and, I hope, have given some helpful advice. In this issue, Tim Norton tackles the problems that men in a homosexual relationship may face and again, I hope that those of our readers for whom this is relevant find this article beneficial.

Likewise, Jane Booker’s article on pelvic exenteration will only apply to a small number but I am sure that many of you will find it fascinating to read and will maybe thank your lucky stars that you only have one bag to deal with and not two!

Continued overleaf 3

Unless you live in outer space, you will all need a prescription for your products. Hazel Pixley from the Urostomy Association has summarised some of the issues around prescribing. (Be aware, though, that this is currently in a state of flux, so things may change.)

One thing we all need whether or not we have a stoma is water. So, we can all learn something from Liz Bonner’s article: nurses especially!

Your suggestions Here in the office at Charter stoma care, we continue to be extremely grateful for your letters, many of which include suggestions for articles or stimulate us into thinking of new ideas for the journal. One such suggestion was that an explanation of some of the terms used by healthcare professionals would be helpful, as some of our readers have said that they continue to be perplexed at the language used, even after attending the hospital for many years. We have given this some thought, as we do not want to turn the journal into a medical dictionary!

What we have decided to do is to include a small glossary for a few of the terms used in the articles in each edition. Let us know what you think. (You can find the first of these in our ‘Forum’ page at the back of the journal.)

Finally, I hope you enjoy this issue of Charter stoma care. Please give us any feedback, as we are keen that the journal reflects the needs of its readers – and that means you.

Tina Lightfoot, Editor 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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Charter stoma care Publication of Charter stoma care is made possible through the support of Coloplast Limited.

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 Specialist (Cognitive Behavioural Psychotherapy), St Leonard’s House, Lancaster Hazel Pixley National Secretary, Urostomy Association, Uttoxeter 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. 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 31

Medical insight

What you told us about your experience of rectal discharge In Charter stoma care issue 27, Penny Fitzgerald sought volunteers to respond to a survey on mucus discharge. Here, she discusses the results Many readers will remember my plea for assistance to help with a study about living with rectal discharge or pain following bowel surgery and stoma formation. I have now completed it and wanted to share the results. I would like to thank everybody that wrote to me and took the time to complete the questionnaires and offer personal information so willingly. I particularly wanted to conduct the study because a lot of our patients rang for guidance about the management of rectal problems after bowel surgery. The symptoms appeared to range from pain inside the rectum to mucus discharge. The advice we offered often appeared to have limited success. I wanted to know if people nationally suffered similar problems after surgery and to understand how they coped with them.

The problem arises when a portion of the bowel from the anus is left behind after surgery. This piece of bowel is often called ‘redundant bowel’ or ‘the rectal stump’. Figure 1, overleaf, shows the typical positioning of a stoma, along with the rectal stump/redundant bowel. The length of bowel that is left behind will vary according to the reason for your surgery. However, the longer the length that is left the more likely it is that you will have problems. This is because the lining of the bowel produces mucus to act as a lubricant to assist faeces to pass through, and this mechanism continues after surgery when the portion of bowel is no longer used.

It is the mucus that causes problems, as it no longer has a useful purpose. The longer the length of redundant bowel, the more excess mucus produced. When there is no stool going through the redundant bowel, the mucus builds up. The mucus then either leaks out of the rectum or dries up into a ball, causing these distressing symptoms.

Although the symptoms can be quite distressing to live with, healthcare professionals

CHARTER STOMA CARE ISSUE 31

IMAGES.COM/CORBIS

Why do people suffer rectal pain and or/discharge?

will say, ‘it’s normal’ and ‘don’t worry’. This can be reassuring but frustrating as it does not help the physical problems that you have to live with.

Conducting the study The study was divided into two parts. Part 1 looked at the stoma nurses’ perspective of the problem and the advice they offered to patients.

I wrote to as many stoma nurses as possible in the country. I sent them all a questionnaire to complete. Of those responding, 81% of stoma nurses agreed that patients with a rectal stump experienced either rectal discharge, pain or the two together. They also suggested an assortment of remedies to relieve the symptoms.

Part 2 looked at the patients’ experience of living and managing with rectal pain and discharge symptoms. I wrote to patients from the Countess of Chester Hospital and patients who had answered an advert requesting recruits in

Many people have developed coping strategies – you are not alone

Penny Fitzgerald RGN ENB216 BSc Specialist Nursing Practice Colorectal

Specialist Nurse, Countess of Chester Hospital, Chester

5

Medical insight the journal Charter stoma care. They completed a questionnaire about living with rectal pain and discharge and how it affected their lifestyle.

What were the results?

The results were very helpful. The general comments were of gratitude for taking an interest in the problem. Almost 150 people completed Part 2 questionnaires, with women slightly outnumbering men, 75 to 68. Pain was a significant problem. 80% of the respondents had varying degrees of discomfort, which ranged from chafing and itchy bottom to shooting spasms of intense pain in their rectum. The symptoms were sometimes made worse by passing urine, and made sitting for long periods difficult.

Rectal discharge caused considerable problems. Of those responding, 93.3% had a discharge. ● Mucus was thick and slow to soak in to a pad. ● The discharge caused an embarrassing wet patch. ● It was made worse by exercise. ● It caused anxiety, as it can occur without warning. ● Pads were helpful but they were bulky. ● 51.3% said the discharge was offensive, which caused concern as it affected confidence and self-esteem. ● It was also noted to be worse at night. ● The risk of involuntary offensive discharge means everything has to be planned, ranging from a shopping trip to sex. Spontaneity is impossible.

According to 83% of the respondents, the symptoms caused distress in varying degrees. Some felt unsupported by healthcare professionals. ‘Everyone seems to shrug their shoulders and say, “get on with it”’. Others said that they had good support from their healthcare professionals.

Despite the high levels of distress the symptoms cause, it was reassuring to find so many people had developed their own coping strategies. I have listed these below and hope they may be helpful. Importantly, you know you are not suffering alone and many others are experiencing the same problems. Remember that any new rectal pain or discharge should always be reported to your GP.

Specific advice The mucus production is a normal function of the body, so it will not go away. However, a variety of steps can be taken to control it.

1. If you can sit on the toilet daily and gently bear down as if you were to open your bowels, you may be able to evacuate it naturally. This is the most effective way of management.

Key points ● Rectal pain and discharge can be extremely distressing, especially if you feel unsupported by your healthcare professional. ● There are a variety of coping mechanisms and simple techniques to help you deal with the symptoms and lead your life.

6

Stoma

Anus

Redundant bowel or rectal stump

Figure 1. The stoma, rectal stump and anus 2. A glycerine suppository inserted into the anus may help.

These can be prescribed by your GP. Frequency of use varied between respondents. It may be necessary to use them twice a week or once a month. Persevering and experimenting with the frequency will achieve the best result for you as an individual.

3. Although I am unaware of scientific evidence, several respondents felt certain foods caused an increase in mucus production. It is worth just keeping a record for a while to see if you can find a link.

4. When the mucus leaks out it can make the skin around the anus sore. There were many suggestions of specific creams to help this – if you try the different barrier creams available you will find which one suits you best. You can always ask your local pharmacist for advice.

5. Regular showering and dab drying (rather than rubbing) will remove the moisture, odour and keep the skin clean.

6. Pads are useful but they are bulky. You can make your own pad from kitchen roll, gauze swabs or ladies’ panty-liners. Well fitting traditional underpants for a man or stretchy support knickers for ladies will hold it in place.

7. Organise your life to provide as much freedom as possible. Carry a bag with pads, wet wipes and spare underwear. It is surprising how small you can get it, so that it will fit inside a jacket pocket or handbag. If you drive, keep a spare pair of trousers and pants in the car.

8. Holidays can be very therapeutic. If you have not had the confidence to go away, start now by organising a short trip close to home. If sitting is painful, try going by train so you can get up and move around.

9. If you are fearful of intimate nights get into the habit of showering before bed. You can also keep wet wipes and tissues in the bedside cabinet for emergencies.

10. It is important to remember that a cuddle does not have to result in sex. If you talk to your partner and share your anxieties you can take things at your own pace, with the reassurance of feeling loved and supported ■

CHARTER STOMA CARE ISSUE 31

Practical care

Are you drinking enough of the right kinds of fluids?

Ensuring you have a proper intake of fluids every day allows your body to function at its best. Liz Bonner explains

MAKSIM SHMELJOV/SHUTTERSTOCK

Water is your body’s principal chemical component, comprising, on average, 60% of your bodyweight. Every system in your body depends on water. For example, water flushes toxins out of vital organs, carries nutrients to your cells and provides a moist environment for ear, nose and throat tissues. Lack of water can lead to dehydration, a condition that occurs when you do not have enough water in your body to carry out normal functions.1

How much do you need?

Every day you lose water through your breath, perspiration, urine and bowel movements. For your body to function properly, you must replenish its water supply by consuming drinks and foods that contain water.

The average urine output for adults is one and a half litres a day. You lose close to an additional litre of water a day through breathing, sweating and bowel movements. Food usually accounts for 20% of your total fluid intake, so if you consume two litres of water or other beverages a day (a little over eight cups) along with your normal diet, you will typically replace the lost fluids.2 How much fluid you need to drink is dependent on many factors:1 ● Whether you are male or female ● Your weight – 30 ml per kg bodyweight (one third of a pint per stone) is recommended; usually six to eight cups per day ● Whether you have a small or large frame ● If you are pregnant or breastfeeding – pregnant women need ten cups a day and nursing mothers 12 cups ● How much exercise you take – two or three cups are required per hour of exercise (we are used to seeing marathon runners, football and rugby players taking on extra fluids) ● Fever, which can cause excessive sweating ● Diarrhoea and/or vomiting, which may lead to dehydration and can be very serious in small children and the frail elderly ● Some kidney diseases may require fluid intake to be restricted

CHARTER STOMA CARE ISSUE 31

● Hot weather can cause excess sweating, but in winter overheated rooms can also cause skin to lose moisture ● Any of you thinking of trekking to Peru or climbing Mount Everest should be aware that high altitudes can trigger increased urination and more rapid breathing, which depletes your body’s fluid reserves.

A good intake of fruit and vegetables ensures that your diet provides as much as 20% of your daily water requirements

How do you know if you are drinking enough?

An easy way to ensure that you are drinking enough water is to check the colour of your urine. It should be colourless to slightly yellow.

Urostomists should pay particular attention to their fluid intake.

Dehydration and complications Failing to take in more water than your body uses can lead to dehydration. Even mild dehydration – a loss of fluid as little as equivalent to 1–2% of your bodyweight – can sap your energy and make you tired.

Signs and symptoms of dehydration include: ● Mild to excessive thirst ● Fatigue ● Headache ● Dry mouth ● Little or no urination

Liz Bonner RN DN HV BSc(Hons) MSc

Bedfordshire Continence Service, Bedfordshire Primary Care Trust, Dunstable

7

Practical care

Update on prescriptions

● Muscle weakness ● Dizziness ● Light-headedness.

Mild dehydration rarely results in complications – as long as the fluid is replaced quickly – but more severe cases can be life-threatening, especially in the very young and the elderly.

There are a lot of rumours floating around about what is happening to the supply of stoma appliances and associated services. This article aims to update you on the issues and how you can help to keep the services that you need. There is not just one approach to stoma care, as England, Scotland, Wales and Northern Ireland each have their own authorities dealing with this. The issues that we, as a patient support organisation, are aware of at present mainly concern England and Scotland, so this article will concentrate on these areas.

Health promotion A quick trawl through the internet looking for the benefits of water drinking amazed me. Since writing this article I am trying to drink enough glasses of water every day as it is good for: constipation, haemorrhoids, kidney stones, hyperglycaemia, low blood pressure, bad breath, irritable bowel disease, obesity, boosting the immune system, preventing pressure sores, cognitive impairment, confusion and a healthy complexion. If I was back in the Wild West, I would bottle water and sell it as an elixir to cure all ills. Am I selling it to you?

Food and drink – let’s spend a penny It is easy to ensure you drink enough water. From the tap, ten litres of water cost just one penny.2 Moreover, food provides on average 20% of total water intake. Fruits and vegetables have a higher water content than fatty or starchy foods.3 So, not only will adding fruit and vegetables to your diet help you reach your five portions a day target for these foods, it will also improve your water intake.

When to drink It is generally not a good idea to use thirst alone as a guide for when to drink, as you may already be slightly dehydrated. As you get older, your body is less able to sense dehydration and send your brain signals of thirst. Many older people may reduce their intake if getting to the toilet or incontinence is a problem.1 Try to: ● Drink a glass of water with each meal ● Drink water as well as alcohol when socialising (much less headache the next day) ● Increase your fruit and vegetable intake.

I hope that you will be joining me in a glass or two of water – cheers! ■ References 1. http://www.mayoclinic.com/health/water/NU00283 (last accessed 24/06/08) 2. http://www.water.org.uk/home/water-for-health/older-people/care-homestoolkit/hydration-toolkit-for-care-homes.pdf (last accessed 24/06/08) 3. http://whqlibdoc.who.int/trs/WHO_TRS_916.pdf (last accessed 31/07/08)

The situation in England There has been ongoing consultation with the Department of Health (DH) for several years now, with the latest (and hopefully final) consultation document, called ‘Proposed new arrangements under Part IX of the Drug Tariff for the provision of stoma and urology appliances and related services in Primary Care,’ published on 9 June 2008. The consultation, including several annexes and an impact assessment, can be found at the DH website (http://www.dh.gov.uk/ en/Consultations/Liveconsultations/DH_085247).

The consultation is looking at the cost of stoma and incontinence products and also the way in which they are supplied to the customer and the cost of this. Some of its aims are to: ● Maintain and, where applicable, improve the current quality of care to patients and provide a consistent level of care ● Ensure equal payment to dispensing appliance contractors and pharmacy contractors for equivalent services ● Secure value for money for the NHS ● Maintain local choice in the provision of services.

The closing date for responses to the consultation is 9 September 2008. The next ste is for the patient associations, manufacturers and distributors of appliances, along with stoma care nurses and other interested parties, to respond to the consultation. Individuals are also encouraged to respond, so do have a look at it. Your relevant patient association will be happy to answer any questions you may have, as we will each be putting in a response. You may also like to ensure that your local MP is aware of the consultation, and raise any particular concerns with him/her. After the closing date, there will be at least three months before a summary of responses is printed, followed by the DH’s plans for the future.

The situation in Scotland In Scotland, the issues are very different, as the service was changed over two years ago. The changes included: ● All nurses are now employed by the Scottish Health Executive ● Dispensing appliance contractors and pharmacy contractors offering the same services, including delivery of products and cutting of flanges, are paid the same for these services.

Unfortunately, these changes meant that the cost for the service rose quite significantly. In order to reduce this cost, there are now plans to restrict new patients to a choice of three products while in hospital.

This will mean that the service in Scotland will be significantly different from that in England. Again, your relevant patient association would be happy to hear from you if you have any issues to report ■ Hazel Pixley, National Secretary, Urostomy Association

Key points ● Many of the body’s key functions rely on water.

Charter Healthcare has constructed a response to the DH consultation including all previous feedback you have supplied. Therefore, there is no need to restate your comments and support to Charter Healthcare.

● Dehydration has negative effects on the body.

Patient associations’ contact details

● You should not wait until you are thirsty to drink, as thirst can be a sign of dehydration.

■ Urostomy Association email: secretary.ua@ classmail.co.uk Tel: 01889 563191.

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■ IA email: info@iasupport.org Tel: 0800 0184 724.

■ Colostomy Association email: cass@colostomy association.org.uk Tel: 0118 939 1537.

CHARTER STOMA CARE ISSUE 31

Lifestyle

ALVARO PANTOJA/SHUTTERSTOCK

Within a long-term, stable homosexual relationship, a high level of support may be possible and easier to achieve

Sexual issues and other problems for the gay ostomist TIm Norton explores the problems that ostomy can have for gay men and finds that they are not all necessarily different from those that heterosexuals experience Stoma surgery does not necessarily affect your sex drive. The aim of this article is to explore whether ongoing sexual activity raises any special issues for gay male ostomists. Gay men often address issues of sexuality – and indeed relationships and the entirety of ‘why we are here’ – in a way that straight, or heterosexual, men may never consider as they see little need to do so. An adolescent young man, realising his sexual impulses are different from those of the majority of his peers, may develop a much clearer understanding of who he is and his position in his social group. Sadly, this may include a period of time being ostracised or subjected to ridicule.

The gay community Discovering the gay community can be liberating and the community is, in fact, extremely diverse.

Many gay men may now have their first contact with it via the internet. Some will choose to have

CHARTER STOMA CARE ISSUE 31

little or no contact with the bars, clubs and other venues that are often referred to as the gay ‘scene’. Others, for reasons of geography or finance, for example, may be unable to access them. Many gay men form social networks entirely separate from the ‘scene’: the number of heterosexual people in these may often exceed the number of gay people. For some gay men, however, the gay scene can be extremely important as a place to meet friends and potential sexual partners, in an environment that is relatively free of the risk of being exposed to homophobic responses from others. While the scene, too, can be very diverse, especially in large cities, there are sections of it within which great emphasis is placed on body image, which can create some difficulties for gay men with stomas.

I spoke at some length with a gay man who had a permanent stoma formed several years previously, to understand the issues that may be different for some sections of the gay population.

Tim Norton BSc(Hons) RMN ENB 650 Dip Human Sexuality Clinical

Nurse Specialist, St Leonard’s House, Lancaster

9

Lifestyle

Useful contacts ■ The Pink Paper

He told me that many publications for gay men celebrate the male figure, emphasis is laid on men caring for themselves and presenting an image that will attract. The sexual behaviour of some gay men may not be understood or condoned by a proportion of straight people: for some men many partners are likely to be the norm, to the extent, on occasions, of not knowing the man’s name before he leaves after sexual act. Some may wish for serial brief relationships, while there are also many who seek longterm stable relationships, with or without a commitment to sexual monogamy. Some gay men find that their straight friends are envious of what may be regarded as the sexual freedoms and variety of choices they experience.

Body image and sex Among gay men for whom body image becomes very important, health and hygiene are likely to be emphasised.

As for all stoma patients, the effect of disfiguring surgery can be devastating. The removal of bowel tissue and formation of a stoma is likened to the radical body changes in mastectomy, or breast removal. Initially there is a tremendous sense of relief at simply being alive; slowly, the realisation develops that the familiar body no longer operates the same and looks very different For gay men who are accustomed to having multiple sexual partners, a stoma may have an overwhelming effect on their capacity to express themselves sexually. For some, the thought of sex may be unimaginable. Not only may they be repulsed and disgusted by the bag and associated procedures themselves, but some partners with whom they spend a matter of minutes or hours might not be understanding and empathetic. Some gay men are accustomed to talking about their sexual interests and activities in very frank ways, with an ability to describe their stoma to potential new partners and how to accommodate it within the sexual encounter. Of course, these issues may be equally true for straight people who choose to have multiple partners. Within an existing longterm homosexual relationship, achieving a high level of support may be possible and easier to achieve. Many gay couples stay together for many years, sometimes with the official recognition afforded by civil partnerships.

I discovered that some gay men are very sexually oriented and that looks can be very important. Sex may be expected soon after meeting, with little time to establish a

Key points ● Some gay men find sex a very important part of their identity and having a stoma may have an impact on this. ● Support and companionship can be found in long-term gay relationships. ● Many issues are the same for all ostomists, whether they are gay or straight.

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The Pink Paper is a free national newspaper aimed at gay men, lesbians and bisexuals. Its website features news, entertainment and sport, as well as job listings and useful sections on health. It also hosts the Pink Paper Wiki, a user-created encyclopaedia of topics that may be of interest to gay people. http://www.pinkpaper.com ■ Sexuality for people with a stoma

Information to help you understand more about the effect your stoma may have on your sexuality. http://www.cancercouncil.com.au /editorial.asp?pageid=1095%20%20%20 ■ GaysCan

A national, confidential helpline for gay men living with cancer, their partners and friends. http://www.cancerbackup.org.uk/ Resourcessupport/Organisations/Searchall/886 ■ Gay ostomates

A website for ostomists everywhere from The Gay Ostomates Organisation, with news, help, information, services and advice for anyone with an ileostomy, colostomy or urostomy. www.gayostomates.org relationship first. As oral sex can play an important part in a gay liaison, close proximity of the stoma bag may be considered offensive and unpleasant and the bag is likely to prove difficult to hide or disguise. Anal sex, practised by some homosexual men, will be out of the question if the anus is stitched. If surgery is planned, then this can be discussed with the surgeon beforehand.

Rather than provoking disgust, the stoma site may be seen as presenting new possibilities for exploring bodily sensations; a reminder is necessary that the stoma site should not be used for sex or to insert any object due to the risk of infection. However, while some of this advice may be more of an issue within some sections of the gay community, there will be many straight people for whom it is equally pertinent.

No easy answers It was put to me that men in some sections of the gay community are more body conscious than many of their heterosexual peers. For a gay man with a stoma, this will bring additional stresses and pressures. There are no easy answers; anxiety and low mood may result. Avoidance of people and previously enjoyed situations may seem the only option, yet with openness and honesty people can be remarkably understanding and caring.

The internet may provide a route through which some gay men can explain about their stoma before meeting sexual partners, allowing them to filter out those men who are deterred by it. It is possible that some gay men, having come to terms with having a minority sexuality, may have better skills for adapting to their stoma and its social and sexual consequences than some of their heterosexual peers. However, making a generalised assumption that gay men experience having a stoma in very different ways to straight men is not safe, and there may well be more common ground than there is difference ■

CHARTER STOMA CARE ISSUE 31

New SenSura twopiece systems – you have the choice Since the availability of SenSura, many people with a stoma have benefited from using a completely new generation of ostomy bags (see Figure 1).

Coloplast has since been working with stoma care professionals and people with a stoma to develop SenSura two-piece systems Figure 1. SenSura one-piece ostomy bags

SenSura Click

SenSura Flex

Coloplast has introduced the SenSura Click two-piece system (see Figure 2), which combines the revolutionary SenSura adhesive and the well known secure click coupling. This has been available on prescription since June 2008.

Thanks to a unique double-layer adhesive, SenSura is a skinfriendly product and gives protection against stomal output, while offering security and reassurance with a safety ring coupling that is easy to use. When opening and closing, the coupling will give an audible click, indicating the bag is securely fastened to the baseplate, and a click when you remove it again ■

SenSura Flex (see Figure 3) has been available on prescription since July 2008, and provides the combination of the revolutionary SenSura double-layer adhesive on the baseplate, which offers protection to the skin as well as being skin-friendly, together with a very flexible adhesive coupling.

The coupling has been designed for easy attachment of the baseplate to the bag, and, with the floating flange, less pressure is required when the bag is applied to the baseplate.The strong adhesive coupling keeps the bag in place while allowing the user to carry on with their normal way of life, as the coupling is very slim and flexible ■

Figure 2.

SenSura Click

Figure 3.

SenSura Flex

Extra features on SenSura Click and SenSura Flex ● The SenSura dual wave filter optimises all essential filter functions, such as air flow, deodorisation, leakage protection and the active life of the filter. ● The improved hygienic Hide-away outlet on the drainable bag provides a fold-up option to reduce the bag to half its size for more discreet use. Split Soft Cover drainable bags have a clear film underneath the soft cover to help apply the bag. ● The bags feature strong, soft cover material, clearly visible removal tabs and a very simple, easy-to-see cutting guide for more comfort and convenient handling.

CHARTER STOMA CARE ISSUE 31

● SenSura Click and SenSura Flex are available in closed and drainable bags, with a wide choice of bag sizes and baseplates, giving an extensive choice to ostomists.

■ To order complimentary samples, visit www.charterhealthcare.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.

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Straight talking

Pelvic exenteration – what is it and why is it performed?

Jane Booker looks at pelvic exenteration, a surgical procedure to create two stomas, which may seem extreme but can provide definite benefits

Jane Booker BSc(Hons) PGDip Macmillan Urology Clinical Nurse Specialist, Christie Hospital NHS Foundation Trust, Manchester

Pelvic exenteration is also known as total pelvic clearance, which is a term that may not be familiar to many. It is not a commonly performed operation but refers to the surgical procedure to remove all of the organs of the pelvis (know as the pelvic viscera). In a man, this would involve removal of the rectum, the bladder, prostate gland and seminal vesicles (structures behind the bladder and joining the prostate which provide fluid for a man’s ejaculate). In a woman undergoing this type of surgery, the rectum and bladder are removed as well as the uterus (in women who have not had a previous hysterectomy) and the ovaries and fallopian tubes. If a woman is premenopausal, the ovaries may be left in place to provide normal hormone function.

The removal of the bladder requires the patient to have a urinary stoma (or urostomy).

Removal of the rectum means that the patient will have a colostomy. Occasionally, in selected cases, it may also be necessary to remove part of the sacrum (lower end of the spine) as well as the pelvic viscera. Figure 1 shows the organs that would be removed for male and female patients.

Why is it performed?

This type of operation was first reported in the 1940s for patients who had been diagnosed with Fallopian tube

Ovary Uterus Sigmoid colon

Bladder Sigmoid colon Bladder Penis Urethra

Urethra

Anus

Cervix Rectum

Rectum Anus Scrotum

Prostate gland Testis

Figure 1. The shaded areas indicate the organs that would be removed in female and male pelvic exenteration

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advanced or recurrent (disease that has returned after initial treatment) cancer within the pelvis.1 Most commonly, the type of cancer for which the operation is offered is colorectal in nature, although it is also performed in patients with either gynaecological or urological cancers.

Before a patient undergoes this type of surgery, it is necessary to carry out investigations to make sure that it is the appropriate type of procedure to be offered. Most patients would be ‘staged’ (that is, where the full extent of the illness is determined). It would be usual practice to examine the patient physically in the outpatient setting and the patient may also be asked to go for X-rays of the chest and a scan of the abdomen. These investigations would help the team of specialists looking after the patient to see if there has been any spread of the cancer outside of the pelvic area. If the cancer has spread outside the pelvic area, it may not be in the patient’s interest to go ahead with such an operation of this size. However, a lesser operation to divert the urinary system and bowels may be offered, which would still mean that the patient would have two stomas.

In patients who have no signs of spread of cancer outside of the pelvis, total pelvic clearance can be offered as a cure for the cancer, although in other cases the operation may be suggested as a way of easing distressing symptoms rather than as a cure for cancer.

Diverting the urine into a urostomy and the faeces into a colostomy provides the patient a means of keeping the urinary and bowel systems working so that they do not need to spend long stays in hospital or require emergency surgery.

Also, by offering local control of the disease with an operation there is evidence that patients may survive longer than those who do not undergo this type of surgery.2

The operation itself Such surgery may initially appear a huge undertaking, but as a means of offering ongoing health benefits in terms of urinary and bowel

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Straight talking function, as well as stopping cancer from growing, it can be offered as an acceptable choice. Local control of disease can mean an improvement in survival and unchecked cancer of this nature would eventually cause significant problems with bowel and urinary continence and cause pain within the pelvis.

During the course of the operation, an incision is made into the abdomen, usually running from just above the umbilicus (belly button) to the top of the pubic bone. The pelvic organs (as described above) are released from their blood and connective tissue supply. The tubes from the kidneys (ureters) are disconnected from the bladder and are joined to one end of a segment of bowel that is isolated from the rest of the intestine. This piece of bowel is then brought to the surface of the skin as a urostomy (or urinary diversion). Another piece of bowel above the lower section in the rectum is then made into a colostomy. The pelvic organs that are affected by the cancer are removed and the surgeons sew the patient’s abdomen back together in layers, closing the skin at the end with clips or stitches.

There are complications that can occur after any type of major surgery, which the healthcare team need to take precautions to prevent. Patients are warned that infections can occur, such as a chest and wound infection. In order to avoid these complications, there is careful use of sterile procedures and antibiotics if needed.

More serious complications can also occur, such as blood clots in the legs (deep venous thrombosis) or clots that travel to the lungs (pulmonary embolism). In order to prevent blood clots occurring, the blood is usually thinned with daily injections of an anticoagulant (blood-thinning medication) and pressure stockings are used to encourage the circulation of blood from the legs back to the heart.

This is important when patients are unable to move around without assistance.

After the operation There have been great advances since the 1940s in the way that surgery is carried out, so patients benefit from experiencing a much less painful postoperative period and a much shorter hospital stay. This is due to improvements in anaesthetic and surgical techniques as well as focusing the surgery in specialist centres. Most people would be in hospital between two and three weeks. Recovery time varies – it may take between six to twelve weeks to recover initially, but up to a year to get back to full fitness.

Quality of life can be significantly affected by an operation of this magnitude. Studies have shown an increase in cases of depression when patients have had surgical treatment of such complex cancers. It is also well known that over 50% of patients with a cancer diagnosis will have problems with adjustment to their situation and have a far higher incidence of depression than the general population.3 It is important that the patient’s issues and concerns are made known, as this can be a vital step in the process of coping with the situation and avoiding the depression that may hinder recovery.

Some aspects of physical functioning are unavoidably affected by the surgery, primarily sexual function and physical relationships. When a person’s image of their

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body is changed by surgery, it can have the effect of reducing confidence and have a negative impact on the way they view themselves. Again, it is key to successful recovery that these aspects of surgery are discussed not only by the healthcare team and the patient but, just as importantly, by the patient and their significant others.

After surgery of this nature, patients are followed up from a medical point of view for two main reasons. First, as the operation was to remove a cancer, investigations, such as body scans, will be performed to check that there is no cancer left or that no cancer has recurred. There is also a need to monitor kidney function after a patient has had a urostomy formed. Annual assessment of kidney function using radioisotopes (see page 15) and blood tests can help the multidisciplinary team to ensure that a patient does not come to harm through deteriorating kidney function.4 However, it is important to stress that complications of this nature are rare following urostomy surgery.

Many patients feel isolated in the community and the reassurance of a stoma nurse to help with acclimatising to the situation of having two stomas can be very helpful.

Initially, patients will be referred to the district nursing service, who can provide a link from the hospital to the home environment. The clinical nurse specialist working within the specialist team may also be a source of support and a link with the ward and the outpatient setting. The existence of support groups such as the Urostomy Association and the Colostomy Association are very useful resources for a patient learning how to get back to a normal lifestyle and activities.

Despite the challenges to a patient facing pelvic exenteration, there are clear benefits to undergoing the operation in terms of life expectancy and quality of life. It is essential that patients are fully informed about the nature of the operation and that they are adequately prepared. It is also important that the patient is treated in a specialist environment where their complex needs are understood and addressed ■ References 1. Vermass M, Ferenschild FT, Verhof C et al. Total pelvic exenteration for primary locally advanced and locally recurrent rectal cancer. Eur J Surg Oncol 2007; 33: 452–458.

2. Rajput A, Ballard Dunn K. Surgical management of rectal cancer. Semin Oncol 2007: 34: 241–249.

3. Strong V, Sharpe M, Cull A et al. Can oncology nurses treat depression? A pilot project. J Adv Nurs 2004; 46: 542–548.

4. Samuel J, Bhatt R, Montague R, Clarke NW, Ramani VAC. The natural history of postoperarive renal function in patients undergoing ileal conduit diversion for cancer measured using serial isotopic glomerular filtration rate and 99m technetium-mercaptoacetyltriglycine renography. J Urol 2006; 176: 2518–2522.

Key points ● Pelvic exenteration is a little known operation to remove all the organs of the pelvis. ● Surgery will leave the patient with two stomas – a urostomy and a colostomy. ● It is a major operation and can lead to feelings of depression and isolation, but it can also increase a patient’s life expectancy and quality of life.

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Resources

Ostomy Lifestyle

Colostomy Assocation

Addenbrooke’s Hospital

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A new national charity offering information and support to anyone affected by stoma surgery was launched in May. Ostomy Lifestyle (OL) seeks to empower people, enabling them to make informed choices, and to communicate frankly about all aspects of stoma surgery. OL provides a confidential Careline service, and demonstrates why it is important to discuss and understand bowel and bladder surgery and what it really means to have a stoma. Often this is seen as a negative subject with great stigma, which OL is tackling head on, inspiring anyone affected by bowel and bladder surgery to lead a full and active life.

Founder and Chief Executive Neil Basil said: ‘We help people to see the stoma for what it really is – a lifesaving operation, not a hindrance to leading a full and active life. We also want to encourage people with a stoma to adopt a positive, proactive attitude and to get on with their life’.

The free Careline is operated by trained volunteers who have all had stoma surgery and give reliable, relevant information based on knowledge gained through training and research, rather than simply drawing on personal experiences. OL also supplies information and training for nurses, carers, and anyone else with an interest, and is working to raise awareness of ostomy issues among the medical profession and the general public. Careline Supervisor Helen Farrell said, ’By providing a centralised resource we ensure that everyone who has stoma surgery gets the appropriate support, right from the start’.

Ostomy Lifestyle 4 The Chambers, East Street, Reading RG1 4JF Tel: 0118 324 0069.

Careline: 0800 731 4264 or 0118 324 0089. email: admin@ostomylifestyle.org website: www.ostomylifestyle.org

Living with a stoma presents many additional considerations to your day-to-day life. As well as managing your diet and lifestyle, you have to ensure you have enough products with you at all times to cover ordinary use, as well as any emergencies that may arise.

Travelling can be especially daunting, as you will have to prepare yourself for a long period of time away from home, requiring a large supply of stoma products, as well as perhaps going to unfamiliar places or adjusting your diet.

You may need extra baggage space to carry your products and will want peace of mind that

you will not have problems explaining your needs to customs officials en route.

The Colostomy Assocation provides travel advice and travel certificates that you can carry with you when travelling, for reassurance that your needs will be understood. The certificates are available in English, as well as Arabic, Croatian, French, German, Greek, Hindi, Italian, Mandarin Chinese, Polish, Portuguese, Russian, Spanish, Thai, Turkish and Vietnamese.

Tel: 0118 939 1537. email: cass@colostomyassociation.org.uk website: www.colostomyassociation.org.uk

Living with a stoma is not always easy. Even with the support of family and friends, it is possible to feel overwhelmed and isolated. It can, therefore, be very helpful to meet other ostomists and people who work in the field of stoma care. One way to do this is to attend open days, where you can meet fellow ostomists, specialist nurses, representatives of stoma care companies and volunteers from relevant healthcare charities. You can meet people, discuss new products and options and maybe even join a new support group.

On Saturday, 11 October, Addenbrooke’s Hospital, Cambridge, is hosting a Stoma Care Open Day. It takes place from 11 am to 3 pm in the Hexagon at the Frank Lee centre in Addenbrooke’s and all four of the hospital’s clinical nurse specialists in stoma care will be attending.

All ostomists are welcome, and will find something of use to them. If Addenbrooke’s is not convenient for you, look out for open days in your own area.

For information about Addenbrooke’s open day, contact Anna Brewer on 01223 216505.

CHARTER STOMA CARE ISSUE 31

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

Having returned from another spell in hospital, I write to you with a complaint about the lack of facilities for stoma patients on the ward. A visit to the toilet is something of a challenge. Yet, neither at Charing Cross Hospital, where I underwent my chemotherapy, nor at Kingston Hospital, where my operation was performed, have I found even a table on which to lay out my equipment. I normally finish up with my shield and bag laid out on a rubbish bin! Different from last year, when my wife and I sailed away on a world cruise for 109 days. Despite some misgivings, I had no problems (although changing a bag on a swaying boat in Rio de Janeiro harbour was quite a challenge). When advised by the tour staff that toilet facilities on some trips would not be satisfactory, I stayed on board and enjoyed the hospitality there instead. I would be interested to hear if others have experienced the same problem with hospital toilets, and if they have been able to accomplish anything in the way of improvement.

Mr MH, Surrey I think that your comments about the facilities in hospital bathrooms (or lack of them) would be echoed by patients and stoma care nurses alike, the length and breadth of the country.

You sound like a resourceful chap, however. I am glad that your trip went well and I thank you for your inspiring letter ■ I am contacting you regarding your response to a letter published in the Forum (issue 27) from a Ms JM concerning a rash that her father-in law

CHARTER STOMA CARE ISSUE 31

is experiencing near his stoma. I had an ileostomy last year and also experienced problems with a rash. I received excellent support from the stoma nurses at the QE hospital in Birmingham and eventually they tried a topical steroid in the form of Haelan® Tape (Typharm, UK).

I do not know if this product may be suitable in the circumstances described, but would it be possible for you to forward this information?

Mr TG, via email Thank you for your helpful letter. As a topical steroid, Haelan® Tape needs to be prescribed and should be used with caution. While it is certainly beneficial in the right circumstances the best advice is to have an expert look at the problem, as you did ■ After an emergency ileostomy eight years ago, I acquired both a stoma and a mucus fistula. The lower intestine regularly blocked with mucus and had to be cleared painfully by inserting a glycerine suppository into the fistula.

About two years ago, your magazine printed an article about fistulas and I wrote to the author, a stoma nurse. She advised a daily glass of cranberry juice, which seemed to clear the system naturally. Gradually, my whole digestive system dramatically improved. Instead of swallowing nine Celevac® (Shire, UK) and six loperamide daily, I now do not take any, and the stoma output is much more normal. Cranberry juice has worked a miracle for me. Please pass the message on – it could transform other lives!

Mrs EJ, Somerset Thank you for your helpful letter. It is always good to get feedback and tips to pass on to others. Please note that cranberry juice should be avoided if you are taking warfarin ■

Glossary In a new feature, Tina Lightfoot defines some of the terms used throughout the journal.

Clinical Nurse Specialist: Even the Royal College of Nursing has some difficulty in defining a CNS. In general, a CNS is a registered nurse who has undertaken extra training in a specialist field. They will usually have an undergraduate degree and many will also have a masters level degree. Their role varies. Working closely with the medical team, most will be involved with you throughout your care pathway and will be your key point of contact when dealing with the specialist team. A CNS will have, generally, been around for some time and therefore have a good idea of what they are talking about. And if there is something they do not know they will certainly know where to find out.

Mucus: Mucus is a slippery secretion of the lining of the body’s mucous membranes. It contains antiseptic enzymes and immunoglobulins (proteins). Its main roles are those of protection and lubrication.

Radioisotopes: This is a tricky one! An isotope is all to do with elements, atomic numbers, neutrons and protons (I was hopeless at physics!) Radioisotopes are atoms with more neutrons than protons in the nucleus, which makes them unstable. They are radioactive and are used in medicine for diagnosis or therapy. The department in the hospital that uses radioisotopes is called the Nuclear Medicine Department.

Viscera: These are the internal organs, such as the heart, lungs, liver, pancreas, and intestines. It is the plural of the Latin word ‘viscus’, which means ‘an organ of the body’.

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

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