Charter Journal Stoma Care Issue 32

Issue 32

Charter stoma care

Making the right decision on stoma reversal

Claiming the benefits that you are entitled to Committed to meeting your need for quality products and services

You live. We deliver.

At Charter Healthcare, we offer an efficient, discreet and confidential delivery service for people requiring prescription continence care and stoma care products.

All products and brands can be supplied and delivered free to your home once registration is complete.

In addition, our award-winning customer service team will ensure that you always receive the best service and support. So contact us today, and you could be more free to get on with your life.

For more information or to register with Charter, call FREEPHONE 0800 132 787 and quote ADCHARTMOV or visit our website at www.charter-healthcare.co.uk

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Contents

Comment

The disability debate 5

Medical insight Ostomy reversal – a step forward?

by Allison Sharpe

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Lifestyle Claiming your disability benefits

by Terry Gallagher Practical care

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Choosing the right appliance

by Julia Williams

Coloplast 11 Charter Healthcare home delivery Straight talking 12 Need some help with your stoma?

You are not the only one

by Jude Cottam 14 Resources Forum 15 Your questions answered

Cover pictures IMAGEZOO/IMAGES.COM; ALEXANDER WALTER

CHARTER STOMA CARE ISSUE 32

Recently, I have been reflecting on the Paralympics that took place in Beijing in the summer. Unfortunately, I was unable to watch these live and relied on highlights to map our progress. I believe that, once again, our cyclists and swimmers were superb. These athletes are all competing with a disability, the categories of which seem endless. On watching them compete, however, they appear far from disabled. To see Eleanor Simmonds, as a 13-year-old, win her two gold medals was fantastic. I also remember listening to an equestrian competitor who said that the only thing preventing him from competing with ablebodied riders was funding!

How do we define disability?

Disability has always been a sensitive subject and the question of disability is often asked in relation to ostomists. Terry Gallagher writes a thought-provoking article. He argues that, yes, as the law stands, you are disabled and as such can claim certain Disability has benefits to make life easier. The problems he always been a cites, such as bags sensitive subject leaking and increased laundry costs, are a difficulty for some ostomists, it is true. Jude Cottam’s article discusses the types of challenges encountered by ostomists. Jude has spent many years studying and researching this subject and has worked closely with surgeons to improve how stomas are created and thus reduce the potential for complications.

For many ostomists, however, their life continues the same as ever, albeit with some minor adjustments. For those who suffered a disabling illness prior to surgery, life with a stoma has given them a freedom not experienced for many years. For some, this means feeling well and able-bodied for the first time since their childhood. Indeed, many cannot understand why they now qualify for free prescriptions when before they had to pay for essential medication.

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The appliance manufacturers themselves spend time, money and expertise in an attempt to ensure that appliances are discreet and secure, so that ostomists are not disadvantaged.

As a stoma care nurse, my focus has always been on supporting and empowering patients back to a full and active life, rather than on disability and the rights of the disabled. Most stoma nurses would, however, advise patients on the use of disabled toilets, as they are so much more convenient and generally much cleaner, and we would of course advise you of your right to free prescriptions if you are not already exempt.

This is a thorny issue for many. Disability can be a state of mind but it can also be a status for which you have certain rights within law.

I commend Terry’s article in this issue of Charter for you to read. It is thought-provoking and certainly puts forward a strong case for claiming disability entitlements. I would very much welcome your feedback on this topic, as how you view yourselves is far more enlightening than what I or any other professional thinks.

On a lighter note, what sporting successes have you achieved since having a stoma? I know that many of you have run marathons, climbed mountains and other such energetic activities, often to raise money for important charities. What about me? Well, I am waiting for someone to set up the WiiFitTM Olympic Games before I get into any serious training!

I hope you enjoy this issue of Charter stoma care.

Your feedback and comments are always welcomed.

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

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 Ltd, 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 Ltd. All rights reserved.

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

CHARTER STOMA CARE ISSUE 32

Medical insight

Ostomy reversal – a step forward?

Around one-third of people who have stomas formed will eventually have the

It is estimated that there are more than 100,000 ostomists in the UK. For approximately 65% of patients who have a stoma formed, it will be permanent; however, the number of permanent ostomies is gradually declining, due to improved surgical techniques. Over the last ten years, the number of patients requiring a permanent stoma after resection of a rectal cancer has reduced and the now established technique of ileoanal pouch construction for ulcerative colitis has reduced the requirement for permanent ileostomies. To avoid serious complications after technically challenging surgery, many such operations are accompanied by the formation of a temporary stoma. This could be a colostomy or an ileostomy. A variety of conditions require the formation of a stoma, including colorectal cancer, Crohn’s disease, ulcerative colitis, diverticular disease, faecal incontinence, hereditary bowel disorders and bowel injury.

Most people undergo stoma formation in a planned operation, but some require emergency surgery that results in stoma formation. A stoma may be necessary in an emergency operation, as these are often related to serious infections.

Patients requiring emergency surgery are often unwell and the risks of joining up the bowel in such conditions may be substantial. Those who undergo planned stoma formation have had the opportunity to find out about living life with a stoma. Unfortunately, most of those who undergo emergency surgery resulting in stoma formation do not have the time to discuss all aspects of stoma care and it may be unexpected.

Temporary or permanent?

A colostomy or ileostomy may be either temporary or permanent and, where possible, the surgeon should talk to the patient before stoma formation about the possibility of reversing the procedure and the best time to carry out the reversal. Before the stoma can be closed, the surgeon must be satisfied that the wounds inside and outside are fully healed and that the bowel is fit to resume normal activity.

Reversing the stoma involves another operation which, depending on the type of stoma, may be quite major, so patients need to

CHARTER STOMA CARE ISSUE 32

IMAGEZOO/IMAGES.COM

operation reversed. Allison Sharpe talks you through the process

have a full explanation before they can make an informed choice. Many patients are elderly and frail and, therefore, they often decide not to undergo further major surgery and continue living with their stoma. It is thought that between one-third and one-half of all patients undergoing stoma formation for diverticular disease never have the colostomy reversed.

Deciding when to reverse a stoma depends on a variety of factors, including patient choice, chemotherapy, results of X-rays and the general health of the patient. Loop ileostomies formed electively as part of a procedure such as rectal resection for cancer or inflammatory bowel disease are usually reversed after a period of about three months. Often, the surgical team will require an X-ray of the join-up (pouchogram or proctogram) to ensure that it has healed prior to the procedure. Evidence of a leak (a defect in the join-up of the bowel) may cause delay and a repeat X-ray after a few months could be needed.

If a patient is undergoing a course of chemotherapy after surgery, the team may decide to delay reversal until chemotherapy is complete.

This is because chemotherapy impairs healing and, if infection occurs after the operation, chemotherapy may have to be discontinued temporarily or abandoned entirely. This is not an indication against surgery, however, and many

For some people, stoma reversal is an easy decision to make, but for others it is not

Allison Sharpe RGN MA(Ed) BSc ENB 216

Colorectal Nurse Specialist, Royal Victoria Infirmary, Newcastle-upon-Tyne

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Medical insight patients do decide to have their stomas reversed during a course of chemotherapy. It is sensible to delay surgery for reversal, which is usually non-essential, until the patient has regained full health. This is particularly important after emergency surgery, or when there have been complications after a planned operation. Delaying surgery for months or a year does not prevent subsequent reversal taking place.

The reversal process An end colostomy or ileostomy is often permanent, but for a few people it can be temporary. Reversal will require a laparotomy (reopening of an abdominal incision) or a fairly extensive laparoscopic (keyhole) procedure. This is a major operation, and can be challenging because of adhesions from the previous surgery. If it is very difficult, it may even be necessary to form a temporary loop ileostomy for a few months to allow healing. The subsequent reversal of the loop stoma is rather easier to perform.

A loop ostomy is often temporary. It provides a ‘safety valve’ above an anastomosis (reconnection of two pieces of the bowel wall), or diverts bowel contents away from diseased segments further down the bowel. The two ends of the bowel are still partially attached and the surgeon knows exactly where they are. The biggest problem with reversing an end stoma is finding the other end inside the abdomen because of adhesions. Loop stoma closure usually involves a relatively small incision around the stoma itself and is normally straightforward. Occasionally it is necessary to perform a laparotomy, reopening an abdominal wound, again usually because of adhesions.

People considering stoma reversal should speak to the healthcare staff about risks and potential complications.

The main problems after this kind of surgery include wound infection, chest infection, peritonitis and bowel obstruction. If you develop an infection, it will be treated with antibiotics, but peritonitis due to a leak in the suture line may require further surgery, and possibly another stoma, to treat it. This is a serious, though uncommon, complication. Bowel obstruction is normally caused by adhesions and can be treated by the insertion of a nasogastric tube and a drip in the arm to provide fluid and allow the bowel to be rested. Only very rarely is another operation required to relieve the obstruction. Older people and people with other medical problems are at greater risk when they have an anaesthetic and major surgery.

Most people are admitted the day before, or on the day of, surgery. Some patients require bowel preparation,

Key points ● Around 35% of stomas are suitable for reversal. ● Bowel function is unlikely to return fully to ‘normal’ after a stoma reversal. ● Some patients, particularly the elderly, prefer to avoid further surgery and elect not have their stomas reversed.

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which is determined by what type of stoma you have and local hospital protocols. If you are taking oral laxatives, it is advisable to wear a drainable pouch, as the stool can be very loose and watery. The length of hospital stay varies from person to person and also on the type of stoma.

People who are having reversal of a loop stoma are often only in hospital for a few days, but those undergoing reversal of an end stoma can expect to stay longer.

Bowel function after the operation After resection, bowel function is rarely as good as before the operation, especially if the resection is extensive, or involves the rectum. Often, there is less bowel length to undertake all the usual functions, or the new join in the bowel does not expand and react in the same way as unscarred tissue, and the rectum’s storage function can be lost. What is ‘normal’ after resection is very variable.

Your bowels will start to work again approximately two to five days after your surgery. At first, your motions can be loose, unpredictable and urgent. It can take several months to develop a predictable pattern. Your bowel pattern is unlikely to be the same as it was before your operation, so you will need to adjust your idea of what is normal. You may encounter problems such as diarrhoea, constipation, increased stool frequency or urgency, and excessive wind.

Immediately after surgery, you might find that certain foods cause the bowel to be a little erratic. What people eat can affect them in different ways – attempt to eat a normal, well-balanced diet including fruit, vegetables, cereals and fibre. Often, regular small meals are better than eating large amounts at one sitting. If diet alone does not improve your bowel pattern, medication may be needed.

If you suffer from constipation, a mild laxative can be prescribed to try and soften the stool and aid the passage of the motion. For diarrhoea, your doctor may prescribe medication to bulk up the stool or slow down the movement of your bowel and produce a stool consistency that is more manageable. If you suffer from a lot of wind, try one of the common wind remedies, such as charcoal or peppermint to see if it helps. Loose, frequent bowel movements can cause problems with soreness around the back passage, so pay attention to personal hygiene, keeping the area clean and dry. Some patients find moist toilet paper useful if their stool is very soft and they need to use a lot of dry paper. Applying barrier cream onto the skin after cleaning the area is also helpful in protecting it.

It takes time for the bowel that remains to compensate for the removed part, and it may never completely do so.

Talk to healthcare staff if you are having problems with your bowels, and remember that bowel function following reversal of a stoma is very individual, so it is difficult for the doctors and nurses to be prescriptive about the management of your bowel pattern.

Having surgery to reverse a stoma is a decision that is made by both the patient and surgeon. For some patients, it is an easy decision to make, but for others it is not.

Talking to your consultant and/or nurse specialist about any concerns, worries or fears can often help you make the right decision. Remember, it is your decision to have the stoma reversed and when to have it done, though in some cases reversal may not be possible ■

CHARTER STOMA CARE ISSUE 32

Lifestyle

Claiming your disability benefits The majority of ostomists would not consider themselves disabled. However, as Terry Gallagher explains, a stoma counts as a legal disability, which gives some benefits If you ask people with an ostomy whether they consider themselves to be disabled, most will probably say no; the law, however, takes a different view. Before 1995, councils kept a register of disabled people and you could apply to be on it; what qualified as a disability was open to interpretation. However, in 1995, the Disability Discrimination Act (DDA) came into force. Its implications are very important for ostomists, as it provides legal protections that would not otherwise be available, even if you do not feel you are living as a disabled person.

collect our waste, but these are excluded under the conditions of ‘correction aid’ – the fact that they help us manage our condition does not cancel out the fact that the condition is considered a legal disability in the first place.

So, what are these protections and how do you get them? If you are employed, you are able to inform your human resources department or manager that you are a legally disabled person under the DDA, and that you wish the company to make ‘reasonable allowances’ for you. If the company asks for a registration of disability (as some may do, being unaware that this no longer exists!), you can point out that this was rendered obsolete when the DDA came into effect. The purpose of this act was to allow disabled people to work on equal terms with the fully ablebodied by making these reasonable adjustments.

So what sort of ‘reasonable adjustments’ could be asked for? For example, if you worked at a call centre where the managers are particularly strict about ‘toilet time’, a reasonable adjustment would be to allow you more, and longer, toilet breaks because you are disabled and need more time to deal with your pouch (whether it be a colostomy, ileostomy or urostomy) especially if you have just developed a leak. If the management were to refuse, then they would be acting

Who is disabled?

CHARTER STOMA CARE ISSUE 32

As a legally disabled person, you are entitled to apply for certain benefits

ALEXANDER WALTER

The Act removed the requirement for disabled people to register with their local council. Some councils have chosen to still keep a register, but, despite some businesses still referring to a 'registered disabled person', this status does not exist any more across the country as a whole.

Instead, the DDA set down a definition of which conditions qualify a person as disabled. If a person meets a particular definition, then they are legally a disabled person.

We now need to get rather technical! The DDA defines disability as ‘a physical or mental impairment which has a substantial and longterm adverse effect on the ability to carry out normal day-to-day activities’. ‘Long-term’ is defined as lasting 12 months or more. The normal day-to-day activities are: ‘Mobility; manual dexterity; physical co-ordination; continence; ability to lift, carry or move everyday objects; speech, hearing or eyesight, memory, ability to concentrate, learn or understand; understanding of risk or physical danger.’ The Act also states that the effect of ‘any correction aid or treatment such as mobility aids’ should not be taken into consideration when deciding whether a person is legally disabled. In fact, over 11 million people in the UK are covered by this title, under the terms of the Act, and those of us with ostomies are included. Yes, an ostomy is very definitely considered a legal disability as defined by the DDA – ‘continence’ from the definition above is the section under which we qualify. The reason is that an ostomy is technically an ‘incontinent stoma’, since we cannot control the output from them. Yes, we wear pouches to

Terry Gallagher Stoma patient, Nottingham

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Lifestyle

Further reading ■

unreasonably and could ultimately be taken to an industrial tribunal for failing to make reasonable adjustments to a disabled person under the DDA. It may be that the company toilets are too small, so a reasonable adjustment would be to request a proper disabled toilet with clinical waste bin for your use. There are grants available for this, so the company would not have to meet the full cost. Another reasonable adjustment that can be requested is time off work, with pay, to attend hospital or GP appointments in connection with your stoma.

You are entitled to use disabled toilets. Personally, I find it embarrassing to empty my urostomy in an open male toilet and, anyway, I need to kneel to empty my ileostomy and must have access to water to wash the tail clean afterwards. Therefore, I always use disabled toilets.

Many of these have a lock fitted with the National Key Scheme lock (also called a RADAR key lock). Your local council may supply you with a key, or you can buy one from http://www.youreableshop.co.uk/product/smallradar-key-for-disabled-toilets-TV1060.html for less than £2. Another advantage of disabled toilets is that they have a bin suitable for disposal of used appliances if you need to change your pouch and flange. Do remember that the blue symbol on the door is the international symbol for disability – it does not mean that the toilets are for wheelchair users only – and that you are legally entitled to use a disabled toilet as a disabled person.

What benefits are you entitled to?

Legally, disabled people are also entitled to apply for certain benefits. Any ostomist should be getting all prescriptions, except for glasses, free. If you do not currently receive free prescriptions, ask your doctor or stoma nurse to fill in form FP92A and sign it. Then you can send it off to the Prescription Pricing Authority, which will send back a white plastic card, about the size of a credit card, which entitles you to all your prescriptions free. (Of course, children and the over-60s get free prescriptions anyway.)

Previously, if you had made three years’ National Insurance contributions, anyone with an ostomy was entitled to receive Incapacity Benefit. There was a ‘fitness for work’ test, which you ‘failed’ (thus qualifying for Incapacity Benefit) if you scored more than 14 points on the test. Having an ostomy automatically scored 15 points, so qualified. However, a person is most frequently able to work with an ostomy and you are almost certainly financially much better off in work than on benefit. But now that Incapacity Benefit has been replaced with

Key points ● Even if you do not ‘feel’ disabled, having an ostomy counts as a legal disability. ● Being legally disabled grants you financial benefits and other adjustments to make living with your condition easier, at home and at work.

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Disability Discrimination Act 1995 – www.opsi.gov.uk/acts/acts1995/Ukpga_19950050_en_1

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Form FP92A – www.patient.co.uk/showdoc/23069022/

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Disabled people and carers – www.dwp.gov.uk/ lifeevent/discare/

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Employment and Support Allowance – www.dwp.gov.uk/esa

Employment and Support Allowance for new applicants, the automatic qualification for ostomists is to be removed, as the new test looks at what work a person is capable of, rather than what they cannot do.

An ostomist can also apply for the care component of Disability Living Allowance (DLA). This is not based on what disability a person has, but rather on the help they need, even if they do not currently get that help. An ostomist may qualify because of the need for help at night, for example. We do get leaks from time to time and it is really helpful, when this happens, for someone to strip and clean the bed, put the sheets in to soak and remake the bed while we shower or bathe and change the leaking pouch. This may be enough to qualify for the lower rate of the care component. Many claims are turned down initially, so it may be worth appealing against the decision if you are refused DLA, as you may have a better chance on appeal.

Other benefits Ostomists may also qualify for other benefits, such as council tax reduction. This reduces the council tax by one band if the person needs, for example, a separate bedroom for medical treatment. Just having an ostomy alone is usually not enough for this, but other conditions as well may qualify. The storage of ostomy supplies is taken into consideration for this. If you receive certain Social Security benefits, your local water company may reduce your charge (if you are metered) because you have an ostomy.

Qualifying benefits for this are often income support, council tax benefit or housing benefit. Each water company differs slightly with its regulations, so contact your water provider for more details if you think this may apply to you.

There is also the disabled facility grant. Because I spend a long time in the bathroom dealing with my ostomies, we received a grant to put in a second toilet (for which my wife is often very grateful!) An ostomy may be a qualification for this if there is only one toilet in the home. This is means-tested and is applied for through the social services department, which arranges a visit from one of its occupational therapists to assess the need.

So, whether we feel disabled or not, we are legally classified as disabled because of our ostomies.

This confers certain benefits to try to remove any disadvantage that our ostomy may cause when at work, or to help us meet extra costs at home. You should not feel that receiving help in this way is ‘sponging off the state’ – rather, it is getting the help you need to cover the extra costs which having an ostomy can give rise to, and allowing you to function at your best, whether at work or at home ■

CHARTER STOMA CARE ISSUE 32

Practical care

Choosing the right appliance There is a wide range of bags and appliances for the management of your stoma, but the choice can be bewildering. Julia Williams talks you through the options If you ask any new ostomist what sort of stoma bag they would choose, in most instances they will say something secure, comfortable and discreet. It is often said that the more confident you feel with the practicalities of your stoma care, the sooner you are likely to return to the lifestyle you enjoyed before surgery.

It could be argued that all stoma appliances meet these criteria, but we all have preferences.

The stoma care nurse specialist plays an important part in helping you make a decision; however, if a problem or complication in relation to your stoma has occurred, then this choice is not so varied. This article offers some information on the importance of the nurses’ assessment of your needs for the right stoma appliance and provides an overview of what stoma products and accessories are available.

An extensive choice of stoma appliances and accessories is currently available on prescription. Many healthcare professionals consider this choice to be rather confusing, leading to a misunderstanding among carers, community nurses and GPs alike. Manufacturers have focused their research and development on the needs of the ostomist and this has allowed advances in product expansion to occur.

As a new stoma patient, you will be reliant upon the expertise of the ward staff or stoma care nurse specialist in order to make an informed choice as to which stoma appliance is best suited to you. It is, therefore, very important for nurses to work closely with new stoma patients and develop comprehensive knowledge of the appliances and accessories that are available on prescription.

A thorough assessment of the new stoma patient is of the utmost importance, as the patient’s preference and ability to manage their stoma will reflect on which type of appliance is appropriate. During the assessment the following questions should be considered. ● What type of stoma has been formed? ● What type of effluent is being passed? ● How good is the patient’s manual dexterity? ● Is the patient’s sight impaired? ● Is the patient’s hearing impaired? ● How active is the patient’s lifestyle? ● Does the patient have sensitive skin?

CHARTER STOMA CARE ISSUE 32

● Has the stoma been placed in a skin crease or near to the suture line? ● What is the patient’s preference in terms of ease of use, aesthetic appeal, comfort, reliability and availability?

Appliance types One-piece appliances As the name suggests, the one-piece appliance incorporates the bag and adhesive base plate together. The adhesive base will have either a hydrocolloid skin barrier and/or a hypoallergenic adhesive. The hydrocolloid component of the base plate acts a skin protective barrier and additional security is provided by the hypoallergenic adhesive.

If the stoma is irregular in shape, it is appropriate to use an appliance with a cut-to-fit opening. This enables the nurse to create a template of the actual stoma size and use it as a guide to cut the aperture of the appliance. When the stoma is regular in shape, a pre-cut opening is available to fit securely around the stoma, although the correct sizing must be ascertained.

Too large an aperture may lead to skin damage and too small an aperture may lead to constriction of the stoma and, in severe cases, ischaemia (restricted blood supply) can occur.

One-piece appliances are considered the simplest to apply, as they are soft, flexible and discreet under clothing. They are suitable for patients whose manual dexterity is reduced, or for new patients, as fewer learning stages are required. The appliance can be applied and removed as one. A clear or opaque one-piece appliance is available as a closed, drainable or taped (urostomy) version.

Julia Williams MEd BSc(Hons) DipDN RN

Lecturer in Gastrointestinal Nursing and Deputy Director to the Burdett Institute of Gastrointestinal Nursing with King’s College, London and St Mark’s Hospital, Harrow

Two-piece appliances The two-piece appliance has a separate base plate (flange) and pouch. The skin barrier to the base plate is similar to that of the one-piece and is available with or without the hypoallergenic adhesive. Generally, the base plate needs to be cut to the stoma size at each appliance change and a cutting guide may be required. It is possible to arrange for dispensing appliance contractors to cut the base plates.

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Practical care This is only possible to arrange if a guide to the actual stoma size is supplied. Cutting devices are also available which punch out a hole to the exact size of the stoma in the base plate.

Once the base plate is in place on the abdomen, over the stoma, the appliance is clipped or stuck onto the base plate. This enables the appliance to be renewed regularly while the base plate remains in place. It is usual for the base plate to be renewed once or twice a week and the appliance renewed as required. The advantage of this system is that the appliance can be changed without disturbing the surrounding peristomal skin. In view of this there is a lower incidence of skin irritation when using a two-piece system. An additional advantage is that smaller sized appliances can be interchanged during the day when discretion would be considered more important than capacity; for example, during swimming and other sports, and sexual intercourse. Two-piece appliances are available as a closed, drainable or taped (urostomy) appliance, and are offered in clear or opaque material.

Clear and opaque appliances Clear appliances allow the stoma and effluent to be easily observed, which is of particular importance when the stoma is newly formed. Some stoma patients prefer to continue using a clear appliance as it enables them to see the stoma when placing the appliance on the abdomen, therefore increasing a patient’s confidence that the appliance is secure. Opaque appliances are used by many patients who prefer to disguise the effluent. As with all modern appliances, disposable stoma care products are made from odour-proof, laminated plastic. Opaque appliances generally have a soft material outer cover to ensure comfort against the ostomist’s skin. Some clear appliances have a split soft outer covering; the stoma can still be easily observed, while concealing the effluent.

Stoma care is generally best kept as simple as possible, with many stoma patients achieving self-care with the use of minimal or no stoma accessories. One of the goals of good stoma management is to maintain healthy peristomal skin. Before guiding you in the selection of a suitable appliance the nurse must be mindful of several aspects relating to your surgical procedure, the stoma itself, and your abilities and preferences.

Problems with established stomas become more evident in the long term. This is generally because, for the stoma patient to adapt to their new lifestyle, they are likely to have made changes to accommodate the stoma.

Key points ● Stoma pouches are available as one-piece or two-piece, and in clear or opaque materials. ● One-piece appliances are more suitable for new ostomists, as they are easier to manage. ● There are many stoma accessories to help stoma management.

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Table 1. Stoma accessories and their suggested use Stoma accessory Deodorants Pastes Powders Skin protective wafers Seals and washers Night drainage Adhesive removers Absorbing agents Retention strips Skin barriers Pouch covers Stoma caps Belts

Abdominal supports Activity shield (St. Mark’s shield) Convexity

Usage Assist in the elimination of odours Fill peri/parastomal creases and dips Protect damaged peristomal skin and assist in drying weeping peristomal skin Protect the peristomal skin from effluent or contact dermatitis Fill peri/parastomal creases and dips. Used in the management of retracted stomas Increases the capacity of the appliance, particularly for the urostomist Remove residual adhesive from peristomal skin Transform a liquid stool into a more manageable solid stool Provide additional security to appliance Protect peristomal skin Provide discreet appliance cover Small mini-pouch for use with colostomy irrigation or short-time wear Provide additional support in order to increase security of appliance; sash belt used to support parastomal hernia Provide support for parastomal hernia Used in contact sports to protect stoma; used in the management of prolapsed stoma Used in the management of retracted stomas

In most cases stoma problems can be managed through education so that certain changes to the management of the stoma can be made with or without the use of stoma accessories.

Accessories and aids for stoma appliances make up a large part of the GP’s stoma care budget. Modern stoma appliances often reduce the incidence of skin trauma and sensitivity; however, increased financial constraints result in the need for patients to be assessed with regard to the need for accessories in the first place. The stoma care nurse specialist should assess: the condition of the peristomal skin, whether the skin is sensitive, the type of effluent and the patient’s disability status.

Table 1 offers an overview of stoma accessories and their suggested use as a guideline for clinical practice. However, it is important that you always seek advice from a local stoma care nurse specialist as to the suitability of a product.

Initially, as a new stoma patient, you are likely to experience physical and practical problems with your stoma that may cause distress and embarrassment; this, in turn, may hinder your rehabilitation to the lifestyle you enjoyed before surgery. Most problems can be treated by education on the practical management of your stoma.

The early detection and treatment of problems can, in some cases, alleviate further surgery and, above all, ensure a better quality of life for you as a stoma patient ■

CHARTER STOMA CARE ISSUE 32

Contact centre of the year 2008 • Customer care team of the year 2007

Have you ever tried Charter Healthcare home delivery?

Do you know how we can help you live your life without worry?

For those who have not tried the service there may be many questions about how we could help you with all your stoma care needs; here, we will try and answer some of the most frequent questions.

What is Charter Healthcare?

Charter Healthcare is a free home delivery service of all brands of stoma and continence products and accessories.

Charter Healthcare is the largest UK supplier of stoma care and continence products direct to users.

Why should I use Charter Healthcare?

The Charter Healthcare service ensures you receive your stoma products when you want, where you want and in the manner that most suits you

How does Charter Healthcare work?

A brief and cost-free telephone call will mean that you should receive your products within 24–48 hours, already cut to the size and shape of your stoma and with an array of complimentary accessories – dry wipes, disposal bags and wet wipes – to your home address or the destination of your choice.

Is there a cost associated with using Charter Healthcare?

All deliveries, telephone calls and non-clinical accessories are free of charge to you. All we require is a prescription from your GP for the stoma products that you request.

Do I have to send Charter Healthcare my prescription?

Charter Healthcare can collect the prescription from your GP on your behalf. This part of the service is also free of charge. Or, if you prefer, you can continue to visit your GP to get your prescription and then send it to us in the Freepost envelope provided.

CHARTER STOMA CARE ISSUE 32

Will Charter Healthcare improve my way of life?

Absolutely – you will not have to concern yourself with collecting your own supplies, cutting your bags or relying on a relative or friend to do it for you, collecting a prescription or paying for additional disposal bags and wipes. This will give you greater ability to live your life the way you want to.

Can Charter Healthcare help me in other ways?

To make things even easier, you can request to be placed on our direct contact service. This means you don’t even have to remember to call us! We call you each month to see how things are going and whether you need to place an order for additional products.

What free accessories are available to me?

Each time you place an order with Charter Healthcare you can choose from a wide range of useful complimentary accessories. Simply tell us what you need and we will include the items with your delivery. Options include: intimate wet wipes, travel wet wipes, two sizes of dry wipes, scented disposable bags, water spray and night bag stands for urostomists.

Is it easy for me to start using Charter Healthcare?

Yes – you can contact us in two easy ways: 1. Call our Freephone number: 0800 132 787 and quote ‘Charter 32’. Our opening hours allow you to order when it is most convenient to you.

08:00–18:00 Monday to Friday 09:00–14:00 Saturdays 2. Complete the form at the back of this issue and return it to us.

My sincere thanks to all staff members who ❛have contributed to my wellbeing during the last year. Service to this standard is difficult to find in this day and age. Mr K, Charter customer

❜

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Straight talking

Need some help with your stoma? You are not the only one Having a stoma can be particularly difficult when problems arise. Jude Cottam explains that you should not worry and that help is at hand

Jude Cottam RGN MSc Clinical Nurse Specialist (Colorectal and Stoma Care), Bedford Hospital NHS Trust

A nurse dresses a patient’s colostomy

Having a problem with your stoma can have a catastrophic impact on your quality of life, in terms of your confidence and self-esteem. This can often result in a reluctance to socialise and a subsequent feeling of isolation. Please be reassured that such problems are more common than you realise and often the answer to them is only a phone call away.

A national audit of problematic stomas was carried out by Jude Cottam and Karen Richards, Clinical Nurse Specialists (Colorectal/Stoma Care) at Bedford Hospital in 2005. Stoma care nurses nationwide were invited to audit the next 50 stomas through their services from 1 January – 31 December 2005 (excluding paediatric stomas and urostomies). The criterion for a problematic stoma was one that needed one or more accessories to keep the patient clean and dry for a minimum period of 24 hours. The incident should have happened within three

Box 1. Range of complications, with stomas from 1,329 reported Retraction Separation Siting Necrosis Prolapse Other (not specified)

(40%) (23%) (9%) (8%) (2%) (18%)

weeks from the date of the operation. Many nurses took part and 3,972 stomas were reported, with the incidence of problems being 1,329 or 34%. That is one-third of patients who can expect to have a problem with their stoma within three weeks of their operation. See Box 1 for a breakdown of the problems.

Issues that may arise

ANTONIA REEVE/SCIENCE PHOTO LIBRARY

Retraction

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The most common problem was retraction, which is described as when the stoma falls back into the abdomen and does not protrude above the level of the skin. Why does this happen?

Sometimes, the surgeon can find it difficult to bring out sufficient bowel to make a good stoma. This can be due to radiotherapy before surgery, or if the patient has inflammatory bowel disease resulting in a poor quality bowel, or an obese belly – making the journey of the bowel to the skin surface a long one. It can also happen some time after the operation when you begin to feel well; appetite increases, as does your waistline. Unfortunately, the stoma cannot keep up with the expanding girth, as it is fixed inside.

A retracted stoma can cause leakage of the appliance, due to inadequate adhesion to the skin. The first basic principle of stoma care is a flat plane to stick the pouch onto. The skin around a retracted stoma does not allow this to happen, but the modern convex pouches do.

CHARTER STOMA CARE ISSUE 32

Table 1. Stoma complications sorted by gender

Separation and necrosis The second most common problem reported was separation. This is when the stoma separates from the skin at the mucocutaneous (stoma-skin) margin; it happens if there has been any infection at the time of surgery, which can result in poor healing (for example, diverticulitis). This problem does not usually happen with an established stoma. Wound care products can be used under the pouch/flange backing to help the area heal. Sometimes, if the wound is superficial, the backing of the pouch/flange on its own can do the healing.

This is a problem that usually happens only in the period after surgery, but it can have a long-term effect on the final outcome of how the stoma is managed, as can the fourth most common problem, necrosis. Necrosis happens in the first couple of days following surgery. The stoma changes colour to a dusky shade and can become black (necrotic). This is due to the blood supply being compromised and the stoma then becomes gangrenous.

This situation can often result in a return to theatre to rectify the problem. However, if the necrosis is only partial the surgeon may watch and wait. The area that is gangrenous can slough off and the stoma heal. These incidents can result in partial retraction.

Difficulties with siting The third most common problem identified in the audit was siting. When the stoma care nurse marks a site, it is for the surgeon’s guidance only as to the best place for the stoma to be. However, often in the emergency situation there has not been time to mark a site and the surgeon uses his judgement. However, an adequate site is very difficult to assess on an unconscious patient lying prone on an operating table. Sometimes in the elective situation the surgeon, due to technical difficulties, is unable to put the stoma exactly on the mark. A poorly sited stoma can bring its own set of problems in terms of leakage.

As the audit results show, prolapse does not often happen in the early days of having a stoma, but usually weeks, months or even years later. It happens more often with a loop stoma, especially in the transverse colon. This can lead to management difficulties keeping the pouch firmly fixed to the skin. You will need to seek medical attention if the stoma goes darker in colour, as this can indicate that the blood supply is being compromised. A prolapsed stoma can be surgically repaired.

Key points ● Around one-third of stomas can give rise to complications with their function. ● The most common issues are retraction, separation and poor siting. ● There are many products to aid with the management of stoma complications, and healthcare staff will help you to find the most appropriate ones.

CHARTER STOMA CARE ISSUE 32

Gender Men Women

Total number 2,163 1,804

Number of problems 649 686

% 30% 38%

Table 2. Stoma complications sorted by medical condition Condition Total number Number of problems % Colorectal cancer 2,057 635 31% Ulcerative colitis 383 144 38% Crohn’s disease 164 50 30%

Box 2. Number of accessories used to combat stoma complications Convexity Protective film Paste Powder Belt Seals Total

669 (50%) 560 (42%) 536 (40%) 452 (34%) 317 (24%) 272 (20%) 2,808. Average 2 per stoma

Risk factors for complications Emergency surgery is a risk factor for having a problem – 36% of the problems reported were following emergency operations, compared with 32% following elective (planned) surgery. The most common stoma formed is the end colostomy, yet this presented with significantly fewer problems (30%) than the loop ileostomy (38%). More men than women had stomas formed, but men had fewer problems (see Table 1). Why this should be is not clear.

Most patients had a diagnosis of cancer, but it was those with a diagnosis of ulcerative colitis who experienced the most problems (see Table 2).

In clinical terms, obesity is calculated as Body Mass Index (commonly referred to as BMI), which is a measure of body fat based on height and weight that applies to both men and women. It appeared from this audit that obesity played no role in problematic stomas, as patients with or without management difficulties fell into the healthy parameters (18.5–25) of the BMI.

Accessories to combat problems As you would expect, the number of accessories used to resolve problems were many and varied. Box 2 provides more details of the products used. Whatever the problem, the outcome is always the same – leakage! Do not struggle; there can be a very simple remedy, which is only a phone call away. Manufacturers have invested millions of pounds in product development in an effort to improve quality of life. Your stoma care nurse has all of these at her disposal – so make contact and get your life back on track ■

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Resources

Beating Bowel Cancer

The Urostomy Association

SCAR Stoma Care and Recovery

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Beating Bowel Cancer (BBC) is a leading UK charity for bowel cancer patients, working to raise awareness of symptoms, promote early diagnosis and encourage open access to treatment choice for those affected by bowel cancer. We aim to save lives from this common cancer.

Those affected by bowel cancer are at the heart of everything we do. Our patient support includes: ● Providing information booklets and fact sheets to patients and their relatives, giving up-to-date information on the disease and its treatment ● A comprehensive website ● Patient Voices, the first national bowel cancer patient-to-patient network, facilitating communication and experience-sharing between patients and those affected by bowel cancer ● Our nurse advisory service; provision of help and advice to those who wish to talk about any

aspect of their condition, whether physical (practical help with managing your stoma/poststoma reversal), emotional or practical.

In addition to our support services, BBC works hard to raise awareness of bowel cancer through numerous awareness initiatives and ongoing coverage in the media of the symptoms of bowel cancer. Be Loud! is our annual awareness and fund-raising campaign, urging the public to be just that! By being loud about bowel cancer and its symptoms, and dispelling the embarrassment so often associated with the disease, we can help to save lives. If you wish to find more about any aspect of the work of BBC and Be Loud! 2009 (26 January – 1 February), please contact: Tel: 08450 719 300. email: info@beatingbowelcancer.org website: www.beatingbowelcancer.org

The Urostomy Association (UA) provides information and support for anybody with a urostomy or any other urinary diversion. We have leaflets on a range of subjects, including different types of operation; travel; coping with infections; sexual matters; active living and many more, and publish a magazine three times a year. The UA has 17 branches around the UK and Ireland, as well as a large postal branch. Most branches hold three meetings a year and many organise social events.

We also have members in many areas available to visit people on a one-to-one basis.

Recent additions to our range include new leaflets giving information about the follow-up

care needed if you have a urostomy, and a DVD entitled ‘Living with Cancer’, presented by Pam Flint, partner of the actor Dennis Waterman.

The UA recently held its national Annual General Meeting in Nottingham, where about 150 members joined together for the weekend to meet old friends and make new ones. Many are already making plans to attend next October’s event.

For information about the UA, please contact: Hazel Pixley, National Secretary, Urostomy Association, Central Office, 18 Foxglove Avenue, Uttoxeter, Staffordshire, ST14 8UN. Tel: 08452 412159 or 01889 563191. email: secretary.ua@classmail.co.uk

Stoma Care and Recovery (SCAR) meet on the first Tuesday of every month in the village of Crosshouse, Kilmarnock.

There we have a chat and a cuppa, giving everyone a chance to share any problems they might have encountered and possible ways of overcoming them. We keep up to date with new products on the market and can call on company reps who are happy to help, either on the phone or by attending a meeting. One member is an aromatherapist and is able to advise on complementary therapies, which can be a great boost. We are a totally self-funding group, and

enjoy the social side of the fund-raising we do in order to keep the group running.

We do not ask that everyone looking for help should attend our meetings, although obviously we would welcome any newcomers. It is up to the individual whether they want to join us or not.

Anyone contacting us can be assured that it will remain confidential between the two contact members. Don’t be shy; remember, we have all been there and we will do our best to help!

Tel: Maggie Littlejohn on 07817 736 147 or Rhona on 01294 557478. email: maggie13@sky.com

CHARTER STOMA CARE ISSUE 32

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 am intrigued by the way you talk about ‘your’ stoma nurse, as if he or she is permanently on call. The stoma nurse for our area is unreachable when my mother (an ileostomist) is out of hospital and back in the community. However, should another hospital stay be needed, she is only too keen to appear at the bedside, gleefully telling us what we are doing wrong, even though we have followed her instructions. Do any other readers also find this happens in their area?

year, I am hoping to do the same again, and to see my granddaughter married in Greece. I think after that I really will settle down. I have driven into the Dales on the back of my son’s HarleyDavidson, and ridden with him a jet ski. I dance and swim once a week, and walk a lot. I have had no complications with my stoma, and try to ignore its presence as much as possible. It is possible, at the age of 87, to enjoy life, even with a colostomy, which, when first diagnosed with cancer, I swore I would never have.

Mrs MB, Yorkshire Wow! I am completely bowled over by your active life – what an example you are for all of us. Keep it up! ■

Miss AT, via email I am sorry that your mother does not have access to a stoma nurse outside of hospital.

Some stoma nurses are based in hospitals and others in the community. The number of visits or clinics they hold will vary, depending on what their hospital trust allows them. It may be worth writing to your stoma nurse to see if regular clinics are held, which your mother could attend if she ever has a problem ■ I thought my experience may interest anyone who feels that an active life is not possible after colorectal cancer. Five years ago, at the age of 82, I was diagnosed with such and, as I have always been an active person, I was devastated. My surgeon told me that I would still be able to lead an active life after the operation. I did not believe him. However, much as I disliked dealing with a stoma, I decided I was not going to let it beat me. Shortly after the operation, I was dancing again and living my life as I had always done. Last year, I flew to Barbados, then spent a fortnight cruising the Caribbean. This

CHARTER STOMA CARE ISSUE 32

I have had a colostomy since 1997. My bowel is perfectly healthy and I have no problem with the stoma, apart from the surrounding skin breaking down, which I can control with the help of my stoma nurse. I had a hernia repaired twice and had to have my stoma resited to just under my bust. I am finding it difficult to find suitable clothes – companies seem to assume that a stoma is situated beneath the waist. There are also appliances to help the patient feel that their pouch is securely fastened, but when the stoma is in the position such as mine, I cannot find anything along similar lines. I am sure there must be more people in the same situation.

Glossary I thought we would go back to basics, as I know that many of you still get confused over different stoma types.

Stoma: A stoma is an artificial opening created by a surgeon, either for ‘input’ or ‘output’; the commonest output stomas are colostomy, ileostomy and urostomy.

Colostomy: A colostomy is formed from the large bowel (colon). In an end colostomy, the end of the colon is brought to the abdominal surface, usually on the left of the abdomen. In a loop colostomy, a loop of bowel is brought to the surface and a slit is made to allow faeces to empty into a bag, but there remains some continuity as the bowel is not wholly divided. A loop colostomy is often temporary and reversal is relatively straightforward.

Ileostomy: An ileostomy is formed from the small bowel (ileum). Like a colostomy, it can be either an end or a loop. As it is formed from the small bowel, the output is much looser and more frequent than the output from a colostomy.

Urostomy: Sometimes known as an ileal conduit, this is more complicated. A piece of ileum is taken out but its blood supply is maintained. The remaining ileum is then joined back together. The small section of ileum, now isolated, is known as a conduit. The surgeon implants both ureters (tubes which come down from the kidneys) into one end of the conduit and brings the other out onto the surface of the abdomen. It looks like an ileostomy but drains urine.

There are other types of output stomas, but these are the most common. The type of stoma you have tends to dictate which type of appliance is most suitable. If in doubt, ask your surgeon or your stoma care nurse.

Please address your correspondence to: The Editor,

Mrs IF, via email

Charter stoma care

Many people will have their stomas positioned above the waistline. Most patients, however, do have their stoma beneath the waistline and clothing for stoma patients is designed for the majority. I am not aware of any companies that make clothing or belts to accommodate a stoma above the waistline. If any readers know otherwise, perhaps they can let us know ■

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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