Managing skin problems in children with incontinence ‌ page 7
Need bladder and bowel advice? ‌ page 10
Issue 19 Autumn 2009
continence care
Caring and coping Overcoming incontinence in dementia
CHARTC19
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Contents
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Psychological issues Dementia and continence issues by Muhammed Eshanullah
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Treatment Managing skin problems in children with incontinence by Matt Garner
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Coloplast How a space rocket changed our lives by Christine Anderson
Practical care 10 Need bladder and bowel advice? by Gill Turton Straight talking 12 Your sex life after the menopause by Cara J Kumah 14 Resources Forum 15 Q&A
Cover picture PLAIN PICTURE/FANCY
CHARTER CONTINENCE CARE ISSUE 19
Comment
Help transform community healthcare Welcome to everyone. Now that summer has well and truly gone, out come the jumpers and the warmer clothes. For those with bladder or bowel problems, extra layers of clothing can sometimes mean the difference between wet or dry in the rush to get to the toilet. It must have been a man who invented the net stretch pants to hold incontinence pads in place, as they constantly get caught up with rings, watches, tights, underskirts and velcro. Why can we not have some products that are easy to use, highly absorbent, fit well, do not show through clothing and are comfortable? Problems regarding the disposal of pads also remain, especially for men. So, why can a flushable pad not be developed? I have just been reading a government paper called Transforming Community Services: enabling new patterns of provision.1 Two of the main points in this paper are: giving people more say and more If they are in a choice over their own very public area, health; and empowering the public and clinical toilets are less likely professionals to lead to be vandalised local change, develop best practice and provide joined-up local services. This is the chance for everyone to look in their newspapers, see when the next health meeting is locally and express their views.
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Sponsored toilets? One key issue could be to ensure there is an increase, rather than a decrease, in the number of public toilets in the UK. These, currently, all-too-rare buildings need to have easy access and could be designed like the toilets in other parts of the EU, which are wide, easily accessible and self-cleaning. If they are in a very public area, toilets are less likely to be vandalised; they could even be self-locking at 10 pm before the pubs turn out. All this costs money but, now that both healthcare and social care are working in partnership with industry and the private sector, maybe it will not be too long until we see a toilet sponsored by the local pub, restaurant or estate agents. Continued overleaf 3
Take action locally I think this matter should be taken seriously and I hope that councils can be persuaded to open new toilets and that the public will get involved with the decision-making taking place across the country right now. Every day I read, see and hear of changes taking place, so now is the time to act and become involved in a local group, attend a meeting or visit your MP’s surgery and have your say. It is up to us to try to shape our health services for the future.
Difficult issues I am very pleased to see this issue of Charter continence care go to press, as it has articles in which some of the more difficult continence-related problems are discussed. Following my editorial message to become involved, it is most opportune to have Gill Turton write about the exciting things that the Bladder and Bowel Foundation (B&BF) is developing. Muhammed Eshanullah has written about the problems of dealing with incontinence presented by a loved one with dementia. It can, so often, be the last straw for a relative when the person they are caring for empties their bladder or bowel in an inappropriate place (maybe behind a sofa in the living room or in a vase). There are practical things that can be done and I am sure you will obtain some useful advice from this article. The condition of urogenital atrophy mostly affects older people and is often not treated. I therefore thank Cara Kumah for providing us with a very enlightening article. Finally, from Matt Garner, an article on something I am always asked about – recommended skin care for people with incontinence. Children in particular suffer from this problem, but older people can have very delicate skin too and may also find this article very helpful . I wish you all well, and look forward to receiving more of your letters and feedback. Reference
1. Department of Health. Transforming Community Services: enabling new patterns of provision. London: Department of Health, 2009. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publications PolicyAndGuidance/DH_093197 (last accessed 16/11/09)
Ann Winder, Editor The Editor Charter continence care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Tel: 020 7240 4493 email: edit@hayward.co.uk
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continence care Publication of Charter continence care is made possible through the support of Coloplast Limited. Editor Ann Winder RN Senior Continence Specialist, Park Drive Health Centre, Baldock Editorial Board Liz Bonner RN DNCert BSc(Hons) BA(Hons) HV MSc Nurse Consultant (Bladder/Bowel Dysfunction), Bedfordshire Continence Service, Dunstable Mary Brown RGN BA(Hons) PGCE Continence Nursing Team Manager, NHS Lothian Michael Cogswell Paraplegic, Pluckley, Kent Rachel Busuttil Leaver BSc(Hons) RN PGCE Lecturer Practitioner in Urological Nursing, London South Bank University and University College London Hospitals Sunil Mathur BA(Hons) MBBS MRCS Specialist Registrar, Musgrove Park Hospital, Taunton Mark Slack MB ChB MMed MRCOG FCOG(SA) Consultant Urogynaecologist, Addenbrooke’s Hospital, Cambridge Paul Smith Executive Director, Spinal Injuries Association
Editorial Director Elaine Bennett. Senior Sub Editor Joel Barrick. Sub Editor Christian Bell. Editorial Assistant Claire Robertson. Senior Designer Richard Seymour. Art Director Andrina de Paiva. Publisher Keena McKillen. 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 © 2009 Hayward Group Ltd. All rights reserved. ISSN 1745-9982. Printed by Turners.
CHARTER CONTINENCE CARE ISSUE 19
Psychological issues
Dementia and continence issues As we are living longer, dementia is becoming more widespread. Muhammed Eshanullah looks at the link to incontinence and suggests practical coping strategies
Reasons for incontinence Incontinence in patients with dementia may be due to a variety of reasons, including: ● Coexisting medical conditions that may affect elderly people irrespective of dementia, such as prostate disorders in men and gynaecological conditions in women ● Conditions causing dementia; for example, vascular dementia as a result of hardening of the arteries and strokes, or Parkinson’s disease-associated dementias (such as Lewy body dementia [LBD]) ● Disorders of the brain or neurological features of the dementing process itself, such as: – Spatial disorientation – where the sufferer develops an inability to find their way around. With this condition, disorientation may occur at any time. For example, a 90year-old lady who was recently admitted to my ward in the middle of the night, walked around and then relieved herself in a corner – Dyspraxia – this is a condition where the sufferer is unable to perform complex movements and it can be a feature of
CHARTER CONTINENCE CARE ISSUE 19
Caregivers normally provide patient history to the healthcare workers involved
PLAIN PICTURE/FANCY
As we are all living longer worldwide, the number of people living with dementia is increasing. In recognition of this, the UK government has launched a National Strategy for Dementia.1 A study of people aged 85 or above in Sweden2 showed that 78% of those with dementia living in care homes were incontinent, compared with 37% of those with dementia living in their own homes. Prevalence of dementia in the survey was 29%, and of those with dementia 50% of men and 60% of women suffered from urinary incontinence. In nondemented patients 18% of men and 36% of women had urinary incontinence. Prevalence of faecal incontinence was 34.8% in dementia sufferers, and 6.7% in non-demented patients.2 Incontinence (urinary and faecal) poses a special challenge for carers looking after patients with dementia, either in their own homes or in residential care homes. Caring for incontinent patients can lead to a great deal of stress, causing crises, feelings of an inability to cope, and even resulting in admission to residential care (as an Australian study has shown).3
dementia. The person may not be able to perform tasks such as fastening zips, buttons and so on – Disruption of the neurological pathways that control and maintain bladder sphincter (muscle) co-ordination and function – Disinhibition, such as loss of frontal-lobe function. Loss of frontal-lobe function results in inappropriate social behaviour in relation to others and uncontrolled emotions. Frontal lobe-type dementia also results in marked apathy and excessive sleep, which may lead to incontinence – Dysphasia – the inability to comprehend instructions, or an incapacity to express onself, may also cause incontinence – Loss of memory – in which a sufferer does not remember what they were told in relation to toileting facilities – Changed behaviour – aggression towards carers, not taking advice or accepting help can be detrimental to maintaining continence. Incontinence is not a feature of early Alzheimer’s-type dementia, but is likely to occur at a later stage. However, in vascular dementia incontinence is likely to occur earlier rather than later. The same is true for LBD, frontal-lobe dementia, Creutzfeldt-Jakob disease (CJD), variant CJD and HIV-associated dementia. Bowel disorders, both constipation and diarrhoea, are another common cause of incontinence. Diarrhoea may be due to
Muhammed Eshanullah FRCP Consultant in Elderly Medicine, Lister Hospital, Stevenage
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Psychological issues gastroenteritis, overuse of laxatives, too much fibre in the diet, or use of antibiotics. These problems result in loss of control, urgency, and, often, being ‘caught short’ (not making it to the toilet in time). Exhaustion, weakness and tiredness can further add to the problem. Constipation may be due to lack of fibre, sluggish digestion (dysmotility) caused by old age, dehydration, drugs such as painkillers and antidepressants. It results in chaotic bowel function, overflow diarrhoea and urgency. Chronic constipation may also result in painful defecation, with or without anal fissure (skin cracking or tearing). Urinary tract infections (UTIs) often cause sudden-onset incontinence in the elderly. All infections in patients with dementia can present with unusual features, such as apathy, increased drowsiness and irritability, loss of appetite and worsening or new onset of incontinence.
Difficulties and solutions Onset of incontinence in previously continent patients always requires investigation to exclude and treat any underlying causes. It is often a worrying and stressful time for caregivers, and for the family and friends of the patient, as it may indicate that dementia has worsened and entered the advance stage. Caregivers may develop concerns regarding unpleasantness, laundry, resources and intimate care. All these issues can lead to anxiety, stress and feelings of an inability to cope. The sooner caregivers seek assistance with these difficulties, the better. The first port of call for help should be the GP’s surgery, so that the GP and district nursing service can assist. Caregivers normally provide a patient’s history to the healthcare and social care workers involved . Keeping a diary can help note any changes in behaviour, medication or physical environment, such as modifications to toilet facilities or sleeping arrangements. Information on when continence problems generally occur; for example, only at night, or on the way to the loo, can also be helpful. A thorough clinical input consisting of history taking to find the causes outlined above, a physical examination (including rectal examination to diagnose constipation and prostatic disorders in men, and a gynaecological examination in women) will also be required. Examination of the urine with a dip stick, and culture and sensitivity (analysis of urine in the laboratory) is helpful. Other specialised investigations may include blood tests (especially kidney function tests, prostate-specific antigen tests for men, and in some cases blood sugar, calcium and
Key points ● As we are all living longer worldwide, the number of people living with dementia is increasing. ● Incontinence is a feature of advanced dementia in the majority of patients. ● There are numerous ways in which caregivers can assist incontinent patients with dementia.
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thyroid tests. This intervention should result in a diagnosis, establishing the cause or causes of incontinence, the treatment of which may result in a positive resolution.
Useful strategies for caregivers Caregivers can assist incontinent patients in many ways: ● Environment: – Signs – the use of clearly visible signs in large letters, colour coding of doors and markings on the floor to indicate where toilets are, are all very helpful – Aids – provide aids around the toilet; for example, bars, raised toilet seats, easily accessible paper – Mirrors – remove any from toilets as some patients are scared of mirrors, which may inhibit their toileting4 – Lighting – provide good lighting on the way to, from and inside the bathroom/toilet – Sleeping locations – altering sleeping locations – for example, moving a patient’s bed closer to the toilet – may result in improved continence – Clothing – clothing needs to be dignified, but also make it easy for patients to go to the toilet – Assistance – it should be easy for the patient to inform someone that they need the toilet and timely assistance should always be provided – Motion detectors – place these on chairs and beds to be alerted if a patient stands up, which may indicate a desire to use the toilet, allowing time for intervention ● Diet: adequate intake of water and fibre is essential and may help patients maintain continence ● Review medication: review the patients’ needs for opiates and other drugs that can cause constipation or affect urination (for example, antidepressants) ● Regular toileting: encourage patients to use the toilet at regular intervals throughout the day, as this can eliminate or reduce incontinence. However, this is impractical at night when aids, as described below, may be required ● Provide appropriate aids: consider providing a commode, portable urinal or other aids (such as pads), as required. The local continence advisory service (CAS) can be very helpful in investigating and giving further advice. Close co-operation and working relationships are required between GPs, psychiatrists, services for elderly people and the local CAS ● Travelling and going out: forward planning is essential. Long journeys may require regular breaks (normally every one to two hours) and the use of aids, such as pads and portable urinals. When going out, find out where the toilets are, and how easy the access is, in advance ■ References 1. National Dementia Strategy http://www.dh.gov.uk/en/socialcare/deliveringadultsocialcare/olderpeople /nationaldementiastrategy/index.htm (last accessed 02/11/09) 2. Hellström L, Ekelund P, Milsom I, Skoog I. The influence of dementia on the prevalence of urinary and faecal incontinence in 85–year–old men and women Arch Gerontol Geriatr 1994; 19: 11–20. 3. Pearson J, Finucane P, Tucker I et al. Incidence of Incontinence as a Factor in Admission to Aged Care Homes. Report prepared for the Australian Government Department of Health and Ageing, 2002 (Unpublished). 4. Rabins PV, Lyketsos CG, Steele CD. Practical Dementia Care 2nd edition. New York: Oxford University Press, 2006.
CHARTER CONTINENCE CARE ISSUE 19
Treatment
Managing skin problems in children with incontinence Matt Garner offers a useful guide for all healthcare professionals, parents and carers of children with skin problems resulting from incontinence The main cause of skin problems due to incontinence is prolonged exposure of the skin to urine and faeces. Severity ranges from redness (erythema) through to skin ulceration and infection. These problems may be inappropriately managed and underestimated by healthcare professionals. Nappy rash is a term associated with babies that effectively describes the skin problems that incontinence can cause. It affects at least 50% of babies, and is normally at its most severe when a child is 9–12 months old.1,2 Developmentally, babies are incontinent by nature, and pass through a range of physical and psychological milestones to achieve continence. In the absence of a change in the baby’s toileting habits, good nappy care will hopefully help avoid nappy rash.
Irritant dermatitis Children and adolescents can be affected by the same skin problems as babies, but it is wise to move away from the term ‘nappy rash’ and use a more age-appropriate description less likely to cause distress or embarrassment. ‘Irritant dermatitis’ (ID) is an acceptable alternative and will be used in the rest of this article.
What causes it? The cause of ID is prolonged exposure of the skin to urine and faeces.3 Faeces contain digestive enzymes (substances that bring about specific chemical reactions in the body); for example – lipases, proteases and ureases, that can inflict damage on the skin. This damage is normally minimised by the fact that the outer layer of the skin (epidermis) is, by nature, acidic, as a form of protection. However, exposure to urine reduces the epidermis’s acidity, and the mixing of urine and faeces accelerates the activity of the enzymes. Faecal urease converts urinary urea into ammonia, which is too acidic and damaging to the skin, and so it reacts to this with an inflammatory response, resulting in redness, heat, and tenderness (the classic signs of ID).
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In incontinent children with acute or chronic diarrhoea the reduced bowel transit time results in a higher proportion of destructive proteases, and the liquid form of diarrhoea also causes greater skin contact.4 The use of antibiotics to treat an unrelated condition is frequently the root cause of ID in hospitalised children. Incontinent children and adolescents often need to wear ‘nappies’ (also known as ‘pads’ or ‘pull ups’). Being covered by a nappy or pad increases moisture content in the outer layers of the skin, which increases the skin’s susceptibility to irritants. The presence of moisture will make friction (when the nappy/pad rubs against the skin) worse, causing further damage. If ID is not managed, the inflammation can lead to excoriation. An excoriation is a tiny hole, scratch or graze, usually involving only the epidermis but not uncommonly reaching the dermis (the thick layer of skin below the epidermis). In very severe cases the skin can ulcerate, causing deep cuts through all of the skin layers to the fat and muscle underneath.5
Matt Garner RN BSc Specialist in Tissue Viability, Great Ormond Street Hospital, London
Risk of bacterial infection Once the outer layers of the skin are damaged, it is at risk of infection from bacteria and fungi. Signs of infection include heat, redness, hardness (induration), cellulitis (shiny swollen skin), pus, fever and generally feeling unwell. Infection is far more common in children with weakened immune systems. Bacteria such as Escherichia coli (E coli) and pseudomonas can cause infected ID. Infected ID should be treated both topically and repeatedly.
Coping day-to-day Nappies The incidence of ID can be reduced, and possibly avoided, by using high-quality disposable nappies/pads with a gel core. The gel core of modern disposables retains fluid, keeping it away from the skin, and this can reduce the incidence and severity of ID.1,6
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Treatment Nappy or pad changes should generally take place as soon after soiling as possible. Jordan et al1 found a direct correlation between above average nappy/pad changes (in other words, more than eight per 24 hours) and a reduction in ID. Frequency of nappy/pad changes will be dictated by several factors: ● The child’s age ● The child’s ability to communicate ● Whether or not the child is aware that they are about to, or have, passed urine and/or faeces. Incontinent children in a nappy or pad should be checked for soiling at least once during the night, and all changes and checks should be increased when diarrhoea occurs. Warm water should be used to cleanse the skin after soiling. Soap is not needed and can lead to the skin becoming dry, which could alter its acidity and susceptibility to damage; aqueous cream (containing water) or a similar emollient cream (to soften and smooth the skin) can be used instead. If there are already signs of ID, skin breakdown and/or infection, consider using an emollient that is combined with an antimicrobial, such as chlorhexidine (available in chemists). There are a myriad of commercial wipes in the marketplace. The truth is that such wipes are all pretty much one and the same thing – although some may appear softer or smell nicer (this may just be a matter of personal taste). There is no clinical evidence that wipes perform better than gauze, muslin or a flannel or that they prevent ID. However, they are convenient if you are in a car or anywhere away from warm water and a bowl .
Barrier products The barrier products available for preventing and/or treating ID contain a bewildering array of constituents.7 It is arguable that the components of a barrier product should be limited to the essentials, and should not include perfume or antiseptics due to the risk of skin sensitisation.4 However, the author has recently been introduced to a barrier cream containing high-grade Manuka honey, and has been impressed by both its locking and healing qualities. This cream is currently being trialled at Great Ormond Street Hospital. Ointments are considered more effective than creams and pastes as they are unable to absorb water, and are less likely to rub off. However, problems arise when barrier ointments transfer onto the nappy/pad lining and limit
Key points ● Nappy rash is a term that describes the skin problems that incontinence can cause. ● The term ‘irritant dermatitis’ (ID) is used to describe the condition in older children, instead of nappy rash, to avoid embarrassment or distress. ● There are many effective treatments for ID and nappy rash available from GPs and specialists.
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absorption. Recent alternatives to creams and ointments are barrier films. These products create a transparent film that is resistant to urine and faeces. However, excessive application can lead to cracking and peeling of the skin. Other topical agents, such as antibiotic creams, are less effective if a barrier film is already in use.7 It is arguable that in the absence of altered bowel habits the routine use of barrier preparations is unnecessary, as there is no evidence that they are more effective than a simple ointment, such as zinc and castor oil.7 However, if not a habit, incontinence can be defined as altered bowel behaviour. It is, therefore, suggested that a barrier preparation should be used to prevent rather than cure ID. Parents and carers should take the ‘try it and see’ approach and use the barrier preparation that they think is best for them and their child.
Infections and other problems Fungal or bacterial infection should be considered as a cause of ID if an incontinent child’s poor skin is not improving despite best efforts. The presence of pustules, raised edges, adjacent lesions, additional lesions outside the nappy area, discolouration and scaling should provoke concern and referral to a GP. Inflamed and/or infected skin is weak, and relatively low external pressure can cause ulceration and necrosis (the premature death of cells and tissue). Children with active ID should try not to remain sitting in the same position for long periods. For children who are both incontinent and wheelchair bound, specialist seating or a review of current specialised seating should be organised. A mild steroid cream could be considered if ID is not improving – it will help reduce redness and discomfort. As colonisation or infection is likely, use the steroid cream alongside a topical antibiotic and for no longer than 14 days; there are preparations available that include both and these are advised.
Make sure you ask for help ID will be an issue for all incontinent children and their parents and/or carers at some point. It is often felt to be transient and is underestimated, but in reality it needs careful assessment and treatment. Please remember, you do not need to manage this on your own. Book an appointment to see your GP and ask about a referral to your community continence service, and/or your community tissue viability service ■ References 1. Jordan WE, Lawson KD, Berg RW, Franxman JJ, Marrer AM. Diaper dermatitis: frequency and severity among a general infant population. Paediatr Dermatol 1986; 3: 198–207. 2. Benjamin L. Clinical correlates with diaper dermatitis. Paediatrician 1987; 14(Suppl 1): 21–26. 3. Buckingham KW, Berg RW. Etiologic factors in diaper dermatitis – the role of feces. Pediatr Dermatol 1986; 3: 107–112. 4. Atherton DJ. The aetiology and management of irritant diaper dermatitis. J Eur Acad Dermatol Venereol 2001; 15(Suppl 1): 1–4. 5. Berg RW. Etiology and pathophysiology of diaper dermatitis. Adv Dermatol 1988; 3: 75–98. 6. Lane AT, Rehder PA, Helm K. Evaluation of diapers containing gelling material with conventional disposable diapers in newborn infants. Am J Dis Child 1990; 144: 315–318. 7. O’Brien M. Assessing and treating nappy rash in the hospitalised child. Continence UK 2007; 1: 30–37.
CHARTER CONTINENCE CARE ISSUE 19
Christopher Anderson and his mum Christine
How a space rocket changed our lives Christine Anderson explains how her son’s life was changed by the Peristeen anal irrigation kit or, as he prefers to call it, his space rocket In the summer of 2007, Christopher was fast approaching the point at which he would need bowel surgery. Born with spina bifida and hydrocephalus, Christopher clearly had a neuropathic bowel and bladder. Having struggled with abdominal pain and general discomfort since he was a baby, it was obvious that poor management of his bowels was also affecting his bladder and general health. We had tried suppositories and enemas and, although some initial relief and improvements were made, it was shortlived. A final increase in dose of phosphate enema resulted in a tired, groggy, unhappy little boy and no end to the long periods spent sat on the toilet. Blood tests showed Christopher’s potassium levels were low, a sideeffect of phosphate enemas. We did not want any more surgery, as we felt that Christopher had been through enough. However, the surgeon had already suggested that, by the following summer, he would need surgery to perform an antegrade colonic enema. I began to ask questions of Angela Lansley, our Association for Spina Bifida and Hydrocephalus Area Adviser, and Caroline Sanders (our Urology Nurse Specialist). Both women, independently, asked if I had heard of Peristeen, an anal irrigation kit, which had been launched on prescription in April 2007. I asked for more information and, in October 2007, Alison Ebanks from Coloplast came to Alder Hey, Liverpool, to deliver training to Christopher and a small group of parents who were interested in Peristeen for their children. Almost two years later, we
have never looked back! Peristeen, and Alison’s training, have changed our lives forever. The training was directed at Christopher and he still refers to the handset as his space rocket. He knew exactly how to use the kit immediately and was keen to get his own. The following day, our parcel from Charter Healthcare arrived. Christopher was in full control and he reminded me what to do. The result was fantastic! We now use Peristeen every evening. Christopher can be in the bath within ten minutes and is now totally clean between washouts. Coloplast has trained staff at Brian House Children’s Hospice for us. By last summer, my husband Pete and I were able to go away for our first weekend without the children since they were born. No more lengthy waits for the bath while sat on the toilet, no more medication and many fewer bladder infections. Peristeen only requires simple warm water out of the tap, which means we can use it anywhere: in hotels, in Auntie Jen’s caravan and at Nanna’s house. It is discreet and fast. It has even been to Disneyland® Paris with us. Also, Charter Healthcare is fantastic and always offers a friendly voice at the end of the telephone line. They are so fast and efficient and we love the free bags and wet wipes that we receive. Discreet packaging and speedy service, usually the next day, and they even request the prescription for us ■
❛ Peristeen,
and Alison’s training, have changed our lives forever
CHARTER CONTINENCE CARE ISSUE 19
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If you would like any information regarding Peristeen Anal Irrigation please contact Charter Healthcare on 0800 012 1897 and quote reference CHARTER19
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Practical care
Need bladder and bowel advice? The Bladder and Bowel Foundation launched in 2008 as a new charity formed from
Gill Turton Communications Manager, Bladder and Bowel Foundation, SATRA Innovation Park, Kettering
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The Bladder and Bowel Foundation (B&BF) is the UK’s largest advocacy charity providing information and support for all types of bladderand bowel-related problems (including incontinence, prostate problems, constipation and diverticular disease) for patients, their families, carers and healthcare professionals. The charity was officially formed in June 2008 and launched in September 2008 during National Continence Awareness Week but, strictly speaking, it is not a new charity and has a long history spanning nearly 20 years. In fact, the B&BF replaced two previous organisations – Incontact and the Continence Foundation. To mark its launch, the B&BF commissioned new research to establish current prevalence of bladder and bowel problems. The study offered a clearer picture of the scale of these problems, although it should be noted that current estimates are still likely to be conservative as under-reporting is common due to the embarrassing nature of these problems. The research suggests that there are now around 14 million people in the UK with a bladder control problem and 6.5 million with a bowel control problem.1 With approximately 61 million people in the UK, a population that is continually growing and getting older, it would be fair to say these problems are not going to go away, but, rather, increase. Bladder and bowel problems represent a major community health problem in the UK, but unfortunately it is also a health area that is often overlooked by non-specialist healthcare professionals and policy-makers. As well as physical problems, many people with bladder and bowel conditions experience mental anguish and anxiety. They worry about not being able to find a toilet in time, about a leak that they cannot control and about the allconsuming embarrassment of having ‘an accident’ in public. Being incontinent is second only to dementia as the reason why older people enter residential care. Many incontinent people become housebound, afraid to go out in case they cannot find a toilet–leading to isolation, loneliness and even depression. The more often an elderly person has to get up at night to go to the toilet, the greater the risk of having a fall.
MEL YATES/CULTURA/GETTY IMAGES
Incontact and the Continence Foundation. Gill Turton outlines its activities
The Bladder and Bowel Foundation provides advice and support through its helpine services
Bladder and bowel problems do not kill you, but they can kill your quality of life and they remain neglected and often hidden conditions. Learning to cope can be more than a practical problem; it can also affect you emotionally. Many people develop elaborate coping mechanisms and live in fear of ‘having a leak’, which can lead to a loss of self-confidence and a fear of personal and social rejection.
Advice and information The B&BF is a patient-led, membership organisation, but provides services for all. Although there is a greater awareness of these conditions now than there was ten years ago, many people still feel too embarrassed or ashamed to seek help – even from their GP – and are unaware of the alternative options available. Help is also available through the Continence Advisory Service (CAS). It is part of the NHS and employs nurses and physiotherapists who are specifically trained to deal with bladder and bowel problems. The B&BF can put you in touch with your nearest clinic.
CHARTER CONTINENCE CARE ISSUE 19
Box 1. How to contact us ■ Address: The Bladder and Bowel Foundation,
Providing a lifeline The B&BF can be a lifeline for those unable to pluck up the courage to speak to someone directly. It believes in listening to the needs of people affected by bladder and bowel disorders and provides advice and support through its helpline services. The nurse helpline, staffed by continence specialists, offers callers the opportunity to find out more about their condition without having faceto-face contact. This service is completely confidential and callers can remain totally anonymous if they wish. The nurses provide specialist medical advice as well as a listening ear, and calls from healthcare professionals are also welcomed. The charity is dedicated to providing unbiased, medically approved information and has a range of publications that look at bladder and bowel problems in more detail, explaining the causes, symptoms and possible treatment options. There is also a series of fact sheets providing a range of information from disposable and washable pads, through to catheters, chair and bedding protection, and clothing. The B&BF’s magazine, published twice a year, is a dual-purpose publication providing comprehensive information for patients and healthcare professionals. It includes clinical articles, patient stories, updates on treatments and products, policy and research news and general advice on a range of symptoms.
Interactive website The B&BF’s website (www.bladderandbowel foundation.org), developed with input from noted healthcare professionals, clinicians and industry professionals, also offers easy access to the latest information about treatments, products and management techniques, keeping the user up to date on research news and policy developments. An interactive database allows visitors to find their nearest continence clinic simply by entering their postcode. The website is also home to the largest independent database of continence products in the world and has a very active online forum, enabling people to share views and experiences.
Raising awareness We recognise that the partnership between patients and service providers is vital to improving knowledge and understanding. The B&BF will continue to promote a closer working relationship with all healthcare professionals and organisations involved, either directly or indirectly, in the care and support of people with bladder and/or bowel disorders. It is a sad fact that many people with bladder and/or bowel control problems do not seek help and instead continue to self-manage their condition (often using inappropriate products). A better understanding of the nature of these problems, and the treatments that are
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SATRA Innovation Park, Rockingham Road, Kettering, Northants NN16 9JH ■ Nurse helpline: 0845 345 0165 ■ General enquiries: 01536 533255 ■ email: info@bladderandbowelfoundation.org ■ website: www.bladderandbowelfoundation.org
Registered charity number: 1085095
available, can only serve to improve the quality of life of millions of people. Ignorance is not bliss – it is vital that those affected by, and those who care for people with, these conditions know that there is help and where they can get it. It is, therefore, essential that awareness for these conditions is raised. The B&BF continues to seek opportunities to publicise the professional help and treatments available. Awareness campaigns run by the charity offer some of the 2,000-plus continence health professionals in the UK the opportunity to support this important work. While this direct approach ensures those people already in the healthcare system receive on-going support, we also need to address the growing unmet need. The challenge is to reach those people who self-manage their condition and continue to put up with their symptoms, unaware that help is available. It is, therefore, the B&BF’s intention in 2009 and onwards to proactively seek ways to reach them. As well as initiating and securing positive media coverage, the charity also responds to enquiries from broadcast, print and online media throughout the year. The charity works with researchers to improve treatments and design innovative products for bladder and bowel disorders, and also enlists the help and support of patients to ensure their views and opinions are taken into consideration. It speaks on behalf of those affected, and those close to them, in order to influence policymakers and service providers in both the private and public sectors. It is paramount that all services meet the needs of patients.
The future The B&BF has a small but dedicated team of four members of staff and is further supported by 65 volunteers (comprising of prominent clinicians, surgeons, patients and professionals who work or have an interest in the field). With no government funding, B&BF relies solely on charitable donations, sponsorship and public and professional donations through its two membership schemes. If you would like to help support the charity or would like to know more about how we could help you, please contact us ■ Reference 1. The Bladder and Bowel Foundation. Dispelling the Myths – The Truth about Bladder and Bowel Disorders. The Bladder and Bowel Foundation, 2008. http://www.bladderandbowelfoundation.org/news-events/news/launch-of-thebladder-and-bowel-foundation.htm (last accessed 16/11/09)
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Straight talking
Your sex life after the menopause The menopause can lead to many difficulties for women, but one of the most well-hidden
Cara J Kumah RN Continence Nurse, Continence Advisory Service, Nottingham
The menopause is related to a reduction in ovarian function and oestrogen production. The average European woman will begin the menopause around the age of 50, and most women will spend one-third of their life in an oestrogen-deficient state. Low levels of oestrogen in the blood cause symptoms that include hot flushes, night sweats, depression, memory difficulties and diminished libido; and these symptoms can vary in severity. Oestrogen deficiency can also cause vaginal symptoms, such as: dryness, itching, burning, bleeding, discomfort while passing urine (dysuria) and pain during sexual intercourse (dyspareunia). There may also be symptoms of urogenital atrophy, otherwise known as atrophic vaginitis, which include: an urgency and frequency to pass urine, urinary incontinence and recurrent urinary tract infections (UTIs). Urogenital atrophy can affect up to 40% of postmenopausal women.1 However, only 25% of symptomatic women will actually seek help from their GP. Groups of women that are known to be predisposed to the more severe symptoms of oestrogen deficiency include: ● Women who have an early menopause ● Smokers ● Women who have not given birth vaginally ● Women who are not sexually active. As urogenital atrophy is associated with oestrogen deficiency, it may also affect: ● Women who have undergone surgical ovarian removal before natural menopause ● Women receiving chemo- or radiotherapy ● Breastfeeding women ● Women taking anti-oestrogen medication for the treatment of breast cancer. Research has shown that women on oral hormone replacement therapy (HRT) are more symptomatic of urogenital atrophy than those not undergoing hormone therapies.2
The role of oestrogen Oestrogen is a ‘female’ sex steroid hormone and plays a vital lifelong role in the healthy function of vaginal and urinary tract tissues. It was discovered as early as 1958 that the vagina, urethra, bladder and pelvic floor contain oestrogen receptors, but their exact function
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AJ PHOTO/SCIENCE PHOTO LIBRARY
syndromes that can result is urogenital atrophy. Cara Kumah explains more
Research has shown that women on oral hormone replacement therapy (HRT) are more symptomatic of urogenital atrophy – which affects continence – than those who are not
remains unclear.3 Without the presence of oestrogen, the vulva (external opening to the vagina) and vaginal walls become atrophic. In other words, these tissues lose their natural elasticity and become pale, fragile and shiny. Oestrogen protects muscle integrity by preventing the loss of collagen.4 This loss of elasticity results in a narrowing and shortening of the vagina. Reduced blood supply leads to shrinking and thinning of the vulval tissues. Subsequently, vaginal secretions decrease, causing dryness, trauma and pain during intercourse. This may cause sexual activity to be unpleasant and unsatisfactory. If intercourse is stopped altogether, this may lead to a permanent narrowing or fusion of the vaginal wall. Women who are sexually active report fewer urogenital atrophy symptoms and have less evidence of narrowing and shrinkage.5 Vaginal atrophy is acknowledged as a key contributor to sexual dysfunction.
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Straight talking Oestrogen decline can interfere with sexual intimacy and arousal by impairment of orgasmic sensation and genital lubrication. Loss of sexual function due to atrophic vaginal symptoms will vary from woman to woman. Research has shown that women with sexual dysfunction are nearly four times more likely to have vaginal atrophy than women without sexual dysfunction.6 For some women, it may cause personal distress, diminished selfworth and may affect the quality of their relationships.7 A vicious cycle of painful intercourse, performance anxiety, avoidance and loss of libido occurs. Oestrogen is present in the urinary urethra, pelvic floor muscle and the bladder. Loss of oestrogen results in a reduced urinary flow, incomplete bladder emptying and higher pressures within the bladder.3 This leads to urinary urgency (needing to rush to the toilet), frequency (going to the toilet a lot to pass small volumes) and incontinence. These urinary symptoms, secondary to oestrogen deficiency, may mimic other bladder disorders, namely overactive bladder syndrome, leading to misdiagnosis. It is estimated that 10–15% of women over the age of 60 experience frequent UTIs due to low levels of oestrogen. Oestrogen protects against invading bacteria by maintaining normal acidity levels in the vagina8 and maintaining levels of lactobacilli (the ‘friendly’ vaginal bacteria). Without oestrogen, the amount of lactobacilli in the vagina decreases and acidity is reduced, allowing harmful bacteria to flourish. Research has shown that vaginal oestrogen therapy restores lactobacilli, maintaining vaginal acidity and preventing UTIs.9 Perfumes, soaps, powders, deodorants, long-term sanitary product use and tight-fitting clothing can all aggravate the problem. We already know that catheter-related complications include tissue damage and inflammation, as well as catheter-associated UTIs.10 If the urogenital tissues are already dry and thin due to oestrogen deficiency this will increase the risk of catheter complications, and could lead to misdiagnosis. Urinary urgency and vaginal discomfort may be interpreted as catheter-sensory irritation.
Treatment overview HRT is a treatment option for urogenital atrophy, but may cause adverse side-effects. HRT in tablet, patch or implant form is not always necessary, and there has been increasing research undertaken on both the safety and efficacy of vaginal oestrogen therapy. Topical vaginal oestrogen therapies include hormone releasing rings or tablet pessaries (placed inside the vagina), and creams. A review of 19 trials using creams, rings and pessary tablets concluded that all of these methods appeared to be equally effective for the treatment of urogenital atrophy.9 Of these studies, 11 compared patients’ acceptability and comfort of product use. Women favoured the oestrogen releasing vaginal ring in ease-of-use, comfort and overall product satisfaction. From this abundance of research, the National Institute for Health and Clinical Excellence11 recommended topical vaginal oestrogen therapy above oral tablet or other HRT for the treatment of women with urogenital atrophy. Once treated with topical vaginal
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oestrogen replacement therapy, women are encouraged to undertake regular sexual activity to maintain vaginal health. Topical vaginal hormone therapy is considered more favourable than oral tablets because, if used twiceweekly, very little of it enters the bloodstream and so causes fewer side-effects to the body. Research suggests that vaginal oestrogen is considered safe to use over the course of one year.12 However, as this treatment may not be an option for all women (for example, women with breast or ovarian cancer), alternative therapies are readily available. Vaginal lubricants and moisturisers can be used with oestrogen replacement therapy, or as an alternative. Lubricants provide temporary measures to relieve vaginal dryness during sexual activity, but fail to have a long-term effect. Vaginal moisturisers can help maintain natural secretions and comfort during intercourse.13 Urogenital atrophy does not need to be a symptom of menopause; assessment exploring specific vaginal, urinary and sexual symptoms will help earlier diagnosis and treatment. There is a wide variety of treatments available, with topical vaginal oestrogen therapy in particular proving to be effective in treating symptoms (without unwanted side-effects). This type of therapy is available in a variety of methods according to preference. Alternative, non-hormonal therapies have also been shown to be effective in treating and relieving vaginal atrophic symptoms. Resuming sexual activity has also been shown to have positive long-term benefits for vaginal health ■ References 1. Bachmann GA, Nevadunsky NS. Diagnosis and treatment of atrophic vaginitis. Am Fam Physician 2000; 61: 3090–3096. 2. Davila GW, Singh A, Karapanagiotou I et al. Are women with urogenital atrophy symptomatic? Am J Obstet Gynecol 2003; 188: 382–387. 3. Robinson D, Cardozo L. The role of estrogens in female lower urinary tract dysfunction. Urology 2003; 62 (Suppl 4a): 45–51. 4. Castelo-Branco C, Rostro F. Treatment of atrophic vaginitis. Therapy 2007; 4: 349–353. 5. Levine KB, Williams RE, Hartmann KE. Vulvovaginal atrophy is strongly associated with female sexual dysfunction among sexually active postmenopausal women. Menopause 2008; 15: 661–666. 6. Goldstein I, Alexander JL. Practical aspects in the management of vaginal atrophy and sexual dysfunction in perimenopausal and postmenopausal women. J Sex Medi 2005; 2 (Suppl 3): 154–165. 7. Pandit L, Ouslander J. Postmenopausal vaginal atrophy and atrophic vaginitis. The American Medical 1997; 314: 228–231. 8. Raz R, Stamm W. A controlled trial of intravaginal estriol in postmenopausal women with recurrent urinary tract infections. N Engl J Med 1993; 329: 753–756. 9. Suckling J, Kennedy R, Lethaby A, Roberts H. Local oestrogen for vaginal atrophy in postmenopausal women. Cochrane Database Syst Rev 2003; (4):CD001500. 10. Getliffe K, Dolman M. Promoting Continence. A clinical and research resource. London: Bailliere Tindall, 2007. 11. Urinary incontinence: the management of urinary incontinence in women. http://www.nice.org.uk/cg40 (last accessed 26/10/09) 12. Rioux JE, Devlin C, Gelfand MM, Steinberg WM, Hepburn DS. 17beta–estrodiol vaginal tablet versus conjugated equine estrogen vaginal cream to relieve menopausal atrophic vaginitis. Menopause 2000; 7: 156–161. 13. Willhite L, O’Connell M. Urogenital atrophy: prevention and treatment. Pharmacotherapy 2001; 21: 464–480.
Key points ● Urogenital atrophy can cause vaginal and urinary symptoms, as well as sexual dysfunction, in postmenopausal women. ● Topical vaginal oestrogen therapy can provide safe effective treatment with minimal side-effects.
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Resources
Spinal Injuries Association
Alzheimer’s Society
The Stroke Association
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The Spinal Injuries Association (SIA) is a national charity for people paralysed through trauma or illness. We offer support and assistance from the moment of injury throughout the rest of a paralysed person’s life. Incontinence of both bladder and bowel is something that almost always affects the 40,000 people in the UK who have sustained SCI (spinal cord injury) and, as part of our service, we are able to offer advice on how to manage this problem. Community Peer Support is a newly available service that provides assistance, advice and support to people with SCI, and their families, in non-specialist centres throughout England, Wales and Northern Ireland. This gives you the chance to talk to someone who understands your
situation, even if you are not being treated at a Spinal Injuries Centre. The SIA also provides a range of publications to support people, including a bimonthly magazine. We also have an education arm, the ‘SIA Academy’ which provides resources and training on the causes and consequences of SCI. To find out more about the work of the SIA visit our website. For confidential advice, information and support, call the Freephone number, which is open from 9.30 am to 4.30 pm, or text ‘SIA’ and your enquiry to 81025. Tel: 0845 678 6633. Freephone: 0800 980 0501. email: sia@spinal.co.uk website: www.spinal.co.uk
Alzheimer’s Society is the UK’s leading care and research charity for people with dementia and those who care for them. There are 700,000 people with dementia in the UK, with numbers set to rise to one million by 2025. Through a network of around 245 branches, Alzheimer’s Society provides information and support for people with all forms of dementia and those who care for them. It runs quality care services, advises professionals and campaigns for improved healthcare, social care, and greater public awareness and understanding of dementia. The society also funds an innovative programme of biomedical and social research in the areas of cause, cure and care. As dementia progresses, people will experience problems with incontinence. Many people find it very hard to accept that they need
help from someone else in such an intimate area of their life, even (or sometimes, especially) if the help comes from someone very close to them. However, every individual will react differently. Commonly, people with dementia go to the loo in the wrong place because they are confused about their surroundings. Some tips to help people with dementia include: making sure the person knows where the toilet is; making sure that there are no obstacles in the way; leaving the toilet door open when it is vacant and making sure the toilet is easy to use. Using contrasting colours to decorate a toilet, such as a black seat and a white pan, can make it easier for people with dementia to see it. Tel: 0207 423 3500. email: enquiries@alzheimers.org.uk website: www.alzheimers.org.uk
Over a quarter of a million people living in the UK suffer from disabilities that are caused by a stroke. The Stroke Association’s main focus is to prevent stroke and to give support to people who have had a stroke, and their families. We campaign to raise awareness for strokes and to fund research into prevention, treatment and rehabilitation. It is estimated that about half of all people admitted to hospital after a stroke will have some problems with bowel or bladder control. About 15% of people who have had a stroke will have ongoing continence problems a year after their stroke. This is often a result of nerve damage, loss of muscle control, change of diet
and being bed-bound. We offer support and advice on how people can adapt to this problem and work towards regaining control. As well as producing publications, including patient leaflets and Stroke News (a quarterly magazine) we also have an online discussion forum, TalkStroke, where stroke sufferers can ask questions, find answers and share information on problems such as incontinence. You can also call our confidential Stroke Helpline (open Monday to Friday, 9 am to 5 pm). Tel: 020 7566 0300. Helpline: 0845 3033 100. email: info@stroke.org.uk website: www.stroke.org.uk
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Forum
In conversation with … If you have a question about managing incontinence, our Editorial Board members are here to help. We want to hear from you, so write to us at the address below Ann Winder RN Senior Continence Specialist, Park Drive Health Centre, Baldock
I already use your SpeediCath without any problems. However, this is no use when driving long distances or engaging in pursuits such as fishing. In issue 17 I saw that there are sheaths available that are used with a bag. Can I install one of these on a casual basis – used when needed – and removed at my convenience? I have no continence problems at night, but adjust my daytime activities according to the availability of a toilet – not always easy! Mr M, Kent Unfortunately, I am not aware of your condition and am unsure if you are able to pass urine or not. Therefore, I recommend you see your GP or specialist about this. However, if you are able to pass urine safely for some of the time I can see no problem in using a sheath for your fishing trips ■ I have worn a 25 mm sheath catheter for nearly nine months. It has been very uncomfortable the last three months, as it makes a mark on the underside of my penis. I think this is due to the rim of the sheath cutting into me. As a result, I have to wear pads for ten to 14 days. I use Sudocrem® on the wound, and if I go out for the day I try the sheath again. Every time I take the sheath off the wound returns, so I revert to pads. Is this due to the skin having been scarred and not healing permanently? Mr R, Leicestershire I am concerned that you do not have the correct size or, more importantly, the correct length of sheath. If there is a ‘roll’ at the top of
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the penis it will cause damage to the skin. You could end up with a nasty wound that will not heal easily and may ulcerate. Sudocrem® is not appropriate to use with a sheath, as it will prevent the adhesive from working. There are healing wipes available, applied before the use of a sheath, to protect the skin. I cannot tell you if 25 mm is the correct length sheath for you, but it does not need to be really tight fitting. Please see a specialist about this ■ I am writing to see if you have any information about interstitial cystitis, which I have been struggling with for ten years. I had four months on Pentosan®, but I saw no improvement. I also got a backache and cold hands, so I have now stopped taking it. I have to use the toilet every hour around the clock, as the pain of the cystitis wakes me up at night. It was arranged for me to have dimethyl sulfoxide, which I have found a great relief, and for six weeks I had no trace of pain – I could shop for two hours and never worry about the toilet. However, I am sorry to say it all came back again. I have found a book from The Cystitis and Overactive Bladder Foundation that is very helpful. At the moment I am
trying the herb ‘slippery elm’, but nothing is happening. I would be very grateful for any advice.
Mrs M, Merseyside Interstitial cystitis is very difficult to treat and there are a lot of different ways to relieve the symptoms. I am sure you are aware of most of them. A new technique is a long-term high dose of antibiotics or heparin into the bladder to encourage the bladder wall to bleed, thus ‘shedding’ the problem area. The best advice would be to contact the Bladder and Bowel Foundation as it also hosts the charity for interstitial cystitis sufferers (see page 10) ■ I have a problem with passing urine. I have been to the hospital on numerous occasions and been told my prostate is OK. Each time I am supplied with catheters. Now this is where the problem comes – my penis closes up tight at the end within two days and it is very painful to insert the catheter. My doctor gave me lignocaine hydrochloride with chlorhexidine gel 2%, and a 0.25% syringe to take away the pain, but it is just as painful to insert this as the catheter. The hospital specialist says there is not much that I can do about this. I think if I could obtain something that I could leave in the end of my penis, it might solve the problem. Is this a possiblity? Mr P, Lancashire I think you need a specialist to discuss this with you, as a stricture should not close over in a few days. Occasionally it is the type of catheter or dilator you use that requires changing. I suggest you see your local continence specialist who will assist you ■
Address your correspondence to: The Editor,
continence care Hayward Medical Communications 8–10 Dryden Street, London WC2E 9NA email: edit@hayward.co.uk The information provided on this page is not intended to be, nor is it to be treated as, a substitute for professional medical advice relative to a specific medical condition or question. Therefore, the Editor, author, publisher, or any of their respective employees, officers and agents, accept no liability for the consequences of any inaccurate or misleading data, opinion or statement. Always seek the advice of your qualified healthcare professional regarding your medical condition.
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