Charter Journal Continence Care Issue 22

Looking at the pros and cons of using a suprapubic catheter ... page 8

Will your infection need treating? ... page 12

Issue 22 Summer 2010

continence care

Regaining control Managing an overactive pelvic floor

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Contents

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Practical care Calm your overactive pelvic floor

by Maeve Whelan

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Straight talking Looking at the pros and cons of using a suprapubic catheter

by Ann Winder

Personal experience 10 My life with a Mitrofanoff stoma

by Melanie Bunting Coloplast 11 Don’t let incontinence stop you from making the trip of a lifetime

by Carole Warren Medical insight 12 Does your infection need treating?

by Sunil Mathur 14 Resources

Comment

What the ‘new politics’ mean for the NHS Politicians always seem to talk up their commitment to the NHS. In 2006, David Cameron, of the Conservative party, now our Prime Minister, said: ‘The NHS is an expression of our values as a nation.

It is a symbol of collective will, of social solidarity’. In 2010, Nick Clegg, of the Liberal Democrats, now our Deputy Prime Minister, stated: ‘The NHS is a source of pride because it’s built on the basic British principle of fairness’. In 2008, Gordon Brown, the then Prime Minister, declared that ‘The NHS of the future will be more than a universal service – it will be a personal service too’.

As usual, with much hyperbole, all politicians have essentially been promising us the same thing – a better NHS. Let’s just hope that we get some results this time.

Now the election has been resolved, albeit in unusual circumstances, we are bracing ourselves to see what the future will hold.

In the short term, I predict huge cuts across all healthcare services and redundancies. Many nurses are leaving the profession and not being replaced.

In the short There is criticism of the term, I predict huge cleanliness of hospitals and health centres, the cuts across all lack of doctors and healthcare services nurses. The healthcare and redundancies staff we have at the moment are already stretched to breaking point in most areas. I am primarily concerned with the disappearing continence services nationally. This knee-jerk reaction to money and budgets has left some areas without crucial services.

Unfortunately, continence services have never been a hot topic or ticked any of the ‘must do’ boxes for UK governments. I hope the new coalition government will see that the continence service is one of the keys to all other services being successful. Everyone needs to wake up to the fact that the problems of bladder or bowel issues, whether in the young or the old, cause huge

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Forum 15 Q&A

Cover picture PLAINPICTURE/PONTON

CHARTER CONTINENCE CARE ISSUE 22

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knock-on effects to social- and health-related issues. With over 12% of the population – and this is just the tip of the iceberg – experiencing continence problems, we need to change the attitudes of everyone towards these ‘toileting’ issues. Adverts promoting wetness as normality do not help matters, especially when sufferers can and should seek help and be treated for their difficulties.

I believe in patient power and we must not allow the new wave of politicians to forget this topic, or their promises to improve the NHS. The times ahead will certainly be tough for everyone, but I believe the NHS can survive. I want to thank all of those who have written to me at Charter continence care with their problems, and also their kind words. In each issue I thank the authors who write for us, and I do appreciate their hard work, but I am sure they will not mind me thanking the publishing team who work so tirelessly ‘behind the cover’ to ensure that I am following the schedule and finding suitable authors to bring you such a good magazine.

In this issue, you will find some very interesting subjects and, I hope, some ideas that will help towards the care and understanding of your specific problems. It was great to receive a wonderful letter from a reader, Mr W, on crosscountry skiing with incontinence, which is also included in this issue. I hope this encourages more people to write in with their experiences, however unusual! For example, if anyone experienced any difficulties obtaining continence products as a result of the volcano and plane delays, we would like to hear from you.

It was good to read Sunil Mathur’s piece on infections.

I am often asked why the doctor does not treat some infections – now we know the answer. I also thank Melanie Bunting for her wonderfully insightful piece on living with a Mitrofanoff stoma. The article from Maeve Whelan on overactive pelvic floor explained so much that I am sure the details will match some of our readers’ symptoms.

I look forward to the next issue being published and opening the new letters that I hope I will receive from you.

Ann Winder, Editor The Editor Charter continence care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA email: edit@hayward.co.uk

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 Lead Nurse Continence, Tynemouth Road Health Centre, Tottenham 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, Department of Urology, Bristol Royal Infirmary 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. Sales Director Ian Arkless.

Managing Editor Robin Jones. Chief Sub Joel Barrick.

Senior Sub Editor Anne-Claire Bouzanne. Sub Editor Christian Bell.

Editorial Assistant Danielle Colyer. Art Editor Richard Seymour.

Publications Co-ordinator Hayley Mayes.

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 © 2010 Hayward Group Ltd. All rights reserved. ISSN 1745-9982.

Printed by Turners.

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CHARTER CONTINENCE CARE ISSUE 22

Practical care

Calm your overactive pelvic floor Exercises for pelvic floor muscles normally concentrate on making them stronger,

Overactive pelvic floor (OAPF) is a relatively new concept in pelvic floor rehabilitation. OAPF is overactivity of the muscles and the connective tissue (fascial tissue) of the pelvic floor from front to back and side to side.

Pelvic floor muscle rehabilitation was first described in 1948 by Arnold Kegel,1 a gynaecologist, and, since then, pelvic floor strengthening exercises have been known as Kegel exercises. Kegel exercises focus on strengthening only, but what if your pelvic floor does not need to be strengthened? What if your muscles are already very tense and need to be released before they are strengthened? What if the muscle is already short? This is what happens to other muscles in the body when they are injured; they tense up and, if left tense for too long, there will be shortening of the muscle in response to this prolonged period of holding. Consider the biceps muscle over a flexed, injured elbow joint; strengthening would never be considered before full extension of the muscle is achieved. Any attempts to strengthen the pelvic floor should be approached using the same principles of muscle rehabilitation.

The pelvic floor The pelvic floor can be seen as a ‘hammock’ attached to the pubic bone at the front, the tailbone (coccyx) at the back and the walls of the pelvis on either side. The pelvic floor is not uniform throughout and, in fact, the bulk of it is located to the back and sides of the rectum.

The pelvic floor contracts from back to front.

Think of squeezing the muscles around the back and then drawing the muscles upwards and forwards to the pubic bone at the front; this should result in the muscles reaching the neck of the bladder and a good contraction. The pelvic floor not only has this squeezing and lifting action, but also provides shelf support for the bladder, bowel and, in women, the uterus.2 When undertaking pelvic floor rehabilitation, there are a few considerations with regard to the theory and physiology of muscle. The intact pelvic floor has fascial, as well as muscular, support. The fascial tissue forms a mesh overlying the muscles and connects to organs and bone. Muscle or fascia can be traumatised

CHARTER CONTINENCE CARE ISSUE 22

PLAINPICTURE/PONTON

but what if the muscles are already too active? Maeve Whelan tells us more

or torn during childbirth. If there is a tear of the muscle, then the rest of the pelvic floor will be overloaded and the ability of the muscle to contract will be reduced.3 The force with which a muscle contracts depends on its length; the force will drop off as a muscle approaches its fully-stretched or fully-shortened position and it will be greatest in its middle position.

A muscle will expend excessive energy in the fully-shortened position when trying to further shorten.4 The normal upwards and forwards action of the pelvic floor may be altered in direction,5 and the height of contraction, which has been described as one to a few centimetres,6 may be significantly reduced. The pelvic floor muscles to the front may be too active, with a predominant squeeze to the front and absence of what is called the cranio-ventral lift from behind. Instruction to ‘just squeeze harder’ in attempts to achieve rehabilitation may in fact be further encouraging a dysfunctional movement of the pelvic floor muscles.

The function of your pelvic floor is to control the bladder and the bowel not just for filling, but for emptying too. There are big differences here. Where incomplete emptying

Muscle rehabilitation exercises can restore the function of your pelvic floor

Maeve Whelan BA SMISCP Specialist Chartered Physiotherapist, Milltown Physiotherapy Clinic, Dublin

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Practical care of the bladder is the main problem, it will not help to strengthen your pelvic floor, whereas, done correctly, strengthening of the pelvic floor will improve control of involuntary loss of urine.7 Similarly, if control of stool is the problem, then strengthening your back passage will be recommended; however, if inefficient evacuation of stool is the problem, then further developing your pelvic floor in the same pattern cannot help; balance of the pelvic floor should be achieved before strengthening is undertaken. In sexual function, strengthening of the pelvic floor is described as a way of enhancing sexual pleasure, but, if your pelvic floor is very tight in the first place, then intercourse may not be possible until it is released.

Developing a dysfunction Damage to muscles or fascia from trauma, inflammation, straining or chronic holding over a period of time can lead to shortening of the muscles and development of trigger points – a ‘hyperirritable spot that is painful on compression and that can give rise to characteristic referred pain’4 – in the muscles and fascia. A muscle with a trigger point may become increasingly tense and short, and this will have a knock-on effect on neighbouring muscles. Factors worsening a ‘hyperirritable spot’ could be poor posture or the presence of musculoskeletal problems.

The onset of pain, fear of worsening symptoms and further anxiety can lead to further holding and more trigger points, causing the cycle to continue.8 This pattern has been described in pelvic girdle pain, where instability in the pelvis over a prolonged period can cause pelvic floor overactivity, contributing to the dysfunction, but not in itself painful.9 There could also be a congenitally short pelvic floor (in other words, when the pelvic floor is short from birth) that is more predisposed to dysfunctions.10 In a recent study, the existence of abdominal myofascial tension with urological chronic pelvic pain conditions was described in 89% of patients.11 In pelvic floor dysfunction, the following symptoms may develop.

Female dysfunction Incontinence Incontinence of urine is associated with weakness of the pelvic floor mucles, as well as defects in the fascial supporting tissue.12 It is often assumed that this weakness is secondary to muscles lacking tone or having lost their attachment following childbirth. It is, however, frequently the case that the muscles are tense or have shortened following trauma and that weakness is a result of this shortening with high tone rather than low tone. In this case, release is indicated before strengthening.

Bladder overactivity A pelvic floor contraction may not be sufficient to counteract the overdeveloped bladder muscle as it causes frequency and urgency of urine, so that your pelvic floor and the bladder work even harder to compensate. This

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Figure 1. The diaphragm descending during inhalation

Figure 2. The diaphragm ascending during exhalation

cycle continues and both muscle groups become further overdeveloped, causing more frequency and urgency.

Incomplete emptying Incomplete emptying of either stool or urine is a common problem. Overactivity of the pelvic floor muscles can be part of this problem. In bowel dysfunction, a paradoxical puborectalis contraction (where the pelvic floor tightens instead of releasing when trying to defecate), or anismus (where the anal sphincter muscle is too tight) can occur.

With OAPF, there can be a problem with initiation of urine flow, or with complete emptying at the end of flow as contraction of the detrusor (bladder) muscle is out of balance with the pelvic floor.

Chronic pelvic pain There are female chronic pelvic pain disorders associated with OAPF. Vaginismus is overactivity of pelvic floor muscles making intercourse either painful or impossible.

Vulvodynia and pudendal neuralgia will both cause nervetype sensitivity of vulval or surrounding tissue and can present internally or externally. Proctalgia fugax is the name of a disorder associated with the muscle of the rectum, which presents with shooting pains in the rectal region.

Male dysfunction Symptoms of chronic prostatitis Prostatitis is an inflammation of the prostate gland in men. Some men can spend years suffering with symptoms that mimic prostatitis (pain, urgency, frequency and interrupted flow when passing urine). Often, upon testing for prostatitis, urine samples are clear and the prostate does not shown signs of any abnormality.13 On examination, however, men who have produced clear

CHARTER CONTINENCE CARE ISSUE 22

Practical care urine samples can have OAPF, and palpation (examination by touching/pressing) of their pelvic floor muscles can reproduce their symptoms of prostatitis.

What to do about it Pelvic floor release If you can learn how to breathe deep into your lungs by using your diaphragm (diaphragmatic breathing), rather than breathing shallowly by using your ribcage, and can soften your stomach (abdomen) at the same time as the inbreath, then your pelvic floor will release more easily. ● Sniff in – this is a quick, but soft, in-breath through the nose; this will make the diaphragm descend. This must be learned through repetition of gentle effortless in-breaths.

It can be difficult, but the abdomen must be completely relaxed or it will not allow the diaphragm to descend (see Figures 1 and 2). The pelvic floor will not let go if the upper abdomen continues to be held with tension. ● Flop out – the abdomen flops or fills all the way out on the in-breath. The fingers are placed on the upper abdomen to check that it stays soft. ● Drop down – the pelvic floor drops or releases at exactly the same time as the in-breath. It is a very small movement directed backwards to the base of the spine and you must concentrate very hard in order to feel it. It does not matter if this is not felt immediately, you will be developing the connection just by practising it.

Spend five to ten minutes practising diaphragmatic breathing twice per day. Your upper abdomen and pelvic floor are both strong emotional holding centres, and will hold automatically once this pattern of breathing has been set up. Note where the tension points in your abdomen are and try to build an awareness of how the pelvic floor is held. This can be done through palpation of the tension points, especially through the upper abdomen.

Pelvic floor contraction You should only start to strengthen the pelvic floor once you have practiced the release. It is always a good idea to release the pelvic floor for a few minutes first in any exercise session, before doing any strengthening, to maximise the performance. Strengthening can be commenced as follows. ● Try to isolate your pelvic floor muscles by thinking of stopping yourself from passing wind, pull in from the back passage upwards and forwards. ● Do not let the chest lift, do not hold your breath and do not brace your stomach. ● Hold for just a couple of seconds and try to isolate the release by practicing the ‘sniff in, flop out and drop down’ technique above; in other words, try to release the pelvic floor on an in-breath. The tip here is to breathe out while still holding the position, thus emptying the lungs and making the in-breath possible on the release. The progression is to hold for longer, but the release should always be on an in-breath. ● Do ten repetitions twice a day after breathing practice.

The release should be 100% of the contraction. It will be tempting to revert to putting the emphasis on squeezing

CHARTER CONTINENCE CARE ISSUE 22

harder and then just letting go. A lot of concentration is required to let go completely. An improved range will come from a better previous release and not just from squeezing harder. These exercises can be found on the pelvic physiotherapy website.14

Conclusions A range of symptoms can present with pelvic floor dysfunction, and the basic principles of muscle rehabilitation should be applied to the pelvic floor. Optimal strengthening will not take place with the muscle in either inner-shortened or outer-lengthened range, or where taut bands or trigger points are present. Contraction should be followed by 100% release, with much emphasis on the release. Balance must be present for strengthening to be optimal and for function of the pelvic floor to be restored ■ References 1. Kegel AH. Progressive resistance exercise in the functional restoration of the perineal muscles. Am J Obstet Gynecol 1948; 56: 238–248.

2. Strohbehn K, Ellis J, Strohbehn J, DeLancey JO. Magnetic resonance imaging of the levator ani with anatomic correlation. Obstet Gynecol 1996; 87: 277–285.

3. Ashton-Miller JA, DeLancey JOL. Functional Anatomy of the Female Pelvic Floor. In: Bø K, Berghmans B, Morkved S, van Kempen M (eds). Evidence-based physical therapy for the pelvic floor: bridging science and clinical practice. Edinburgh: Churchill Livingstone, 2007.

4. Simons DG, Travell JG, Simons LS. Myofascial Pain and Dysfunction: The Trigger Point Manual: volume 1. Upper Half of Body. London: Williams and Wilkins, 1999.

5. Jones RC. Ultrasound. In: Laycock J, Haslam J (eds). Therapeutic Management of Incontinence and Pelvic Pain. London: Springer-Verlag, 2008.

6. Bø K, Sherburn M. Visual observation and palpation. In: Bø K, Berghmans B, Morkved S, van Kempen M. Evidence-based physical therapy for the pelvic floor: bridging science and clinical practice. Edinburgh: Churchill Livingstone, 2007.

7. Bø K, Talseth T, Holme I. Single blind, randomised controlled trial of pelvic floor exercises, electrical stimulation, vaginal cones, and no treatment in management of genuine stress incontinence in women. BMJ 1999; 318: 487–493.

8. Weiss JM. Pelvic floor myofascial trigger points: manual therapy for interstitial cystitis and the urgency-frequency syndrome. J Urol 2001; 166: 2226–2231.

9. Pool-Goudzwaard A, van Dijke GH, van Gurp M et al. Contribution of pelvic floor muscles to stiffness of the pelvic ring. Clin Biomech (Bristol, Avon) 2004; 19: 564–571.

10. FitzGerald MP, Kotarinos R. Rehabilitation of the short pelvic floor. II: Treatment of the patient with the short pelvic floor. Int Urogynecol J Pelvic Floor Dysfunct 2003; 14: 269–275; discussion 275.

11. Kotarinos R, Fortman C, Neville C. Physical findings in patients with urologic chronic pelvic pain syndromes. Proceedings of 39th Annual Meeting of International Continence Society 2009; 28: 911–912. http://www.painful-bladder.org/pdf/ 2009_ICS_SanFrancisco.pdf (last accessed 14/01/09) 12. DeLancey JO. Stress urinary incontinence: Where are we now, where should we go? Am J Obstet Gynaecol 1996; 175: 311–319.

13. Wise D, Anderson RU. A headache in the pelvis: a new understanding and treatment for prostatitis and chronic pelvic pain. Occidental, CA: National Center for Pelvic Pain Research, 2006.

14. Pelvic physiotherapy. Exercise overview. http://www.PelvicPhysiotherapy.com/Exercise_Overview.html (last accessed 14/01/09)

Key points ● The concept of an overactive pelvic floor (OAPF) is relatively new in pelvic floor rehabilitation and exercises have traditionally been aimed at strengthening muscles rather than relaxing them. ● A diverse range of symptoms can present with pelvic floor dysfunction; the basic principles of muscle rehabilitation should be applied to the pelvic floor, as with any other part of the body.

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Straight talking

Looking at the pros and cons of using a suprapubic catheter A suprapubic catheter provides an alternative to the traditional urethral catheter. Ann Winder explores the differences between, and advantages and disadvantages of, each

X-ray of a normal bladder.

A suprapubic catheter is inserted directly into the bladder through the abdomen

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is because there can be a potential risk of bowel adherence to the bladder.

A suprapubic catheter (SPC) is a tube inserted into your bladder directly through the abdominal wall to drain the urine, generally when a urethral catheter (the urethra is the tube through which urine is passed) is not appropriate or suitable. While there is debate about putting an SPC into place as the first course of action (called first-line management), especially if artificial drainage will be required long term, it is generally thought that this will protect the urethral integrity by not overstretching the urethra.

The procedure is usually carried out in hospital by a doctor, but there are a few specialist nurses who perform this procedure in urology centres. The actual insertion will be performed under either a general anaesthetic, an epidural or a local anaesthetic. It cannot be performed if your bladder cannot hold enough urine for the doctor to feel the bladder through the abdominal wall. There are now improvements in the equipment used, which make the whole procedure less traumatic and safer for the patients and less difficult for the doctor to perform.

An SPC cannot be inserted if there are reasons why the surgery should not be performed (called contraindications), such as cancer, blood in the urine (haematuria) and prior lower abdominal surgery or pelvic floor surgery. This

Comparison of SPCs and urethral catheters Urethral catheters When a urethral catheter has been in place for a period of time, your urethra can become damaged by friction and the stretching the catheter causes. In addition, the Foley catheter balloon, used to hold the catheter in place, can cause trauma to your bladder neck, leading to leakage. There is also a risk of your catheter being dislodged when you move and catch the tube accidentally, dislodging or pulling the catheter out with the balloon inflated; this can damage the ring of muscle (sphincter) around the neck of your bladder.

The more immobile you are, the more you will tend to sit on the urethral catheter, preventing drainage. There is also a risk of your catheter being forced closed by clothing.

Particularly when transferring from one seat to another, you can get your trousers in a twist in the groin area and, again, this will prevent drainage down the catheter tube.

Women in particular have a high risk of bowel bacteria migrating into the bladder, because of the close proximity of the anus and the urethra, but this is a risk for men too. Infections are always a high risk when any catheters are used, but the urethral catheter has been proven to have the highest risk.

MEDICAL BODY SCANS/SCIENCE PHOTO LIBRARY

Ann Winder RN Senior Continence Specialist, Park Drive Health Centre, Baldock

Advantages of suprapubic catheters The benefits of the SPC include less risk of infection and of poor drainage due to a urethral catheter becoming tangled up or restricted in clothing and when transferring from the bed to a chair.

SPCs also improve relationships by freeing the genital area, allowing sexual activity.

An SPC provides a safeguard, in that the urine can escape via the urethra, thus preventing

CHARTER CONTINENCE CARE ISSUE 22

Straight talking A suprapubic catheter in place in a male patient

DR P MARAZZI/SCIENCE PHOTO LIBRARY

pressure inside the bladder, which carries a risk of reflux into the kidneys. If it is hoped that normal voiding has returned, this can, in some cases, be easily assessed by enabling your ability to pass urine naturally while ensuring a route of draining retained urine remains. You can be trained to change your own catheters, as SPCs are more accessible than urethral catheters, and changing an SPC can be less embarrassing if a carer or relative is trained to change your catheters routinely.

The site of the tube enables a much wider (larger-bore) catheter to be used. Therefore, if you suffer from ‘grit’ in your bladder, this will drain more freely, reducing the catheter blockages and all the stress involved with these situations.

A further advantage of using an SPC is that the procedure is reversible.

Problems with suprapubic catheters You may experience difficulty around the site of the SPC; this is especially likely if you are overweight, as the skin tends to be more stretched. You may suffer from soreness around the site and it is possible for the site to become infected. You should always make sure that your catheter site is kept dry and clean. Granulated tissue is the special tissue that forms during wound healing. There may be over-granulation around the site of your catheter insertion; this will require treatment if it develops.

Following the procedure to place the SPC, you may experience sensitivity and overactivity in your bladder, which can manifest itself in discomfort or as urine leakage via your urethra. This should improve over a few weeks, but may require a medication to relax your bladder (called an anticholinergic). As with all indwelling catheters, there is a risk of changes that are damaging to genes (cacogenic) in your bladder as a result of artificial catheter drainage.

It is advisable to have your bladder checked internally to inspect its condition. These internal checks are done with a miniature ‘camera’, in a process generally called endoscopy, and called cystoscopy when it is specifically the

Key points ● A suprapubic catheter (SPC) is inserted directly into the bladder through the wall of the abdomen to allow urine drainage. ● An SPC presents less risk of infection and fewer complications regarding drainage and comfort than a urethral catheter. ● There may be problems with sore skin around the site of an SPC, and there may be initial oversensitivity of the bladder after placement. ● An SPC requires careful maintenance, and good hygiene and thorough hand-washing are essential when dealing with your catheter.

CHARTER CONTINENCE CARE ISSUE 22

The benefits of the ❛ suprapubic catheter include less risk of infection and of poor drainage

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bladder that is being checked. A cystoscopy requires you to be admitted to hospital as a day case. In some cases, you may have to take a mild anaesthetic.

Looking after your bladder and your catheter An SPC requires careful maintenance to ensure that it remains in the best condition. Good hygiene and thorough hand-washing when dealing with your catheter are essential.

A balanced diet will help to ensure that weight gain is not an issue, and fluid intake of at least two litres a day will help to flush through your kidneys and bladder, protecting the kidneys and reducing urine infections. If swallowing is a problem, try fluids in a jelly form as these slide down easily; you can choose savoury or sugar-free jellies depending on your taste. It is best to ensure that medication is reviewed regularly, as some medication can affect bladder and bowel function. Maintain a good bowel pattern and aim to prevent constipation, as this can interfere with catheter function.

Use of a thigh strap or closely-fitting underpants can stop your catheter being pulled and minimise the soreness around the catheter site. It is more beneficial not to place a dressing on the catheter site, as this only increases the risk of soreness and infection.

A catheter valve is a benefit to urine drainage as it will help with the natural flushing process of the bladder and releases you from the need to use drainage bags ■

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Personal experience

My life with a Mitrofanoff stoma Melanie Bunting has had a Mitrofanoff stoma since 2007. Here, she gives readers some fascinating insights into her experience of self-catheterising using an abdominal catheter

Melanie Bunting Mitrofanoff stoma patient

In July 2007, my urethra was removed, along with a carcinoma at its lower end, and my appendix (normally considered useless!) was used to form a Mitrofanoff stoma connecting my bladder to my front abdomen, through which I can self-catheterise. At first I was staggered when it was suggested, but then I saw an advantage: no more need on countryside walks to squat down, avoiding the nettles!

For me, surgery was the best option. My consultants gave me all the information that I needed and this, with a little internet research, ensured I was confident that I’d made the right decision. I kept my bladder, which meant the cancer had not spread.

After the operation When I got back to the ward after ‘step-down’, I went through some incredible emotions. First, relief, though when I looked down at my body – all those tubes – I felt like a human Pompidou Centre! Then, bizarrely, I felt jealousy. Other patients were going to the toilet and I thought, ‘They are doing something I can never do ever again’. When I sat on the loo to do number two, the urge to wee, just once more, was so strong!

Strongest, though, was feeling protective – I felt a duty of care towards MY Mitrofanoff. It had gone very well, but I still thought, ‘What if anything goes wrong? I must make sure that everything is done right …’ (to the point of seeming somewhat rude, as if I was telling nurses how to do their job). Happily, medics and family were very understanding and helpful.

After five weeks’ recovery at home, I went back into hospital, where the next milestone was catheterising myself. I’d thought I’d be able to use one whenever I wanted, so I was amazed when the consultant advised me to catheterise only four to six times per day, plus to drink two litres of liquid daily! At that time I could go a dozen times a day and hardly drank one litre, let alone two. The catheters were longer than I’d thought, and needed drinkable-quality water poured into them to activate the hydrophilic gel.

How many public toilets have you come across with drinkable-quality water? We got round this by putting together a kit of all that I needed, including little bottles of tap water.

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Nowadays, I use ready-gelled catheters and I am drinking two litres a day. I have ‘retrained’ my bladder to catheterise about five or six times per day, realising it would be more convenient the fewer times I had to go – less kit needed plus less wear on the Mitrofanoff, so it will last as many years as possible.

The first time I self-catheterised, I had seven people (nurses and family) watching me – no pressure! But I felt OK, as you don’t show anything private off. I’ve demonstrated to medical staff, family and friends; my daughter said it was like a conjuring trick! A side-effect of having part of your gut attached to your bladder is that the gut’s lining will produce mucus, which is occasionally passed as white blobs. This isn’t a cause for concern, but can look alarming.

Living with a Mitrofanoff I’m super careful about washing and gelling my hands, and there have been few problems, but there have been occasions when I had difficulty inserting the catheter. The first time I felt awful, like I’d failed everyone, but my better half stayed calm and we drove to the hospital where the nurse inserted a Foley catheter … instant relief!

With experience comes confidence; now, if it sticks a bit, I just relax, angle it differently and re-insert. My urologist does an annual endoscopy check; it’s fascinating to see the inside of the appendix and the bladder. Mucus blobs, magnified, look like alien life forms!

I think that being positive and focusing on the advantages, such as the great support that I’ve had from consultants, medical staff and family, has enabled me to quickly accept what was a major change and to make having a Mitrofanoff a part of my normal life much easier. And I’ve certainly benefited from a better liquid input and output regime, resulting in fewer of the headaches I used to suffer from, which were possibly due to mild dehydration. Plus no more worries about potential future incontinence.

None of this has prevented me being active.

As well as walking, I have taken up field archery and running again. In May 2010, I ran Cancer Research UK’s ‘Race for Life’, which I had last entered in 2006, before my own challenge began – a real milestone passed! ■

CHARTER CONTINENCE CARE ISSUE 22

Don’t let incontinence stop you from making the trip of a lifetime After being left wheelchair-bound and incontinent due to multiple sclerosis, Carole Warren never thought she’d make it back to St Lucia, where she got married

David and I got married in St Lucia 15 years ago and, unfortunately, four years later I was diagnosed with primary progressive multiple sclerosis. My condition has now reached the stage where I am incontinent and wheelchair-bound, to the extent that I have no use of my legs whatsoever, and have to be assisted with eating, drinking and taking my medication. David, who has had to take early retirement to be my full-time carer, has to catheterise me approximately every three to four hours.

St Lucia, where Carole and her husband David I have used SpeediCaths on a regular basis were able to travel for a number of years and, towards the end of thanks to SpeediBag 2009, David first noticed the SpeediBag advert in the Charter continence care journal. fact that David did not need to lift me to remove any Around the same time, we had a discussion about the clothing during the catheterisation process. Quite simply, logistics of, possibly, doing a long-haul flight. without SpeediBag Compact, the toileting exercise would We have always nurtured a longing to return to where we have been a total nightmare – they literally made the married, but I have been reluctant to give consideration to any difference between being able to go on such a holiday or not. kind of long-distance travel – for obvious reasons. However, Finally, and particularly from David’s perspective, these theoretically, the new SpeediBag appeared to offer a solution bags have enabled him to take me to far more places and have and, having ordered a sample pack, an experiment soon removed the need to lift me for toileting. Previously, we had proved our beliefs to be correct. So we took the bull by the to carefully research where we went to ensure there was a horns and booked flights for February of this year for a twodisabled toilet – or that the house we were going to would week holiday at the same resort where we had married. have a toilet big enough for a wheelchair! Now, all we need is Careful planning incorporated a one-night stay at an a small private area – and there is no need to carry a heavy airport hotel prior to a 10 am flight the next day – and so the turning device around with us in the car.

SpeediBag experience commenced. I successfully used two In a nutshell, SpeediBag is a fantastic invention and has bags in the hotel and another in the airport departure opened up opportunities we never thought possible! We lounge disabled toilet – all without a hitch. were able to take the romantic holiday of a lifetime.

My main worry had been the narrow aisles and tiny onboard toilets, but we had been reassured by the airline that the cabin crew would be able to assist in providing a ‘private area’ for toileting needs. They were as good as their word, and David was able to easily move me around the plane on the narrow on-board wheelchair and the crew ‘screened off’ the area immediately outside a toilet in the premium economy section of the aircraft. Of vital importance was the

Thanks Coloplast. rds a g e r d n i k r ou h t i W

n e r r a W d i v a D d n Carole a

CHARTER CONTINENCE CARE ISSUE 22

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JAMES FORTE/GETTY IMAGES

15 years earlier. However, thanks to SpeediBag Compact she was able to make it

SCIMAT/SCIENCE PHOTO LIBRARY

Medical insight

Microscopic picture of urinary bacteria

Does your infection need treating?

Urinary infections are common, but some people have bacteria in their urine without having any symptoms. Sunil Mathur explains how an infection may not be an infection Sunil Mathur BA MBBS MD Specialist Registrar Department of Urology, Bristol Royal Infirmary

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Urinary infections are common, especially in those who already have bladder problems. The term ‘bladder problems’ includes the problems of people who need to use continence aids, such as indwelling catheters or intermittent selfcatheterisation, of those with neurological conditions that affect bladder emptying, and of men with prostate problems. An infection can be thought of as a group of symptoms caused by bacteria entering an area of your body that they should not be in.

In most people, urine is normally sterile (free from germs or micro-organisms). Urinary infections are caused by micro-organisms, which are usually bacteria, entering your bladder.

Bacteria most commonly enter your bladder through the urethra (the pipe through which urine is passed). The bacteria multiply in your bladder, either floating in the urine or attached to the bladder wall in sheets called biofilms.

Biofilms advance up to your kidneys, invade the wall of your bladder or your kidney, and even get into your bloodstream. Your body’s immune system attempts to limit the spread of biofilms and, in many cases, will eventually clear them from your body even without treatment (although antibiotics speed up the process).

Urinary infections cause specific symptoms, such as bladder or kidney pain, an urge to pass urine frequently, sometimes to the point of incontinence, and discomfort or burning on

passing urine. They can cause general symptoms associated with any infection, such as fever and abnormalities on blood tests. They can also cause even less specific symptoms that can occur in many different diseases, such as confusion or loss of appetite, especially in older or frail individuals. Quick urine dip tests can give a rough indication of whether or not bacteria are present in a few minutes, and a laboratory can grow the bacteria responsible from a urine sample within a few days and tell which antibiotics they will respond to.

Interestingly, some people have bacteria in their urine without experiencing any symptoms at all. To distinguish this phenomenon from an infection, it is called asymptomatic bacteriuria.

Asymptomatic bacteriuria Bacteriuria simply means bacteria in the urine.

This is different from contamination, where bacteria that live on the skin get into the otherwise sterile urine in the sample pot by accident. In asymptomatic bacteriuria, there really are bacteria growing in your bladder urine and they are usually the same types of bacteria that cause urinary infections. They just seem to be living in your bladder without causing any harm.

Asymptomatic bacteriuria is actually quite common, especially among older people, those

CHARTER CONTINENCE CARE ISSUE 22

Medical insight with diabetes, and those who have a bladder problem. It occurs in about one in ten people who are older than 70 and living in their own homes, and affects more than a quarter of those in long-term care. In these groups, it is more common in women. In those who use continence devices, asymptomatic bacteriuria is even more widespread. It occurs in about half of those with spinal cord injuries who use condom catheters or selfcatheterisation, and everyone with a long-term indwelling urinary catheter has bacteria in their bladder all the time.

Asymptomatic bacteriuria is detected in the same way as a urinary infection, with urine tests. Urine dip tests will be positive and urine culture in the laboratory will grow large numbers of bacteria (just as in a urinary infection).1,2,3 Usually, these asymptomatic bacteria do not cause a problem. However, the groups of people who tend to have asymptomatic bacteriuria are also the groups who get the most urinary infections; this makes sense, as these individuals are clearly more susceptible to the first part of the infection process when the bacteria enter the bladder.

While, at first, it seems sensible that these bacteria should be removed from the bladder with a course of antibiotics, it is important to know if treating asymptomatic bacteriuria actually reduces the risk of getting an infection in the future. Perhaps surprisingly, it does not reduce the risk at all. After the antibiotics are finished, bacteria tend to find their way back into the bladder again. This can take several months if you do not use continence devices, but it takes only a few weeks in those who do use continence devices, and is almost immediate in those with indwelling catheters. Even the short period of relief from bacteria is of no real benefit, however, as it does not reduce the risk of infection.

In several studies, groups of people with asymptomatic bacteriuria were given antibiotics and then compared with similar groups who were not given any treatment.4,5 There was no difference in how likely people were to get infections, even though, in the antibiotic group, their urine did become sterile for a while. The only group of people who have fewer infections if their asymptomatic bacteriuria is treated are pregnant women, which is why they all have routine urine tests. In other people, it is not worth testing the urine if there are no symptoms.

Sounds simple? Think again So far, this is quite straightforward. If you have symptoms and bacteria in your urine, you get antibiotics. If you do not have symptoms, you do not get antibiotics even if there are bacteria in your urine. The problem comes when you look more closely at what kind of symptoms people get. If you have a high fever or abnormal blood tests and a sudden onset of bladder symptoms or kidney pain when you did not have them before, you probably have a urinary infection. A quick urine dip test can be done and antibiotics prescribed. If your problem is worsening bladder symptoms, when you already have bladder problems, it is more difficult to tell if infection is the cause.

Bladder discomfort, urinary urgency and incontinence occur even when you do not have any bacteria in your

CHARTER CONTINENCE CARE ISSUE 22

urine. If a urine dip test or urine culture turns out to be positive, that does not always help. By simple coincidence, there will be many people who have both bladder symptoms and bacteria in their urine, even though the bacteria are not causing the symptoms. In these cases, taking antibiotics will not help. The situation is worse if you use an indwelling catheter: you will always have bacteriuria after the first few weeks of your first catheter.

A study of people with catheters that had been put in recently (before the inevitable bacteriuria had developed), showed that infection-like symptoms are equally common in people with catheters whether they have bacteria in their urine or not.6 Unless there is a fever or kidney pain, bladder symptoms should not be assumed to be due to an infection, even if there are bacteria in the urine. Less specific symptoms, like confusion and loss of appetite, also have many causes other than infection that need to be investigated. Last, some symptoms, such as cloudy or foul-smelling urine, have nothing to do with infection at all and taking antibiotics for these is never worthwhile.

To make matters more complicated, bladder symptoms that are part of an underlying bladder problem, rather than caused by an infection, tend to come and go or vary in severity from one week to the next for no clear reason.

People usually consult their doctor when symptoms are at their worst. If you do see your doctor at this point, and are prescribed antibiotics, your symptoms will tend to improve – not because of the antibiotics, but because they were going to get better anyway. You would have got better whatever treatment was given, or even if no treatment was given. This reinforces the false belief that the symptoms were caused by an infection, and makes it more likely that antibiotics will be given for every slight, and probably temporary, worsening of symptoms in the future ■ References 1. Jha BK, Singh YI, Khanal LK, Yadab VC, Sanjana RK. Prevalence of asymptomatic bacteriuria among elderly diabetic patients residing in Chitwan.

Kathmandu Univ Med J (KUMJ) 2009; 7: 157–161.

2. Waites KB, Canupp KC, DeVivo MJ. Epidemiology and risk factors for urinary tract infection following spinal cord injury. Arch Phys Med Rehabil 1993; 74: 691–695.

3. Warren JW, Tenney JH, Hoopes JM, Muncie HL, Anthony WC. A prospective microbiologic study of bacteriuria in patients with chronic indwelling urethral catheters. J Infect Dis 1982; 146: 719–723.

4. Nicolle LE, Mayhew WJ, Bryan L. Prospective randomized comparison of therapy and no therapy for asymptomatic bacteriuria in institutionalized elderly women. Am J Med 1987; 83: 27–33.

5. Warren JW, Anthony WC, Hoopes JM, Muncie HL Jr. Cephalexin for susceptible bacteriuria in afebrile, long-term catheterized patients. JAMA 1982; 248: 454–458.

6. Tambyah PA, Maki DG. Catheter-associated urinary tract infection is rarely symptomatic: a prospective study of 1,497 catheterized patients. Arch Intern Med 2000; 160: 678–682.

Key points ● Urinary infections are caused by micro-organisms, which are usually bacteria, entering the bladder. ● Some people have bacteria in their urine without experiencing any symptoms at all. This is known as asymptomatic bacteriuria.

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Resources ■ The Royal

Association for Disability Rights (RADAR)

■ The Bladder

and Bowel Foundation

■ Cystitis and

Overactive Bladder Foundation

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One in five people in the UK is living with illhealth, injury or disability. The Royal Association for Disability Rights (RADAR), is the leading UK pan-disability charity. We campaign for justice and equality for disabled people. Well known for our RADAR keys to over 8,000 accessible toilets across the UK, we also support families living with ill-health, injury or disability, with a wide range of publications.

Two brand new books published in April 2010 support independent living for individuals and families. It’s well-known that continence issues have a considerable impact on a person’s quality of life and can severely restrict going out and social contact outside the home.

The good news is that most people can manage their problems very effectively. A key to

freedom and independence for disabled people is knowing that public toilets will be available, accessible and meet requirements. The National Key Scheme Guide 2010 is a complete guide to over 8,000 accessible toilets around the UK. Also, our popular If Only I'd Known That a Year Ago... Everything you need to know about living with ill-health, injury or disability 2010 edition contains up-to-date practical advice on essential services you might not know about if you are new to disability or your circumstances have changed. This book answers the questions asked by people in exactly those situations.

Tel: 0207 250 3222.

Fax: 020 7250 0212. email: rpl@radar.org.uk website: www.radar.org.uk

The Bladder and Bowel Foundation (B&BF) is the UK’s largest, non-profit making, advocacy charity providing information and support for people living with bladder and bowel control problems.

The charity, formed in June 2008, brings together the work of two previous charities, the Continence Foundation and Incontact, and has an enviable history spanning 20 years.

In the UK, there are an estimated 14 million people with a bladder control problem and 6.5 million with bowel control problems. These problems can affect anyone, young or old, male or female, but not everyone seeks help. The good news is that everyone can be helped and, in many cases, completely cured. The first step is to talk to your doctor, nurse, continence nurse or physiotherapist, or contact the B&BF for advice.

The B&BF provides unbiased, medically approved information to help consumers make

an informed choice and help healthcare professionals support their patients.

The B&BF can also put you in touch with your nearest local continence clinic. The charity provides user-friendly booklets and fact sheets, offers online support via its forum and a magazine twice a year. In addition, our confidential helpline offers medical advice from trained continence nurses.

We are here to help and support you, your family and friends every step of the way. Please contact us for more information; it could change your life for the better.

Nurse helpline: 0845 345 0165.

General enquiries: 01536 533255. email: info@bladderandbowel foundation.org website: www.bladderandbowel foundation.org

The Cystitis and Overactive Bladder (COB) Foundation is a national patient-based information and support charity, providing resources for patients and professionals alike. It aims to help others understand their bladder condition and the treatments that are available to them.

The COB Foundation provides a network of support groups throughout the UK, operates an information advice line and offers over 70 fact sheets, leaflets and DVDs. It has the largest bladder-related online message forum in Europe, allowing patients to support other patients, with

a resource base of 32,000. COB Foundation members receive support and practical help, a free information pack and a quarterly magazine containing articles on the latest treatments and research. The COB Foundation has recently relocated to Birmingham, an accessible central UK base.

Cystitis and Overactive Bladder Foundation, Kings Court, 17 School Road, Birmingham B28 8JG. Tel: 0121 702 0820. email: info@cobfoundation.org website: www.cobfoundation.org

CHARTER CONTINENCE CARE ISSUE 22

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

My story begins in 2009 when I was on a cross-country skiing trip. I had arrived at the mountain hut with my wife and our guide. We had skied gently uphill for two-and-a-half hours in glorious sunshine and -17ºC temperatures. I went round to the back of the hut to see if I could empty my leg bag or if it was frozen like my drink.

To my relief, the snow went yellow and all was well. The only protection for the bag was the thin fleece lining of my trousers!

The idea of skiing while incontinent had required some planning. Should I use pads, pants or a leg bag? A pad would not last the five hours of a ski trip. Pants would become hot and sticky. So I chose a leg bag. However, could a leg bag withstand the impact of a fall at speed? It did not take me long to find out … and the answer was yes.

A major concern was how to keep the sheath and leg bag in place while doing strenuous exercise with no privacy to make adjustments. A previously used thigh bag with straps above the knee always ended up around my ankle! For skiing, I had the bag’s upper strap twice round my leg below the knee, and I used eight inches of microporous tape (microporous material contains pores with diameters less than two billionths of a metre).

Selecting strong leg straps was also necessary to prevent the bag sliding down as it got heavier.

The current year, 2010, brought a great improvement in that I could now hold some water when I was vertical.

CHARTER CONTINENCE CARE ISSUE 22

Regular peeing became practicable and I could now manage four hours of activity with one pad.

For comparison purposes, I tried a new system from a different manufacturer where a bag was held in special pants. Unfortunately, the bag leaked due to a puncture at its neck.

On another day I used the same bag system as in 2009, again, it was successful. With the same clothing, there was no problem with freezing even at -19ºC. I look forward to repeating this trial in 2011.

Mr W, Hampshire It is so good to receive letters with such a positive outlook.Thank you for this great account of your holiday, I am sure many readers who are new to continence issues can take heart and realise that they do not have to stop you from enjoying yourself ■ I have been carrying out intermittent self-catheterisation for several years.

I live in a bungalow and found that, particularly during the summer

Address your correspondence to: The Editor,

Charter 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.

months, the cold water supply is often several degrees warmer than from a direct-line tap, as all the water supplies go via the loft, even though I have full insulation (including between the rafters). As a result, I found that the plastic catheter would easily bend on trying to pass the sphincter muscle.

In order to prevent this occurring, I used my knowledge of materials to good effect.

First, I obtain a spare glass (any spouted microwaveable one will do), which I sterilise. I keep this, with a supply of freshly boiled water, covered in the domestic fridge. I always keep two catheters in the fridge, which keeps them rigid to ease the process of entering the catheter past the two bends of the sphincter muscle. Since using this method, I have not had any failures due to bending of the catheter, and, by using boiled water, the risk of infection is reduced.

I thought that this information may be of use to other readers.

Mr L, South Yorkshire Thank you for your fascinating letter. Users of this technique never fail to surprise me with their ingenuity. There are lots of types of catheter manufactured and some are more rigid than others. I always supply my patients with a sample of each type to try so that they can decide on the variety that suits them best.You could ask your nurse or doctor for some other samples, which may help reduce the difficulties that you have experienced with the catheter bending in the warm weather ■ I was pleased to receive issue 21 of your magazine. With regard to the letter from Mr C of Gloucestershire, I have experienced the same problem of the catheter becoming detached in the night. Problem solved by using the Simpla Trident T2 sterile leg bag with slide action tap. This system uses a metal clip and is easy to fit. I also use an ankle strap on the tube leading to the night bag. Hope this is of some help to other readers.

Mr D, Surrey Many thanks for your comment; glad you have found a happy solution to your problem ■

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1: Biering-Sorensen et al. Residual urine after intermittent catheterisation in females using two different catheters. Scand J Urol Nephrol. 2007;41(4):341-5.

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16/06/2010 13:56