MS Essentials - MS Society

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Fourth edition November 2009

MS Essentials

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For people living with MS

This publication is available in large print (22 point) Call 020 8438 0799 or email [email protected]

Managing bladder problems

Bladder problems can be all too familiar for people with MS. However, you do not have to cope alone, as bladder problems can almost always be managed effectively and help is available. To understand how to manage bladder problems, it helps to know a little about how the bladder works, how it is affected in MS, and the types of problems this can lead to. This booklet describes a ‘first-line’ treatment route that works well for the majority of people, particularly those with less severe MS. The key is a proper investigation to identify the problem, or combination of problems, to be addressed. This first-line treatment route does not work for everyone with MS. This booklet also outlines further options that can help manage bladder problems effectively for people more severely affected. Further advice on managing bladder problems and helpful information about products are both available from your local continence service. You can self refer to most NHS continence advice services. The Bladder and Bowel Foundation can give you details of your nearest service. i Through the booklet we refer to other organisations which can help with particular issues – just look for the i . Their details are listed at the back of the booklet under ‘Useful organisations’ (page 16).

Contents How the bladder works Types of bladder problems A first-line treatment route Emerging treatments If symptoms become more difficult to manage 12 Further information 02 04 05 09 10


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How the bladder works

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If everything is working as it should, bladder control is something most people tend to take for granted. When your bladder is getting full, a warning system between your brain and bladder tells you that you should go to the toilet – and you can usually ‘hold on’ until you get to one. Equally, even when your bladder isn’t full, you can choose to go to the toilet if you know you’re not going to get the chance to go again for a while – for example, before going on a journey.

Two key functions The bladder itself has two key functions: storage, which it does most of the time, and emptying. The system works so that at any time it is doing one or the other of these. To store and empty urine, the bladder uses two main muscles – the detrusor (in the bladder wall) and the sphincter (at the outlet of the bladder). These two muscles need to work in coordination with each other so that one is relaxed while the other is contracted. When the bladder is storing urine, the detrusor is relaxed and the sphincter is contracted. When the bladder is emptying, the sphincter relaxes to open and the detrusor contracts to expel the urine.

Two main muscles in the bladder emptying detrusor storage

Managing bladder problems © MS Society 07/11

sphincter

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The two main muscles of the bladder, detrusor and sphincter, need to work in coordination with each other when storing and emptying. One relaxes as the other contracts.


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Messages from the brain A nerve centre in the lower part of the brain switches the bladder from storage to emptying. The success of this relies on messages transmitting properly through the whole length of the spinal cord. In MS, if lesions affect the nerve pathways in the spinal cord, causing leg weakness, this is also going to interrupt the connecting nerve pathways of the bladder.

The spinal cord

brain

This section of the spinal cord is where nerves travel to and from the bladder – just underneath the section where nerves travel to and from the legs.

Messages from the brain to the bladder have to travel the whole length of the spinal cord.


spinal cord

This is the section in the spinal cord where nerves travel to and from the legs.

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Types of bladder problems

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There are two main types of bladder disorder that can occur in MS. The most common is a problem with storage, and the other is a problem with emptying. It is not known why some people get one and not the other, or why some people get a bit of both. Bladder problems are not unusual – perhaps as many as three quarters of people with MS experience them.1 They may occur or worsen during a relapse, particularly if your mobility is affected. Similar symptoms may also be caused by a urinary tract infection, which may itself be caused by bladder problems, or may be completely unrelated to your MS.

Problems with storage When the nerve pathways in the spine are interrupted, faulty reflexes can appear so that even a small amount of urine in the bladder causes it to contract. This is known as ‘detrusor overactivity’, which causes a need to urinate frequently – an effect known as frequency. There can often also be an inability to ‘hold on’, called urgency. If this is severe, urgency incontinence will be a problem. Medication can be highly effective in reducing the tendency for the bladder to contract, and this helps to relieve both frequency and urgency.

Problems with emptying The other main type of bladder disorder is to do with emptying. Instead of the bladder muscles being coordinated, the sphincter does not relax when the detrusor muscle contracts. This makes urine flow poor and interrupted, and bladder emptying incomplete.


People with MS often cannot feel that their bladders are not empty. However, by a process of deduction, they may identify the problem – if they need to empty for a second time only a short interval later and pass a similar volume.

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People who think they don’t empty are usually right, but quite a lot of people who think they do empty their bladders in fact do not, and they have a significant volume of urine left behind. Urine left in the bladder – this is called ‘the residual’ – stimulates further bladder contractions and can add to problems of urgency and frequency.

Urinary tract infections (UTIs) It is important to test for urinary tract infections (UTIs) because symptoms of a UTI can be very similar to bladder problems caused directly by MS (for example, needing to go very frequently). Some people do seem to get more infections


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than others, even with exemplary hygiene. People doing intermittent self-catheterisation to help empty the bladder are likely to have bugs (microbes) in their urine when it is tested – but this is different from having a real infection. An infection causes the urine to go cloudy and smelly, and some people may also have pain on passing urine, though not everyone. Infections can usually be treated with antibiotics.

There is a good ‘first-line’ treatment route for managing bladder problems in MS, as shown in the diagram on page 6.2 It works well for the majority of people, particularly those less severely affected by MS and people who, if they need to self-catheterise, do that as well as take medication.

Step 1 – check for infection As explained on page 4, if you have bladder problems it is important to test for infection in the urine. If a UTI shows up on tests, it needs to be investigated and treated.

Step 2 – is your bladder emptying? It is also important to know if you are emptying your bladder fully. Measuring the ‘residual volume’ – the amount of urine left in your bladder after emptying – is the most important test in managing bladder problems. Even if your problems are to do with urgency and frequency (which do not necessarily suggest a problem with incomplete emptying), this test should be done.3 A continence adviser or nurse can measure the residual volume either by using a catheter to drain your bladder, or more usually, by using an ultrasound scan on your lower abdomen – a quick, painless and non-invasive procedure. Record keeping, like measuring fluid intake and volume of urine passed, will not tell you about the residual volume – you would need to be able to establish that the residual is nil when the record starts. In any case, you also lose fluids from your body through sweating, for example, that record keeping does not keep track of. If the residual volume is low – less than 100ml – medication can be prescribed to reduce the bladder contractions and relieve both frequency and urgency. If the residual volume is high – more than 100ml – you would need to take steps to improve bladder emptying (for example by self-catheterisation) before taking medication to reduce urgency.


A first-line treatment route

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First-line treatment route for managing bladder problems 2


TEST FOR Urinary tract infection

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B

C

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Drug treatments A number of drugs can be used to treat an overactive bladder and make bladder contractions less unpredictable. Many belong to the same family of ‘anti-cholinergic’ drugs. There is a choice: oxybutynin (brand name Ditropan), tolterodine (Detrusitol), propiverine (Detrunorm), trospium chloride (Regurin), solifenacin (Vesicare), fesoterodine (Toviaz) and darifenacin (Emselex). They are taken as tablets once or several times a day, depending on the duration and strength of the medication. All of them are likely to cause a variable degree of dry mouth. Some people have side effects with one and may then switch to another that they find more agreeable. The drug desmopressin (tablets, or nasal spray) may be prescribed if other drugs don’t work well during the day, or to allow you to sleep undisturbed if you are prone to wake in the night with the need to empty your bladder.3 Desmopressin must never be used more than once in 24 hours. A potential danger is of ‘water intoxication’ (severe water retention that causes a dangerous imbalance of sodium and water in the body). Ask your doctor for advice about fluid intake.

Intermittent self-catheterisation Intermittent self-catheterisation is the most effective solution for incomplete bladder emptying and many people find it useful. This means inserting a thin plastic tube (the catheter) into the urinary opening to drain the bladder. For most people, this is done two to four times a day. A specialist nurse or continence adviser can teach you how to do this. This sounds difficult, but most people find that actually doing it is much easier than they expected and that it makes a huge difference to their lives, giving them back the freedom to be out and about without worrying about where the nearest toilet is. There are many different types of catheters – for men and women – including single use ones. A specialist adviser, such as an MS nurse or continence nurse, will have up-to-date information about the different types, and can help you choose the most appropriate one. The Bladder and Bowel Foundation has more information about intermittent self-catheterisation. i



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Managing day to day Drink enough It may seem illogical, but drinking less does tend to make bladder problems worse. When you drink less, your urine becomes more concentrated. This can irritate your bladder, making it more likely to contract, and you may end up going to the toilet more. It can also make urinary tract infections (UTIs) more likely. So it helps to keep up your fluid intake in general, up to 1.5 to 2 litres a day. Although be careful to limit your caffeine intake, as this can make you go to the toilet more often. If you need to get used to drinking more, it is best to increase your fluid intake gradually, for example on days when you are at home or when it is easy to get to a toilet. Problems when emptying? If you have problems with emptying, a continence adviser may suggest a variety of emptying techniques and bladder stimulating devices. These include holding a small vibrating device against your bladder when you go to the toilet. It does not work for everyone, but this vibration technique helps some people to empty their bladder more effectively.4 Commercially available battery powered massagers can be effective for this. Adjustments at home or work If frequency or urgency causes problems, there may be practical measures you can take to minimise their impact. Do you have quick and easy access to a toilet at home or at work? Perhaps a downstairs toilet or commode would help at home? In work, most employers have a legal duty to make ‘reasonable adjustments’ – such as moving your workspace closer to toilets if that would help. The MS Society publication Work and MS has further details.


RADAR key scheme

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The disability charity RADAR runs a National Key Scheme to allow access to a network of around 9,000 accessible toilets across the UK. They also produce a guide showing the location of the toilets. From late 2011, this will be available as an ‘app’ for smartphones. i Pelvic floor exercises Pelvic floor exercises can help with control by improving your ability to ‘hold on’. Their main use in the general population is to help with stress incontinence following childbirth, but they


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can be done by men as well as women. A ‘pelvic floor’ physiotherapist can help you to learn to exercise these muscles. ‘Can’t wait card’ Some people find it useful to carry a ‘can’t wait card’ that explains they have MS, to show to people when they need to use a toilet urgently. A card is available free from the MS Society. Continence advisers Virtually every area in the UK has a specialist continence service with at least one adviser. Continence advisers can provide information, for example, about products available, as well as advice that is both understanding and confidential. You can ‘self-refer’ to most NHS Continence Advisory Services. For details of your nearest service, call the Bladder and Bowel Foundation helpline. Calls are confidential and you can speak to a specialist nurse. Details are also listed on their website. i Cranberry Cranberry juice and cranberry extract tablets have both been studied in a number of research trials. But there is no conclusive evidence that they can help prevent or treat urinary tract infections for people with MS.3, 5, 6, 7 One recent trial suggested that cranberry extract tablets might help prevent infections for people with neurological bladder problems. MS causes neurological bladder problems, but the trial did not look at people with MS in particular – so we can’t be sure of the benefits for MS.8 If you do drink cranberry juice, remember that fruit juices are high in sugar and can quickly add up to a lot of calories.

Research is going on constantly to discover good ‘second-line’ treatments. Botulinum toxin (‘botox’) A newly emerging, highly effective treatment involves injecting botulinum toxin (also known as ‘botox’) into between 20 and 30 different sites in the bladder wall. This probably works by partially paralysing the bladder as well as blocking sensory mechanisms in the bladder wall, although how it works as well as it does is not fully understood. The treatment results in quite long-lasting benefits (generally up to around 10 months) during which urgency and urgency incontinence


Emerging treatments

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may be greatly reduced. At the moment, only people with MS who can self-catheterise are using it because it is likely that it makes any problems with bladder emptying worse.9 The treatment is minimally invasive and has few side effects, but is not yet licensed. A number of specialists around the UK have learned how to carry out the procedure. If ‘first-line’ treatment is not working for you, you can ask your GP for a referral to the local urologist to discuss it. Cannabis-based treatments In recent years there has been considerable interest in researching cannabis-based medicines to treat MS symptoms, including bladder problems. Some research trials have shown benefits for some people with urgency and urgency incontinence.10, 11 However, issues over long-term safety and possible dependency problems associated with the use of cannabis in young, otherwise fit people, are still to be clarified. To date, no cannabis-based medicine has been specifically licensed for treating bladder problems in MS.

If symptoms become more difficult to manage

While the first-line treatment route shown on page 6 works well for many people, it doesn’t work for everybody. This section summarises further options that can be effective for people who are more severely affected by MS. Why might symptoms change? Bladder symptoms in MS tend to become more difficult to manage as more lesions affect the spinal cord. As the illustration on page 3 shows, the nerve pathways to and from the bladder are close to the nerve pathways affecting the legs. So the level of bladder problems you might experience is often connected to the level of difficulty you have in walking.12


Continence products

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Some people find that using protective pads can be a satisfactory answer to bladder problems. For men, devices called ‘convene drains’ can be helpful. These fit over the penis, and carry urine away through a tube to a small bag attached to the leg. However, not everyone finds pads or convene drains the best solution – it depends on how mobile you are, how intrusive you find your symptoms, and your overall level of disability. There are a number of helpful publications which have details, for example, about pads, special clothing and other protective products, such as sheets. Information is available from Promocon and the Bladder and Bowel Foundation. i

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Further options: indwelling catheters Although self-catheterising can be an effective solution for many people, not everyone can manage it. If you have problems with dexterity – such as difficulties writing – or you have reduced sensation in your hands, it may not be an option for you. Also if extreme frequency is a major problem for you, self catheterisation is not the answer, as this is due to an overactive bladder rather than not emptying. You might want to consider an indwelling catheter – one that is left in place – if self-catheterisation is not possible or suitable for you. This usually helps to manage bladder problems for people who have moderate to severe mobility problems; it would be exceptional for a person who can walk to have one. Indwelling catheters have a bag attached, to collect the urine that drains from the bladder. This is emptied regularly, through a small tap in the bag. Bags can be quite discreet, and come in different sizes – for example, some people use a larger one for night time. They can be worn either strapped to the leg or in specially made underwear. An alternative to a bag may be a catheter with a valve, which is opened and closed to drain the bladder, either into a toilet or a receptacle. You would need an assessment to decide whether this is suitable. It depends on many factors, including bladder capacity and your dexterity to operate the valve. There are two kinds of indwelling catheter: urethral and supra-pubic. It is important to discuss with a urologist (your GP can refer you) which would be more suitable for you. Deciding to move to an indwelling catheter can be difficult, as this is a significant transition to make in how you manage your MS. Your MS nurse or continence adviser can help to talk through this change – there can be a lot to take in. They can help too with information about different products that are available. Some people also find it helps to talk to someone else who has an indwelling catheter. Urethral catheter A urethral catheter is inserted into the urethra – the tube through which urine empties from the bladder – usually by a district nurse. Once it is fitted, you would use this to empty your bladder rather than urinating in the usual way. It can help people to get used to having a catheter and managing a bag, but many people find it is not a long-term option for several reasons: urine may leak around the catheter, and it can stretch and damage the neck of the bladder.



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A urethral catheter needs to be changed regularly, at intervals of up to 12 weeks. In some cases carers can learn to do this. Supra-pubic catheter A supra-pubic catheter is inserted into the bladder through a small incision in the abdomen. The procedure would usually be carried out under anaesthetic by a surgeon. As with any operation, your doctors should explain the potential risks and benefits, and discuss with you whether they will use a general anaesthetic for the procedure. It is important that your local service inserts the catheter, so that they can provide support afterwards. A supra-pubic catheter needs to be changed regularly, usually every 12 weeks though it can be more frequently. You or your carer can learn to do this. Some people tend to produce a lot of sediment in their urine, which sticks to the catheter, and they may need more frequent catheter changes. Many people prefer supra-pubic catheters to urethral catheters as they are easier to change – particularly for people who experience leg spasms – and sexual activity is easier.

Managing with a catheter and preventing problems Keeping a catheter clean is vital. Yet even with the most careful attention to hygiene some people seem to be more prone than others to recurrent infections. For people who have an indwelling catheter, just as for people who do not, some problems can result from not drinking enough. Therefore it is important to keep up your intake of fluids. This can help to prevent infections and also prevent ‘crystallisation’ of calcium that can occur round the catheter and lead to blocking.


Some people may experience ‘bypassing’ or leaking around the catheter. Constipation can be a cause, so it is also important to have regular bowel movements.

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If you have recurrent infections or other difficulties, you should discuss them with your continence adviser.

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Surgery While very few people with MS have urological surgery, it may be the best option for a small number of people. An operation called an ileocystoplasty, to make the bladder larger, is sometimes carried out when medical management has not been successful. However, since the arrival of botox infections, this operation is becoming far less common. Another operation, known as a ‘urinary diversion’, creates a kind of tube between the bladder and the skin of the abdomen. The tube, formed from tissue from the small bowel, drains into a bag or pouch attached to the skin, so self-catherisation is not needed. This type of operation may also be called a urostomy. MS alone does not mean someone should not undergo surgery, as long as all the risks are well assessed and the operation is performed by an experienced team.



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Further information UK Information Team 020 8438 0799 [email protected] National offices – see back cover www.mssociety.org.uk

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Read more Our free booklets help explain MS, look at its practical and emotional effects, and help you find your own ways to manage life with MS. Titles are available in large print, audio format and a number of languages. We can help you find and borrow other books, research articles and DVDs about living with MS. Search online or call the UK Information Team. Find out more online Get the latest on research, campaigns and MS news. Chat online with our message boards and Facebook. Follow us on Twitter, see the MS community at Flickr and watch us on YouTube. Children and teenagers can find out more and link up through our YoungMS site: www.youngms.org.uk Join us Receive local and national magazines and newsletters, and get involved locally and nationally. Be as involved as you like. Just by being a member you strengthen the voice of all people with MS, and help us continue our vital work. Join online, or call 020 8438 0759 or your national office. Get in touch The freephone MS Helpline offers confidential emotional support and information for anyone affected by MS, including family, friends and carers. Information is available in over 150 languages through an interpreter service. 0808 800 8000 (weekdays 9am-9pm) or [email protected] Contact the UK Information Team or your national office if you have any questions about MS.


Near you

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Our volunteers run over 300 local branches and support groups. They provide information about MS and local services, and a chance to meet others affected by MS and take part in a range of activities. In many parts of the country, you can pick up our booklets at MS Society Info Points. Larger information centres – including ones in our national offices in London, Belfast, Cardiff and Edinburgh (Newbridge) – can help you with information about MS and services in your area. Or come along to our local and national events and learn more about MS from expert care professionals, researchers and other people with the condition. Find out more online or call your national office.

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Further reading Bladder problems – factsheet Published by the MS Trust (latest version at time of print – February 2011). Available to order or download at www.mstrust.org.uk A UK consensus on the management of the bladder in multiple sclerosis Published by the MS Trust. A summary of the consensus statement published in the Journal of Neurology, Neurosurgery and Psychiatry 2009. Available to order or download at www.mstrust.org.uk



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Useful organisations Bladder and Bowel Foundation Information and support for anyone affected by bladder or bowel problems. The Foundation also runs a nurse helpline and can tell you where to find your nearest continence specialist. SATRA Innovation Park Rockingham Road Kettering NN16 9JH Helpline 0845 345 0165 Telephone 01536 533 255 www.bladderandbowelfoundation.org PromoCon Offers independent advice on continence products available in the UK. PromoCon Redbank House St Chad’s Street Manchester M8 8QA Helpline 0161 834 2001 (Monday to Friday, 10am-3pm) www.promocon.co.uk RADAR Runs the national key scheme, allowing access to around 9,000 accessible toilets across the UK. 12 City Forum 250 City Road London EC1V 8AF


Telephone 020 7250 3222 www.radar.org.uk

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References 1 Kalsi, V. and Fowler, C. J. (2005) Therapy insight: bladder dysfunction associated with multiple sclerosis. Nature Clinical Practice, 2(10), 492-501. 2 Fowler, C. J. et al. (2009) A UK consensus on the management of the bladder in multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry, 80, 470-7. 3 National Institute for Health and Clinical Excellence (2003) NICE Clinical Guideline 8. Multiple Sclerosis: Management of multiple sclerosis in primary and secondary care. London, NICE. 4 Dasgupta, P. et al. (1997) The ‘Queen Square bladder stimulator’: a device for assisting emptying of the neurogenic bladder. British Journal of Urology, 80, 234-7. 5 Jepson, R. et al. (2004) Cranberries for treating urinary tract infections (Cochrane Review). The Cochrane Library, Issue 4, Chichester, John Wiley & Sons Ltd. 6 Jepson, R. et al. (2007) Cranberries for preventing urinary tract infections (Cochrane Review). The Cochrane Library, Issue 1, Chichester, John Wiley & Sons Ltd. 7 Guay, D. R. (2009) Cranberry and urinary tract infections. Drugs, 69(7), 775-807. 8 Hess, M. J. et al. (2008) Evaluation of cranberry tablets for the prevention of urinary tract infections in spinal cord injured patients with neurogenic bladder. Spinal Cord, 46(9), 622-6. 9 Kalsi, V. et al. (2007) Botulinum injections for the treatment of bladder symptoms of multiple sclerosis. Annals of Neurology, 62(5),452-7. 10 Freeman, R. M. et al. (2006) The effect of cannabis on urge incontinence in patients with multiple sclerosis: a multicentre, randomised placebo-controlled trial (CAMS-LUTS). International urogynecology journal and pelvic floor dysfunction, 17(6), 636-41. 11 Brady, C. M. et al. (2004) An open-label pilot study of cannabisbased extracts for bladder dysfunction in advanced multiple sclerosis. Multiple sclerosis, 10, 425-33. 12 Dalton, C. M. et al. (2010) Multiple sclerosis and other noncompressive myelopathies. In C J Fowler, J N Panicker and A Emmanuel (eds) Pelvic Organ Dysfunction in Neurological Disease, Cambridge University Press.


Find these references at www.mssociety.org.uk/ library or call the UK Information Team on 020 8438 0799. There may be a charge for the full article.

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Authors and contributors Based on articles written by Professor Clare Fowler, Department of Uro-Neurology, The National Hospital for Neurology and Neurosurgery, London. With thanks to Professor Clare Fowler, Collette Haslam, Yasmin Keyani, Brian Kinsella, Susan Lambert, Shirlee McKeown, Melanie Ranford-Mills, Samantha Roberts and Kate Wilkinson. Disclaimer: We have made every effort to ensure that information in this publication is correct. We do not accept liability for any errors or omissions, and policy and practice may change. Seek advice from the sources listed. Suggestions for improvement in future editions are welcomed. Please send them to [email protected]. © Multiple Sclerosis Society, 2011 First edition, August 2004 Fourth edition, November 2009 Revised and reprinted, July 2011


This title will be reviewed within two years of publication.

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MS Society Multiple sclerosis (MS) is the most common disabling neurological disorder affecting young adults and we estimate that around 100,000 people in the UK have MS. MS is the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body. For some people, MS is characterised by periods of relapse and remission while, for others, it has a progressive pattern. For everyone, it makes life unpredictable. The MS Society is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS. We provide a freephone MS Helpline, grants for home adaptations, respite care and mobility aids, education and training, support for specialist MS nurses and a wide range of information. Local branches cater for people of all ages and interests and are run by people with direct experience of MS. The MS Society also funds around 80 vital MS research projects in the UK. Membership is open to people with MS, their families, carers, friends and supporters. You can help the work of the MS Society by: • • •

becoming a member making a donation offering your time as a volunteer

Contact information MS National Centre 372 Edgware Road London NW2 6ND Telephone 020 8438 0700 [email protected] MS Society Scotland National Office, Ratho Park 88 Glasgow Road Ratho Station Newbridge EH28 8PP Telephone 0131 335 4050 [email protected] MS Society Northern Ireland The Resource Centre 34 Annadale Avenue Belfast BT7 3JJ Telephone 028 9080 2802 [email protected]

MS Society Cymru Temple Court Cathedral Road Cardiff CF11 9HA Telephone 029 2078 6676 [email protected] National MS Helpline Freephone 0808 800 8000 (weekdays 9am-9pm) www.mssociety.org.uk Multiple Sclerosis Society. Registered charity nos 1139257 / SC041990. Registered as a limited company in England and Wales 07451571. ES07/0711