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Intimate issues: bladder dysfunction

21/07/2025 Gavin Giovannoni

Bladder dysfunction in people with MS is a sign of early damage, particularly to the spinal cord, and an early indication of a poor prognosis. Why do people with MS who develop bladder dysfunction do worse than those with no bladder symptoms? Here, I explain why I take bladder problems seriously and their implications for MS management.

Key points

Urinary hesitancy, urgency, frequency and incontinence, including at night, are bladder problems that affect many people with MS and cause significant frustration and anxiety.
A range of drug-based treatments, behavioural techniques and specialist physical interventions can help people with MS to manage bladder dysfunction and achieve adequate control.
However, the bladder pathways will probably continue to be affected in the long term due to the development of new lesions or the expansion of old lesions.
Frequent and severe urinary tract infections (UTIs) increase the likelihood that MS will progress.
I recommend regular dipstick testing at home, as part of your MS self-management, to increase the chances of early detection and treatment of a UTI.
Lifestyle approaches, such as avoiding smoking and reducing alcohol and caffeine consumption, should help to reduce bladder symptoms. Pelvic floor exercises are also important.
Dehydration is not a good way to control your bladder symptoms. Chronic dehydration can have a significant impact on your overall health and well-being and can exacerbate many of your MS symptoms.

Causes and significance of bladder dysfunction

Bladder dysfunction is the most common symptomatic problem I encounter in an MS clinic, affecting more than 50% of people with MS. It is one of the signs of early damage, particularly spinal cord damage, and an early indication of a poor prognosis. It therefore has important implications for treatment: if you have early bladder symptoms, you may want to take a more effective therapy early on rather than starting on a less effective DMT and waiting to see how you respond. It is best to maximise your chances of responding to treatment by opting for a highly efficacious therapy first-line. I call this ‘flipping the pyramid’.

Infections, both viral and bacterial, are a known trigger of relapse in MS. Frequent and severe urinary tract infections (UTIs) increase the likelihood that your MS will progress. This is why it is important to improve the management of bladder problems in people with MS to prevent or reduce UTIs. You can read more about managing UTIs here.

Why do people with MS who develop bladder dysfunction do worse than those with no bladder symptoms? The bladder is a complicated organ with several neurological components that need to be coordinated. The descending nerve fibres that travel from the brain to the lower segments of the spinal cord are very long and have the greatest chance of being damaged by MS lesions in their path down to the bladder centre in the sacral area of the lower spinal cord. Therefore, any progressive or worsening MS damage is likely to manifest with bladder dysfunction early on.

The detrusor (or balloon) muscles and the sphincter (or valve) need to coordinate their action to enable normal bladder function. When the bladder is filling, the detrusor muscle relaxes to allow the bladder to expand and the sphincter contracts to keep the urine in the bladder. The opposite occurs when you pass urine; the sphincter opens and the detrusor contracts to empty the bladder.

Common MS-related bladder problems

Hesitancy

Urinary hesitancy occurs when the function of the detrusor and sphincter muscles is not coordinated: you try to pass urine, but the bladder sphincter won’t open. Hesitancy may be intermittent; if you try again later, the bladder will open, allowing you to pass urine. Conversely, the sphincter may close as you pass urine, which breaks up the urine stream or prevents complete bladder emptying; this can cause dribbling. The medical term for incoordination of the bladder muscles is dyssynergia or, more correctly, detrusor-sphincter-dyssynergia (DSD). People with MS find urinary hesitancy and its unpredictability very frustrating.

The drug treatment for DSD includes alpha-blockers (prazosin, indoramin, tamsulosin, alfuzosin, doxazosin and terazosin). Other strategies include small bladder stimulators or vibrators that are placed over the pubic area and work by blocking signals that inhibit the sphincters. The vibrators work in some people with MS and may help relax the sphincter.

Trying to relax when passing urine can help to improve hesitancy. The sound of running water, for example from a tap, may trigger the relaxation of the sphincter. Simulating this in public toilets may not be possible. Some people with MS find pressing on the lower abdomen helps. If all else fails, intermittent self-catheterisation (ISC) may be the only option to manage urinary hesitancy (see below).

Frequency and urgency

In MS the commonest bladder problem is spasticity, or irritability, of the detrusor muscle. The detrusor can’t relax, which prevents the bladder from filling to its maximum capacity. Frequent spasms of the detrusor muscle tell the brain that the bladder is full and you need to pass urine. This causes frequency, i.e. the need to use the toilet many times during the day and night. Frequency often accompanies the symptom of urgency, the need to get to the toilet as quickly as possible to prevent incontinence.

When urgency is a problem, distraction techniques such as breathing exercises and mental tricks (e.g. counting) may be helpful. If urinary frequency is your main problem, you might try to retrain your bladder by holding on for as long as you can each time before passing urine. The aim is to train the detrusor muscle to expand more to hold on for longer when you need the toilet. These behavioural techniques rarely work for long; MS is a relapsing and/or progressive disease, and the bladder pathways will likely continue to be affected due to the development of new lesions or the expansion of old lesions.

Incontinence

Incontinence occurs when you lose the ability to suppress or ignore the signals from the detrusor muscle with the result that the sphincter relaxes or opens as part of a spinal cord reflex. We typically treat this problem with anticholinergic drugs, e.g. oxybutynin, solifenacin or tolterodine. The older generation anticholinergics such as oxybutynin cross the blood ̶ brain barrier and enter the brain, where they can exacerbate cognitive problems in people with MS. The commonest side effect of anticholinergics is dryness of the mouth; they can also worsen constipation. People with MS must be warned about the risk that anticholinergics will relax the bladder too much and precipitate urinary retention; the solution to urinary retention is ISC.

The good news is that we now have a relatively new muscle relaxant, mirabegron (Betmiga), which activates the β3 adrenergic receptor in the detrusor muscle. I am increasingly using mirabegron to avoid the side effects (particularly cognitive issues) associated with anticholinergics. The main side effect of mirabegron is that it tends to increase your blood pressure.

Nocturia

Nocturia means you need to get up frequently at night to pass urine. If nocturia is your main bladder problem, using agents to concentrate the urine at night might help. A hormone called DDAVP works on the kidneys to reduce urine production; it is available as a nasal spray or tablets (Desmotabs or Desmospray). DDAVP should only be taken once a day, to avoid continuous water retention by the kidneys; this presents as swelling of the feet and reduces the salt or sodium levels in your blood, which can be dangerous. You therefore need to have your sodium levels checked about 4 ̶ 6 weeks after starting DDAVP therapy.

Second-line treatments for bladder problems

If you fail to respond to anticholinergics, mirabegron and/or behavioural techniques, you need a bladder scan to see if you have a raised residual volume (the amount of urine left after you have emptied your bladder). If the residual volume is greater than 80 ̶ 100mL you may need to consider intermittent self-catheterisation (ISC). Some continence advisors act at the 80 mL threshold, and others at the 100 mL threshold, when recommending ISC.

Intermittent self-catheterisation

ISC serves two purposes. It increases your functional residual bladder volume, allowing more storage space for urine, which reduces frequency and urgency. This can help if you need to travel some distance or to join in a social activity without having to pass urine. It also helps to reduce nocturia, which in turn improves sleep and possibly MS-related daytime fatigue.

ISC also removes urine from the bladder. The residual urine acts as a culture medium for bacteria; by clearing your bladder you can prevent bladder infections. Conversely, if you don’t do the ISC technique correctly you can introduce bacteria into the bladder that then cause infections.

Botox

Botox injection into the detrusor muscle is increasingly used as a treatment for bladder dysfunction, in conjunction with ISC. Botox paralyses the muscle, turning it into a flaccid bag for urine storage. The surgical techniques that were previously used to remove the nerve supply to the bladder (which had the same effect as Botox) are now rarely used.

Percutaneous tibial nerve stimulation

Percutaneous (or posterior) tibial nerve stimulation is a form of neuromodulation that can help with impaired bladder function and may improve urinary urgency, urinary frequency and urge incontinence. It is offered as a treatment in specialist neuro-urology units.

Permanent catheterisation

If all else fails, some people with MS may need to be permanently catheterised. This can be done via the urethra or the lower abdominal wall; the latter is called a suprapubic catheter. Being permanently catheterised sounds drastic, but this significantly improves the quality of life in some people with MS. Allowing bladder dysfunction to control your life can result in social isolation and constant anxiety about being incontinent in public. With the above-mentioned strategies, adequate bladder control should be the norm in MS.

In my experience, the biggest hurdle to achieving adequate bladder control is when people with MS assume their bladder symptoms are part of the disease and resign themselves to living with them. Such patients may start using continence pads as if this is normal or inevitable for someone living with MS. This is not normal; incontinence can lead to skin rashes and pressure sores. Please don’t accept this as the norm or something you must live with. If you have problems, tell your MS nurse or neurologist; they can help you.

Anatomy of the human urinary bladder; reproduced from Wikipedia, created by U.S. National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program.

Lifestyle factors that impact your bladder

Smoking, alcohol and caffeine

Nicotine irritates the bladder. If you are a smoker, then stopping smoking may significantly improve your bladder symptoms. Similarly, reducing alcohol and caffeine consumption may help; these agents are diuretics and cause the kidneys to make more urine.

Pelvic floor exercises

One of the treatments recommended to all patients with bladder problems is pelvic floor exercises. These are also important for managing bowel and/or sexual problems. For detailed guidance on incorporating these into your daily life, please see pelvic floor training post.

Avoiding dehydration

Try to anticipate times when urinary frequency and urgency will be most inconvenient; reducing the amount you drink beforehand may help. For example, don’t drink too much for 2 ̶ 3 hours before you go out. After you have finished passing urine, go back to the toilet again after a few minutes to try to pass some more urine. This is called the double micturition technique, which aims to ensure the bladder is emptied completely. However, do not reduce your total fluid intake to less than 1.5 litres each day.

Dehydration is not a good way to control your bladder symptoms. The issue of people with MS dehydrating themselves to manage their bladder problems was highlighted as early as the 1960s by Professor Bryan Matthews, a neurologist in Oxford, in his textbook on MS.

When researching the topic in the 1990s, it became clear to me that people with MS with severe disability were most likely to have bladder dysfunction and were chronically dehydrating themselves to manage urinary frequency, urgency and nocturia. Studies showed that a high urinary concentration of creatinine, a waste product that the kidneys filter out of the blood through the urine, correlated with increased disability levels. Urine containing myelin basic protein-like material (MBPLM), an indicator of myelin damage in MS, was also shown to correlate with disability. It is dehydration that causes higher levels of MBPLM and creatinine in the urine, indicating that dehydration is associated with disability.¹

A more recent paper from researchers in the Southampton group described the same findings, that urinary tract symptoms are very common in people with progressive MS and are associated with inadequate hydration.²

Despite highlighting the issue of chronic dehydration in MS over the years, it remains a persistent problem. My message is clear: don’t use dehydration to manage your bladder symptoms. Chronic dehydration can have a significant impact on your overall health and well-being and can exacerbate many of your MS symptoms. Some potential effects of chronic dehydration are listed in the box below.

Physical performance: Dehydration can decrease physical endurance, cause muscle cramps and exacerbate or cause fatigue. This can affect overall physical performance and make everyday tasks more challenging.
Cognitive function: Dehydration has been linked to cognitive impairment, including issues with concentration, alertness and short-term memory. Prolonged dehydration may even contribute to long-term cognitive decline.
Mood and mental health: Studies have shown that dehydration can affect mood and contribute to increased feelings of anxiety and irritability. In severe cases, it can even lead to symptoms resembling depression.
Kidney function: Chronic dehydration can put a strain on the kidneys, potentially leading to the formation of kidney stones and urinary tract infections. It can impair the kidneys’ ability to effectively filter waste from the blood. It also makes you more susceptible to the side effects of non-steroidal anti-inflammatory medications.
Digestive problems: Dehydration can lead to constipation and other digestive issues. It may also contribute to an increased risk of developing peptic ulcers and acid reflux.
Skin health: Inadequate hydration can lead to dry, flaky skin and exacerbate conditions such as eczema and psoriasis. Proper hydration is essential for maintaining overall skin health and elasticity.
Heat-related illnesses: Dehydration reduces your body’s ability to regulate temperature, increasing the risk of heat exhaustion and heat stroke, particularly in hot and humid conditions. Please remember that people with MS, particularly those with more advanced MS, may already have a problem with thermoregulation.

In conclusion

I advise using a holistic approach to managing urinary symptoms, in addition to medication or other aids where recommended. Please review the questions below to check whether you are optimising your self-management.

Have you deconditioned your bladder because you are not training yourself to resist emptying it whenever you get the urge to pass urine? The bladder is a muscle that needs to be trained.
Have you tried peripherally acting anticholinergics or mirabegron?
Have you had a post-micturition bladder scan to see if you are emptying your bladder?
Do you need to use intermittent self-catheterisation to increase your functional bladder volume?
Do you have a chronic low-grade urinary tract infection? Are you performing regular urine dipstick testing (see post on UTIs and dipstick testing)?
Do you have bladder stones?
Have you tried DDAVP (Desmotabs or Desmospray) to help concentrate your urine without dehydrating yourself?
Are you avoiding bladder irritants or stimulants such as caffeine and nicotine?
Are you doing your pelvic floor exercises? If you are a post-menopausal woman, have you tried HRT (hormone replacement therapy)? Pelvic floor tone and bladder function often improve on HRT.

References

Giovannoni G, et al. Urinary myelin basic protein-like material as a correlate of the progression of multiple sclerosis. Ann Neurol 1996;40:128 ̶ 9.
Kaninia S, et al. Dehydration associates with lower urinary tract symptoms in progressive multiple sclerosis. Eur J Neurol 2024;31: e16175.

Bladder and bowel, Intimate issues

Detecting and preventing urinary tract infections

19/07/2025 Gavin Giovannoni

Frequent and severe urinary tract infections (UTIs) increase the likelihood that MS will progress. I recommend regular dipstick testing at home, as part of your MS self-management, to increase the chances of early detection and treatment of a UTI.

Urinary tract infection and disease progression

Infections, both viral and bacterial, are a known trigger of relapse. Frequent and severe urinary tract infections (UTIs) increase the likelihood that your MS will progress. This is why it is important to improve the management of bladder problems in people with MS to prevent or reduce urinary tract infections. You can do this in several ways, such as increasing the frequency of ISC.

Drinking plenty of liquids to flush the bladder reduces infection rates. Changing the pH of your urine by drinking citric acid (citro soda or lemonade) also helps. Making your urine more alkaline or more acidic may work, depending on the bacterial species colonising your bladder. Cranberry extract, for example, contains proanthocyanidins, a substance that reduces bacterial colonisation of the bladder. (You need to use the extract and not the juice because the proanthocyanidin concentration in the juice is too low to have an effect.)

Another very effective option (but infrequently used) is a bladder instillation with a liquid containing sodium hyaluronate (Cystistat), which replaces the glycosaminoglycan layer, or glycocalyx, of the bladder wall. This makes it difficult for bacteria to stick to the bladder wall to cause infections and is one way of preventing bacterial biofilms, or slime, from forming. Biofilms are a significant problem because they prevent antibiotics from reaching the bacteria to kill them and act as a breeding place for recurrent infections.

Urinary antiseptics are antibiotics, given in low concentrations, that may help to reduce urinary tract infection rates. They are typically administered in tablet form; they work by being concentrated by the kidneys and making the urine antiseptic, which helps to prevent or treat urinary tract infections. The agents I use currently are trimethoprim, cephalexin and nitrofurantoin. (Methenamine, another urinary antiseptic, is not readily available in the UK due to supply issues.) Cycling their use, every 3 ̶ 4 months, prevents the bladder bacteria from becoming resistant to a specific antibacterial. We have stopped using nalidixic acid and other drugs in the oxolinic acid class because they are associated with tendonitis and tendon ruptures.

Interpretation of urine dipstick results

Early detection of urinary tract infections (UTIs) means that they can be treated promptly to prevent symptomatic infection or complications such as pyelonephritis (kidney infection) and septicaemia (a common cause of death in people with advanced MS). Dipstick testing can be carried out at home, as part of self-management of your MS. I recommend doing dipstick monitoring once or twice a week, not daily. If positive, you must drop off a clean urine sample to your healthcare provider for proper laboratory analysis (microscopy, culture and sensitivity). This is to confirm the presence of a UTI, to culture and isolate the bacteria causing the infection, and to test the sensitivity of the bacteria to antibiotics. You must send your urine specimen for analysis before you start antibiotics.

For UTI monitoring, the leukocyte and nitrite tests are the most important, with backup from the protein, blood and pH tests. The guidance in the table below explains how to interpret some of the key dipstick test results relevant to UTIs and what the different readings on a typical urine dipstick mean. You need to wait up to 2 minutes to read the results; if in doubt, take a picture of the test strip with your mobile phone and email it to your HCP for interpretation.

Guidance to help you interpret the dipstick results relevant to urinary tract infection (UTI). You should wait for up to 2 minutes before reading the results (2 minutes for leukocytes, at least 60 seconds for other results shown here).
*If you have been treated with alemtuzumab, new-onset proteinuria in the presence of blood may indicate Goodpasture’s syndrome, a rare autoimmune complication of alemtuzumab treatment. Please consult your HCP.
UTI, urinary tract infection.

The image below shows what the different readings on a typical urine dipstick mean; the readings for white blood cells, nitrite, protein, pH and blood are important for detecting the presence of a UTI (more information is in the Table above). Further details about readings for urobilinogen, specific gravity, ketone levels, bilirubin and glucose are available in my newsletter entitled How to interpret a urine dipstick result.

An example of results from a urine dipstick test; the readings most relevant to interpreting urinary tract infections are white blood cells, nitrite, protein, pH and blood. Information about additional results from dipstick testing are available in my newsletter entitled How to interpret a urine dipstick result.

Bladder and bowel, Intimate issues

Intimate issues: bowel disorders

16/07/2025 Gavin Giovannoni

Here I discuss why people with MS develop problems with their bowel function and I offer straightforward advice on how to manage constipation, diarrhoea and other MS-related bowel problems.

Key points

Many people with MS experience a bowel disorder as a result of changes within the central nervous system that may affect the rectal and anal muscles.
Agents that increase the muscular action of the bowel can help to treat constipation.
Medications for some MS symptoms can increase constipation and may need to be reviewed.
Faecal impaction associated with constipation is a serious problem that may need hospital treatment.
Small intestinal bacterial overgrowth (SIBO) from faecal impaction may occur if the bacteria of the small intestine increase above normal values, producing harmful toxins.
SIBO is associated with unpleasant symptoms including abdominal bloating, pain, anaemia, irritable bowel syndrome, constipation, diarrhoea and faecal impaction.
Bowel hypomobility and any faecal impaction underlying SIBO need to be addressed, and antibiotics may be required to reduce the abnormal bacteria in the bowel. A gut health programme and dietary review are important for long-term management.
Being incontinent of faeces in public is highly embarrassing and may lead to severe anxiety and social isolation.
Faecal urgency or incontinence are best treated by developing a bowel routine and trying to evacuate your bowels in a controlled environment and at a regular time of day.
Regular rectal or transanal irrigation can significantly improve the quality of life in such cases.
MS should be treated early with effective DMTs, to avoid or delay damage to the neuronal pathways that control bowel function.

Many people with MS experience bowel disorders, including constipation, faecal hesitancy (difficult initiating a bowel action), incomplete emptying, faecal urgency, urgency incontinence, overflow diarrhoea, excessive bloating and excessive flatus. Understanding the causes of rectal and anal dysfunction in patients with MS can help us to select the most relevant therapies to target specific symptoms.

People with MS who experience constipation generally have a loss of sphincter tone (strength) at rest and during contraction compared with non-MS patients. In faecal incontinence, rectal sensitivity threshold is reduced, meaning that when faeces enter the rectum the threshold at which the defaecation reflex is triggered is lower than normal. There is also evidence that the coordination of the pelvic floor following contraction of the anal sphincter is abnormal in people MS. Pelvic floor exercises may help with this.

Management of constipation

Bowel dysfunction, particularly constipation, is common in MS. Constipation occurs because the MS bowel is sluggish due to reduced motility (i.e. the muscles or nerves do not work as they should). The management aim is usually to encourage regular bowel action, either daily or at least every two days.

Prokinetic agents that increase the muscular action of the bowel can help to treat constipation. The prokinetic agent I prescribe most often is senna. If this fails, other options include bisacodyl, co-danthrusate, sodium picosulfate or prucalopride; these agents work by stimulating the nervous system in the bowels. Prokinetic agents often need to be taken with bulking (fibre) and loosening (liquid) agents. Bulking agents include methylcellulose, psyllium or ispaghula husks, and sterculia granules. Loosening agents keep liquid in the bowel, causing water to be retained with the stool; examples include lactulose, polyethylene glycol (Movicol), magnesium hydroxide and magnesium sulphate (Epsom salts).

Cyclical use of laxatives can contribute to ongoing constipation: you use laxatives to treat your constipation, the laxatives cause diarrhoea, so you stop taking them. You then become constipated again, and the cycle repeats itself.

If you experience bladder incontinence, dehydrating yourself to control your bladder problems can make constipation worse; you must drink adequate quantities of water throughout the day. Similarly, anticholinergic drugs used for treating urinary frequency and urgency and treatments for pain and spasticity may all make constipation worse. Therefore, if you are constipated your medications for other symptoms of MS need to be reviewed.

Faecal impaction

Over time, the bowels may become impacted with faeces, and a hard, stony mass of compacted faeces forms (known as a faecolith). The gut bacteria may then overgrow and liquefy the stool above this impacted faecolith, bypass the impaction and cause diarrhoea. A typical history of faecal impaction includes periods of constipation punctuated by episodes of diarrhoea. If you suffer from chronic constipation and intermittent diarrhoea, you should contact your health team for help. Faecal impaction is a serious problem and often warrants treatment in hospital.

Below are some tips for managing MS-related constipation.

Optimise your diet by eating lots of fibre.
Don’t dehydrate yourself. Drink plenty of water; be aware that caffeine and alcoholic beverages are not hydrating. Both cause the kidneys to make more urine (diuresis) and are dehydrating.
Try to eliminate the concurrent use of medications that exacerbate constipation (anticholinergics and opioids).
Exercise regularly; the anticipation of exercise and exercise itself stimulate a defaecation reflex.
If you need to use laxatives, start with a prokinetic agent that stimulates the bowel to move, such as senna; then add in bulking agents (e.g. psyllium husks or other fibre substitutes) followed by liquifying agents (lactulose or polyethylene glycol).
Don’t suppress the need to go to the toilet; many people with chronic constipation have learnt bad habits (such as not using toilets that are unfamiliar to them).
Try to develop a daily bowel routine, for example, by having a bowel movement at a particular time (ideally in the morning). This may require you to stimulate a bowel movement, perhaps by eating something, drinking a caffeine-containing drink, anal stimulation (anal plug), using glycerine suppositories, mini-enemas or (if necessary) an anal irrigation system. An anal plug is used to stimulate the colonic emptying reflex and is removed before you have bowel action.

These final recommendations may sound extreme, but they are essential steps to prevent faecal impaction. They may also give you the confidence to go out knowing that you can avoid faecal urgency and incontinence.

Small intestinal bacterial overgrowth (SIBO)

People with MS with bowel dysfunction may develop small intestinal bacterial overgrowth (SIBO), which is defined as an increase in the bacterial content of the small intestine above normal values. Some studies show that four in every 10 people with MS have SIBO; it is also detected in approximately one-third of patients with gastroenterological complaints who undergo a breath test. Proton pump inhibitors (omeprazole and related drugs) and smoking are risk factors for developing SIBO. The risk of SIBO increases with age and does not depend on gender or race.

SIBO is associated with dyspepsia, abdominal bloating, abdominal pain, anaemia, irritable bowel syndrome, functional constipation, diarrhoea and faecal impaction. A slowdown in your bowel transit time with SIBO decreases the normal clearance of bacteria from the small intestine. This slowdown is due to changes in the motility of the intestine, which is almost universal in people with MS.

Risks from SIBO

SIBO may damage the intestinal surface or mucosa of the bowel, because the bacteria can produce harmful toxins. This can result in leaky gut syndrome and acquired lactose intolerance. The leaky gut syndrome is controversial and associated with many symptoms that may overlap with MS-related symptoms. Leaky gut syndrome is not medically defined, and no specific tests or treatments are available. In comparison, acquired lactose intolerance occurs when someone loses the ability to digest lactose, the main sugar in milk, which causes them to develop diarrhoea, gas and bloating after eating or drinking dairy products. If you have lactose intolerance, you quickly learn to avoid lactose-containing products or use lactase preparations that help digest lactose. Please note that cheeses and yoghurt are generally tolerated because the bacteria used in the culturing process to produce these dairy products break down the lactose.

We know that many bacterial overgrowth products can impact human metabolism and behaviour. For example, people with liver dysfunction can’t metabolise these bacterial toxins and they develop hepatic encephalopathy. People with neurological disorders with reduced brain and cognitive reserve tend to be more susceptible to the effects of these bacterial metabolites, which are thought to upregulate innate immunity in the nervous system. This is why I try to stress to my patients that they should manage their constipation to prevent this from happening. Severe constipation and faecal impaction should be viewed as a chronic infection and managed and treated.

Diagnosis of SIBO

A breath test is most commonly used to diagnose SIBO. This noninvasive test measures the amount of hydrogen or methane you breathe out after drinking a mixture of glucose and water. A rapid rise in exhaled hydrogen or methane indicates bacterial overgrowth in the small intestine. Although widely available, breath testing is less specific than other tests for diagnosing bacterial overgrowth.

The gold standard for diagnosing SIBO is a small intestine aspirate and fluid culture. The fluid sample is obtained as part of a small bowel endoscopy. Other tests can include abdominal X-rays or CT scans. Faecal impaction resulting from constipation can also be diagnosed from spinal MRI scans of people with MS.

Management of SIBO

The initial way to treat bacterial overgrowth is to manage the underlying bowel hypomobility problem and clear any faecal impaction. In parallel, a course of antibiotics may be needed to reduce the number of abnormal bacteria in the bowel. However, unless you deal with the underlying problems, the bacteria will repopulate the bowel when the antibiotics are discontinued. This is why some people with SIBO may require long-term antibiotics. Switching between different antibiotics helps prevent bacterial antibiotic resistance from emerging. Please be aware that antibiotics wipe out most intestinal bacteria, both normal and abnormal; hence, they are not an ideal long-term solution to SIBO.

Starting a gut health programme is an essential part of treating SIBO. You will need a nutritional review, possibly with a dietitian, and you may need to change your diet to prevent constipation and/or faecal impaction. In some cases, you may require supplements. particularly if you are vegan.

Management of faecal incontinence

Being incontinent in public is one of the most embarrassing things that can happen to someone with MS, and it may result in social isolation to avoid experiencing the embarrassment again. Many patients with MS describe their experience of being incontinent of faeces and/or urine in public as the worst thing that has happened to them. It doesn’t have to happen; there are many ways to prevent it.

Faecal urgency needs attention (as does urgency incontinence – see section on bladder disorders). It is best treated by developing a bowel routine and trying to evacuate your bowels at a regular time of day, typically in the morning. This can be aided by using something to stimulate the bowels. I usually start by prescribing glycerine suppositories or mini-enemas. If the latter fails, I may elect to use transanal irrigation.

Transanal irrigation may sound drastic, but it often makes a massive difference to the quality of life in people with MS who need it and helps them to tackle a problem that can otherwise leave them stranded at home. I regularly refer patients for assessment to use the commercial rectal irrigation system, Peristeen, mainly because of the psychological benefits they derive from it.

The biggest problem with poor rectal compliance and faecal urgency is the odd occasion when you have diarrhoea due to gastroenteritis. With diarrhoea, whatever the cause, your rectum fills multiple times during the day and hence you are more likely to be incontinent. In this situation, you may need to use incontinence pads.

Faecal incontinence is not necessarily linked to disability. Why not? The reason is that a strategically placed MS lesion in the spinal cord can impact bowel function without causing other disabilities. I have patients who have had spinal cord relapses that leave them with faecal urgency and episodes of faecal incontinence, but very little other disability.

Case example

One patient of mine developed a severe anxiety disorder following an episode of faecal incontinence in public. She had intrusive thoughts and unpleasant flashbacks, reliving the episode repeatedly. After referral to a psychiatrist, she was diagnosed as having post-traumatic stress disorder. It took several years of counselling for her to overcome the social phobia associated with her anxiety and start going out again.

She now ventures out only after having an enema to clear her lower colon and rectum; she never eats when she is out, so as not to stimulate the reflex urge to defaecate that follows eating. She wears pads and carries a change of clothing. Her faecal incontinence emergency pack contains wet wipes, clean underwear, spare continence pads and poo bags to dispose discreetly of any used items – the same items I packed when I went out with my daughters before they were potty trained.

The importance of managing bowel dysfunction

Bowel dysfunction is one of the hidden symptoms of MS. To assess whether or not you have a bowel problem, and its severity, you can complete the Wexner Incontinence Score. Over the lifetime of the disease, most people with MS develop bowel problems, so it is important to realise that much can be done to help you. Please discuss these symptoms with your neurologist or MS clinical nurse specialist.

On the positive side, if MS is treated early and effectively before the neuronal pathways that control bowel function are damaged, these issues can usually be avoided or delayed. Preventing disability, such as bowel dysfunction, is better than treating it. This is another critical reason to manage your MS actively with DMTs.