Many people with multiple sclerosis experience bowel problems. Some people find that they have no control over when their bowels open, resulting in bowel accidents. Your health professional may refer to this as faecal incontinence. Fear of having a bowel accident can be very worrying.
There are many successful approaches to treating and managing bowel accidents. Health professionals, including your MS specialist nurse, GP and continence services can work with you to find the solutions that work for you. For some people this can involve trying a number of different approaches.
What is bowel incontinence?
Bowel incontinence (also called faecal incontinence) is a lack of control over when your bowels open and this can result in leakage and accidents.
What causes bowel incontinence?
Bowel accidents can happen in multiple sclerosis for a variety of reasons. The most common cause of bowel accidents is constipation. When a hard plug of impacted stool builds up in the back passage, a loose, watery, diarrhoea-like fluid can pass around it and leak out. This is known as overflow incontinence.
Bowel accidents can also be caused by reduced sensation in your back passage, so you don't recognise the urge to go to the toilet, and reduced control of the muscles at the bottom of your anus.
If your stool becomes loose for any reason (over use of laxatives, too much dietary fibre, or gastrointestinal infections causing diarrhoea) bowel accidents are more likely because it is more difficult to feel and control the loose stool.
How many people have bowel accidents?
Studies suggest that as many as five out of ten people with MS experience a bowel accident at some time. They are more common in people who have mobility problems as reaching a toilet quickly may be difficult.
What can I do if I have bowel accidents?
Get in touch with a health professional even if you may feel awkward talking about bowel problems. All health professionals should understand that MS can have an impact on how the bowel works so don't be shy in raising this. Your MS nurse, GP or continence advisor are all experienced in dealing with these problems and should be able to put you at your ease. Although health professionals might tend to use more medical language, such as faeces or stool, using poo or number 2s is fine. Use the language you feel most comfortable with.
If only I had discussed this with someone sooner it would have saved years of uncertainty, worry, loss of dignity and freedom.
Hospitals and local primary care services also have a continence advisor, or continence service, that deals specifically with bladder and bowel problems. In some areas you may be able to contact continence services directly, or else your MS specialist nurse or GP can make a referral. You can search for your local continence service on the Bladder and Bowel Community website.
Get to know your bowels, keeping a diary can give you an overview of how your bowel problems affect you over time. You could keep notes in a notebook or there are smart phone apps available to help you monitor your bowel function, such as the Bristol Stool Chart app. You can share it with your health professionals to demonstrate your bowel patterns. Write down what you had to drink, eat, any medication you take and when you go to the toilet, along with any problems with emptying your bowels or episodes of leakage or incontinence.
Try pelvic floor exercises as these may strengthen the muscles around the anus and allow you greater control. In MS nerve damage can result in weakness to the pelvic floor (the sheet of muscles that form the 'floor' to the pelvis and support the bladder and bowel). This is because damaged nerves, mainly within the spinal cord, are not transmitting messages to the pelvis floor muscles as effectively as they used to. Both men and women can do pelvic floor exercises. These exercises are usually taught by a continence advisor or specialist physiotherapist. You can find out more about pelvic floor exercises on the NHS website.
Think of it as bowel physio, you change the muscles you use and strengthen them to come to the rescue!
Establish a bowel management routine by emptying your bowels at a regular time that suits you, possibly using laxatives, suppositories or transanal irrigation. This can reduce the changes of bowel accidents.
How is bowel incontinence treated?
The aim of treatment for bowel incontinence is to regain control over when you open your bowels. There are a number of approaches and it may take some time and a combination of strategies to find out what works for you.
This is a technique available in some specialist centres. It aims to retrain your awareness about bowel opening, diet and fluid intake. It can include sessions on how the digestive tract works, dietary changes, bowel and muscle retraining, behavioural therapy and psychological support. Your continence advisor can discuss biofeedback retraining with you in more detail.
This involves introducing warm tap water into the bowel via the anus using a catheter or cone whilst you sit on the toilet. The water helps to wash faeces out of your bowel and encourages the muscles in your bowel to contract and push the stool out. Assessment and training with a suitable healthcare professional is essential before using transanal irrigation. There are a number of systems currently available on prescription, including Peristeen, Qufora, Aquaflush and Irypump.
I don't have to worry about accidents or about not being able to go out for fear of being too far away from a toilet.
For a few people with MS, surgery may be an option when bowel accidents are having an unacceptable effect on quality of life and cannot be improved in any other appropriate way. Surgery offered is usually a colostomy. This involves bringing the end of the bowel out through the wall of the abdomen, so waste is collected in a special bag. This can be a very positive choice for some people but it needs to be carefully discussed with your surgeon and continence advisor or MS specialist nurse.
So I now have a bag stuck to my abdomen - a small price to pay to be totally continent.
Products that can help
Pads and pants
When all other ways of improving continence have been tried, pads and pants can help to deal with bowel accidents. There's a wide variety of discreet products available and organisations and websites that can help you choose what might be most appropriate for you. Some incontinence products, such as pads, are available on the NHS. Your local continence service will be able to advise on whether you qualify. This will usually involve an assessment.
This is like a tampon and is easily inserted into the rectum (like a suppository) to help control leakage of faeces. The plug can be left in place for up to 12 hours after which it is easily removed. It is important that you are assessed by your continence nurse or appropriate healthcare professional before you try it.
The plug has given me so much more confidence to go out more often. I know I am not going to leak, it has been brilliant for me.
Caring for the skin around the anus is important. Barrier creams, such as Sudocrem and Cavilon, can be useful in preventing discomfort, soreness and damage if incontinence is a problem. Carefully washing and patting dry the area if the skin is soiled after a bowel movement, wearing loose cotton underwear that allows skin to breathe and avoiding perfumed soaps, creams and lotions can all help.
- London: MASCIP; 2012. Full article Guidelines for management of neurogenic bowel dysfunction in individuals with central neurological conditions.
- Cochrane Database of Systematic Reviews 2014, Issue 1. Art. No.: CD002115. Full article Management of faecal incontinence and constipation in adults with central neurological diseases.
- London: NICE; 2007 (reviewed 2018). Full guideline Faecal incontinence: the management of faecal incontinence in adults.
- International Scholarly Research Notices Neurology 2012;2012:376023. Full article Anorectal dysfunction in multiple sclerosis: a systematic review.
- Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD002116. Full article Drug treatment for faecal incontinence in adults.
- BMJ 2016;354:i3931. Summary What is the best way to manage neurogenic bowel dysfunction?
- Neurourology and Urodynamics 2018;37:46–53. Full article Neurogenic bowel dysfunction: clinical management recommendations of the Neurologic Incontinence Committee of the Fifth International Consultation on Incontinence 2013.
Many people with MS experience bowel problems. One of the possible problems is constipation, when hard stools (poo or faeces) are passed less than three times a week.
Managing your bowels
This publication discusses why bowel problems can be part of MS and provides a practical approach to their management.
Continence services are specialist teams of health professionals that can help you manage your bladder and bowel problems.