Continence and MS

01.10.19

Written by Therese Burke

Reproduced with the kind permission of Link, from their magazine's October 2019 issue.

Continence refers to the ability to voluntarily control your own bladder or bowel; while incontinence is the inability to control these functions. A large part of personal care in living with all forms of multiple sclerosis (MS) is considering issues around continence, both urinary (bladder) and faecal (bowel) continence.

Have you ever found yourself declining an invitation because you feared staying continent for the car ride, stopped exercising due to leakage, or declined an outdoor activity where you could not be certain that a toilet was on the premises?

Continence issues can cause social isolation, loss of friendships and community and work issues. But it doesn’t have to always be this way. There are many management strategies that can assist and help people living with MS to get back into life and live well with MS. Well managed continence can be the gateway back to social relationships for some people.

Factors related to MS which can influence continence include MS lesions and inflammation in certain areas of the brain and spinal cord where ‘continence centres’ reside, but can also be caused by a multitude of reasons, not just related to MS. These include repeated urinary tract infections, gynaecology and post-natal issues and prostate issues to name a few. For this reason, it is always advisable to discuss any continence issues as soon as possible with your general practitioner, neurologist or MS nurse (collectively referred to as health care professionals, HCPs) so that a professional assessment can be made to help in finding the best course of action.

Although it may seem embarrassing to discuss at first, most people very quickly become used to discussing continence issues. Believe me, your HCP has seen and heard it all before and they are more than happy to help.

Little continence issues can easily become big continence issues, so early intervention is key.

Lines of questioning can help your HCP to decide if your bladder continence issue is a failure to store urine, a failure to empty urine or a mixed problem.

In the case of bowel incontinence, questioning may include the consistency and frequency of bowel movements, colour and smell. Each specific dysfunction has specific management strategies and it is imperative that the correct diagnosis is made. This may necessitate keeping a bladder or bowel diary and a fluid intake diary so that your HCP can see exactly what has been happening.

Management strategies for continence can be relatively simple for some issues and more complicated for others. Sometimes trial and error is the way to a solution, but your HP can provide the guidance on the path.

Additionally, there are continence advisors in the both community and hospital and clinic systems who are experienced in all forms of continence, bladder and bowel, and across many conditions. They are usually highly trained registered nurses with specific and particular expertise in bladder and bowel management and can be accessed through your HCP. In some cases, people living with MS may be referred for more specialised help or specialist procedures or investigations to a urologist.

There are many aspects to selfcare and personal care when living with MS. These include attention to general wellness, exercise, a healthy diet, mental health, work and home life balance, healthy and fulfilling social relationships, sexuality and continence.

Continence is part of the all over plan to have people living their best life possible, with quality of life at the forefront and not in the background. There is help for incontinence and that help is just around the corner. Make continence part of your personal care plan.

For more info, read our symptom sheet on Continence Care

Therese Burke

Therese Burke has been working as a Clinical Nurse Consultant in MS for over 10 years and as a researcher in the MS field for over 15 years and is based in a major Sydney Hospital. Therese is currently working on a PhD centred around what it feels like for people living with RRMS (relapsing-remitting multiple sclerosis) in the modern day with so much information, so many treatments and so many choices. Therese has a passion for educating people and families living with MS, particularly at the start of the journey and has co-authored an international paper on the evolving role of the MS Nurse.