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World Continence Week (19-25 June 2017)

elephant in the room
19 June 2017

For many people living with MS, losing control of bodily functions is a day-to-day concern. 

This week’s ‘elephant in the room’ is Incontinence – not a popular topic, but one we should discuss!

Continence refers to our ability to hold it all in. It comes from the Latin word ‘continentia’ which means ‘a holding back’, i.e. holding back bodily functions.

So incontinence is a term that describes any accidental or involuntary loss of urine from the bladder (urinary incontinence) or bowel motion, faeces or wind from the bowel (faecal or bowel incontinence).  As we said earlier, not something we normally want to talk about!

But with World Continence Week underway, it’s a great chance to start the conversation!

Incontinence is a widespread condition that ranges in severity from 'just a small leak' to complete loss of bladder or bowel control. In fact, over 4.8 million Australians have bladder or bowel control problems so no one should feel alone.

This year’s World Continence Week theme, Incontinence: No laughing matter, tackles a common response by people to laugh off incontinence, and associate it solely with childbirth or ageing, not a health issue requiring specialist treatment. 

For people with MS, bladder and bowel dysfunction (including incontinence) can occur if demyelination of the nerves (which control the bladder and bowel) affects the transmission of nerve impulses from the brain, to the bladder and bowel, and back again; in some cases causing a complete loss of sensation.

The good news is incontinence can often be treated and managed.  

Andrew Potter has lived with MS for close to 30 years, with continence an ongoing issue:

“This used to be a real problem for me, especially when I was newly diagnosed with
MS, but now I’m on the right medication and providing I stick to my routine I’m able to manage the challenge of continence as best I can.”

If you have bladder or bowel concerns you should talk to your GP or MS Nurse about medication, continence aids, diet, exercise and lifestyle adjustments. Make sure you tell your neurologist about new and/or persistent symptoms. For serious concerns, you may be referred to a urologist (bladder) or gastroenterologist (bowel).

Like Andrew, with the right advice, you can manage these symptoms, prevent complications or associated illnesses and maintain a healthy and active lifestyle

Small changes, such as an easy-to-access toilet or bathroom at home and at work, can make a big difference.

Knowing the location of toilet facilities also brings peace of mind. Check out the National Toilet Map  via compatible mobile phones and the National Public Toilet Map iPhone App. Consider calling ahead to your destination to ensure there are adequate, accessible facilities. 

And what about sex? Even with bladder and bowel issues, you and your partner can still enjoy intimacy.  Discuss this with your partner or, for a tailored plan, your MS nurse or continence adviser.

Whilst your GP should be the first contact for any new and/or persistent continence concerns, MS nurses and other healthcare advisers can also help you to manage these symptoms on an ongoing basis.

Here are some other sources of help and advice:

  • The Continence Foundation of Australia (www.continence.org.au) has trained advisers and whilst you don’t need a referral, it’s helpful if your doctor is aware of the visit
  • National Continence Helpline 1800 33 00 66
  • Independent Living Centres 1300 885 886 (www.ilcaustralia.org) has a range of products to assist with continence and day-to-day living
  • Carers Australia 1800 242 636 (www.carersaustralia.com.au) provides information and advice to carers, their friends and families about carer support and services
  • The national Continence Aids Payment Scheme (CAPS) provides financial assistance for eligible people living with MS, to meet some of the cost of continence products. Visit www.bladderbowel.gov.au for guidelines and applications forms (to be completed by your doctor or continence adviser)
  • The Department of Veteran’s Affairs (DVA) 133 254 has various continence products for eligible veterans via the Rehabilitation Appliances Program (RAP). Speak with your doctor or the DVA.

For information about MS, MS treatments, MS symptoms (including our newly-updated Continence care fact sheet), and state/territory support services, visit www.msaustralia.org.au