People with scleroderma often develop abnormalities at any level of the digestive and gastrointestinal tract and despite the best efforts in self-care, urinary or faecal incontinence or constipation may occur.

In our November Virtual Education, our guest speaker, Janie Thompson, National Continence Helpline Manager and Nurse Continence Specialist of Continence Foundation of Australia, discussed continence, how it affects people with scleroderma and what resources there are available and what support services are accessible. 

Continence and Incontinence

Continence is a term that refers to the ability to choose the time and place to pass urine or a bowel motion.  

Incontinence is the accidental or involuntary loss of urine or a bowel motion. This is a common problem which affects over five billion Australians over the age of 15. 

Scleroderma and the bladder

Some of the more common signs and symptoms a person with scleroderma might experience is frequency or rushing to the toilet, urgency or going in a hurry, and nocturia or going to the toilet at night.

Scleroderma can cause bladder problems. Bladder spasms are common in scleroderma, and they can cause urinary tract infections (UTIs).

What is normal bladder function? 

  • Going to the toilet 4-6 times per day 
  • Going to the toilet once or less at night 
  • No rushing to the toilet 
  • No going constantly to the toilet 
  • No accidental leakage at all 
  • Passing up to 400-600ml each time 
  • Having less than 50ml left behind in the bladder after passing urine 
  • Good stream – strong and continuous 
  • No trouble starting the flow of urine when on the toilet 
  • No after dribble or leakage when leaving the toilet 
  • No straining or pushing to pass urine 
  • No pain or burning when passing urine 
  • No feeling of not being completely empty 
  • Able to hold on until it is convenient to use the toilet 

If you have poor bladder control

  • You may rush to the toilet 
  • Have accidental leakage 
  • Go to the toilet often during the day 
  • Wake up to go to the toilet more than twice at night (if over 65)

 

There are many types of incontinence, including:

  • Urge incontinence – the need to pass urine or stool suddenly and without warning. 
  • Stress incontinence –  when you cough and sneeze and you leak and they’re stress on the neck of the bladder or the pelvic floor. With people with scleroderma is when the bladder suddenly wants to empty very quickly and you need to rush to the toilet and it’s hard to hang on.
  • Overflow incontinence – when you don’t empty your bladder, well, and you might leak a little bit and just get a bit out, but it can sort of seem a little bit like you’re rushing and going frequently but it’s a poorly emptying bladder.
  • Functional incontinence – when you physically mentally or environmentally can’t get to the toilet.  This is when your urinary tract is functioning properly but other illnesses or disabilities are preventing you from staying dry.



Scleroderma and the bowel

Scleroderma can affect the bowel in a variety of ways. Scleroderma can affect the digestive system and can cause diarrhoea, constipation,  defaecation dysfunction,  and faecal urgency . Bowel movement can slow and passing stools can be difficult.

What is normal bowel function? 

  • Going to the toilet anywhere from 3 times per day to once every 3 days
  • Passing a soft, formed bowel motion 
  • No leakage of solid, liquid or gas 
  • No rushing to the toilet 
  • No excessive straining or pushing to pass a bowel motion 
  • No feeling of not being completely emptying 
  • No pain on passing a bowel motion 

If you have poor bowel control:

  • You may have accidental leaking 
  • Soil your underclothes 
  • Strain to empty your bowel 
  • Be unable to control wind

Scleroderma can affect bowel and bladder function, causing constipation or urinary incontinence. 

Scleroderma Australia has developed a brochure to help you in dealing with bladder and bowel complications in scleroderma. You can download it here. 

See your doctor or a health professional if you:

  • Rush to the toilet
  • Don’t make it in time
  • Are unable to hold on
  • Can’t control passing wind
  • Leak when you laugh, cough or sneeze
  • Have trouble passing urine
  • Strain to empty your bowel

Seek URGENT attention if you:

  • Suddenly cannot pass urine
  • Have stinging/burning when you pass urine
  • Are constipated
  • Have diarrhoea for more than 24 hours

If you’re struggling with any of these conditions, it’s really good to start a conversation with your GP and to see if they can do some testing and investigation and start some treatment.

People with scleroderma can take several steps to improve bowel and bladder function.

  1. Drink well 
  2. Eat well 
  3. Be active 
  4. Work your pelvic floor muscles 
  5. Follow toilet tips

 

A continence assessment

There are many possible causes of incontinence and therefore many different treatment options and the first step is to be properly assessed. 

What’s involved in a continence assessment?

A continence assessment will require you to visit a continence health professional. You will be asked to share your story and asked to fill out a chart to show when you pass urine (wee) or have a bowel motion (poo). A physical examination is likely as this will help the health professional to know what kind of continence problem you have.

Once the type and causes of the problem have been identified the continence health professional can develop a management strategy for your needs.

If products are needed, a continence nurse will help you choose the right product for you, teach you how to use and care for products and help you apply for financial assistance.

Where to get financial help 

There is a range of services available to support people with incontinence. 

 

Continence can be managed, treated and sometimes cured. 

There is a range of health professionals who can help people with scleroderma and bladder or bowel symptoms. These include continence nurse advisors, continence physiotherapists, a scleroderma nurse or your doctor. Health professionals may discuss a range of treatment and management options with you.

 

Other support services for people with incontinence

National Continence Helpline – www.continence.org.au -1800 330 066  A free service staffed by a team of continence nurse advisors who provide free resources, details of continence services and advice about subsidy schemes. 

National public toilet map  —a list of all public toilets across Australia. Ideal for people with bladder or bowel control problems who are planning an outing or a trip as you can map  the toilets along a specific route.

 

Next Virtual Education Session – Scleroderma and Skin

Please save the date for our next Virtual Education Session on February 11, 2023.

Where do I register?

Our future events will be listed on Eventbrite, so please follow Scleroderma Victoria to be kept up to date on all our events. These events are free for everyone to attend.