In our house, we celebrate poo. That’s because my 10-year-old daughter suffers from Encopresis, a condition also known as faecal incontinence.
It means children who are past the age of toilet training regularly do poos in places other than the toilet. They can’t control when and where the poo comes and it’s usually caused by chronic constipation.
While there is no Australian data, US studies say it affects up to seven per cent of kids between five and seven years of age.
Sadly, people usually pass judgement on the parents or the child for being lazy. This is far from the case. We do everything we humanly can -- and we do it alone. This condition is one that is dealt with by parents behind closed doors, with no crowdfunding campaigns or coloured ribbons to acknowledge the issue.
Toilet training started for my daughter at age three. She was always late with her milestones as she was born slightly premature, and it was on this premise that I decided to wait until she showed me signs of wanting to be toilet trained rather than me worrying about it pointlessly.
It was getting close to her starting kindergarten and she was weeing on the toilet but didn’t like to poo on the toilet. She started having poo accidents in her knickers. She would tell me she didn’t like to poo on the toilet as it hurt. I took her to our GP at the time and he felt her stomach and said that she was impacted with poop (not uncommon) and gave us a referral to see a paediatrician and to have an X-ray of her abdomen, which we did. The X-ray did in fact show that she was impacted with faeces and the paediatrician told us to start her on a laxative to help flush her out and have her sit on the toilet for 10 minutes three times a day, morning, noon and night.
The paediatrician explained that what happens with children who hold on to their poop is that the colon stretches and eventually the signal from their rectum to the brain to let them know they need to do a poo stops working properly.
It was around this time that I realised my daughter suffered a bit of anxiety and didn’t like to talk about her poop problem. As a working single mother I really relied on her child care workers and other family to help me with this. Little did I know the likely root cause of her condition was a scolding by a day care worker when she had had an accident in her knickers. She recalled the story to me during one of her psychology sessions and said she felt embarrassed and ashamed for having the accident at child care. I can only assume that after that she deliberately started holding on to her poos while she was at child care to avoid being told off again. Holding on caused the constipation, which caused the poo to hurt when she did release her bowels and then started the cycle that has become our life.
Trying to find the right laxative and the right dosage is the hardest part of the condition to navigate. Too much and you have a child with severe explosive diarrhoea and too little it doesn’t clear the impaction completely and you are back to square one. Tears and tantrums are also part of the battle - hers and mine.
I really felt like I didn’t have much control of the situation and just hoped that she would grow out of it.
I have grieved for the loss of her carefree childhood. Swimming lessons – forget it. Sleepovers – not unless the kids come to our place. She has to hide her pads when she is at school to take to the toilet to change herself. Sleeping or sitting in soiled knickers for long periods also causes urinary tract infections. All this means my once-happy child takes numerous, daily medications, which she detests, and which can have side-effects.
Fast forward six years and she is now 10 and we are still at the same place we were when she was five. The school holidays consist of a colon clear out (something to always look forward to). It is a viscous cycle of explosive diarrhoea, not really knowing if she has been fully cleared out or not, then trying to keep any future poo soft to allow the colon to recover from being over stretched and start working properly.
To date we have been through a list of various specialists in order to seek a magic cure to this condition. Three paediatricians, two psychologists, a psychiatrist, an occupational therapist, a kinesiologist, a nutritionist and a chiropractor.
One paediatrician told me that I needed to make sure my daughter sat on the toilet for 10 minutes 16 times a day! I left her office in tears. As a single, working mother how was I supposed to manage that?
I don’t feel like the medical fraternity really know the best way to treat this condition. There is a lot of reliance on parents to manage it.
The emotional cost and the cost of seeking specialist care has taken its toll on me as well. Encopresis is not listed on the NDIS scheme, therefore I cannot get access to funds for therapists or the over-the-counter laxatives, cleaning products and sanitary pads I buy. I do not qualify for a carer's allowance, as her condition is not permanent, and I supposedly earn too much as a part time administration worker at a school to have a Health Care Card.
There are days I feel that I can’t take it anymore, I just want to crawl up in a ball on the floor and not have to deal with it. Other days I take the bull by the horns and do my best to be the loving parent as well as the firm matron to make sure my child is pulling her weight as well in the process. It is a very fine balancing act.
In telling my story I want to raise awareness about the underlying physical issues going on with the condition. It is complex and unfortunately there is no magic cure. I would not wish this on any parent or child.
Recently I joined a support group for Encopresis parents of Australia on Facebook and have had contact with people who have adult children still struggling with the condition. While I’m still fearful of what the future holds the support group has given me an outlet to discuss different solutions and anecdotes with parents who are in the same predicament as me. It has been a relief to know that I am not alone in the nightmare.
Support
The Continence Foundation of Australia recommends parents try these places for support.
National Continence Helpline
The National Continence Helpline 1800 33 00 66 is a free telephone advisory service staffed by a team of continence nurse advisors who provide information, education and advice on bladder and/or bowel problems. The Helpline is funded by the Australian Government Department of Health and available to anyone living in Australia. It operates 8am-8pm (AEST) Monday to Friday.
Incontinence in Confidence – inconfidence.org.au
Incontinence in Confidence supports adolescents at all stages – from those who have never seen a doctor for continence concerns, through to people who have been diagnosed.
The new website covers a wide range of content including: what incontinence is, who it affects, the benefits of starting and persisting with treatment and relevant pathways to engage with different health professionals. There are tips for building confidence, mental health support, dating and relationships, as well as managing incontinence during sports and sleepovers.
For parents
The Children/Teens section of the Continence Foundation of Australia provides general information for parents with children with bladder or bowel issues.
Support for schools and teachers
Toilet Tactics is a free program to help educate teachers and primary schools on how to support students who have bladder or bowel issues. It is designed to help promote healthy toileting habits in children and improve or maintain the standard of school toilets across Australia.
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