Tue 24, Sep 2019
My daughter is now 10, and her troubles with soiling and faecal incontinence haven’t resolved.
There are certain things no one tells you as a parent. Everyone tells you to breastfeed, and to make sure your child has enough sleep, and what to feed them.
But no one tells you that if your kid isn’t pooing on the toilet properly, it can really affect them for years to come.
Incontinence isn’t a simple fix - because of years of constipation, my daughter’s colon has stretched.
As an infant, she was slow with all her milestones and I thought she was never going to crawl, then I thought she was never going to walk, never going to talk. As a new mum, you worry about everything. Then they do it and you go, “Why did I worry?”
With toileting, I knew she was later than all the other kids. I thought that when she was ready, it would just click and come naturally.
For her, it just didn’t come naturally. I worried and went to the paediatrician as she was continuously soiling her undies at about four or five-years-old, just before starting school. I was told, medically, they didn’t really see it as a problem until age seven. Years later, I’ve learnt that the recommendation is for children to be continent of their bladder and bowel by school age. If they aren’t, it needs to be addressed with a continence health professional to treat and manage.
At the time, the paediatrician found my daughter was constipated and I followed the instructions to start her on a stool softener every day. So, the six-year-long cycle of what we call ‘poo-namis’ began.
It’s really hard to work out how much laxative your child needs to flush their bowels out. It is a delicate balance and it’s easy to give them too much, which can result in explosions of poo.
Because of this, weekends are spent at home and you start to feel isolated.
You can’t go to the pool. You’ve got to have activities close to home. When you’re at home, all you seem to be dealing with is poo. It’s just a never-ending cycle.
We always have buckets soaking and every weekend I’m washing out what looks like sticky, horrible, smelly peanut butter.
You see your other friends out and about with their kids. You hear about their kids who are toilet trained in a week. It isn’t something I can speak about with my friends, because it’s hard for them to understand if they’re not in the same boat. The conversation will go: “We’ve had another poo-nami,” and they laugh. Well no, it’s not really funny, because I’ve been dealing with that every week for six years.
Apart from the emotional toll, there’s the financial burden, and I’m not eligible for funding to help manage the costs of all the continence products, laundry, laxatives, UTI medication, medical appointments, and other expenses.
Once, a paediatrician advised me to make sure my daughter sat on the toilet, 16 or so times a day, for 10 minutes at a time. I just burst into tears and walked out, because I’m a single mother working full-time.
My daughter has seen numerous professionals: paediatricians, psychologists, a psychiatrist, occupational therapist, kinesiologist, nutritionist and chiropractor.
It took the psychologist asking whether we’d seen a gastroenterologist for me to even realise there are specialists in the area of faecal incontinence and other types of bowel dysfunction.
We’re currently on a public hospital waiting list to see a paediatric gastroenterologist. I have my fingers crossed that they can shed some light on the issue and help my daughter.
Importance of support
In the meantime, I’ve found a lot of support and reassurance among online support groups for parents; there are so many others in my situation and this is happening to lots of kids.
The kids feel ashamed. There’s nothing to be ashamed about with an allergy or other common conditions, yet, having bowel problems seems to be taboo. And that’s really sad for them.
There doesn’t seem to be much awareness about this condition and how many people it affects. I hope that by sharing my story and speaking out, it helps someone else feel that they aren’t alone.
If you are concerned about your child’s bladder and/or bowel health, you can call the National Continence Helpline on 1800 33 00 66 to speak with experienced continence nurses for further info, advice and services in your area.
This story was first published in Bridge Magazine. Subscribe to Bridge online.