Melissa is 31, married with two children and she is an early childhood educator. Her eldest child, Bella, has encopresis, a condition she did not know existed before her child was diagnosed with it. “I didn't even know incontinence was a thing for people who didn't have severe disabilities. Toilet training went really well, as expected. You know, there were accidents here and there and then about a month in, she stopped doing poo in the toilet and it was just accidents, accidents, accidents.”
Melissa and her husband tried all the usual tips and tricks, rewards and sticker charts, but it just kept happening. They went to the family doctor. Melissa reflects that “the doctor said that three-year-olds have accidents and so I thought, okay, this is normal. Then Bella turned four and then we got told that four year olds have accidents.”
Finally, they were referred to a paediatrician, a doctor who specialises in children’s health, and he prescribed a three-month course of laxatives. Bella has been on laxatives ever since. The paediatrician wrote encopresis on the file, but he did not explain to Melissa that this was a medical condition and not a delay in toilet training.
It took four years after Bella’s symptoms began for the family to find effective treatment. She is now seven years old. Those four years of seeking help were difficult and lonely. The family stopped going out as much, which disrupted friendships and added to the pressure. “I thought that she was the only child in all of existence to ever experience it. I didn't know of anyone else.”
It was hard to get the right help. Blood tests did not pick up any underlying disease, so Melissa engaged an Occupational Therapist (OT). The OT started helping Bella with her interoception (the ability to feel what’s happening in her body).
They were prescribed washouts by the paediatrician to do at home. A washout is a treatment to clear a full bowel and help it return to a normal size. While ultrasounds showed Bella’s bowel did get smaller, it was still not within the normal range of measurement and the measurement would go up and down and up again.
In March this year, Bella became very ill because of the condition and was admitted to hospital. She was there for two weeks. The treatment was a medically supervised washout. Since this treatment, her condition has improved, although it has not been resolved.
Melissa had to fight for the hospital admission and to work hard to be heard about her child’s medical condition. The family sought help from a new health care professional, who was concerned that Bella's maintenance dose of laxatives was very high. Because of this, they prescribed a lower dose, but the lower dose led to Bella experiencing further constipation. Bella continues to need a high dose of laxatives to maintain her health.
Following the hospital treatment and with careful management, Bella can now go to her soccer and swimming sessions. Her parents must monitor her water intake because the laxatives she takes require her to increase her water consumption so that she stays hydrated.
Bella was diagnosed with Autism Spectrum Disorder (ASD) and Attention-Deficit/Hyperactivity Disorder (ADHD) a few months ago. Melissa says that these diagnoses may help explain some of the reasons for the encopresis. “At the start of toilet training we didn't know that she had sensory difficulties around the toilet, the smells for example. We didn’t know she had issues around being able to focus on her body or difficulty sitting on the toilet for very long.”
Melissa’s advice to other parents is to be persistent with health care professionals. Get help early and seek a second opinion; especially if you receive advice that suggests incontinence is normal.
Melissa says that you may need to see multiple specialists, and that this may include a continence physiotherapist or a continence occupational therapist, and she advises parents to try to learn from all of them. One person may not have all the answers, and she says that parents should be aware that loose bowel movements can be caused by constipation and faecal impaction (very hard faeces) rather than by diarrhoea. “Don't wait to be referred to a continence specialist. Just call them up and say I'm having concerns about my child's toileting; I think I need to see someone.”
Talking to other parents in the same situation can be life changing. Melissa realised that a boy in her daughter’s class had the same condition. When she spoke with the boy’s mother, she was shocked. “When I was talking to her and she said, ‘he has encopresis, that's this thing that–’ and I said you don't have to tell me, I already know. She was in tears. ‘What do you mean, you know what this is?’ And I said my daughter has encopresis as well.”
Creating positive associations around the toilet is important. “Make the toilet nice, make it smell nice, never yell at children around the toilet. You don’t want them to develop any negative feelings around the toilet.” Says Melissa.
Her advice to families is to be kind to each other and to remember it is not the child’s fault. Melissa explains that it is important to make sure children in this situation know that they are not alone and it is not their fault. Let them know they need medicine because right now their body needs a bit of help.
Information pull-out:
What is encopresis?
Encopresis is also known as soiling or faecal incontinence. This is when a child has bowel accidents without awareness. It is often associated with constipation or faecal impaction and occurs when the lower bowel or rectum (the last part of the bowel) becomes full of faeces and liquid faeces, or stool, leaks out around this. The rectum can become stretched or distended and a child can lose awareness or sensation and not know if it is full or empty.