'My son's constipation wasn't taken seriously until he reached crisis point'

A mother who feared her two-year-old son's untreated constipation could have killed him is calling for access to children's continence services to be made a national priority.

Elissa Novak said Ivan was constantly vomiting, losing weight and in severe pain when it was at its worst, and a doctor said 2kg of his 10kg (22lb) body weight was estimated to be stool.

The number of children aged up to 16 admitted to English hospitals suffering with constipation, among other symptoms, is at a 10-year high, with more than 44,000 admissions in 2023-24, according to NHS figures.

Children are being failed by the absence of dedicated bladder and bowel services in some parts of the country, an expert said.

Elissa, 35, from Nuneaton, said she had constantly gone to hospital paediatricians to try to get help and answers.

At that time in Warwickshire, there was no bowel or bladder community service, which meant they were going to A&E up to four times a week.

It was only when things got to a crisis point that Elissa was told constipation was causing Ivan's pain.

She thinks he would have died had there been any further delay in treating it.

Elissa was told Ivan's entire colon was impacted, which had pushed up into his lung cavity and compromised his lungs.

"His stomach was squashed. All of his organs were being pushed out of the way," Elissa said.

"We were in A&E for up to 12 hours at a time... just waiting for an enema of all things.

"It was a very horrible time. It was so traumatic for everybody."

Ivan has two genetic syndromes which affect his cognitive functions.

Elissa thinks this played a part in the signs being missed and constipation not being diagnosed sooner.

"It was seen as 'that's just what disabled children are like'. We did actually have one consultant who said 'disabled children just scream'," Elissa said.

"It wasn't looked into properly, it wasn't taken seriously until he was really at crisis point. His signs of pain weren't recognised. It was just a perfect storm really."

Ivan now has a care package so his constipation can be managed at home with laxatives and daily bowel wash outs.

"It is a huge part of his life and a huge part of his day. He still suffers pain but it's so much better," his mother said.

Elissa is campaigning for better bladder and bowel care services across the country.

"People are falling through the cracks," she said.

Here are some of the ways to prevent a child from becoming constipated:

Source: Bladder and Bowel UK

Brenda Cheer, a paediatric specialist continence nurse with children's bowel and bladder charity Eric, said children's constipation was on the rise for a number of reasons, including delayed potty training and today's generation of children spending more time in childcare.

She said children were being failed in areas where there was no dedicated children's continence service.

"There's huge disparity of those services," she said.

"Where is the parent supposed to go? How are they supposed to get the help they need? How is a family supposed to access support if there is no children's bladder and bowel nurse?"

Constipation can be treated in the community and should not require a hospital admission, but is not being recognised, Ms Cheer added.

Sometimes it would take Ayda a week to go to the toilet because she associated it with pain, her mum explained.

"It was a vicious circle. It was just complete turmoil... something that everyone just used to say she would grow out of or 'it's a phase' or 'she just needs to learn'," Holly added.

"Our life literally revolved around the toilet for three years."

Holly was not referred for further treatment for Ayda or told about children's continence services that could help.

She said it felt like "the blind leading the blind" with several doctors unable to advise her and she had reached a dead end.

It was only when she was told about the charity Eric that things started to get better.

"There was finally an answer on how to help her," Holly added. "It [the website] described my child."

Ayda is now off laxatives and able to control her bowels.

"I'm very proud of her and how she's coped. She's taken it all in her stride," Holly said.

A Department of Health and Social Care spokesperson said it is committed to ensuring children get the right care and support when they need it for conditions such as constipation.

In a statement, it said: "As part of our 10-year health plan, neighbourhood health services will bring together teams of professionals closer to people's home to provide comprehensive community care.

"We will also strengthen health visiting services so all families have access to high-quality, personalised support."

Jodie Gosling, MP for Nuneaton and who chairs the all-party parliamentary group for bladder and bowel continence care, said constipation had fallen low on the list of priorities facing local council and integrated care boards.

She said children's continence care "has been a silent casualty of chronic underfunding and reactive healthcare".

"This leads to a postcode lottery, where even high-need areas fail to address issues like constipation adequately."