Need further support?
Ivan’s story
Vomiting, thrashing in pain, unable to sleep, and with a swollen stomach – this is how Ivan spent much of his toddler years, and doctors had no idea why. Here, his mum Elissa shares their experiences of severe constipation and how getting in touch with ERIC helped them seek the treatment Ivan needed.
At the time Ivan first began to experience constipation, he was a happy and adventurous little boy. He was thriving despite being born with two rare genetic syndromes and experiencing developmental regression which affected his communication, motor skills, and his ability to eat and drink.
His parents didn’t realise he was constipated, as they weren’t aware of the symptoms and, since he has reduced pain awareness and altered sensory perception, he didn’t appear distressed. He was eating and drinking as usual, and so the early signs of a problem weren’t picked up.
In time, it became clear that he was constipated and the GP prescribed him laxatives, but Ivan’s problems worsened. “Before long, our usually happy, calm little boy was regularly screaming and thrashing in pain, unable to sleep, vomiting and visibly swollen at his stomach,” says Elissa.
Despite this, Ivan’s tummy felt soft upon examination, so no further investigations took place to check if he was impacted.
Raising the alarm
One night, the pitch and desperation of Ivan’s cries was unbearable. “I was so scared. I took him to A&E. We weren’t listened to initially and were sent home with instructions to stop giving him lactulose, as they believed this was causing his pain. It didn’t go away, however, so we came back and refused to leave until it was investigated. It was then that an X-ray showed Ivan was severely impacted and needed an enema.
“We had to wait until the next afternoon for the enema. It felt like a lifetime when Ivan was in so much pain. As we waited on a ward, he screamed and cried so loudly that the nursing staff opened the playroom so I could walk up and down with him away from the other children. His screams were waking everyone”.
The enema worked instantly, and Ivan was discharged with a small amount of laxatives. “The sheer quantities of soft poo that came out on the ward and after, at home, cannot be described – but it was only a temporary solution”.
Since then, the problem hasn’t gone away. Ivan has since been regularly impacted and has spent countless hours in hospital, missing so much time in education and with his family, suffering awful pain and trauma.
"When I found ERIC I felt relief. Finally someone was listening to me and really hearing me. There are experts I can get explanations from when things are confusing and that's just worth so much."
Emergency intervention
Since there was no children’s community continence service in his area at the time, the only place Ivan could go when he needed an enema was A&E. “At its worst, we were in A&E weekly or fortnightly for enemas. Once, he needed 4 enemas in 10 days. I have had to give up work,” says Elissa.
A study showed Ivan’s vomiting was caused by the level of impaction in his colon, pushing under his ribs and leaving little room for anything else. The gastro surgeon said Ivan could have a kilo or more of stool in his colon.
The cause of Ivan’s continence issues is still unknown. A biopsy for Hirschsprung's disease has come back negative, and no further investigations have yet taken place.
Ivan was just 2 when all of this began. “It feels like Ivan has lost his entire toddlerhood: that time of development, of wonder and adventure and learning, spent screaming in pain”.
How ERIC helped
Elissa’s mum spent many hours online researching and trying to find a solution for Ivan. Sadly, she died before the issue had been solved. “The last time he saw his grandmother, he was thrashing and screaming in pain before going for an enema. If I allow myself to truly comprehend this - I can’t - I don’t want to think about it. It’s too awful and too sad,” says Elissa.
Eventually, Elissa came across the ERIC website, where she found advice, resources and stories of other families who were struggling as she was. She also called ERIC's helpline and spoke to an advisor.
“I just felt relief. Relief that we weren’t the only ones struggling like this. I felt that finally someone was listening to me and really hearing me. They understood what I was going through”.
Ivan’s issues are still not resolved, and the family are waiting for answers about the cause – but they do so with a greater knowledge of his constipation, and now know where to go to ask for advice.
“We’ve still got a long way to go with Ivan, but at least I know there’s somewhere I can go where people understand. There are experts on the end of the line that I can check things with and get explanations from when things are confusing, and that’s just worth so much”.
A limited bowel and bladder service has since been commissioned in Ivan’s area, which has just started to see patients with constipation. “It’s surprising how patchy the service is across the country, but we are fortunate that we now have a service nearby – this still isn’t the case for everybody,” says Elissa.
As told to ERIC by Ivan's mum Elissa
Donate to help children like Ivan
ERIC is there to offer support when families have nowhere else to turn. It costs around £40 for a continence expert to provide 30 minutes’ telephone support to parents of children like Ivan.
Your donations mean we can keep offering that service and online support, so parents and children struggling with bladder and bowel issues can receive the reassurance and advice they need.
Please give what you can so we can continue to give parents and children the gift of support, advice and a listening ear this Christmas.
Thank you.
Can't find what you need on our website? For personalised support, submit a webform to our helpline team.
Donate to help children like Ivan
It costs around £40 for a continence expert to provide 30 minutes’ telephone support to parents of children like Ivan. Please give what you can so we can continue to give parents and children the gift of support, advice and a listening ear this Christmas.
Upcoming events
Share this page