Sarah was told by a doctor, “I’ll eat my shoe if your three-year-old son has IBD”

Recently, we sat down to talk with Sarah *, the mum of now four-year-old Chris *, who was diagnosed with IBD last year – when he was just three years old. Being diagnosed with IBD at such a young age is very rare. So rare, in fact, that before he was diagnosed, Sarah and her husband Charlie were told by one doctor that he would “eat his shoe” if Chris had IBD.

Not only is Sarah the mum of a toddler with IBD, but she’s also a nurse practicing within the paediatric healthcare system, so she has unique insight into what it means for young people to be diagnosed with and to live with IBD.

The diagnosis

Chris had what his parents knew were abnormal bowel movements for his whole life. Even the staff at Chris’ childcare facility flagged with Sarah that it was unusual how often he went to the toilet during the day.

Despite this, Chris didn’t show many other signs of having a chronic illness. Sarah says, “To this day, he’s never really looked like a sick kid. He’s always been a happy kid and had lots of energy, so in some ways it was difficult to imagine that there could be anything wrong with him. But, still, I just knew something wasn’t right.”

After initially living in Melbourne, the family moved to Swan Hill in rural Victoria. They had previously been told by doctors that Chris was just experiencing normal “toddler diarrhea”. It was shortly after the move when they noticed blood in Chris’ stool and Sarah and her husband both knew that something was wrong.

Even at this stage, doctors were sceptical that Chris could have IBD but his parents insisted on doing further tests and even paid to have a Calprotectin test done. When the results came back, Sarah recognised indicators of a potential chronic illness. From there, further tests were performed and Chris eventually received his diagnosis.

Sarah says, “In one way, we’re lucky because he’s really taken it in his stride. So many kids struggle with understanding why they have to take medicine every day or stick to certain routines, which of course is a very natural response for kids to have. It’s just never really seemed to bother Chris much. In another way though, that is a bit sad because I think it’s just all he’s ever really known. He doesn’t know any different, so he doesn’t complain.”

The treatment

When we spoke with Sarah, she informed us that they had just made the decision to escalate Chris’ treatment because he wasn’t having the response to the treatment that they had hoped.

“When we first received the diagnosis, there was an element of relief after knowing deep down for so long that something wasn’t right but not knowing what it was. Now, it feels like we’re facing a lot more uncertainty.”

Chris was started on the least invasive medication. However, he didn’t respond to it the way that doctors hoped. After continuing to have acute flare ups, he has had a couple rounds of steroids which is a good short-term solution but should be avoided where possible as a long-term treatment. It was suggested to Sarah and Charlie that Chris progress onto immunosuppressants- a step they decided to take in the last few days.

“Even being a paediatric nurse, the decision was so hard to make. It’s totally different when it’s your own kid. You have so much to weigh up and it feels like there’s a lot of uncertainty,” said Sarah.

Life with IBD

Chris’ parents are grateful that, so far, his IBD hasn’t been much of an interruption to his school or to him participating in all the normal activities that a four-year-old should get to enjoy. His diagnosis and treatment have meant that they often need to travel back and forth to Melbourne, something that they just accept now as part of their lives. They’re unsure of how IBD will continue to impact on Chris or how it will progress, but for now they’re taking it one step at a time.

Sarah says that if she could give parents in a similar position one piece of advice it would be, “Always trust your instincts. We have a great healthcare system and the doctors have done a great job but also, you know your kid better than anyone else in the world.

“Keep advocating for your kids and keep pushing for answers because there are crucial factors in these things that may not be easily visible to a doctor in an examination room or in a set of test results. I understand that not everyone will have the knowledge that I do when it comes to recognising signs in test results and things like that but as a parent, you have an intuition about your kids and their health that no one else does.”

To learn more about Crohn’s disease or to support the work of Crohn’s and Colitis Australia, which provides a wide range of programs and advice to those living with IBD, visit. https://crohnsandcolitis.org.au.

*names have been changed