Our son was diagnosed with Crohn’s disease at the age of three. He had a few gut issues in his first year of life with some severe food and preservative intolerances that produced endless vomiting, weight loss, and sludgy diarrhoea of various colours depending on the intolerance of the moment. But, he shook those off through a process of restriction/re-introduction and had been doing pretty well—he caught up on his growth and had a busy life as a hilarious toddler.
We moved from the UK to New Zealand in 2014 when he was 18 months. At the time he was diagnosed at age 3 he had been poorly for about 8 months, but with nothing too specific: fatigue, facial rash, and pain when he pooped. We had a great primary care doctor who pushed to get him seen in hospital when he got worse and worse, and warned us of what his diagnosis may be. When he was assessed by our amazing pediatric gastroenterologist, the news of a diagnosis of inflammatory bowel disease was no surprise, but still a huge emotional blow. Initially it wasn’t clear whether he had Crohn’s or ulcerative colitis but within about a year his disease had got worse and he was diagnosed with Crohn’s disease. Our son had a very rocky first few years with his Crohn’s. He was almost constantly in a disease flare, and reacted badly to some crucial drugs that are part of the armoury for children with IBD in New Zealand. This included one of the two biologic drugs currently available, which limits our options going forwards, especially in New Zealand, where access to IBD drugs is very limited compared to other developed countries.
