written by Nicky Caton, mother of Zak and Max
Today is a good day, after good weeks, months and good years… but it’s not been like this every day with twin sons aged 20 now, who live with Crohn’s disease, and who were both diagnosed as children.
Our eldest twin lad, Zak, older by two minutes!… was diagnosed aged 7. Our world was rocked, rattled and disrupted. He'd suffered undiagnosed for 18 months with a “tummy bug” that never seemed to go away. The day of Zak’s diagnosis was the beginning of a long journey of recovery for Zak, and a steep learning curve for his parents! But through the years, we held onto Zak’s consultant, Professor Holm Uhlig, who shared these wise words: “Make the most of Zak’s good days.”
We didn’t know then that Crohn’s disease comes in waves called flare-ups, and that Zak would have good and bad days
Zak had a tough few years at the beginning when ‘remission’ (a new word for us in the IBD context) was hard to establish, going up the treatment pyramid without success until infliximab infusions and an iron infusion triggered remission for Zak. Zak bravely told his story in 2018 to CICRA to bring a positive, Zak-styled, laid-back and hopeful message to others like him.
Zak spent 10 years of his life, from aged 8 to 18, going to the John Radcliffe for infliximab infusions every 8 weeks, until he could move to self-injecting when he went to uni in 2023.
Zak remained in deep remission all through his teenage years and celebrated coming off all drug treatments in 2025, and now is living his best life in his 3rd year of studying at university. Zak recognises that Crohn’s won’t ever go away until a cure is discovered, but he keeps check on his gut health with healthy eating, fresh air, bike riding and being gentle to himself to take care of his mental health, especially during times of anxiety or stress.
When Zak was diagnosed in 2012, we also learned from twin studies that his identical twin, Max, had a 50% chance of being diagnosed with IBD within 10 years. That was a shadow in our lives for many years, but Zak’s strength, as well as the most incredible support we had access to, helped reassure us that we’d all cope.
In 2022, Max was diagnosed with Crohn’s disease, aged 17. It took nearly a year to diagnose Max. He did not ‘present’ the same symptoms as Zak. The first symptom was Max’s growth: he was much smaller than Zak, and at times people thought he was Zak’s younger brother. This echoed back to when people said that about Zak when he was 7, as he was much smaller than Max when they were younger children.
Max went through paediatric growth rate checks for months, paediatric endocrinology consultant investigations, and was discharged, being diagnosed with late-onset puberty. It was only after a few more months, when Max was suffering serious bouts of sickness and stomach pains, that we insisted the GP assess Max for IBD.
When Max’s diagnosis came back positive, the dread of this day coming was met by us with sadness but acceptance. At least we knew now why Max was suffering, and that he needed treatment
Max tried the enteral nutrition diet, which the boys have both coined the ‘milkshake diet’ — a very optimistic term for what is psychologically an extremely challenging period of up to 3 months of exclusively drinking only formulated drinks. But like with Zak’s Crohn’s, Max’s Crohn’s only went into deep remission with drug treatment. For Max, success came with a combination of azathioprine and adalimumab.
Luckily for Max, he could go straight onto self-injections and was trained up by a wonderful IBD nurse. He went through all of this during his A-level years, which is a much more common time for teen diagnosis of IBD.
The exhaustion Max experienced as a consequence of these 2 difficult years influenced him to take a year out before going to university, effectively recharging himself for a period of intense new experience leaving home for the first time. Max immersed himself in his music, playing and composing songs on his guitar, and got a local job to ease himself into uni life with some extra funds. Max is now also living away independently at university, in his second year of studies, and is living his best life too!
It really can be an emotional roller coaster being a parent of a child with IBD. But in some ways, IBD in our young sons’ lives has forced us to make choices for the better: we dropped anything that we really weren’t enjoying, we focused on quality time together, we tried to reduce stressors in life, we rewarded our sons with positive praise and recognition of the effort they put in to every day they had to experience blood tests or treatments.
We are so very proud of both of them, Zak and Max, and hope with all our hearts that they each have many more healthy and happy years living their best lives.
We appreciate so much the support from the IBD teams at the John Radcliffe Paediatric Hospital, Royal Berkshire Hospital, and the wonderful supportive charities CICRA & Crohn’s and Colitis UK. We are deeply grateful for a “parents in contact” CICRA phone call we had when Zak was first diagnosed. By talking to another parent, we went from feeling so alone, not knowing anyone who had a child with IBD, to knowing that we were not alone - and with that, we knew we could be strong for what our boys had to face, and we’d get through the bad days and enjoy all the good days, together.