Living with VEO Ulcerative Colitis – William’s story

Our son William was diagnosed with very early onset Ulcerative Colitis shortly after turning three years old. 

Up until the age of two and a half, William was a happy, healthy and energetic little boy. His symptoms were very sudden and caught us off guard. He started with very sudden and quite severe stomach pain, and began passing a lot of blood.  We made our way to the hospital. This was the first admission and investigation into what could be going on. IBD was never mentioned during our 5 day stay in the hospital, and after feeling like I wasn’t being heard, I decided to discharge him and opt to see a private gastroenterologist in the hopes of finding some answers. After what felt like a long journey, which included many hospital admissions, lots of tests, and many biopsies, William was diagnosed with Very Early Onset (VEO) Ulcerative Colitis. 

As hard as it is to hear this kind of diagnosis with such a young child, I was at this point where I now had some hope that we could find a road back to health, and live somewhat of a normal life again. William quickly climbed the ladder of treatment options, much faster than the doctors wanted to see. Exhausting these options so quickly left us with few avenues to head down. Not only were the opinions limited: the side effects were a terrifying thought. This was probably the hardest part of the journey for myself as his mum. He started daily dosages of azathioprine in combination with infusions of Infliximab at the hospital, and that’s topped up with iron infusions every few months. It didn’t take long before we started to see hints of improvement, and our hope that this was working continued to grow. With every infusion he was showing improvement in his quality of life.

We are now 18 months on from his first Infliximab treatment and William is doing so much better. He started school this year. This was a milestone for both myself and my husband, who struggled to see these improvements as possible a couple of years ago. He still struggles with tummy aches, and fatigue is a big thing for him, but on the whole he has had a really great response to the treatment.

William is so lucky to have access to an amazing team of GI specialists, nurses, play therapists and volunteers that help make his hospital visits a positive experience, and not a traumatic one.

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You can learn more about Ulcerative Colitis symptoms here