This World IBD Day, we’re honoured to share the story of Albie, a brave young ostomate, through the eyes of his amazing mum and Oakmed ambassador, Kate. From diagnosis to stoma surgery and beyond, Kate opens up about Albie’s journey with IBD, the challenges they’ve faced, and the incredible strength he’s shown along the way.
Can you tell us a little bit about Albie’s IBD journey and how the diagnosis came about?
Albie had experienced stomach issues from birth, he was diagnosed with milk allergies, which later led to various food intolerances. For a long time, we assumed his sickness and frequent toilet trips were linked to those. But then he started losing a significant amount of weight, and we knew something wasn’t right.
We took him to the GP, who ran some blood tests. Within two weeks, we were referred to a specialist hospital – we knew then it was serious. After meeting the consultant and undergoing camera tests, Albie was admitted straight away due to the severity of his Crohn’s colitis. It was a massive shock and threw us into a medical world we weren’t prepared for.
What led to the decision for stoma surgery, and how did you both feel at the time?
Stoma surgery became necessary after Albie had tried everything – NG feeds, Crohn’s medications, ulcerative colitis treatments, even steroids, but nothing worked. Eventually, even the steroids lost their effectiveness.
It wasn’t an easy decision, but we knew it was our last resort. The surgeons explained that his large bowel and colon were beyond saving. That news hit hard, but we trusted that they wouldn’t make that recommendation lightly. Albie was understandably emotional and shed a lot of tears, but he was also ready to move forward and feel well again.
How has Albie adapted to life with a stoma – anything that’s surprised or inspired you?
He’s adapted incredibly well. Albie takes everything in his stride, and we absolutely love that about him. Honestly, I thought he’d find it harder, but in the end, the idea of a stoma was more upsetting than the reality. He’s been amazing!
What kind of support systems have helped your family most?
We’re very lucky to have an incredible network of supportive family and friends. Albie’s stoma nurse and IBD team have been brilliant, and his consultant is a real hero in our eyes. He’s always made sure Albie has a voice in his own treatment, listening to him and involving him in every step. That’s meant the world to us.
What do you wish other parents or families knew about supporting a child with IBD or a stoma?
I want other IBD parents to know that there is hope. When you’re overwhelmed with fear, stress, and uncertainty, it’s hard to see a way through, but things can and will get better. It’s not an easy road, but hang in there. Don’t give up.
What makes you most proud of Albie?
We’re so proud that Albie doesn’t feel the need to hide his stoma. He doesn’t go out of his way to show it off, but he’s not afraid to take his top off at the beach or go swimming. He’s accepted this as part of who he is and that confidence inspires us every day.
What does World IBD Day mean to you?
World IBD Day is so important because it brings awareness. If someone in your life has IBD, they might be going through more than they let on. It becomes their “normal,” but that doesn’t make it okay. Mental health is a huge part of it. So, check in with them, ask how they’re really doing. IBD isn’t just about going to the toilet, it can be life changing.
Albie’s journey is a powerful reminder of the resilience, courage, and honesty it takes to live with IBD, especially as a young person. Through every challenge, he’s met it with strength, and with the love and support of his family, he continues to thrive.
Thank you to Kate for sharing such an open and heartfelt perspective this World IBD Day. Stories like Albie’s help others feel seen, understood, and most importantly, less alone.
