Leo’s story: Living with Crohn’s disease

The last few years have been quite the rollercoaster experience for our patient Leo, his mum Lucie, and all of their friends and family.

Around four years ago, when Leo was 11 years old, he started experiencing problems with his bowels, getting sharp stabbing pains in his stomach and having to miss days of school because he was too exhausted to get out of bed. Leo was also incredibly thin, and whilst him and his siblings – Ben and Ted – are all tall, slim boys, Leo’s mum had a feeling that something was wrong.

After a few trips to the GP Leo was referred for an endoscopy and colonoscopy which is a procedure where cameras are inserted into your body to see what is happening inside. The results of the cameras revealed that Leo had extreme ulcerations from his throat right down to his anus and this was a clear sign that Leo has a condition called Crohn’s disease.

Crohn’s disease is a lifelong condition where parts of the digestive system become inflamed. It’s one type of condition called inflammatory bowel disease (IBD) and requires careful, regular treatment to help avoid flare ups.

Leo came to Sheffield Children’s for the first time straight from his endoscopy and colonoscopy and he spent the next two weeks having meal replacement drinks to help him gain weight.

Leo said: “After a while those Fortisip drinks were quite unpleasant and I remember the first thing I ate after I’d left hospital was sushi!”

Lucie – Leo’s mum – never left his side during that time.

Lucie said: “The staff were all absolutely incredible during those two weeks and they have been ever since. They talked to Leo to explain what has happening to him and they have been with us when we’ve laughed and when we’ve cried. Nothing is ever too much trouble and they are all so supportive – nurses, consultants, support workers, everyone is brilliant, even the staff who bring the food. As a parent it’s incredibly hard when you don’t know the answers and you feel like you can’t protect your child. We’ve done a lot of research since those first two weeks and whilst mine and Leo’s relationship has been tough at times he’s always kept laughing and joking and we’re a lot closer now because of everything we’ve been through.”

Once those two weeks were over Leo moved to our Medical Day Care ward to start monthly two hour infusions. Now, these infusions take place every six weeks and Leo also has to have self-injected medication at home every week too. Starting this regular treatment was tough for Leo at first as it brought up lots of emotions and thoughts about his health and the future.

He said: “I was worried about the infliximab infusions at first because it made me worry about my fertility, which was already something that was on my mind because puberty had completely paused whilst I was really ill. All my friends we’re getting tall and hairy but I was so skinny and poorly in comparison. Thankfully, as soon as I began the treatment puberty rapidly started again. Almost overnight I put on weight and my voice changed. It is tough having a long-term condition that needs treatment, but that treatment allows me to live a healthy life which is what I have to prioritise.”

Leo’s school experience wasn’t just impacted by Covid-19 like so many young people – he missed more time at school than he’d have liked due to Crohn’s, but all is not lost. Leo is really serious about his health and education and is hoping one day to study business at university so he can set up his own businesses, and maybe even a charity to support people with Crohn’s – something we’re sure he’d be brilliant at.

As you can tell from these photos, Leo is a very cheeky and funny teenager and he is certain that his unashamed approach to talking about poo was a key part of him being able to get the help he needed.

Leo said: “Kids and parents don’t speak much about their poo because it’s feels like a private thing, but if I’d not been so proud about poo and talked about it all the time we might not have known something was really wrong. There were times my poo would be green or there would be blood in it and when I’d announce my poo updates to mum she knew that it wasn’t normal. I’m not afraid to talk about poo with people and if anyone mentions something that’s changed for them, I’m instantly like ‘get that seen to’.”

Leo is incredibly supportive when it comes to talking about Crohn’s and sharing his experiences with others, and feels instant connection with someone when they have the same condition – like his food technology teacher! That said, it’s safe to say that Leo didn’t anticipate needing to extend that support to his mum, which is exactly what did happen this time last year. On Christmas Eve 2022 Lucie was really poorly and ended up in her local emergency department. She was diagnosed with sepsis which was the result of a perforated bowel. Lucie had suffered with irritable bowel syndrome symptoms for many years but had never know that her pain was because she also has Crohn’s disease.

Lucie had to have surgery to remove part of her bowel and this led to her having a stoma fitted. Lucie said: “I think before it was hard to completely understand how Leo felt having Crohn’s, and now I have a whole other understanding of what it’s like. It was a very scary time and whilst I don’t love having the stoma, I do want to stay pain-free and be here for my children. Leo was incredible after my surgery and he sat with me taking notes about the food we needed to start eating. We look after each other.”

Charlotte Hinchliffe is one of the paediatric IBD nurses who also helps look after Leo. She said: “It’s an honour to be able to care for children and young people just like Leo, and the relationship we develop with family members like Lucie is invaluable. There’s a big stigma attached to IBD (mainly because a lot of the disease is centred around poo!) and not many people talk about it, but it’s more common than people think, and certainly not something to be embarrassed to talk about!

“Families like Leo’s, go day to day living with this chronic disease and have to learn how to manage the condition so that they can live a normal life as possible, and that’s what we want for all our patients! Medication is a key part of IBD and without it, our patients would become quite unwell. Leo attends Sheffield Children’s Hospital very frequently for IV infusions, and has never once complained about it (not to us anyway!). He takes it all in his stride.”

After a tough few years, what are Lucie and Leo most looking forward to in the future? The answer is unanimous: a happy and healthy Christmas! On the big day Leo and Lucie and all their family are joining together for a special festive dinner where we’re sure there will be lots of laughs with loved ones.