Abbie’s Story: Living with Crohn's Disease

World IBD Day is on Sunday, May 19. It unites the globe in battling Inflammatory Bowel Diseases, including Crohn’s and Ulcerative Colitis ­and funding from Glasgow Children’s Hospital Charity is helping young patients with IBD at the Royal Hospital for Children.

Young patient Abbie was diagnosed with Crohn's Disease when she was 7. Read her story about living with Crohn's Disease and how she's raising awareness about the condition. 

‘Hi, I'm Abbie. I was diagnosed with Crohn’s Disease in 2021, at the age of 7. It was a horrible time, I was very poorly, I couldn’t go to school as much or do my normal activities.’

‘I had an NG tube for 2 months, then moved onto medicines. I didn't get any better and had to start more treatments. This meant having to go and get infusions every couple of weeks.'

'I remember feeling nervous to have my first needle, but now I’ve had a million and it doesn’t bother me anymore!’

abbie, crohn's warrior

‘I am now on a new treatment pathway after nearly three years of being diagnosed, and I am starting to feel better.'

'The nurses in Wishaw and Glasgow Children’s hospital have been great. They are so nice and understanding and make me smile on every visit.’

abbie, crohn's warrior

‘Having Crohn’s disease makes me feel angry sometimes. I wish it wasn’t me who was diagnosed with it. It has taken so much of the last 3 years of being a child away from me and I’ve missed out on so many fun things!'

'But I have also been lucky to meet so many great doctors and nurses who make me feel special and cared for.’

‘Last year, I gave a presentation on Crohn’s Disease to my class, who up to this point had no idea why I was missing so much school.’

‘I would like other people to know that IBD symptoms change from day to day, and sometimes I am OK and have energy and the next day I don’t.’

‘Sometimes I am happy and loud, the next day I might be quiet. I don’t want people to think I am different or not normal because I have this disease.'

abbie, crohn's warrior

'I want people to know that even though you can’t see my Crohn’s disease, it is there, and I might not be able to participate fully even though I want too.’

‘I might look OK on the outside, but feel very uncomfortable on the inside.’

‘When I grow up, I want to be a children’s nurse so I can help other children who are diagnosed with this disease. I want to tell them they will be ok, and with the right treatment, they can have a happy life'.

Support for children with Crohn’s

We are proud to have contributed funding into pioneering research and development of less restrictive diets for children like Abbie living with Crohn’s disease.

Crohn’s disease is a chronic and debilitating condition. Young patients with Crohn’s are currently treated through liquid only diets using feeding tubes - a difficult treatment to manage which can have significant implications for a child’s mental wellbeing.

The feeding tubes can sometimes lead to children feeling socially isolated, with parents telling us that their children often miss out on activities with their peers as a result of their treatment.

Thanks to our supporters, we have funded groundbreaking research to develop a solid food diet treatment which matches the effects of the liquid diet, giving patients more flexibility and confidence when managing their condition.

“By moving away from the liquid-only diet, young patients can avoid the side effects which come with being treated with medication, and can enjoy their childhood without the restrictions which come with feeding tubes. The results proved to be overwhelmingly positive, with symptoms improving or disappearing after 8 weeks on the new ‘CD-Treat’ diet.” 

Professor Richard Russell, Consultant Paediatric Gastroenterologist 

We would like to thank the Catherine McEwan Foundation and our Young Ambassador Jenny Cook for helping to make this research possible, and for their support in shaping the care given to children and young people with Crohn’s and Colitis.