Natalia

Natalia is a CICRA member who spoke at one of our family days about her story of living with Crohn's disease and the importance of empathetic clinicians.

Hi, my name is Natalia. I am 18 years old. I am partially sighted and suffer from Crohn’s disease.

Eight years ago, at the age of ten, I began to experience a reduced appetite, abdominal pains, bleeding, and severe fatigue. However, by the time I was correctly diagnosed with Crohn’s Disease, a year had passed, but I was successfully treated with steroids, azathioprine and a modulen feed which I took orally for three months. This was a really challenging time for me but I eventually went into remission in 2012.

In 2012 and feeling relatively stable, I developed a passion for indoor rowing through my school rowing club and with the support of my rowing coach, I competed at the British Indoor rowing championships in March 2012 alongside the Polish Paralympic Team. To my absolute delight, I won a gold medal and later that year was also pronounced the winner of another gold medal at the South of England Indoor Rowing Championships. I was so very happy.

However, this was all short-lived and by January 2013, I had a serious relapse. Despite trialling various therapies such as infliximab and newer biologics including vedolizumab, my condition in March 2016 seriously deteriorated. In accordance with my consultant’s advice, I submitted myself for surgery and had an ileostomy which resulted in a stoma.

Crohn’s Disease has had a huge impact on my education and social well-being. However, I maintain my sense of humour and have even given my stoma a name – but I’m not telling you what I’ve named it!

My doctors have shown strong empathy in their dealings with me and have been a huge source of strength and optimism. My parents and siblings have also been so very supportive.

It is also vitally important in the school and college environment for teachers and staff to have an awareness and understanding of chronic conditions such as Crohn’s. Much to my dismay, some teachers at my school still fail to realise or understand the impact of the condition as it affects me. I have had to face, amongst other things, very insensitive remarks such as that I should find the energy to study and that if I cannot cope with my A Levels, how will I cope at University. However, my parents, consultants and I persevere in our attempts to educate the school as to how unpredictable Crohn’s Disease can be and the impact that it can have on my daily life.

I also take this opportunity to pay great tribute to charities like CICRA for the vital work that they do and the research that they fund into IBD.

I remain determined to confront my illnesses and to progress in my life. I cling onto the hope that one day the cause of IBD will be established and a complete cure then found.

Thank you for reading my story. Natalia.