In January 2016, I was enjoying family life with a loving husband and four fantastic children. My Mom and Dad were still alive and I had a wonderful circle of friends and colleagues. My career was busy, rewarding, successful and challenging but something was not right and I could not put my finger on it.
In February that year, I was admitted to hospital as I had constant bloody diarrhoea, severe abdominal pain, weight loss, exhaustion, heart palpitations and vomiting. I thought it was an infection I had caught during a work trip abroad. Two weeks later, after a battery of invasive tests and procedures I was diagnosed with ulcerative colitis, a disease I had never heard of.
I was a mess. I was in pain, running to the toilet every few minutes and bleeding. The steroids had caused insomnia, the loss of vital body minerals was affecting my heart and other body organs and my body was not responding to any of the treatments. Every joint in my body was in pain and swollen from fingers to toes. My jaw kept locking when I tried to eat and speak; I found it difficult to walk.
My brain could not work properly and my thoughts were confused and irrational. This terrified me as my livelihood depends on my brain in the same way a singer relies on their voice. My speech was slurred which was embarrassing and upsetting.
I was advised that I should prepare myself for surgery to have my bowel removed and a colostomy bag fitted. It was cold comfort that the procedure might be reversed using my small intestine. Surgery is a treatment and not a cure for this disease but it looked like only surgery could save my life.
I was devastated and could not deal with the thought of a colostomy bag, I still can’t, but it could be something I will have to face in the future.
Now, three years later, due to the expertise, care and patience of Dr. Aoibhlinn O’Toole and a long journey of ups and downs with many treatment routes, my ulcerative colitis is in remission. I am living a healthy, normal and rewarding life. The side effects from the daily medication have become tolerable, I apply a 'mind over matter' mentality in so far as I can and I am thankful for every day that my body behaves itself.
Many of the 20,000 Irish people with ulcerative colitis and Crohn’s disease are not as lucky as me: they cannot work, they find it difficult to have relationships with partners, family and friends and suffer daily disabilities. Many are children and young people who cannot go to school and college, cannot play like healthy children and are deprived of their childhood and teenage years. It is a lonely and embarrassing disease that is difficult and uncomfortable to talk about.
It is said, that if you do good for others it will come back to you ten-fold. Dr. Aoibhlinn O’Toole and Mary Forry from the Gastroenterology Department in Beaumont Hospital have gone well beyond their call of duty in their treatment and care for me. I would like to give something back to support these doctors and specialists who support Irish patients.
These extraordinary health professionals wish to establish a fellowship that will pay for a dedicated doctor to provide exclusive on-going patient care supports. This service is not currently available in Ireland and would radically change the isolation and untreated side effects for people with inflammatory bowel disease.
I am going to fundraise for this fellowship, which will cost €70,000 per annum. I will cycle with my husband Ultan from Paris to Nice - some 700 km - in six days. The full cost of this cycle will be paid by my husband and I. From now until the 14th September 2019, when our cycle begins, we will run a number of fundraising events to raise the fellowship funds.
Our overall objective is to improve patient care and support, and generate an awareness of this debilitating, incurable disease.
Thank you so much for reading my story,