Hi my name is Abbi and I am 16 years old and I am from Liverpool. I was diagnosed with Crohn’s Disease back in 2008, when I was 9 years old. However I went two years before being diagnosed and I had severe eczema around my mouth and I was only 3st. I never could eat food and my parents used to think I was just a fussy eater. I also used to vomit quite frequently as much as six days a week if not more so anything I did eat I just couldn’t keep down. But as my weight declined and I have a sister two years younger than me and my mum started to notice that my sister was taking over me in weight, height and in general being. Doctors were confused about why I had these symptoms so I was put on general health supplements to maintain my weight and nutrients levels. And in the end of 2008 I was referred to Alder Hey Children’s Hospital where I was taken care of the gastro team led by Dr Auth. He took one look at my thumbs and practically diagnosed me there and then. Obviously I needed a direct confirmation so I had an endoscopy which proved I had Crohn’s Disease and when I woke up from the anaesthesia I had a nasogastric tube which fed me directly for the next eight weeks for bowel rest.
Although some people think it must be impossible to live without eating food, I actually loved it. Over the years of not being able to eat and my parents were desperate to try and get me to eat as I was severely malnourished, I used to have to sit in the kitchen with a plate full of food that haunted me because I knew I just couldn’t eat it and my parents didn’t know this. I also used to sneak my lunch box to the kitchen when no one was looking to hide the fact that I never ate in school. So I really enjoyed not having to eat during those eight weeks. I was then put on Azathioprine. About six months later in June of 2009 my symptoms were coming back and it was clear that the Azathioprine was not enough to keep my Crohn’s from flaring up. So I was put on the nasogastric tube again.
In 2010 my symptoms were not improving and I was vomiting again and I was losing weight. So I was put on a new experimental intravenous drug called Infliximab. I was then on this treatment until 2015. I used to have to go to Alder Hey every eight weeks for my infusions and it was incredible while I was there I felt like I could eat anything and run miles without getting tired as I used to feel quite lethargic and never used to eat when I was coming close to needing another infusion.
At the end of 2014 I had a weird pain in my foot and told my parents about it and they said see how it goes. And the pain went but after the New Year the pain started again so we went to the orthopaedic section of Alder Hey and they diagnosed it as a hairline fracture. However after a few weeks they took another X-Ray of my foot and compared it to the one I had four weeks earlier. It was visible that where my fifth metatarsal bone should have been it was black and in an X-Ray as you know bones show up white but there was nothing there. I had to have a biopsy performed my foot. And to this day no one knows what bacteria it was that took away my bone. But what they did know is that it was an infection and as infliximab is an immune depressant drug I had to be taken off it.
A few weeks later my symptoms came back and this time it was worse than ever. I had to be taken into A&E several times for pain relief because I couldn’t handle the pain any longer. For an example of how much pain I was in I was in so much pain once I had to be taken in an ambulance and the paramedic gave me enough morphine in his words ‘was enough to take down a grown man’ and it didn’t make the slightest difference it was excruciating. This vicious cycle carried on for a year of me in and out of A&E. Until March of this year I was able to have surgery after Dr Auth found two narrowing’s of my small bowel. In the surgery Dr Baillie and Dr Emmy my surgeons removed 3ft of disease and dead bowel but luckily I didn’t need a colostomy bag. The surgery gave me a whole new lease on life. And I am eternally grateful for what Dr Bailey and his team done for me.
Last year during the aftermath of my foot surgery and the A&E visits I was in a very dark place and I was no longer happy with my life and I couldn’t see a way out of what I was going through. It always just seemed to be one thing after another. I won’t go into detail in what I felt but it wasn’t the best time in my life. The only advice I can give you today is to have a support system in place with people who love you, and I will be honest here they are not going to understand what you are going through and it is not their fault and that was something that took me a while to understand last year. Something that helped me last year and still today I listen to the music of the singer Sia, I found that I related to her lyrics and it really helped me to be distracted from my pain and sink into a world of lyrics where everything I was hearing inspired me to keep going. Pick something that you truly love you don’t have to tell anyone this and I didn’t until about two weeks ago, if it something you love it will surely be something that inspires you to carry on. Unfortunately there will be times when you will feel alone and that no one understands you, and you will wish that you had never been given this and that this is your life and felt the exact same. But what I realised was that I wouldn’t change me having this illness because I believe that I am the person I am because of it and I feel that I have come out stronger the other side. Don’t forget to be proud of yourself and who you are.