I’m Katie Leigh and I am 11 years old. I was diagnosed with IBDU in February 2014 when I was only 8 years old. Up until about a year before this, I was a happy, healthy child who had just started to learn to play the fiddle with a local music group, enjoyed netball, athletics and was in Primary 3 and enjoying school.
My family started noticing I was getting really pale and not eating as much as I used to and I was getting tired much more easily and more often, truth was, I was getting lots of sore tummies and was having to run to the toilet every time I ate something, just before diagnosis I was going to the toilet about 20 times per day.
My mum had me back and forth to the GP. They thought at first I was maybe Lactose intolerant so I had to change and monitor my diet, then they thought I may have been celiac, so I had to get bloods done which I hated, then they lost my bloods so I had to get them done again. It was terrible! One night my mum walked in on me to see if I was ok while I was in the toilet, there were lots and lots of blood in the pan and I was scared. My mum took me to the local hospital and was then sent to Wishaw hospital where I met Dr Delahante for the first time. I had to give the nurses a poo sample every time I went to the toilet, and there were lots. Dr Delahante was pretty sure I had an Inflammatory Bowel Disease, something me or my family had never heard of but the only way to know for sure was to get scopes done. I was discharged after a couple of days with plans for me to go to Yorkhill Hospital to get the scopes done. I hated the bowel prep, it was disgusting and it made me sick, luckily I had kept enough down for it to clear my bowel out. I woke up after the anaesthetic really confused, there were monitors and drips and I didn’t know what they were for. Then my life changed forever.
My mum came in to recovery to meet me, I could see she was a bit upset. When we got back to my room the Doctor came to see us and told us that I had lost a lot of blood and was getting a blood transfusion and that part of my bowel was so badly inflamed that he couldn’t get the camera all the way through because my bowel would have ruptured but he confirmed that I did have an Inflammatory Bowel Disease and hearing the words “No Cure” terrified me.
I thought that I was only going in for an overnight stay but I spent the next week and a half in hospital, which felt like forever. I was started on steroids and azathioprine and I was told that I would need to get the scopes done again in a few weeks once the steroids had started to make my bowel a bit better.
I was off school for a few weeks more, I was very tired and my teacher sent me homework home so I could keep up with the children in my class. One day I got a card through my door from my teacher and class mates, it was a get well soon card. Did it really come this far that my class was sending me get well cards home? I remember the day I visited the school to explain my illness to my head teacher and I took a visit to my classroom, all my friends were crying and didn’t really understand what I was going through.
I started off on azathiprine, which only kept me well for a couple of months before having another flare, so I was put onto Methatrexate injections which I had to do every week. I hated this because the side effect made me sick and I felt sick for 2 days, Saturday and Sunday which meant I spent my full weekend in bed, but it kept me well for a year and a half until March this year were I developed Arthritis in my hip which was torture because I was very athletic and couldn’t do all the sports that I loved doing. I couldn’t do PE, netball, cross country, athletics or go to the boxing club.
I have been for many more scopes, the latest being on my birthday this year, regular blood tests, which don’t scare me anymore and many, many more hospital stays. I am now treated with Infliximab infusions every 8 weeks and back taking azathioprine every day, and so far (touch wood!) is keeping me well. My inflammation markers are at the lowest that they have been since I was diagnosed and are hopefully continuing to fall and eventually I am well enough to be in remission.
I have a new found determination to raise funds and awareness for Crohns & Colitis and our first fundraiser in August this year we raised £6300. We hope to smash that next year!