Zoe

A few months before this I started getting severe stomach pains and diarrhoea frequently as well as having really painful ulcers in my mouth and down my throat. At this point I didn’t know I was that ill; I presumed I had a stomach bug and definitely not something seriously wrong! I continued struggling to school in agony until one day I couldn’t walk anymore with the pain, it was so strange I felt like I had to sit on the floor to eat my meals and constantly felt sick. When my mum took me to the GP the first time I remember the doctor saying it was all down to acid reflux and gave me these massive tablets which I couldn’t even swallow, a few weeks later we went back to see another doctor who referred me to the gastro department at the hospital. After having an urgent endoscopy and colonoscopy the following week and being forced to cancel my family holiday to Spain I was diagnosed with Crohn’s. In a way it was very lucky that we didn’t go on holiday because my inflammatory markers were up at 4000 compared to the 30 they were meant to be at or below!

Since being diagnosed I have tried numerous medications such as Azathioprine, Mesalazine and Sulfasalazine which worked for a while but then my body became used to them, so I started Infliximab infusions every 8 weeks, the infusions have managed to keep my inflammation at bay and I have now been on them for 2 years. I have also been placed on steroids before which unfortunately didn’t work for me. I’ve had numerous MRI, ultrasounds and scopes which aren’t too bad apart from the bowel prep which tastes disgusting!

The main concern for me was that I lost serious amounts of weight due to Crohn’s causing me to be admitted 5 times in one year for up to 10 days at a time. I even had to use the wheelchair to go to the toilet which was literally steps away from my hospital bed. I also had to keep the curtains open because at one point the doctor was adamant I had an eating disorder and was hiding the food, this really annoyed my family and myself because I wanted to eat more than anything but I was too poorly to do so and anything I did eat would come straight out with tonnes of blood as well!

I have had 2 nasogastric feeding tubes, which I hated, to help give me extra calories but as I still wasn’t gaining much weight with this. In March this year I was advised and chose to have a gastrostomy placed, which is basically a tube that goes straight into a hole in your stomach. I have had overnight drips of my feed since February and am finally starting to gain weight again until one day hopefully the tube can be removed. Looking back, I don’t regret having this tube and would definitely recommend it but it is uncommon to be in as much pain as I was after the operation so much that I required intravenous morphine which made me very poorly so I needed even more drips with medicine to stop me having the side effects of the morphine! It was a never-ending circle! I became very pale, lethargic and quiet and I was always nauseous, however the main aim of the doctors was to get me eating enough calories so they put me on numerous diet plans involving very large meals, my least favourite being macaroni cheese; not a great thing to give someone who felt so sick! I remember being very upset that they kept forcing me to eat so much when I was so poorly, it was horrible!

Even doctors and family members who may know you so well will never understand how you feel, for me I felt like all the doctors are focused on is the numbers and levels of the tests they’ve ordered rather than how you are feeling.

For a long time, Crohn’s had taken the bubbly, happy girl I was away from me and I became very unsociable and depressed but then I met another girl called Ellie who also is my age with Crohn’s, we talked on social media for about a year before we finally got the chance to meet each other. Its great having someone to talk to whose going through the same thing as me and even at the same hospital I’m at! The children’s doctors and nurses are very friendly and supportive and both Ellie and me have now transitioned up to the adult section of the hospital which we are hoping will be even more helpful with more treatments.

Having Crohn’s and going through GCSE’s and exams is hard as the stress can aggravate the symptoms but there is plenty of help available from the school and hospital psychologists.

I still have stomach pains and loose stools every day but as the inflammation is at bay I realise maybe this is just a part of Crohn’s that will never go away, I just wish there was a cure! I’m not fazed by what the future may hold for me, if I need surgery I will have it as long as it helps me. However, my main goal is to become a paediatrician and maybe even specialise in gastroenterology, so I can help others like me and Ellie. I can’t thank the consultants, registrars, nurses, dieticians and psychologists enough for what they have done for me!