It all started four and a half years ago. I had lost a lot of weight, lost my appetite, I had diarrhoea, and I also had stomach pains. I was feeling really ill. I went to the GP and got my bloods taken. I was given something to replace the salts in my body and that were being lost, but of course that did not help my symptoms. I went back to the GP and she referred me to a psychiatrist.
I saw the psychiatrist three or four times and he thought I was bullimic or anorexic. When the psychiatrist left a new one came along and they referred me to my local hospital.
At the hospital they tried to fee me up, but I was still losing even more weight. The doctor at the hospital decided that there must be something wrong with my gut, so he sent me to have a barium meal. When the X-ray films came back from the barium meal, the doctor looked at them and then sent us to Great Ormond Street Hospital for them to see the films.
Once at Great Ormond Street, the doctors there could see how ill I was, so I was sent for an emergency endoscopy. The endoscopy showed that I had Crohn’s Disease.
Straight away I was put on an elemental diet for a period of eight weeks. I could not stand the taste of the drink, so they put a nasal-gastric tube in. During the eight-week period I was able to go back to school, my friends were really good about the tube, and they soon got used to it.
Finally, when I was reintroduced back to food, I was still feeling ill, so they started me on steroids. The steroids did not work, so I went on a trial drug, but this not work either. Then they tried another drug called ‘Infliximab’, which worked for a little while but then stopped working. I was also put onto other drugs like Azathioprine and Mesalazine, which I am still taking now. During the time the drugs worked, I was able to take my feeding tube out, and went for a photo shot for my birthday, which I really enjoyed.
We were running out ot drug treatments to try and I hadn’t started puberty yet. There was one more option open to me – an operation. So it all went ahead, I had the operation which went well. They took away all of my large bowel and a bit of my small one too. I am now left with a permanent ileostomy. I also got my tube back in to provide me with extra nutrients. The ileostomy was really strange at firt but now I am used to it.
Six month after the operation I started to experience some pain, so I had to have yet another endoscopy. They found that there wee some small ulcers in my small intestine. I was put back onto ‘Infliximab’ and stayed on that until I passed through puberty.