Hayley's Story

My name's Hayley, I am 15 years old and I just had ileostomy surgery 2 weeks ago. I am now at home recovering and I feel fantastic.

I suffered from UC for 8 years - I was diagnosed when I was just 7 - and from then on my life was hell. I couldn't do normal things without the constant worries of knowing where the toilets were. Everywhere I went I'd ask "will there be toilets there?". I felt abnormal.

When I started secondary school it was just awful. All the kids teased me because I used to always need the toilet. They would call me stupid names like "toilet girl" - kids can be so cruel. I had not been to a single sleepover because of the worry of toilets and that they wouldn't understand.

As I carried on at school things got better. I had a pass that I showed the teachers and everyone more or less understood the situation. I also told one or two close friends but they just understood that I got stomach aches. They didn't know what it was really like, the humiliation of having an accident.

There were times when I thought I just couldn't cope. I would have a relapse and it would all start again. It wasn't just hell for me but for my mum dad and brother too. They have been fantastic through everything but the last two months were terrible. I lost loads of weight - I went down to 4 stone 10, and I am a 15 year old girl. I should have been about 7 or 8 stone. I felt like crap. I couldn't bear to look at myself in the mirror as I would just remind myself of the trapped girl inside. It wasn't me at all and my family could see that as well. I wasn't the fun loving, bubbly, chirpy girl that everyone knew and loved. I was a bag of bones. I was pale and moody, never smiling. I knew what was going to happen.

We went for our monthly check at the Royal Free Hospital in London and the doctors weren't impressed at all with me. My mum and dad sat there and cried as the doctor just went on about all of the drugs I could go on, and I thought to myself: "this is not right, I'm a 15 year old. I shouldn't have to be taking this amount of medication" so I just said I would like to have the operation. They all looked at me in relief as if they had just been waiting for me to say that. Everyone knew that I would need this operation, and it was all go from then on.

On August 7th, 2001, me and mum went to clinic and we arranged to see the surgeon. He explained everything and, amazingly, said he could fit me in next Tuesday. I was amazed it was happening so fast. We spoke to our doctors and they had arranged for me to stay in hospital until the operation took place as we live far away from the hospital and travelling was a nightmare especially with the UC.

In the time before the operation I saw two stoma nurses, an aromatherapist, physiotherapist, and a councellor. The treatment was just brilliant and I always had mum or dad stay with me.

I had the operation at 10 o'clock on the Tuesday morning. It took about 4 hours and the surgeons were very impressed with how it went. One week had gone by and I was up walking around the ward and annoying the nurses. I felt great. My brother, who is 17, came up to visit me with his mates - they're lovely - and they were so good. I showed them what I had done and they're so protective of me now. They're like my extra brothers which is really nice.

I was in hospital for 17 days. I came home on Friday, 24th August, 2001 at about 11 o'clock at night and I've had loads of visitors. My two closest friends came over and I said to them that I would like to show them what I had done as long as it goes no further. I showed them and they were fine about it. I'm glad I showed them as now they can understand fully, and I explained it all no problem at all.

Before I had my op, I wouldn't have wanted anyone to know as it's a very taboo subject isn't it? But now, if people ask, I just feel confident and tell them it's my body, I'm the one who has to cope with this now, and I just have to remember that I am as normal as the next person and I'm capable to do anything an ordinary teenager can do. Now I'm just going to look at life with a whole new perspective as I feel a changed person, and I'm going to go out and do all the things that I hadn't been able to do. I'm going to live my life as a teenager. It was all for the best and I'm glad that I've got my life back and I feel wonderful.

Luv Hayley xxxx

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