Helene

Ileostomy since 1998

Ever since I was a little girl, I'd had stomach problems. No one suspected I might have some sort of illness. I was just a kid with a 'sensitive' stomach! By the time I was 12, things had gone beyond a simple 'sensitive' stomach. I always had diarrhoea, and I was in a lot of pain. The situation was becoming desperate, and I felt really, really sick. My parents could feel that I was reaching my limit and something was seriously wrong. So I went into hospital and my condition was critical — and the doctors decided to give me an emergency operation even before they had made a proper diagnosis. Things just couldn't carry on like that without an operation. So I had an ostomy, and it turned out I had Crohn's disease.

Stoma — the only remaining solution

I had an emergency operation, which meant I had only a few hours to get used to the fact that I was going to have a stoma. At that time, I was in so much pain, I just felt like anything that made me feel better was worth doing. Having a stoma was not a crisis for me — or for my family either. When you’re as sick as I was before I got a stoma, you see life in a totally different perspective. The stoma was my salvation.

Information can be really valuable

The staff at the clinic did everything they could to reassure me. They provided us — me and my family — with all the information we needed in a very calm and concrete manner. I can see that now when I look back. Some hours before the operation, I met a stoma nurse who calmly told me what a stoma was and what it looked like. That kind of information, simple and practical, was really valuable for me — and for my parents as well, no doubt.

Changing the pouch all by myself...I was terribly nervous…

I was very nervous the first time I had to change the stoma pouch myself. But the stoma nurse was right next to me. That helped a lot. I felt looked after — he was right there next to me! While I was in hospital, they gave me a leaflet, which had step-by-step instructions on how to change my stoma pouch. Today — 10 years later — I still change my pouch in the exact same way as described in the leaflet, the way my stoma nurse taught me to do it.

Will anyone kiss a girl with a stoma, I wondered?

'Will anybody ever go out with someone like me?' When I first got my stoma, I couldn’t help asking myself that kind of question. I was 12 years old — the age when you start to discover boys. I saw some of my friends were kissing boys, and I wanted to do the same. There’s no reason why a stoma should be an obstacle. Believe me — I managed to find someone to kiss me then, and I’ve had no problems with boys ever since! Neither as a teenager nor as an adult have I ever felt that my stoma has been an issue where boyfriends are concerned. But I think that’s because I myself am pretty relaxed about my stoma.

Sometimes I have to remember that other people don't have a stoma

I can hardly remember what life was like without a stoma — I’ve had it for half of my life now. Sometimes I have to remember that other people don't have a stoma!!! I think that you are accountable yourself for having a good life with a stoma. You get a stoma for a reason; after all, you don’t just do it for the fun of it. I have a stoma, and I can live my life however I choose. I’m 22, living life at full speed. I’ve got a magnificent boyfriend, and soon I'll be a qualified nurse! My advice to other people is: Go with it. Accept your stoma. If things are hard sometimes, imagine what your life would’ve been like if you hadn't had a stoma!