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A plunge into the deep end
In 1979 I was diagnosed with Crohn’s Disease. The doctors told me about the possibilities of learning to live with this disease without losing the joys of life. In spite of this positive prospects my physical condition took a turn for the worse. Sometimes I caught myself thinking: "What next? I give up. What am I fighting for?" Fortunately, another part of my conscience told me to persevere. For eleven years I had been in a painful, sorrowful and partly a solitary struggle.
Eventually I made an appeal for a stoma and after close consideration with my doctor it got placed in 1990. The next step was to integrate my life, my disease and the stoma. The stoma relieved the pain but also resulted in insecurities that come with getting used to of a new way of life. It felt as if I had to relearn ordinary things like enjoying a meal. And was it possible to sport, to go on holidays? Questions about for example sexuality turned into emotional moments and questions about practical things like the anxiety for odours and changing clothes in public places caused insecurity. There was so much to (re)learn and to explore! I am a very positive person but sometimes the transition was too much to handle at once. I got euphoric and wanted to catch up on the lost eleven years in only one day – impossible of course but after two years I had my feet firmly on the ground again.
In spite of the information given by doctors and nurses many questions remained unanswered and proper practical information was hard to find. I had to learn by experience.
Thanks to the stoma and the support of caring relatives and close friends I managed to adapt to a new phase of life. I promised myself to do an Administrative Assistant course as soon as I felt strong enough. I kept my promise! - I’m working as a technical employee at an intensive care unit in an academic hospital in Amsterdam now.
In the meantime I’ve shared my knowledge and experiences with patients and students in several hospitals. Now I’ve decided to compile a book with my experiences in order to help other stoma patients.
Lou Sohier
