Having a stoma, temporarily or permanently, is a big change in a person’s life. For some people, it might take a lot of time and adjustment to accept life with a stoma. Others, however, adjust more quickly. How you deal with it depends on you and your situation — there is no right way or wrong way to living life with a stoma. We have gathered the stories of other people living with a stoma who share their experiences.
I was diagnosed with ulcerative colitis in 2002. I was on medication all the time, and still I wasn’t in good health. The doctors mentioned surgery and stoma several times, but I did everything to avoid it.
One of the reasons that I did not want a stoma was that I have had eczema for many years, and I was worried that it would be a problem and get worse in the area where the pouch would be attached. Fortunately, up to this point I have not had any problems.
I use a one-piece system because I want an appliance that is as discreet as possible.
When I was 18 weeks pregnant, I was so ill that there was no other solution than to have my colon removed and to have a stoma. At the time, all I could think about was the baby inside me, and I was more concerned with her health than with my having a stoma.
When I woke up from the anaesthetic, the obstetrician was by my side like an angel, and all I wanted was to hear that my baby was doing fine. She removed the cover and I saw the stoma, the pouch, and the big wound dressing. Seeing it was fine, I was expecting it would be there, but it was much more important for me to know that my baby was all right, and she was.
While I was in hospital, my focus was on the baby. I took care of the stoma, and it was not a problem. It was not until I came home and saw myself in a mirror that I realised the change my body had been through — the stoma and the scar. It took me a couple of weeks to accept, but I was feeling much better and wasn’t ill for the first time since I was diagnosed, which helped me a lot.
Suddenly I experienced a freedom I had not had for a very long time. Before the operation, my radius of movement was very short because I had to find toilets all the time. Now I can go out of the house without knowing where to find a toilet. The doctors have told me about the possibility of having an ileo pouch operation, but I have no intention of having one. My husband keeps telling me to keep the stoma, because it gives us much more freedom. Now when we are going somewhere, I am the one waiting for him.
I have just gone back to my old job where I work as a consultant in public employment services. I am in close contact with many people every day, and I often visit people in their homes. Of course it is important to me that I can rely on my pouch and that no one can see or smell anything.
I had a problem only once, driving a car after an appointment. My seatbelt was pressing on the stoma, and I experienced a leakage. After this I have learned to settle the seatbelt higher up.
After giving birth to a little baby girl in November, my health is better than it has been for many years. I really enjoy life and our daughter. Having a baby sometimes means that you have to ignore your own needs, and I just don’t have time to fiddle around with my pouch between nappy changes and feeding my baby. I am not always able to spend a lot of time on myself and often a visit to the restroom has to be done very quickly. At these moments, it means a lot that the pouching system is very easy to use.
I got my stoma while I was pregnant, which means that I have not tried to wear my normal clothes since getting the stoma. Now 6 months after the birth, I still find it difficult to hide my pouch beneath the waistband, so I still buy pregnancy trousers. I try buying other clothes that I like to find a new style.
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