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.
In March 2009, I was diagnosed with rectal cancer, and the doctor informed me that I was going to have a stoma. He told me a little bit about what it would be like to have a stoma, and I was also referred to a wound, ostomy, and continence nurse who taught me even more. My nurse provided me with a variety of educational booklets about stoma care. Before having surgery, I also bought a book about stoma care, as I wanted to be prepared when I woke up after the operation.
I work at a national university as a section chief in a large IT department. Prior to the surgery, I continued to do research by networking within the university. I told a few of my colleagues what I was going through, but I did not want everybody to know. I am married and have two daughters. My wife was worried, not because I was going to have a stoma, but because of the cancer.
Two weeks after receiving the diagnosis, I had the ostomy surgery. Luckily, the tumour was removed at a very early stage, so I did not need any treatment afterwards. The nurses taught me to change the pouch right after the surgery. Because I was so well prepared, it was not a shock for me either to see the stoma or to touch it. Knowing that my stoma would be permanent was also a motivation to become familiar with routine stoma care as soon as possible. I am grateful to have a stoma, as I understand that I would not have been able to continue living without it.
Because my wife and daughters wanted to know what I was going through and gain a better understanding of the mechanics of managing an ostomy, they observed one of the nurses changing my pouch right after the surgery. This was the only time that I let them see my stoma. After having been told that I would not be allowed to be discharged from the hospital until I was able to master the procedure of changing the pouch, I learned to take care of everything on my own. After being discharged from the hospital, I met with my wound, ostomy, and continence nurse once a month for the first few months. Now I visit the stoma outpatient clinic only about once every 3 months and have regular consultations with my physician, which assures me that I am now healthy.
My wife is the cook in our home, and she makes sure that we do not eat anything that may upset my stomach. We have always eaten a lot of fish, and we still do. We visit the fish market several times a week, which I enjoy very much. While I used to play golf, now I mostly just play miniature golf, which I can do together with my wife. We enjoy this time together. I have always loved sports; however, now I tend to watch more often than actively participate.
I can live because of my stoma; it is not a big deal. My advice to other people that are going through the same experience is to try to keep a positive view on life. Live the life you want to, and make sure you get the most out of it.
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