Kanji

Colostomy since 2004
Country: Japan
Occupation: Counsellor for disabled people
Leisure time: Astronomy, Japanese Ostomy Association

I have learned how to take care of my stoma by talking to other people

When I was diagnosed with rectal cancer, I was also told that there was an 80% risk that I would wake up after surgery with a stoma. When the doctor told me this, I did not know of anyone who had a stoma. While I knew a little bit about what it was, I did not know any details related to what life would be like with a stoma. Looking back, I did not give the stoma much thought before surgery, as my focus was on the cancer diagnosis. I was very afraid at the time.

My physician located three potential sites for my stoma the day before surgery. There was very little instruction about stoma care at the hospital, which also didn’t have a wound, ostomy, and continence nurse. I have learned how to take care of my stoma by talking to other people who also have one.

My lifestyle isn’t much different than before the surgery

I do not think that my lifestyle is much different than before the surgery. The only real difference is that now it takes just a little more time during the day to deal with the routine maintenance of the stoma. Unlike before, every once in a while, I get worried when I am at work as a counsellor for disabled people, as I am often in close contact with others, so it is very important that I can rely on my pouch and filter. I have, unfortunately, had a few embarrassing experiences with leakage — something that stays in your mind for a long time. Once on my way to a sales course, my pouch leaked while I was in the middle of a crowded train. I had to get off the train at the next station, buy new underwear, and change my pouch and clothes before I could move on. When you have to, you manage.

The pouch has to be comfortable

It means a lot to me that my pouch is comfortable to wear; it has to feel soft to the skin. The skin barrier has to be as thin as possible to give the feeling of actually not wearing a pouch at all. Since the surgery, I developed a hernia, and therefore, using a thin skin barrier allows it to follow the curves of my abdomen. Another important feature is the pouch cover; it must feel soft and comfortable to the skin. When you wear it 24/7, the pouch has to be comfortable!

I never used to get much exercise, but this is unrelated to having a stoma. It is just the way I am.

My hobby is astronomy, and I like to go to places away from the city lights to watch the stars.

Breaking down taboos

I am very much involved in the Japanese Ostomy Association. In particular, I am the blog master for the 20/40 group for young people living with a stoma. My interest in this activity is rooted in my own experience searching for information about ostomy care on the Internet. I did not find much when I first started to look. Also I think that it is very important to get in touch with young people living with a stoma. In our association, we are very focused on the Internet and web communities, such as Facebook and Mixi (the Japanese version of Facebook). I would like us to break down the taboos that are related to the lower part of the abdomen and especially stool. For most people, having a stoma and dealing with what comes out of it is just not something you talk about in an everyday conversation. My mission is to raise the awareness of people who have a stoma without making a big deal out of it. It is very easy to live a normal life while having a stoma.