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.


Colostomy since 1980
Country: Japan
Occupation: Nurse (now retired)
Leisure time: Physical activity

The doctors told me that I only had about 1 year left

When I was 30 years old, I was diagnosed with rectal cancer, and the doctors told me that I only had about 1 year left to live. I had three small children aged 8, 5, and 1-1/2, and I had no intention of dying.

During surgery the doctor removed a part of my large intestine and created a colostomy. I was informed by the doctor that there was a possibility that I could irrigate — a procedure where you rinse the intestine with water, and afterwards, no stool comes out for about a day or two. Having three children, I did not want to spend a lot of time thinking about my stoma, so taking my situation into consideration, I was determined that irrigation was the right way for me to take care of my stoma and output. It worked out fine, and I got up at 5:00 every morning to irrigate; this way I could occupy the bathroom without bothering anyone.

I had a very helpful and committed husband, and he was really there for me. After the surgery, I needed treatment with new medicine that was very expensive, and we had to pay for most of it ourselves; luckily my husband had a good job and could afford it.

I have never given my stoma much thought while working

When the children grew up, I started to work again, and with my education as a nurse, it was not a problem finding a job. Being a nurse is a busy job, and you are in close contact with other people all the time, but it has never been a problem for me, and I have never given my stoma much thought while working.

I need to take good care of my skin

Due to my age, I have just retired, and I enjoy life as much as before. I do not irrigate anymore, but the pouches today are much better than they were 30 years ago. I have diabetes, too, and I need to take good care of my skin, so it is important for me to wear a very skin-friendly barrier.

Having an efficient filter is important

Sometimes I experience either too much air or a vacuum in my pouch, so having an efficient filter is important. When there is a lot of air in the pouch, it is not discreet no matter how small it is. It is very important to me that the pouch be as discreet as possible. A lot of pouches have what I call an 'overhanging' at the top. The pouch falls down as soon as there is something in it, including air, and it makes the pouch very visible. I prefer a pouch without this.

I am very active

Also I am very active, and therefore, I need to wear a comfortable pouch. I walk 40 minutes every morning to the shrine (Japanese temple) to say good morning. I have always travelled a lot and visited a lot of different places in Japan, and one of my best experiences was to hike to the top of Mount Fuji. It was tough — but fantastic — and I am so glad that I did it.