Dorthe

Colostomy since 2004

Stoma — it wasn't part of the plan. But that's what happened!

In 2004, I was operated on for colon cancer. The tumour was removed and the colon was sutured. Quite unexpectedly, the stitches burst, and I had to have an acute operation. The result was that I had to have a stoma. It wasn't part of the plan that I should end up with a stoma. But that's what happened!

The operations took a heavy toll on me

Two operations in a few days took a heavy toll on me. The physical exhaustion surprised me. I'm very active by nature and do everything myself. But after the operations, I felt tired and exhausted. I hardly had the strength to eat. For a period, I became very dependent on help from other people. I’d been told that it would take time to recover. However, I had no idea it would be so hard. Normally, I'm not the kind of person who worries much. But feeling so weak after the operations did worry me. I thought: Is something seriously wrong? Will I ever be able to take care of myself again? In short, I didn’t feel like myself for several months after the operations.

I also had to get used to having a stoma

I wish I’d seen a picture and received some information about stomas before the operations. It took some time to get used to the idea. When I had to change the stoma pouch for the first time, I felt really sad. I had no idea what to expect the first time I saw the stoma. I thought that a stoma had something to do with 'stools coming out of the side of the stomach'. My understanding of the word 'stoma' was totally off the mark. It turned out that a stoma was a small part of the colon, which was placed on my stomach. When I saw the stoma the first time, I was so ill and weak that I hardly remember it.

Actually, it was quite easy to learn how to change the stoma pouch

The plan was for me to be hospitalised for 5 days. However, the 5 days turned into 3 weeks, followed by a period of convalescence. It took a whole month before I learned how to change the pouch by myself. I think other people normally learn it faster than I did. It turned out to be quite easy to change the pouch and take care of my stoma. I was lucky that during my hospitalisation and convalescence, the healthcare personnel were fantastic at giving me the care and support I needed. Good care and mental support have helped me through the whole process.

Stoma — a necessary solution — a solution I’m happy with

While I was hospitalised, I had plenty of time to think about my new situation. You can choose to see having a stoma as a huge problem! I could easily have made a long list of complaints about the difficulties involved in having a stoma. But I can also make a list of all the positive things. I had a stoma because I had to, and at the time of the operation, I wouldn't have been able to live without it. I love life, and therefore, I could accept the stoma. If I fought against it, I would have ended up using all my energy on negative things. My attitude is that you have to choose to live with the conditions life brings you. Actually, I had the opportunity to have the stoma replaced after some time. But I chose to keep my stoma. My life is fine with the stoma, and I don't have the energy to go through another operation.

Toilet habits — a private matter! It is a private matter, but I’ve chosen to be open about my stoma

I have been totally open about having a stoma. The first time I was out for dinner, I accidentally 'broke wind'. I had to tell my dinner partner that I was the one who had broken wind at the table. At the same time, I could also tell him that it wouldn't smell. I have a filter on my stoma pouch so it won't smell!

Most people are curious when I tell them I have a stoma. I haven't had any negative reactions. To begin with, it was hard for me to talk about it. After all, it involves excrement. Normally, toilet habits are very personal. So it was pretty taboo-breaking for me for to talk to other people about my toilet habits.

I always empty my pouch into the toilet and then throw it in the bin. I don't like throwing the used pouches in the kitchen bin. When I visit other people, I always ask them where they keep their outdoor bin. It's easier for me to relax when I know where it is. In the beginning, I put my used pouches in my handbag. It was rather unpleasant — in fact, I spent most of my energy wondering if the pouches smelled.

It's important to find the stoma product that best suits your needs

My advice to other people is: Be patient after the operation. It may take a while before you feel like yourself. It can take time to get used to the new routines. It can also take time to find the stoma product that’s right for you. It's very important to find the right product. It may take some time and several attempts, but it's worth the effort. I’ve tried various products, and now I’ve found the product that is best for me and meets my needs. I have a wonderful life — the stoma hasn't reduced my quality of life. I'm so happy that my cancer was discovered in time and that the operation removed it. I’ve always loved life. After having been ill, I’m even more aware of how good my life is. I see my stoma as a necessary solution for me to be able to continue my good life.