Preventing bowel cancer: A personal story

I have had a chronic inflammatory bowel disease, ulcerative colitis, for 28 years. My risk of getting bowel cancer is growing every year, as my whole large bowel is affected.

When I first got sick, I just wasn't ready to deal with this topic. I was young when I was diagnosed with ulcerative colitis. The last thing I wanted as I was dealing with the first illness was to deal with the thought of bowel cancer too. I just didn't think about it. I suppressed the thought for years.

I first started to think about it when after a few years the doctor said that I should think about having my whole colon removed. That is when I understood that I could not keep avoiding this issue. Since then I get regular colonoscopies. I have been getting them every for 15 years. At first it wasn't always simple. My first experiences with colonoscopy were very unpleasant.

My first colonoscopy was 30 years ago. Naturally I was really anxious about the test and the results, because my symptoms then were really severe. I was very afraid of having bowel cancer. I lost a lot of blood, had diarrhoea 20-23 times a day and I had lost a lot of weight. I was afraid that I had bowel cancer, and I was afraid of the examination. I can still remember the examination room really well, even though it was so long ago. My memory of that examination is very unpleasant.

In the last 15 years the examinations have changed a lot. The difference is like night and day. Being afraid of them today is really unnecessary, if the doctor has a lot of experience and is good with patients. I am not even aware of the actual examination. It is important to me, to be able to talk to the doctor before the examination. It helps me when I know the person doing the examination and the surroundings. I am not aware of the examination itself and do not have any pain. I don't have any fear of having a colonoscopy.

I was really lucky, because I found a very good doctor in my hometown. I have been treated by him now for about 12 years. I trust him and am convinced that he does the colonoscopies well. He is a doctor with a lot of experience with the disease. He is really open and I am convinced that he does a good job. I can let him know my opinion and we discuss the test results. For me it really important to get the chance to talk about the examination and what to do next a few hours later, not straight away after the examination when I am still affected by the anaesthetic.

I have already talked with my doctor about this a lot. It helps me, if I know that he is being really carefully with the examination.

I have had ulcerative colitis now for decades. But that my medicines might help prevent bowel cancer, and that having regular colonoscopies could help detect a cancer early, has only recently become clear to me.

I take anti-inflammatory drugs to fight the inflammation caused by ulcerative colitis. Maybe this drug will also reduce my risk of bowel cancer.

Now I react immediately at the first signs that my symptoms of ulcerative colitis are getting worse - that is, blood in the stool, diarrhoea, pain and so on. In the last few years this has meant that I have not had an episode so severe that I had to go to hospital. I used to make the mistake of waiting too long before I would go to the doctor and eventually get treatment.

A healthy lifestyle is really important to me. I hope that it might help keep me cancer-free. I run several times a week and I try to eat a healthy diet. The goal for me is to achieve a feeling of physical wellbeing.

I often think about it: "Is that all I can do, or are there other possibilities?" It is not easy. There were often times, along ago when my daughter was relatively small, that I had a lot of feaer about developing colon cancer and having it detected late. There were nights in which I just lay awake and thought about it. I shed a few tears too. I thought about whether I was doing the right thing and how to cope with the fear. It was really hard. But those difficult times are a long way back. I can only say that dealing with this issue and the many visits with my doctor have given me a sense of security. I just needed someone who had the professional knowledge, and with whom I could speak openly. Talking with other people who are also affected, who are in a similar situation, helped me so much.

I also think it is very important not to close your eyes and avoid coming to terms with the topic of bowel cancer. I don't think you can rely on other people to look after you. You have to get over your inhibitions and start to deal with the subject. Then you can have the feeling that you have done everything you can, so that you do not reproach yourself later.

ACKNOWLEDGEMENT

These real-life stories were gathered during interviews with patients who generously shared their experiences with us. We are very grateful to these interview partners. All of them have given their permission for these stories to be published here.

The opinions and comments in these stories are the opinions of individuals. They are not necessarily shared by IQWiG and are not intended to serve as recommendations to help people make decisions.

© IQWiG (Institute for Quality and Efficiency in Health Care)