Talking with others helped me feel safer

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Angelika, 48 years old

“I just didn’t think about it. I suppressed any thoughts about it for years.”

I have had , a chronic inflammatory bowel disease, for the past 28 years. This means that my risk of developing colon cancer increases every year because the entire large intestine is affected.

When I first found out I had I wasn’t really ready to deal with it. At that time, when it was diagnosed, I was still young. The last thing I wanted to do was to have to think about a serious medical condition and the possibility of colon cancer. I just didn’t think about it. I suppressed any thoughts about it for years.

I only started to come to terms with the disease many years later when a doctor told me that I should think about having my entire large intestine removed. Then it dawned on me that I can’t keep on ignoring the issue. Since then I have been having regular colonoscopies – as of now it has been 15 years, annually. It wasn’t always easy at first – my first experiences with colonoscopy were very unpleasant.

The first colonoscopy was done over 30 years ago. I was of course really scared of the exam itself and nervous about getting the results, because I definitely had major symptoms. I was terrified of having bowel cancer. I was losing a lot of blood and had diarrhea about 20 to 23 times a day. I was becoming very weak. I was scared of having bowel cancer and scared of having the exam. I can still picture the examination room quite clearly even though it was such a long time ago. I have very unpleasant memories of the exam.

I am no longer scared of having a colonoscopy

The past 15 years have seen these kinds of exams change quite a bit, and it is like day and night. There’s absolutely no reason to be afraid nowadays as long as the doctor is experienced and attentive to the patient. It is important to me to talk with the doctor before the colonoscopy. It helps me to be familiar with the person doing the examination and the room where it takes place. I don’t see what is being done and don’t feel any pain. I’m not afraid at all of having a colonoscopy.

I was very lucky to find a good doctor right in the town where I live. I have now been with the same doctor for about twelve years. I trust him and am convinced that he does the colonoscopies correctly. He has a lot of experience with this disease. He is very open and I am quite sure that he does a good job. I can be honest about what I am thinking and we can discuss the results. It is important to me to have the opportunity to discuss the results and any further steps hours after the examination, and not just right after the colonoscopy has just been finished and I am still feeling the effects of the anesthetic.

I have already had many conversations about this topic with my doctor. It really helps to know that he is very careful during the examination.

I have now had this condition for decades. But I have only just now realized that regular colonoscopies can help detect signs of bowel cancer early enough.

I react immediately when I see the first signs

I take medication to treat the caused by the . These medications may also lower my chances of getting bowel cancer.

Whenever I notice the first signs of escalation, that is when the symptoms – blood in the stool, diarrhea or pain – worsen, I react immediately. This means that in recent years I have been able to avoid very severe outbreaks that require hospitalization. Before that I would make the mistake of waiting too long to see the doctor and then finally starting therapy.

A healthy lifestyle is also important to me. I hope that can help me to keep from developing cancer. I go jogging several times a week and try to eat healthy. My goal is to have a feeling of physical wellbeing.

Talks helped me to feel safer

I think it over quite often: “Am I doing enough or are there other options I should be trying?” It’s not easy. There were also plenty of times a while back when my daughter was still very young that I was very worried about getting bowel cancer that would not be detected until it was too late. Some nights I would lay awake and think about it, and also had to cry. I wondered whether what I was doing was right and how I would deal with my fears, and that was damn difficult. But that was a long time ago. All I can say is that dealing with these issues and talking a lot with my doctor helped to make me feel a bit safer. Under those circumstances I just needed someone with specialist knowledge who I could talk to openly. Talking with other people who have and who are in a similar situation is also a great help.

It’s important not to shut your eyes and to deal with the issue of bowel cancer. I think you shouldn’t just sit back and expect others to do it for you. You have to leave your comfort zone and really grapple with it. Then you will feel like you’ve done everything you can and won’t have regrets later on.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Updated on April 5, 2018
Next planned update: 2021

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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