Talking with others helped me feel safer

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Angela, 48 years old

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

I've had , a chronic inflammatory bowel disease, for the past 28 years. This means that my risk of developing bowel cancer increases every year because my 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 think about a serious medical condition and the possibility of bowel 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've been having regular colonoscopies – every year for 15 years now. It wasn’t always easy at first – my first experiences with colonoscopies were very unpleasant.

The first colonoscopy was done over 30 years ago. I was, of course, really scared of the procedure and 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 colonoscopy. 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 procedure.

I'm no longer scared of having a colonoscopy

But colonocopies have changed quite a bit over the past 15 years. Things are very different now. There’s absolutely no reason to be afraid as long as the doctor is experienced and attentive to the patient. I find it important 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's 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've now been with the same doctor for about twelve years. I trust him and am convinced that he does the colonoscopies well. He has a lot of experience with this disease. He's very open and I'm quite sure that he does a good job. I can be honest about what I'm thinking and we can discuss the results. It's important to me to have the opportunity to discuss the results and any further steps hours after the examination, and not right after the colonoscopy has finished, when I'm still feeling the effects of the sedative.

I've already had a lot of conversations about this topic with my doctor. It really helps to know that he's very careful during the examination.

I've had this condition for decades. But I've 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 my symptoms getting worse – like blood in my stool, diarrhea or pain – I react immediately. As a result, I've been able to avoid very severe outbreaks that require hospitalization in recent years. Before that I would make the mistake of waiting too long to see the doctor and then finally starting treatment.

A healthy lifestyle is also important to me. I hope that can help me to prevent the cancer from developing. I go jogging several times a week and try to eat healthy food. I want to feel physically strong and well.

Talking 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, where I was very worried about getting bowel cancer that wouldn't be detected until it was too late. Some nights I would lay awake and think about it, crying. 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 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 stick your head in the sand 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'll 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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Updated on September 14, 2021
Next planned update: 2024

Authors/Publishers:

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

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