Voices from the IBD Community

How much did you know about IBD before your diagnosis?

Not that much, unfortunately.

What is something you wish you had known before you were diagnosed with IBD?

That reducing stress and a healthier diet can help a lot.

How old were you when you were diagnosed with UC/CD? What was your first reaction to the diagnosis?

I was 17 years old. I actually took it quite normally because I didn't realise how bad it could get.

Which symptoms did you first experience and which do you still experience? How much of your day-to-day life did they affect then and how much now?

Blood in my stool and fistula forming on my bottom as well as extreme abdominal pain. It affected me a lot back then because I was at a boarding school and couldn't do a lot of things the way I wanted to. Today, the abdominal pain is mostly gone, but the fistulas have spread from my bottom to my stomach, which means I can no longer do many of the things I would like to do.

How has IBD impacted your social life?

Very extreme, because all my ‘friends’ left me as they apparently couldn't cope with the issue and my failures, e.g. I cancelled more often - often at short notice because the stomach ache or the fistulas became noticeable again. But one friend has stayed, and that's a real friend who stays even when something like this happens. You don't need lots of friends, you just need the right ones!

Do you feel that the people around you know enough about IBD? What should they know more about?

That abdominal pain is not just abdominal pain, but in IBD patients it hurts at least ten times more than normal abdominal pain, and that stress has a major impact on the disease. Even though stress is not good for anyone, it is considerably worse for IBD patients.

Do you use any eHealth tools or apps to monitor your nutrition, track symptoms, etc.?

Yes, I use the Apple Health app ‘Tracky’ to track my medication, vitamins, heart rate and more.

What is a common misconception about people with IBD that you encounter? ‘Don't be like that, you've just got a bit of a tummy ache’, I've had that line before.

What are your general experiences with IBD treatments and healthcare professionals? Unfortunately, my intestine was in an even worse state after the colonoscopy. But afterwards, at UKSH Kiel I was very happy with the doctors and the professionalism with which they dealt with the disease. Sometimes I wish that some doctors had more understanding and humanity because that is not enough in some cases.

What kind of support or resources have you found most helpful in managing your IBD? Unfortunately, I have to say that I didn't get any help, information or support. I taught myself everything so far - through the internet, through people who also have IBD and through artificial intelligence, which was able to answer my questions about what was in the doctor's letters and which vitamins are good for IBD patients, for example. As a support, offer or aid, I would like there to be a plan, which is very important for IBD patients; for example, which vitamins or diets can slow down the disease and/or bring it into remission.

What would be your advice for someone who has been recently diagnosed with IBD? I would advise you to change your diet immediately, have a general blood work-up done and think about where you have the most stress and how best to reduce it. Because stress is a very big factor that can quickly cause the disease to flare up again. Also, don't worry too much at the beginning about what can happen, but always make the best of it - and always believe in yourself!

The English version of the German interview was translated by miGut-Health partner Eurice GmbH. For any questions, please feel free to contact us via email.

How much did you know about IBD before your diagnosis?

To be honest, the first time I heard about Crohn’s Disease, it was at my first appointment with my gastroenterologist some days before receiving my official diagnosis.

What is something you wish you had known before you were diagnosed with IBD?

I wish I had known about the main symptoms of IBD because I had all the symptoms for a long time before going to a gastroenterologist. If I knew the symptoms, maybe I would have gone earlier to the gastroenterologist and got the diagnosis earlier.

How old were you when you were diagnosed with UC/CD? What was your first reaction to the diagnosis?

I was in high school and my first reaction was not so bad because I had symptoms for a long period and finally I have gotten some answers and I had a positive thought that I would be better soon after getting the diagnosis and starting my treatment.

Which symptoms did you first experience and which do you still experience? How much of your day-to-day life did they affect then and how much now?

My first symptoms were diarrheas and severe abdominal pain. Now that I am in remission, most of the days I have no symptoms, but with the years I now have some comorbidities, too. Before diagnosis I was unable to leave home at all. Now, some days I have symptoms but I know how to deal with them and I’m trying to do everything I want, just be sure I have all the necessary things checked.

How has IBD impacted your social life?

I have to plan some activities and traveling so I am not able to do anything without first thinking of it and get a plan to do it in a way it does not affect my health. This sometimes makes it more complicated for others. But, fortunately, I have a very good social life.

Do you feel that the people around you know enough about IBD? What should they know more about?

No, there are a lot of misconceptions and stereotypes. Most of the people do not know things about IBD at all, maybe they know the main symptoms but they don’t know or understand the fatigue, the social isolation and other things that come together with IBD.

Do you use any eHealth tools or apps to monitor your nutrition, track symptoms, etc.?

Yes, I use an app to track my medication.

What is a common misconception about people with IBD that you encounter?

Most of the times I look very good but they cannot see if I’m fatigued or if I have symptoms and they think that I’m fine and I can do whatever they think or want.

What are your general experiences with IBD treatments and healthcare professionals?

My general experience is really good. I’m lucky enough to have a great doctor who is always trying to find the best solution to every situation and my medication works so I’m in remission.

What kind of support or resources have you found most helpful in managing your IBD?

I found useful resources coming from patients associations and resources coming from my doctor.

What would be your advice for someone who has been recently diagnosed with IBD?

IBD is only a part of you, it is not YOU!