Voices from the IBD Community

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!