Voices from the IBD Community

How much did you know about IBD before your diagnosis?

I was only 5 years old, so I didn't know anything about IBD.

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

If there was a way I could have avoided getting sick or knowing what caused it.

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

I was 5 and I was frightened and didn't understand much of what was going on.

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, stomach cramps. It took a year to get a diagnosis and treatment. The diagnosis came from abroad because my doctors didn't know what I had. I missed school most of that year and it still affects my day-to-day life because I have had to miss work days from time to time.

How has IBD impacted your social life?

I have missed out on various meetings with friends as well as family. I think I would have done things differently in life if I weren't sick.

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

I think the closest people around me know what it is, but they don't know how it impacts me. They believe that the impact is minimal and because of that, they can be judgemental when I miss out often on things.

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

That it's just a "bathroom" issue, but they don't see there are other symptoms and consequences of having IBD.

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

It's been 50/50. I've encountered some healthcare professionals that lack a sense of empathy towards patients and the healthcare system in my country is awful. I haven't had a colonoscopy in 6 years.

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

Information and resources from abroad.

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

To be patient and advocate. More information about IBD means more people will understand it.

How much did you know about IBD before your diagnosis?

I didn't know anything about ulcerative colitis nor Chron's disease before the diagnosis.

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

I was 24 years old when the first symptoms appeared at the start of the summer. Several weeks later, after my condition progressively worsened (fever, joint pain, couldn't eat almost anything, blood leaks) without being able to understand why, I had to be hospitalized. After all those weeks of malnutrition and pain, my mind was not clear anymore, I felt like an empty shell. Finally, the diagnosis came: ulcerative colitis. Discovering the cause of the worst and longest discomfort I have ever had in my life was at the same time a relief and a sentence. Luckily, I wasn't going to die and would soon be better.

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

No, but I should. I honestly never looked for or heard about apps or tools specifically targeted for IBD patients. As a resolution for this year, I am trying to better understand my body and the disease, so I'm starting to track different aspects of my daily life.

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

Almost no day passes without me being grateful to all the people and organizations that work to increase the quality and length of life of people living with IBD. I feel extremely lucky to have my gastroenterologist who checks me out. Thankfully as an Italian and European citizen, the healthcare is almost free. Last but not least, not every patient is suitable for the biological therapy I'm on (adalimumab), and I wouldn't know what to do without it.

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

Don't underestimate the psychological aspect of your condition, it will be very important as well. I believe it is a neverending battle with both an external enemy (the disease) and yourself (body and mind), so to get better you can understand both your enemy and yourself more. When possible, try to view this as an opportunity to live and aspire for a healthier life, even if there will be moments when you will feel impotent.

How much did you know about IBD before your diagnosis?

Only that it existed, since one of my parents has IBD - but it was not something I was really aware of as a child. Several other relatives have IBD too. Mainly I was aware it was a chronic disease and that chronic diseases exist, since we have many different immunologic chronic diseases on both sides of my family, like allergies, diabetes type 1, IBD, and so on.

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

I was so young that it was not something a child would really think about unless one has to. I knew enough before getting ill. But I would have needed to know way more than I did when I finally got my diagnosis. I was lucky to have an excellent gastroenterologist back then. But when he quit I had to fight for my survival and access to treatment, at the age of 20. I would have needed extremely more knowledge about the systemic disease that IBD is, how health care personnel including physicians may try to gaslight you medically and claim you are mentally ill and deny that you are indeed seriously ill with an inflammatory disease and not in remission. It was a living nightmare to have to beg for help to stay alive and being denied it. And having to try to fight for the care you need.

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

I had had health issues including severe stomach pains, like ileus, already at preschool age. And I started to get really ill at the age of 16, with joint pains, joint inflammation, fever, back pain, hair loss, zinc deficiency, influenza-like symptoms, which all increased, and then increasing stomach pains and in the end diarrhea. It took years to develop severe problems from my intestines, my main problems from Crohn's are systemic and extra-intestinal symptoms. All my blood work etc. were fine, though I was severely ill and at the end dying. I was still denied help from health care professionals until I moved and by that time had turned lethally ill. I got to the Emergency Room, only days from dying, unable to even drink water anymore, while I had been forced to stop eating even earlier. Within days I got the diagnosis, Crohn's disease, at the age of 20. I had suffered horribly for four years without any help. But that was just the beginning.

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?

Joint pains, inflammation in the joints, fever, low grade fever, influenza-like symptoms, hair loss, zinc deficiency, back pain. I didn't get obvious gastrointestinal symptoms until I was dying.

How has IBD impacted your social life?

I have no social life. Firstly, my Crohn's disease has the chance to develop into an aggresive and complicated disease since I was denied help and treatment for so many years before diagnosis. Secondly, even after diagnosis I hade to fight for adequate healthcare and treatment, even getting any treatment at all. I need biologics but the hospital board did not want to pay for it, so they left me without any treatment at all, and they pushed my then gastroenterologist to claim I was in remission though I wasn't in order to be able to deny me treatment. So I was dying again. I had to fight to find a gastroenterologist who would give me treatment, and the only thing efficient enough for me was biologics. But due to the long pause in my treatment I developed immunologic severe side effects to it like myositis plus neurological side effects. That destroyed my life, basically. But since the treatment kept me alive it was still worth it. Later on, the side effects turned so severe I had to stop the treatment and now, many years later, I still struggle to find a treatment I can be on. I get severe side effects from most medications and can not tolerate them, plus most have no or not enough effect on my Crohn's. I have hence gotten so many complications from both Crohn's and the medications I have tried that I am now multiply ill and disabled and living isolated at home, unable to even talk on the phone due to brainfog from long lasting severe illnesses etc. I am prone to infections and can't meet people. I am struggling to get through each day, unable to eat anything but restricted amounts of liquids, etc. I fight hard every day not to get complications that require for me to go to the ER and getting hospitalised. I have had a nightmare finding a gastroenterologist that is willing and capable to take on such a complicated and difficult case as mine. It has been a nightmare where I almost died many times before I found my current gastroenterologist. To know that my life hangs on a thin thread like that is terrifying. I have given up any idea of a social life - I am struggling to get enough fluids for a day and to even be able to sit on the toilet and manage basic hygiene. That is my life now. And there is no hope for anything else, just trying to avoid worsening and premature death, to be honest.

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

People have no idea what IBD really entails, even most gastroenterologists are lacking greatly in understanding, awareness and knowledge. First of all, stop calling and consider it a "bowel" disease, it is a systemic disease! And not everyone can find a working treatment or survive surgery!

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

No, no digital tool is able to monitor complex diseases like my IBD. They're all focused on pretty straight forward and uncomplicated colitis that fills the typical idea of what colitis is. For us other IBD patients with more a complicated illness that doesn't fit that narrow idea of what IBD is, the apps etc. for monitoring IBD are completely useless and not designed to monitor diseases like ours. They are way too basic and simple. Like trying to monitor SLE/Lupus through asking about pain in the thumb. Not useful at all. I have a thermometer, that's the only useful gadget for me, really.

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

That it is a bowel disease - it is not. It is a systemic disease.

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

I do not know where to even start. The main thing is, we need better gastroenterologists! Without a really good one, and access to them, you are lost and your life will be destroyed. Another thing, stop fobbing us off and gaslight us! We are not mentally ill and do not imagine our symptoms, and it is not stress or IBS! And IBD does not always show on blood tests or fecal calprotectin! Stop staring blindly at those and get educated! Listen to our symptoms and stop navel gazing at diarrhea and the number of visits to the toilet per day! IBD is way more complicated than that!

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

Reading scientific research and studies and having an extremely knowledgeable and humble professor in gastroenterology as my gastroenterologist for decades, it saved my life figuratively and literally!

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

Educate yourself, you will need it! And find a really good gastroenterologist - unfortunately, all are actually not good enough! Some are having their own severe mental problems too, like narcissism and psycopathy, so try to find a humble gastroenterologist who respects you and listens to you and doesn't send you to the psychologist or psychiatrist just because your blood tests etc. are "fine" but you still have (severe) symptoms. Don't accept medical gaslighting - which is really abuse - and similar. Unfortunately, it is tragically not only occurring, but also not as rare as people might think. You are most likely going to face unscientific psychologisation, infantilisation, etc. even from physicians and gastroenterologist. If you do, please remember it is not okay and actually wrong and dangerous. You need proper care for your IBD and adverse reactions to your medical treatment, if you get that, don't accept being fobbed off as mentally ill without proper investigation etc. Unfortunately, good care does not come for granted!

How much did you know about IBD before your diagnosis?

Nothing at all. I was not aware of IBD and even after diagnosis could not have confidently described the difference for a long time.

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

I was 19 at diagnosis. I was living away from home for the first time whilst studying at university. Getting a diagnosis was a relief because the symptoms had scared me but it also meant being told this was something I would live with for the rest of my life.

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, diarrhea and frequent, urgent trips to bathroom. This had a massive impact on how I lived my life, from small things like seating near the door in my classes, through to not being able to attend lectures or go out with friends. I suddenly had a huge amount of anxiety about everyday life.

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

I don't any longer, but I did use a very simple tally app that allowed me to keep track of how often I was going to the bathroom. I found this useful because when a doctor would ask how often I was going it was hard to ever give a number with any confidence or certainty, and this allowed me to answer those questions and realise how bad my symptoms still were that I had just gotten used to.

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

Mixed - I have had some great care from doctors who took the time to understand how I felt, my priorities and treat me as involved in the decisions. I've had others who didn't, and who clearly didn't understand IBD. I was told by one that I should consider 'holding it in' when I discussed how urgency of bathroom was impacting my life.

How much did you know about IBD before your diagnosis?

I didn’t know IBD existed before my diagnosis. When my doctor told me my diagnosis, my first question was “What is that?”

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

I was 22 and 11 months when I got diagnosed. Believe it or not, my first reaction was relief, because it took three years to get my diagnosis. In these three years I had several complications and emergency surgeries.

How has IBD impacted your social life?

When I was in a flare it was hard to leave the house due to the urgency of going to the bathroom and when I went out I had to stop and go to the bathroom very frequently. But even so I didn’t want to make a big fuss about it and even now I won’t allow IBD affect my social life. I am not ashamed about my diagnosis and I speak freely about it.

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

The most common misconception that I get is that people think that IBD is the same as IBS and they just think that these diseases are just related to having a lot of bathroom breaks which is completely false. These are serious autoimmune diseases with severe complications, symptoms which may even need many surgeries.

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

Right after I got diagnosed I looked for a therapist, because being told that you have an incurable disease is not so happy news. Honestly, it was the best decision I made during my IBD journey. My therapist taught me how to control my symptoms, how to react emotionally so that I didn’t end up in a flare and many other useful things.

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

My advice for newly diagnosed patients is that they have to trust their instincts, listen to their bodies and keep a very tight connection with their IBD team.

How much did you know about IBD before your diagnosis?

When I was diagnosed, I wasn't even aware that the disease existed. So I was a complete blank slate in this respect.

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

Looking back, I would say that I didn't feel it was a disadvantage not to know anything about the disease. Although, I struggled with my symptoms, I didn't drive myself crazy before the actual diagnosis - which could probably have easily happened if I'd already known a bit about the subject.

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

When I was diagnosed, I was 19 years old - and surprisingly relieved that I finally had a ‘reason’ for my constant diarrhoea. Accordingly, I think today (more than 15 years later) that I probably reacted quite calmly to the news and was rather curious because I wanted to find out more about what was happening in my bowel.

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?

The symptoms that made me go to the doctor at the time were severe diarrhoea (several times a day), severe abdominal cramps and weight loss. I was also permanently exhausted and incredibly tired. Experiencing these health restrictions at the same time as starting work was very difficult because I felt I would never be able to do my new job 100% justice. Although my disease is now in remission (i.e. virtually inactive) thanks to treatment with antibodies, my symptoms are still with me: even though I now have to deal with diarrhoea much less often, I still have abdominal pain every day and get exhausted very quickly in normal everyday life. Heartburn, which I never used to have, has also been a new addition.

How has IBD impacted your social life?

Fortunately, I personally have not had any major restrictions in my social or working life because of my illness, but I know from other sufferers that this unfortunately still happens far too often today.

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

Unfortunately, I have to say that my ‘journey’ to the right medication for me (antibodies) took about two years and caused me a lot of frustration. This was mainly due to the fact that I was given two medications at the beginning of my treatment that worsened my general condition rather than helping me. As a result, I was barely able to take part in normal everyday life (and my studies) for a year because I was so unwell. Fortunately, this changed with the first antibody infusion. As I fortunately tolerate these antibodies very well and my gut responds positively to them, I still receive the infusions today (with interruptions for more than13 years). In general, I remember that in the course of my medical treatment I repeatedly came across doctors who, in my opinion, treated me ‘according to the rules’ rather than trusting my statements (e.g. on the tolerability of individual medications). Even though, looking back, I think that all the medical professionals I have come into contact with over the last 15 years have done a really good job, as a patient who has lived with her chronic illness for years, I would have liked to have been taken (more) seriously in certain situations.

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

1. Realise that you are not alone and that your illness does not define you. It is just a part of you and nothing to be ashamed of.
2. Do what feels good for you. If you are too exhausted to meet up with friends or are worried that a spontaneous trip to the toilet might surprise you during an outing, talk about it openly. The people who care about you will understand you and your needs.
3. Our illness is stressful enough in itself, so look for a doctor who makes you feel comfortable and you don't have to worry about additional stress factors (e.g. due to an overall hectic practice atmosphere).

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!

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.