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Daniel

My IBD Journey

Remember; even though you have a chronic disease you can still achieve the normal things that other people can.

Getting diagnosed with IBD

I was diagnosed with IBD seven years ago when I was 21. My symptoms started the year before; I had diarrhoea and some blood in my stools. But I didn’t know what it was and wasn’t thinking much about it. My symptoms got worse and before I got diagnosed I was going to the toilet every hour and was so weak I couldn't get out of bed.

At first, the doctor thought it was an infection. But when I still had it three weeks later, I was admitted into hospital. I had a colonoscopy where they found out it was ulcerative colitis. Although I started treatment, I got more severe stomach aches and cramps. In the end, the doctors started me on a biologic treatment and told me I had 24 hours to get better otherwise I would have to have surgery. Fortunately, the new medication worked in 12-18 hours and they called off the surgery. 

After diagnosis

I think my mum was more scared than me about my diagnosis. In the beginning I wasn't really aware of what was going on and I was really weak, I was falling asleep all the time. Some weeks later, I started to realize that IBD was a chronic disease and I would have flare-ups, but that I wouldn't know how often they would happen or how bad they would be. It was then I realized I would have to take my condition into account for my jobs, relationships, school and holidays. 

I started to create some goals. At the time of my diagnosis I was the head coach for a swimming team and I had also been studying to become a physiotherapist. After diagnosis I had to quit my job and just focus just on my studies. I was lucky as in Denmark, people with IBD get extra support during their studies, so I could really focus on becoming a physiotherapist. 

My other goal was to run a marathon before I was 30.  I started on this goal almost immediately after I was diagnosed, in the hospital I used to climb a few stairs everyday to try and build up my strength and get closer to my goal. 

Living with My IBD

Exercise and diet were the biggest changes I made after I was diagnosed. I started exercising right away when I got home. As I was so weak, I couldn't take care of myself so I lived with my parents for six weeks. Every day I would make a trip around the house, then as I got stronger also the garden. It took me some time to build up my strength and after exercising I had to go back to bed to recover. But I kept trying and after three or four months, I was able to run 4-5 km. I was very focused getting into shape.

I also paid attention to my diet. If something I ate made me feel bad I would take notice. I created a list of food I needed to avoid and what I could eat. 

At the beginning I felt very insecure about the future. I couldn't find anything in the patient associations. The doctors couldn't give me a prognosis, so I was very much on my own. I read a lot on the Internet but it made me more depressed so I quit that. I decided this was a disease that I had to live with, and I tried to figure out how to look after myself. 

Since then I’ve become more confident about the future. What has changed for me is my awareness of my symptoms. In the last seven years, I’ve had 1-2 flare ups per year. But I always contact the specialist on the day I feel the symptoms.

Getting support

The network I created through the patient organizations has been helpful, as I have had a presence in my life that knows what I’m going through. My friends and family can try to understand, but they can’t put themselves in the situation of what I’m going through. One of the best decisions I made was to join the patient organizations – with that I found a network that I can really talk to.

I also found it really important to have a social network so I could talk without thinking about my disease. With my friends, we just talk about what is going on in the world and everyday stuff. 

Taking my medicines 

I usually take my medicines just before dinner. If I’m out, I put a notification on my iPhone to remind me. It does sometimes happen that I forget, and of course sometimes I feel very irritated about taking the medicine everyday. But I’ve learned to prepare myself for such situations. 

I do still have side effects from my medicines. It can be more difficult to cope with the headache as you know it is a side effect of the medication and therefore a reminder of your disease. But the side effects come and go and I just try to live with them. I know it is a side effect, and the main thing is it will pass. 

My defining moments 

Running the marathon was the big milestone for my IBD. I wanted to run a marathon before I was 30 and I achieved this five years before I should have. 

It was an amazing feeling – for a year afterwards I was still high on the experience! 

I started training for the marathon at the hospital – just six steps up and then six steps down and then back to sleep for a couple of hours and so on. When I came to my parent’s house I walked around the house and the garden to build up my strength and after three or four months I was running a good distance. 

But three months after I started to run, I had a flare-up, which put me out of action for 2.5 months. After I recovered, I started to run again, but I was very, very slow. All the old men were running in front of me and it was quite hard at the beginning. But I kept trying. 

Finally, in summer 2009 I ran my first half marathon – in my home city. I had been competitive swimmer since I was a teenager and I think this helped me to focus on one thing at a time. I did the same thing with my running, I tried to keep focused and not let other things affect me. Of course there were some sacrifices I had to take care of my diet and there was no dating. But I felt that two or three years of dedication will benefit me for for the next 10-15 years. 

I kept running and in October of 2010 I ran my first full marathon! 

Running helped me to gain control of my body. With IBD you feel very much out of your own body, that your body is controlling itself. This regain of control was really important and what’s what kept me motivated back then. 

One of the other big moments in my life was having a serious relationship. I was convinced that a chronic disease was an obstacle in having a relationship – there are a lot of taboos around IBD. Being in a relationship with my girlfriend of three years is for me, a great victory. 

Advice for other people with IBD  

The best advice is to listen to your own body and see what is good for, and not good for you. Find solutions that work for yourself – find out what you enjoy rather than what others tell you to do. Live your life the best way possible for yourself: It’s very individual. 

Remember; even though you have a chronic disease you can still achieve the normal things that other people can. 

Disclaimer: NOT A SUBSTITUTE FOR MEDICAL ADVICE These patient stories are for informational purposes only and are not intended as a substitute for medical professional help, advice, diagnosis, or treatment. You should consult with your doctor before making any decisions regarding your health.

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