How it all started ......

It was a long, long time ago, to be exact September 2008. I have always been a healthy child, never sick, but unfortunately my body has a love for exotic diseases. The rarer the better.

Before that, I had ITP and was in the hospital for a long time. Pronounced a tongue twister: ideopathic thrombocytopenia. Sounds impressive,huh? : too few platelets (blood platelets), which at the slightest touch caused me to bruise immediately. Yes, exactly, I was the kid standing on the sidelines in the playground while everyone was playing because the danger was too big for me. The blood disorders were also in the leukemia ward, which is why I was confronted with death and the hospital early on. The desire to help other people became apparent, which led me to my calling today.

How got the diagnosis

It started with traces of blood on the toilet paper and 4-5x daily diarrhea, loss of appetite, fatigue ... the whole range. At first I was suspected of an amoeba infection and given antibiotics in the hospital. To date, the amoeba culture has never been proven to me, wich doesn´t suprise me at all because this is captured primarily in the Asian region and my German butt was at most on the Italian beach until then. I was released, but after a few weeks I came back after a circulatory collapse, thinner, weaker, sicker than ever ... after weeks the diagnosis was clear: ulcerative colitis. However, I was too young to realise what of an huge impact this diagnose would have on my future life. Unfortunately there was not much experience in my hometown at that time, which is why I was given high-dose cortisone for 1 year. Biggest mistake of my life ... ok one of them. If someone wants to give you high doses of cortisone over a longer period of time, pack your things and run, run for your life. End of the story: 20 kg increased in one year, bull neck, a broken sleeping schedule, body aches ... you name it. And at the age of 10 I was a walking encyclopedia and quickly realized that many doctors had no idea about IBD.

How did the diagnosis affect my everyday life?

Why people suffer from BID  has not been proven. There are only speculations why the Immunsystem overreacts: Genes, stress ... there was no case in my family, but I have always been a perfectionist and I wanted to go to German  high school at all costs. Voilà, I got the diagnosis during the summer vacation. But that's just my theory. End of the story, due to bullying and lack of understanding of my weight gain, I decided to go to a girls' school. Thanks to the half-year stay in hospital, I missed the first half of the 5th grade. The school principal adviced switching to secondary school, because catching up is impossible, but they didn't want me due to my  high grades. Impossible ? Not for me. Therefore one hard year long I have  been learning after school until I  fell asleep over my books at 1 a.m. everyday, the alarm clock then woke me up by 4 a.m so I could continue studying before school. Friends, fun, leisure - foreign words, but giving up was not an option. At this point I have to say how grateful I am for my mother, who went with me through this hard time. I also got the dog I had been looking forward to for years, which quickly became my best and only friend at that time.

My therapy 

How many times I was in the hospital? I have stopped counting, but one thing I know for sure - it was  too often. After a year the doctor admitted that he was at hit wit´s end which is why my mother made the best decision of my life : I introduced myself to the Hauners Children's Clinic in Munich and was put on Salofalk and Azathioprine. Every three months I went there with my parents for a check-up, I was inpatient there during episodes (always in the summer holidays - you get it , huh? ;)) and I got cortisone, which was always quickly receded. The years went by and man, I lived my life. Well, as best I could. I went to dance championships, did a lot of sport and passed my Abitur  ( highest education score in Germany) . Sounds like a fairy tale, of course there were ups and downs. Times when I wanted to die at the age of 12, hours when I was sitting in the hospital on the toilet and counting the tiles (PS. it was always the same number). At some point I was known as Speedy on the floor. Why? I had exactly the room that had no toilet and therefore had to go to one on the floor. you feel me?. If you have to go to the toilet, then suddenly and immediately, so the nurses knew me running down the corridor with the IV pole holding horizontal in on hand  (otherwise it gets stuck at the door) . Forget every Guinness book record holder in sprinting - I would have surpassed them all.

The beginning of the end

At 18, I switched to a different doctor because I was no longer a child. I changed again after a year because I was not content. I was 21 and had my annual colonoscopy screening. Well, one thing is sure: I won't die of colon cancer  this lifetime. Two days later I phoned the doctor about bloody stool 30 times a day, his secretary said that he had no time and if I thought it was a flare, I should take cortisone according to the agreed schedule or go to the emergency room if necessary. What is an emergency? Bloody bowel movements were nothing new as a IBD patient and I was also able to endure severe stomach pain after all these years, which is why I opted for variant 1. Three days later I drove to the emergency room at night, well, my brother drove, I was more like a worm winding on the backseat. I was immediately admitted to the hospital and after a few days of diagnostics, I discovered a covered perforation: in short, when doing a colonoscopy (colonoscopy), the doctor tore open 8 cm of my colon, causing stool to flow into my stomach, which means that it was covered because others were Organs have laid over this place. My blood values / inflammation values a catastrophe and I full of pain reliever hardly responsive. The professor wanted to wait the weekend and save me a long suffering because it could heal by itself. However, in the end he opted for  the operating because he didn't know if I would still be able to be operated the next day and if he could do something for me. From this moment on, hell started on earth. Well, actually I have already been in hell: August 2019 - I got a ileostoma and the colon was removed. This cured the colitis, but 2 days after the operation I had an air embolism: Why it happened is still unknown, but the central venous catheter has drawn air into my circulatory system. What happens to a pump when it draws air. Exactly, it can no longer pump effectively. My lungs collapsed and the next thing I remember is that I was lying on the floor and a young doctor was resuscitating me. But it felt like someone kicking me with his feet, after a few seconds  I fainted again.

Blessing in disguise

08/05/2019 - there was a very experienced doctor present who suggested lying me down  on my stomach and immediately my lungs stabilized, but I was a day in  artificial. Coma. 24 hours, 1440 minutes, 86400 seconds of pure horror for my family. I have lost 50 kg to 37 kg over the last weeks, my muscles could not support me, my breathing endurance was worse than that of an 80 year old ..... I had to start from the very bottom: walking, breathing, speaking without without wrestling for air after every word. During this time I learned how important friends and family are. And one thing I can say for sure: There are not many friends, but they would travel around the world at 3 am when I needed them. Quality over quantity!

Live with Freddy

You may think: who the hell is Freddy? Right?. One day at the hospital my mother looked at me and said my stoma will be called Freddy from now on. We still don't know why, but here it is - my temporary companion. I already had another operation in May 2020  to prepare for the relocation of the stoma. The deadline is June 30, 2020, when I can make peace with myself and Freddy. And believe me I will hear  Survivor from Destinys Child while wearing my big belly scar like a trophy from my fight against ulcerative colitis. Many people ask me where I got my strength from. Did I have a choice? Either the disease eats you up or you eat it, for dessert there is a portion of life. It's hard, damn hard, but one thing I can say: this fight is worth fighting for! Here i am : young , sick and hungry for life! Why I started this blog? Its the same reason i want to become a doctor: Not for money, not for attention, purely because i don´t want people to go on this journey by themself how i did and for more awareness for chronical dieseases like BID!