Crohn’s disease is a type of inflammatory bowel disease (IBD), that may affect any part of the gastrointestinal tract, from mouth to anus. Signs and symptoms often include abdominal pain, diarrhea, fever, and weight loss. Other complications may occur outside the gastrointestinal tract include anemia, skin rashes, arthritis, inflammation of the eye, and tiredness.
That‘s dictionary. In real life it means, that us patients have to visit the toilette frequently. Often those visits are very painful, difficult and sometimes demeaning. The worse scenario can be that you just don’t have the strength to make it to the toilette… Luckily enough for me the situations were mostly predictable and could be partially controlled.
But let’s go back to the positive approach to the disease, so patients are motivated to return to their normal life. To help coping with the disease, there are multiple informational booklets from doctors or patients organizations.
So, there I was one day, sitting peacefully in the hospital, sucking a biological treatment into my veins. Out of boredom, I picked up a random book about Crohn’s, written by EFCCA (European Federation for Crohn’s & Ulcerative Colitis Associations. It was called „How to manage life with IBD“.
And come on! The first chapter of the book was called “Fecal urgency and incontinence” What the hell is that? If I was diagnosed with Crohn’s only today and this would be my first source of info, I would want to jump of a bridge. Big thumbs up to the authors for people motivation… NOT
It reminded me of my regular visits to doctors during sick days: “Nagyová… Yeah, here it is. Well, yes, the classic case of Crohn’s heavy form. She had this and this, and this and this will still appear in the future. Well, we will see what happens to her… ” Doctors protect themselves by telling the patient all possible outcomes of the illness, mainly the bad scenarios. It does not matter, if one of those complications occurs with 1 out of 100 patients. All problems on the table, so the patient cannot later complain for not knowing the outcome. The problem is that in those times people do not think straight. We just hear all the bad stuff and think it is the end of the world. Fear conquers all senses. But nobody really cares about that, we have to deal with it alone back at home.
I would like to address my fellow Crohn’s patients, ostomates, all people with digestive issues who are afraid to visit the doctor. Yes, Crohn’s is not the easiest disease and sometimes really sucks as hell. But still it is better than a bullet in the head. Just try to assess your life and find a suitable and comfortable way to live with your new symbiont. Because even though life with Crohn’s was really hard for me, it taught me to relax more. I need to actively work on my healthy diet, happy mind, enjoy my work. I need to live in peace and harmony. Because if I do not stick to that, it will bite me back very quickly. And I don’t want to go back to pain.
Crohn’s is my biggest enemy. At the same time, my greatest teacher.