It's half past three in the morning. I am laying on the floor, my forehead pressed against the cold parquet, trying to not lose control completely. One cramp in my abdomen goes
after the next. It feels like someone keeps ramming a knife into my stomach. I'm trying to breathe. I'm trying to make it to the bathroom somehow. For the fourteenth time in a few hours. I
haven't slept much in 12 days. But how - when you have the worst fucking diarrhea attacks of your life. Bacteria? Norovirus? Stress?
I went through several family doctors, all remedies against diarrhea and pain, and I am down to 97 pounds. In the morning, I decide: I can't take it anymore. I scratch the ice from my car windows at 7 a.m. by nearly collapsing and drive one last time to the practice. "We have no results again," says the super-nice doctor full of pity. "I have to send you to the hospital now."
Three days are following in which I mix up the hospital by being high from the gastroscopy, looking out for wifi desperatly and making the entire ward laugh. Why whining? I finally want to know what's going on and I won't let any fucking disease in the world take away my joie de vivre! Then the diagnosis: Ulcerative Colitis. The little sister of Crohn's Disease. Lifelong chronic bowel inflammation. It hits one out of 10,000. Just because. In the same second I decide to include "her" in my game of life and to play with her in such a way that she becomes dizzy. Chronically ill? Forget it. This is life - now more than ever!
My dad and me are hanging out for four hours in the ER. I even hang out extremely cool - on the drip. My dad is more nervous than me. I've already lethargically shut down. Two weeks of constant pain and insomnia are almost as effective as a joint. Anything matters anymore. I also already have an idea what's wrong with me. My best friend has always talked me into not looking up symptoms on Google - but of course everyone looks up that shite on Google. And then has at least a tumor or a heart transplant.
My research led to the diagnosis of Crohn's Disease or Ulcerative Colitis. Both chronic bowel inflammations, both the same crap. Literally. It mostly hits young people between the age of 20 and 30. Out of the blue. The knowledge about both diseases is foggy. Causes? Nobody knows for sure. Curing the causes? Impossible so far. The only thing that works is to relieve the symptoms and hold back the next acute attack as long as possible. Healing? None.
The bowel just keeps getting inflamed. The immune system attacks itself. The whole thing shows off in terrible cramps and massive diarrhea. For days I have been drinking nearly a gallon of water with salt and sugar to compensate for the loss of fluids and nutrients. I'm hungry, I eat a lot. It only comes all out again after half an hour. Sounds awkward? It's even nastier when you have it day and night and don't even dare go shopping anymore.
While we are waiting for some dubious results they took out of my arm again, I try to explain carefully to my dad what I suspect. He's freaking out a bit. Chronic? Always? Forever?
Yes. Chronic. Always. Forever. There are funnier things. Grilled marshmallows for example. Or sausage with a smiling face.
It's okay," I say calmly. "My life had been extremely awesome in the last few years and when there is some shit coming up now, that's fine, too. We'll manage!"
Doesn't seem to be very plausible to my dad at first glance. When the doc calls me, I briefly skate across the hallway on the holder of the drip. I can cry enough when I'm dead.
I'm being hospitalized. "We need to do a gastroscopy. And a colonoscopy. And an MRI," says the doctor. "Three days minimum." I nod and sign my death warrant, well, my consent. I'm feeling so rotten that I can even stand the idea of awful tubes in my body. I just want it to stop. And to know. Then I enter my shared room. Since I did not come in with blue light, I could pack some important things at home. My laptop, 200 charger cables, my cell phone. And clothes. Shower kit. But the most important thing is my electronical shite. Because I'm self-employed and need it for my job. All I can do with a sick certificate is sticking it to my forehead and drink a schnapps. And I just got a well-paid job. With a deadline.
"Do you have any further questions?" asks the nice nurse.
"Yes!" I call immediately and slam my notebook on the bed. "Do you have wifi in that lousy shed here and where are the outlets?"
He looks at me in confusion for a second. I know I'm as pale as a white wall and as thin as a piece of paper. But I have the energy of ten elephants. I'm just in pain, I'm not missing both of my arms and legs!
Shortly thereafter I get the wifi password and a bed with special outlets, which even work in case of a power failure. I'm glad that I'm being taken seriously and that no one is getting on my
nerves with "You need rest!"
I don't need any rest. I need a diagnosis. And best before yesterday, because in four days I'll be photographing a big wedding that I can't skip. And don't want to skip. Because even though I can't get sick, my job has never been a burden. It is great fun, my fulfillment and makes it possible for me to travel several months a year and still earn money like everyone else. I am smiling at an old lady across the room, put on my headphones and write a bill, while Bob Dylan is singing in my ear.
Only a few minutes before the gastroscopy I see the disgustingly large garden hose, which will go down all the way in my throat. But they have those "I don't give a shit"-drops as my good friend, who also is a nurse, tries to explain to me on WhatsApp to calm me. In fact, I only smell something corrosive and poisonous for a moment and then I'm gone. When I wake up later, I have no pain and no memories. Nice! Besides, everything is incredibly funny and dark. "What kind of cave am I in?" I say and laugh stupidly. The nurses look at each other and grin.
When two nurses bring me back to the room, I say "The elevator is like a roller coaster, only for pensioners!" Then I realize that I talk nonsense, but I can't control myself either.
"Well, you liked the drops a lot, didn't you?" one of the nurses throws in and laughs. I laugh with them and don't know why. Someone adds, "The patient seems to be a little high!"
I vaguely remember that there was something about bleedings in the risk-pamphlet. So I decide it could be worse for me. Before I laugh again to the amusement of the entire staff. Still one month later - at the housewarming party for my Tiny Home - my best friends play the completely nuts voicemails I sent them on WhatsApp back then. . .
I manage it to confuse the nurses also during the colonoscopy. By simply waking up in the middle of it (I only recognize a strange cold feeling in my lower abdomen but no pain!) - and say, "I can hear you!"
The nurse quickly shoots with more poison. After that, I am so knocked out that I'm not even high. The next day I have an MRI where you get stuck in this weird magnetic tube. "Are you claustrophobic?" asks the MRI lady.
"Yesterday I was awake during my colonoscopy - I am not afraid of anyhing" I calm her down. The tube is still pretty tight and even with headphones it sounds like I'm on a big construction site on an interstate.
Besides, there's only one day left before the big wedding. And I've gotten nothing but painkillers so far.
In the afternoon, the doctor comes into the room. "I'll cut it short. You have chronic bowel inflammation. Colitis Ulcerosa or Crohn's Disease. We're still waiting for details." She looks at me and waits carefully for the reaction.
"Yes, I already knew," I say dryly. "What's the less crappy thing?"
She explains to me that it doesn't do much basically, but Ulcerative Colitis would be a little bit better, because there "only" the intestine is inflamed and not also the stomach and esophagus. I want to throw confetti because I am so exalted. Then I sit up and just say, "Okay."
It is okay. The disease chose me, and there's no reason for it. But there's also no reason to give up and get desperate. Me and the disease, we just have to come to terms. I'll show her the way, though.
I'm released from hospital. Next week I'm going back to the family doctor. Then to a gastroenterologist - a specialist for intestinal escalations. For a long-term therapy. In order to get the current inflammatory under control and then to adjust myself in such a way that I am symptom-free for as long as possible. I'm gonna have to take medication all my life. Some with side effects. I'll always have relapses. But I will face the storm and survive it. The secret of slaps in your face is to wipe them off and move on. To grow on them.
The day after my release, I work for ten hours at one of the most beautiful and fun weddings I have ever been to. I have some emergency pills with me that I don't need.
One day later I'm standing in my Tiny Home, which is still a huge construction site at that time, with a paint bucket, six layers of clothes and a brush. I'm looking at the wall where there's no mirror. "Alright," I say calmly and firmly and grin until it hurts. "Now more than ever!"
If you are caught by a disease or if you need advice or someone who is simply listening, feel free to contact me at any time. I love to share my courage, energy and my experiences - of course especially with regard to Ulcerative Colitis or Crohn's Disease. How to process the shock, live with it and even travel intensively!