Today I want to write about something completely different. About something I am suffering from for 7 years now.
It is called Ulcerative Colitis
First, I do not want to raise compassion! I am in the lucky position to have a loving wife which supports me all way through. But I want to raise awareness.
So, What is Ulcerative Colitis ?
Ulcerative colitis (UC) is a long-term condition that results in inflammation and ulcers of the colon and rectum. The primary symptoms of active disease are abdominal pain and diarrhea mixed with blood. Weight loss, fever, and anemia may also occur. Often, symptoms come on slowly and can range from mild to severe. Symptoms typically occur intermittently with periods of no symptoms between flares. Complications may include megacolon, inflammation of the eye, joints, or liver, and colon cancer.
Together with Crohn's disease, about 11.2 million people were affected as of 2015. Each year it newly occurs in 1 to 20 per 100,000 people, and 5 to 500 per 100,000 individuals are affected. The disease is more common in North America and Europe than other regions.
from English Wikipedia
Or to have a more visual explaination:
What does that actually mean?
Some suffer from a lot of pain, some don't. Others have weight loss and fever. Some don't. But something that all of them have in common is that they have to visit the toilet quite often. And by this, I am talking about up to 40 times a day.
I have to admit, 40x a day is a very drastic stage. My questionable personal record is 20x a day. I think you can imagine what is means to have the runs every hour. Even at night.
What does it cause?
To sum it up: unknown
It is most probably a mix of a genetically caused malfunction of the immune system and a result of our modern "western" life style (stress, fast food, environmental factors).
How do you get rid of it?
To sum it up: you don't.
Unfortunatelly there is no cure. We have a wide range of pharmaceuticals like Mesalazine or highly sophisticated biologial treatments .
Ah, yes, I forgot that there is ONE cure. The surgical removal of the colon. You can't have something inflamed that is not there, but at what cost?
The removal is actually the last step you want to go if everything goes wrong or you even develop colon cancer.
How do you live with that?
To be honest. It is not easy. Luckily I don't have any pain. But that's the only good point.
Some have remissions (that means no symptoms at all) for years, but I am not really responding very well to the medication. Some weeks are very good, meaning I need to go to the toilet 3 times a day, but usually it is something between 5-10 times.
Am I able to travel? Yes, absolutely. But I avoid beeing somewhere without a possibility to relieve myself in a certain range.
For me, personaly, the biggest issue with all this, is the fear of attracting attention.
I mostly need to go in the evening, so it can happen that - if I am sitting in a bar or restaurant for a couple of hours - I need to go to the bathroom two or three times.
Nobody ever said something, but I don't want to have people think "Wtf is going on with him?"
Very few people know about my disease, not even all of my friends do. And I don't really want them to know. Why would I?
In the last 7 years, I tried a lot of various things. From cheap and natural up to biological treatment. Luckily we are insured in central europe otherwise I wouldn't be able to afford it. Peak was a total of ~14000€ in pharmaceuticals (those biologicals are expensive as hell) and hospitalisation in one year.
Which leads me to one simple solution: deal with it!
What I have learned in the last years: if you can not beat it, learn to live with it.
As long as there is no absolute necessity I will keep my colon (who would not?!) in the hope that some day a cure appears and in the meantime I WILL NOT PUT MYSELF DOWN!
I will make the best out of my life. And I will try to don't care about what other people may think if I am going to take a sh*t the 3rd time at the same evening!
After so much text I have to ask myself again, why am I writing all this? Is anyone actually going to read it anyways?
I know why. I want to tell you - who may have a similar condition - one thing:
Chin up! Down let yourself down!
And to all others: Take care of yourself!