Living With Ulcerative Colitis

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:
Image Source

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!

Comments 16

Phew... that does not sound too good, but I like your attitude. Fuck those who may think you are weird, live your life and all the best for the future!

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22.10.2019 14:13

Thanks fir sharing this @wirago.. I wouldn't know about that ulcerative something kinda illness if you didn't write it down. I know having diarrhea feels like, the only type of disease which disabled me from having a nice day.. but combining with blood and at least 3 x a day😢 how can you live with it? You are amazing!

So... no matter what you eat and your situation or what season is.. you need to go to the toilet at least 3x/day? You've just known about it 7 years ago.. is there any of your relatives have the same situation like you?

22.10.2019 15:10

Well, there is food I am avoiding like very spicy food or too greasy stuff like fried cheese. Actually food that may cause problems even for healthy people :)

Yes, 3x is the minimum. But that's like "normal looking" almost healthy.

My cousin has the same disease. And has it quite under control. Less frequently than me but painful from time to time. Rather different than better/worse.

22.10.2019 15:24

Aahh.. I see. So you need to take care of what you eat and prevent yourself from stress too😯 I hope there will be a cure for that, one day and I wish that you don't have to experience that 20x a day. By the way.. how does that influence your social life? What about alcohol... can it be the trigger factor too?

22.10.2019 15:40

As long there is a toilet somewhere not at all. Alcohol can be an issue, but in small amounts (like a beer or two) is OK.

22.10.2019 15:49

Cool... have you ever experienced any emergency situation with that ulcerative things when you're not at home? I mean... from the symptomns you mentioned above, what's the first aid things except going to the toilet?

22.10.2019 15:53

There is none. If you need to go you gotta go. And hope that not all stalls are occupied for too long ^^

22.10.2019 17:10

oh yes, the viewer of the picture above tells of someone who is having an upset stomach due to not being able to defecate for two days. and this is one example of organs full of stool stools in the large intestine, so that it becomes a very smelly garbage when inhaled. according to nutritionists and doctors say this is caused by eating less fruits such as papaya and bananas which are full of natural fiber! 😂

22.10.2019 15:41

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22.10.2019 22:05

wow, that's really tough! Have you ever tried fasting? It's not easy, but I heard that it activates healing powers in the body... wish you the best of luck and health!

23.10.2019 19:32

Well, yes. If you eat less you don't have the urge to go to the toilet that often. Unfortunately only for obvious reasons and not because of healing.

23.10.2019 20:32

however do some reasearch about it. There are some good documentaries about the positive effetcs

23.10.2019 20:36

My diagnosis is ulcerative colitis. I have been with him since 1996. Previously, I had to take a lot of pills, undergo research and even hospitalization. One critical time I lost a lot of weight and looked like a skeleton covered with skin. I do not want to say that I’m cured right now. But I lead a normal lifestyle of a healthy person.
At first, one healer with the help of herbs brought me out of a critical state .. During periods of exacerbation, she recommended not to eat fresh herbs. I eat cereals and various other foods. But the intestines must be filled with dietary fiber. And there is another preventive measure. I smoke 1-2 cigarettes a day. Nicotine has a positive effect in this disease. I smoke 1/3 of cigarettes after each meal.
And yet, eat 10-12 apricot kernels every day or every other day. This is a good prevention of oncology.
Be healthy.
And yet, the main cause of exacerbations is stress.

30.10.2019 18:53

Thank you for sharing your experience. I also avoid most of fresh herbs. Mostly fresh lettuce. I have also heard about the positive aspects of smoking. But to start with that seems a bit odd.

30.10.2019 20:31

It looks strange, but if I do not smoke the day, then I begin to notice signs of exacerbation. It is only better to smoke pipe tobacco. Cigarettes are made of shit

30.10.2019 20:36

I find this post very insightful, thanks for the awareness.

05.11.2019 11:05