When I was first diagnosed with UC, I started to research this odd condition I had been diagnosed with. I read a lot of things, but because it was all new, I read all those things with little to no background to go on.
The other day I decided to do a search for Ulcerative Colitis, just to see how I would understand things now that I know so much more. I was a little surprised by one thing.
Some articles said that ulcerative colitis is a common condition. Um . . . what?
After more reading, I discovered that apparently once a certain number of people develop a disease, it is then considered "common." But I've read that number is anywhere from 200,000 to one million people. That is a huge difference!
In addition, there are multiple sources that say there are 600,000 to 900,000 Americans who have ulcerative colitis. But other sources say it is closer to 1.5 million. However, there is some confusion involved with sources that are quoting estimates for UC while others are quoting estimates for Inflamed Bowel Disease. Of course, UC is an IBD, but not all IBDs are UC. (This is when my brain started to hurt.)
So then I did a search for how many Americans have multiple sclerosis. The answer was "According to the National Multiple Sclerosis Society, approximately 1 million Americans live with multiple sclerosis (MS). This number is based on estimates from the 2019 National Health Interview Survey (NHIS)." (A.I. response)
Here then, is my question. If ulcerative colitis is a common condition, its prevalence being about the same as, or a little more than multiple sclerosis, why are so many people aware of MS, but don't know a thing about UC?
Most people have heard of MS. I was around ten years old when I heard it the first time. And I've heard it many times since then.
But UC? Most people have NEVER heard of it unless someone in their close circle develops it.
In my post four months ago, one of the things I wrote about was how people on the ulcerative colitis reddit thread were commenting on how they explained what UC was to people around them. Some of their explanations included all of the gory details. Others tried to be accurate, but more tame. Others told people that their UC was Crohn's disease because everyone has heard of Crohn's, but no one has heard of UC, and it was just easier.
Why have so few people heard of ulcerative colitis?
One possible explanation for the differences in people's awareness between MS and UC is the poop factor.
Poop is icky. Gross. Appallingly smelly. Sometimes it smells so bad you have to fight off your gag-reflex.
Poop also has an enormous embarrassment factor for anyone over the age of four. Having an accident in your pants is one of the worst acts of humiliation, be it pee or poop. But poop is the ultimate.
That being the case, why would anyone with a disease that causes you to not only poop out diarrhea uncontrollably, but blood as well (more grossness) want others to know about it?
So it's not talked about. Television series and movies don't show it. And WE don't talk about it. None of us wants to be known by family or coworkers as the poop guy or the poop girl or the person that has to always be accommodated when going to restaurants because they can eat only certain foods.
Some people don't want anyone to know when they have a health problem, either because they are just very private or because they don't want other people to feel sorry for them. Throw in the poop factor and they feel doubly self-conscious.
It makes sense, then, that few know about UC because no one talks about UC.
I don't care who knows about my UC. I have no problems talking about adult diapers, colonoscopies, or what's the best cleaner to get poop out of clothes and off the floor. I feel no shame with it. I didn't ask for it, nor did I do anything wrong to cause it. If someone said I had to go on the rooftops and shout to everyone that I had UC, I would ask them to give me their biggest megaphone.
My thinking is that the more people who know, the better. That way, if I'm with someone and my intestines start to abruptly revolt, they will understand why I suddenly dash away. Or why I don't eat something. Or why I decline a trip that requires a nine hour drive. Or why I pass gas more than normal accompanied sometimes by some particularly disturbing sounds.
One other reason UC sufferers may not talk about their condition is that far too often we hear, "You need to change your diet! You need to exercise! Eat more vegetables! Your condition is YOUR fault." (In these cases, it may be better to be silent.)
I know having this disease is embarrassing. But maybe we should talk about it a little more? Maybe so more people become aware of it? At the very least, let's stop being embarrassed by something that life loaded upon us. And let's think of all of the ways we are still living our lives, or will live our lives, once medications kick in.
Yes, we have ulcerative colitis. Yes, poop is involved. Embarrassment is optional. And I opt out!
© Colitis Senioritis 2025
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