"What's UC?" How I Explain My Condition to Others
At age 19, I remember I didn't even know what a gastroenterologist was or what one did. But back in 1989, I had an appointment with one to get help for my constant bloody diarrhea, intestinal pain, and urgent need to get to a restroom. After performing a sigmoidoscopy, I was told to return for a colonoscopy. Then, this stranger-of-a-doctor informed me I had "ulcerative colitis."
"What's that?" I asked. That was then. Today, the scenario looks different.
Ulcerative colitis... Huh?
At age 52, I am often asked this question whenever I speak to people who have never heard of UC. As a public high school educator, teenagers are usually the ones who ask me the most. It pops up whenever I tell them to ignore me if I suddenly speed out of the classroom.
So how do I tell young people what ulcerative colitis is? My quick response is, "It's an inflammatory bowel disease."
Just the mere mentioning of the word "bowel," and students rarely follow up with any more questions. Unless someone in the room struggles with intestinal issues. Then, I'll usually receive queries about the symptoms of it.
Embarassment and explanations
Because I struggled with pain and diarrhea so much as a teen, I know how difficult it can be to talk about an inflammatory bowel disease. I remember sitting flushed with embarrassment the first time I asked a GI about issues surrounding ulcerative colitis. So, I try to be as candid as I can when people ask me questions about it.
For those who ask more questions, I usually begin by saying that colitis is the chronic inflammation of the large intestine. I leave out that it includes the rectum. If someone is interested in the specifics of the large intestine, I figure they'll research it.
Inflammation is the enemy
Then, I explain that the lining of the colon gets inflamed or irritated and develops small sores called "ulcers." So, imagine what happens when digestion hits that inflamed, ulcerated area of the body – it hurts. That's why I have abdominal pain, diarrhea, the need to run to the restroom, and blood in my stool.
Just that information alone can be quite a bit for a person to consider. But I always tell people who believe they have bowel issues that it's not their fault nor should they feel alone. Based on the statistics I see online, over 3 million people in the U.S. live with IBD and over 10 million worldwide. So, it's more common than most think.
Because I talk to young people more than adults, I always throw in a bit of humor, too. As someone who's lived with it for over 30 years, I refer to it as my "fire-breathing gut dragon who gets really agitated at what I eat and at my stress load. That dragon just loves being a pain in my butt." I think approaching UC with some comedy helps lighten a person's attitude toward a bowel disease.
Explaining UC to family and coworkers
With family and coworkers, I explain to them that UC is an inflammatory bowel disease, and, please excuse me if I need a restroom immediately. Most everyone understands. Why? Because everyone digests food. And everyone has experienced diarrhea, so I usually stress the point "imagine having a chronic case of it along with abdominal pain, blood, mucus, and many other symptoms."
If someone asks what causes it, I reply with, "No one knows exactly what causes it. Maybe I have a genetic predisposition. Maybe gut bacteria cause it. Or maybe my immune system just prefers attacking my GI system. Possibly, it could be a combination of many factors." In the end, "I know I will always carry my UC dragon with me. No cure exists for it. It just is what it is."
Talking to the newly diagnosed
To a newly diagnosed individual, the lack of a cure might sound demoralizing, but I like to stress that UC flare-ups can decrease with the right medication. Ultimately, reduction of flares and/or remission is possible. But no "one-size-fits-all" treatment plan exists. Every treatment path is distinct. My UC differs from everyone else's because each body is unique.
When I was younger, I hid all my problems associated with UC. It embarrassed me, and I thought no one would understand. I once called it the "dirty disease" because... well, it made me feel dirty. I was always running to the toilet.
Now, I realize that "hidden" approach only added unnecessary stress to my symptoms. So, I recommend that people be open about their condition with family, friends, and coworkers. It's important to express what others can do to offer support.
Ulcerative colitis is different for everyone
In addition, strategies to cope with either UC or Crohn's look different for each person. Getting apps that find public restrooms help, carrying a change of clothes for when accidents occur, as well as carrying spare toilet paper or wipes all help reduce stress surrounding bowel urgency.
As with all medical advancements, new therapies arise for those living with IBD. Again, finding the right medicinal "fit" varies for each person. So, I urge everyone to stay positive and pursue daily life as normally as possible. I stress that if wimpy me can learn to live with a UC dragon, then anyone can.
Looking for understanding
To date, I have yet to meet anyone who has ever responded negatively to my disease. Not even teenagers. Take it from a high school teacher who deals with the roller coaster effect of their hormonal ups and downs. They always understand my need to run to the restroom. As a matter of fact, everyone is more than willing to help and offer understanding through this journey of IBD.
Trust me, it is possible to navigate the symptoms surrounding ulcerative colitis.
If anyone has specific questions about explaining this condition to others, please add your comments here. We here at InflammatoryBowelDisease.net are all willing to help you navigate this journey, too.
Will you tell us what life with Crohn's or UC is really like by taking our In America survey?
Join the conversation