Ulcerative Colitis: What People Think it is vs. What it Really is

Ulcerative Colitis affects an estimated 1 million Americans, yet it remains one of the most misunderstood autoimmune diseases. Over the years I've encountered many misconceptions about UC—from inaccurate descriptions to complete unfamiliarity with the condition altogether. UC's prevalence means that even if you haven't been diagnosed yourself, someone in your life likely has been—and understanding UC can make a real difference in how we support those who live with it.

So let's raise awareness by diving in and exploring what this complex disease actually is.

WHAT THE CLINICAL DESCRIPTION OF ULCERATIVE COLITIS IS:

Ulcerative colitis is an autoimmune disease in which the lining of the large intestine becomes inflamed.

True, but seriously lacking detail, in my opinion.

WHAT PEOPLE THINK ULCERATIVE COLITIS IS:

Stomach cramps.

Also true (except for the “stomach” part), but omits the many, other things that U.C. can be.

WHAT ULCERATIVE COLITIS REALLY IS:

Sure, there can be cramps involved, but that’s just a very small piece of the misery pie. When we are defining the realities of a moderate to severe Ulcerative Colitis flare, we’re actually talking about a BRUTAL, maleficent disease that can have a significantly negative impact on all facets of one’s health and life.

So here’s what the reality of having moderate to severe Ulcerative Colitis can ACTUALLY look like: 

• Frequent, bloody, painful diarrhea

• Bowel Urgency - the experience of suddenly having to run to the bathroom, and not always making it on time

• Loss of bowel control (not being able to hold it, even briefly)

• Gut pain so bad you can’t move

• Searing rectal pain

• Drastic, dangerous blood loss

• Severe, dangerous dehydration

• Rapid, dangerous weight loss

• Malnutrition

• Frequent hospitalizations

• Blood transfusions

• Having to wear diapers, no matter your age

• Fear of eating/drinking as both exacerbate symptoms

• Fear of leaving the house and being away from a bathroom

• Always having to have a bathroom plan and to know exactly where the closest bathrooms are

• Side effects and long-term risks from medications and treatments

• Chronic exhaustion/fatigue 

• Inability to sleep due to constant need for bathroom trips

• Hard to treat anemia from blood loss

• Tachycardia (high heart rate) from dehydration

• Mental health effects - anxiety, depression, PTSD 

• Loss of freedom, loss of life enjoyment, loss of ability to work, play, and do pretty much anything

• Possibility of additional complications like toxic megacolon, colon perforation or rupture, anal fissures

• Significantly increased future risk of colon cancer

Worst case but very possible realities of Ulcerative Colitis: 

• A lifetime of pain and suffering

• Losing your colon, and living the rest of your life with an ostomy bag

• Death

Ulcerative Colitis is a whole lot more than just “stomach cramps.”

A greater understanding of the realities of U.C. (and fellow Inflammatory Bowel Disease, Crohn’s Disease) can only lead to more empathy and compassion for those who suffer from it.  

Equally important is that greater understanding will surely lead to greater attention and more resources being given to join in the fight against IBD.

The good news is, I firmly believe we don’t all need to be held hostage for life by this terrible disease. My personal experience shows that healing IS possible.

Let’s raise our voices, remove the stigma, and give sufferers the support, compassion, and hope they so badly need! 

‍

Disclaimer: This information is for educational purposes only - it is not medical advice. The author is a certified nutrition coach, not a medical doctor. Ulcerative colitis is a serious medical condition that requires professional medical supervision. If you're experiencing symptoms or have concerns about IBD, consult a qualified healthcare provider.