Ulcerative Colitis: What people think it is vs. what it REALLY is

Something that frequently bugs me is the lack of understanding that still pervades our society about what Ulcerative Colitis actually is.  I’ve often heard U.C. misdescribed and under-described, but more often have found that people who aren’t directly impacted by it just don’t really know much, if anything, about it at all.  

The lack of understanding is surely aided by the fact that it's still rather taboo to talk about “embarrassing” things like Ulcerative Colitis.  I find this to be absurd.  Ulcerative Colitis is a disease whose numbers are growing rapidly, upending the lives of more and more people of all ages, from all races and ethnicities, and all socio-economic groups.  It’s time for us to stop being shy, and start educating more.

So to that end, let’s raise some awareness by really digging into what this crazy disease really 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.

WHAT PEOPLE THINK ULCERATIVE COLITIS IS:

Stomach cramps.

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

WHAT ULCERATIVE COLITIS REALLY IS:

Sure, there’s 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: 

• Ceaseless, bloody, painful diarrhea

• Bowel Urgency - the frequent experience of 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

• Toxicity and horrible side effects from meds and treatments

• Chronic exhaustion/fatigue from the illness, the medications, and from 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 - all directly linked to trauma from the illness

• 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

So basically, 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) 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.  There is a way out.  Read my story about healing and staying healed from severe U.C. here.  But even though I’m fortunate enough to have been free of this terrible disease for the past 12 years and counting, my resolve to get the word out has never been stronger.  

Just because this devastating disease happens to involve poop is no reason to be embarrassed about it.  Let’s raise our voices, remove the stigma, and give IBD sufferers the support, compassion, and hope they so badly need!