There has been a lot of discussion in online forums recently about inflammatory bowel diseases and what illnesses actually make up this category of digestive diseases. Unfortunately, there seems to be a lot of confusion as to what is considered a form of inflammatory bowel disease and what is not. Due to that confusion, there is a lot of misinformation and false advertising out there about what colitis actually is.

Sure, that categorization may sound minor to someone unfamiliar with these digestive diseases, but to someone living with Crohn’s disease or ulcerative colitis every day, it’s infuriating.

We are not saying that we are innocent – saying colitis is much easier than saying ulcerative colitis or indeterminate colitis. However, saying that colitis is a type of inflammatory bowel disease is both inaccurate and, to those who live with Crohn’s disease and ulcerative colitis, offensive.

So then the million-dollar question is: what is colitis?

We took to Google to find the answer to this question and found it hard to track down a general definition of colitis. The results that popped up defined ulcerative colitis but not colitis on its own.

After some digging, we finally found the definition.

According to Medline Plus, colitis is a general term referring to the inflammation of the colon (large intestine). A person with colitis may have an infection, including those caused by a virus, parasite or food poisoning; an inflammatory disorder like ulcerative colitis or Crohn’s disease; a lack of blood flow to the colon; or past radiation to the large bowel.

Yes, there we said it- inflammatory bowel disease is one type of colitis! However, the transverse is not true; not all types of colitis are inflammatory bowel diseases.

According to Dr. Deborah Proctor, medical director of Yale University School of Medicine’s Inflammatory Bowel Disease Program, there are many forms of colitis that are not types of IBD including:

· Gastroenteritis: inflammation of the gastrointestinal tract resulting in some combination of diarrhea, vomiting, cramping and abdominal pain;

· Microscopic colitis: an inflammation of the large intestine that causes persistent watery diarrhea;

· Lymphocytic colitis: a type of microscopic colitis in which in which white blood cells increase in colon tissue;

· Collagenous colitis: a type of microscopic colitis in which a thick layer of protein develops in colon tissue;

· Chemical colitis: an inflammation of the colon caused by the introduction of harsh chemicals to the colon by an enema or other procedure; and

· Ischemic colitis: when blood flow to part of the large intestine is reduced due to narrowed or blocked arteries, providing insufficient oxygen for the cells in the digestive system.

​Symptoms of colitis mimic many of the same ones as Crohn’s disease and ulcerative colitis- abdominal pain and bloating, chills, dehydration, diarrhea and fever to name a few. Because of the symptom similarities, it’s not surprising that many people either think they have Crohn’s disease and ulcerative colitis when they do not or are misdiagnosed. What separates inflammatory bowel disease from other forms of colitis is this: inflammatory bowel diseases are chronic conditions; the other types of colitis are acute and go away after a period of time.

As a patient who has suffered from ulcerative colitis since the age of 13, lives with a permanent ileostomy as a result of the disease, and has had to undergo 14 major (I am talking cut down the middle of my stomach) surgeries, I try every single day to make sure people understand what patients with inflammatory bowel disease go through. Since ulcerative colitis and Crohn’s disease are difficult for many people to talk about, there are a lot of myths surrounding what patients and caregivers experience.

Whenever I would tell someone that I suffered from ulcerative colitis, they would usually give me a blank stare which would then force me to say “it is similar to Crohns disease.” Even after saying that, I know most people had no clue what I was referring to but it seemed to ring a bell a little bit more. If I am not met with that blank stare, I hear things like oh yeah I had colitis for a few days a number of years ago.

Most people have experienced a form of colitis at some point in their life. So when someone uses the word “colitis” when referring to ulcerative colitis, it perpetuates the myth that colitis is a universal term for all things stomach related. That is the one thing I truly never understood about the IBD community. Most of the public think that all forms of colitis are similar in their ability to impact a person’s life yet we all can’t take the time to write an extra word to help differentiate what these diseases are? After all, colitis is shorter and flows better. Why is it ‘Crohns and Colitis Awareness Week’ when it should be Crohns and Ulcerative Colitis Awareness Week?

I skewered the internet to try and find a cover photo for facebook that said “Crohns and Ulcerative Colitis Awareness Week” – not just ‘Crohns and Colitis Week’ or ‘Crohns Awareness Week’ but something that accurately supported both forms of inflammatory bowel disease.

Ulcerative colitis has impacted every fiber of my being. It stole my innocence and prevented me from being a child. It caused me to need organs removed and have an ostomy at the age of 16. It stopped me from being the competitive swimmer I started out as and continued to work tirelessly to keep up. It ripped away my control and forced me to take comfort in the small, seemingly insignificant things I could control in my world. It shattered my self esteem. It wrecked havoc on my family. It forced me to spend 6 ½ years trying to mottle through college; having to return to class way too early because I was so afraid of being even more behind than I was. It caused me to develop an extremely unhealthy relationship with food. It has taken away friends I was close with. It has forced me to completely lose myself and not be able to recognize the person in the mirror. It has caused me to gain and lose 70lbs when I am only 5’2. It has caused my once thick head of hair to become so thin. It has forced me to take a year off of high school (midway through) because even though I forced myself to go to class with a pic line and a drain in due to fistulas and abscesses, I was still too sick to finish. It caused me to self medicate because both the physical and emotional pain of this disease became too much to handle. It caused me to beg my dad daily that if by {insert date} things hadn’t gotten better, he would support me if I wanted to stop fighting. It caused me to stop sleeping. It caused me to develop vicious chronic migraines. It has impacted my menstrual cycle. It has forced me to play trial and error with not only IBD medications but psychiatric ones as well causing more emotional issues than I knew what to do with. It has caused me to be more dependent on my mom and dad than I am comfortable with. It has made me feel so guilty for so many reasons. It has prevented me from pursuing my goals and finding my place. It has caused me to develop post traumatic stress disorder. It has forced me to isolate myself for so many years. It has turned me into this fake person because I didn’t want the people in my life to look at me as a downer.

It is for those reasons and about a thousand more that I say the full name of my disease every chance I get. I want every single person who reads my work or listens to me speak to understand without a shadow of a doubt that all forms of colitis are not the same. I want the name ULCERATIVE COLITIS to actually ring a bell in someone’s mind when a person says that they suffer from UC. I don’t want any other person to have to deal with the rude, offensive, and ignorant comments of others simply because they don’t have the right information.

This is why we ask that you speak with authority when you are discussing the two main forms of inflammatory bowel disease: Crohns disease and ulcerative colitis. We ask that you gently correct someone who is using the word colitis and ulcerative colitis interchangeably. We ask that you spend the extra .2seconds and write out the whole name of the disease. If it was a condition that was so near and dear to your heart and the hearts of your family, you would want it accurately depicted. You wouldn’t shorten the name of your disease in the name of making things flow better. And to those people who do suffer from ulcerative colitis and still prefer the term colitis because it is simpler, please think twice.

This post was co authored  by Rebecca Kaplan of www.caringforcrohns.com & I <3