What It’s Like Being Diagnosed With Crohn’s Disease

While I look healthy, I have been living with Crohn’s Disease for seven years. Crohn’s is a chronic inflammatory bowel disease that can affect any part of the GI tract. The causes of Crohn’s Disease are still unknown, though research suggests genetic factors contribute to the development of Crohn’s. Symptoms usually appear in people between the ages of 15 and 35. It is a difficult disease to explain because no person experiences symptoms exactly the same. Unfortunately, there is no cure for the disease, which means that every patient of Crohn’s strives for remission. A combination of medical treatments and behaviors can help to successfully manage symptoms.

I first became ill at the age of 19 when I was a freshman at Gettysburg College. After only two months of living in the freshman dorms, I had to spend a week in the hospital. Since there is no one specific test for Crohn’s Disease, I left the hospital without an explanation. When I returned to campus, my peers gossiped about my rapid weight loss. At the time, I took medications that altered my sense of taste and ate the plainest meals available at the campus cafeteria. I could not drink alcohol in an environment that revolved around Greek life. It took two stressful months and multiple exams before I was officially diagnosed with Crohn’s Disease. It was unbelievably depressing to learn that I had developed an incurable disease.

Currently, I take four pills per day to maintain a semi-normal life. The size of my daily pills usually shock my friends. Luckily, I have avoided more serious medications such as Humira, an injectable drug. Crohn’s Disease does affect my life daily but I generally have my symptoms under control. In the past, I’ve puked in a public restroom tampon disposal. I’ve driven through a red light to get home in time. I once told my then-boyfriend), “I’m going to go to the bathroom in the street if I don’t find a restroom now.” And I recently told my roommates while apartment hunting, “I’m sorry, I’m miserable because I’ve had diarrhea all day.” Over the years, I’ve come to accept these embarrassing parts of my life. However, I often feel alone and frustrated that others don’t understand my struggles.

Feeling alone is a common battle for people with chronic illnesses. Having reliable friends and family is helpful but connecting with other #Crohnies is priceless. The Crohn’s & Colitis Foundation of America is an amazing organization that offers resources such as online support groups. Last summer, I joined one of their four week series of weekly chat sessions. It was basically that first time I had ever connected with people who either have Crohn’s Disease or have a loved one who does. Sharing experiences and learning about how others cope was an eye-opening experience.

Whenever I am introduced to someone who is newly diagnosed (whether it’s in person or online) I always tell them that it will get better.

The feels are real:

When you’re sick but you don’t know why.

When you’re diagnosed with an incurable disease.

When your peers compliment you on losing weight.

When you’re learning to deal with your symptoms.

When you feel completely alone.

When you realize as many as 700,000 Americans are affected with the disease.

When you find your support system.

When you realize that your symptoms can be manageable.

When you feel almost normal.

When you feel healthy.

Elizabeth Umbrino

Elizabeth Umbrino

Elizabeth grew up in Palisades, NY, just 16 miles from the George Washington Bridge. She’s lived in Brooklyn for the past three years but continues to wonder if she’s allowed to call herself a “New Yorker.” She holds an M.F.A. in Design and Technology from Parsons The New School for Design. Elizabeth enjoys project runway, puppies of Instagram, and Venmo descriptions. Tweet to her at @eumbrino.
Elizabeth Umbrino

Latest posts by Elizabeth Umbrino (see all)

  • I’m sorry to hear about that. You showed us a positive attitude while facing this incurable disease, which gives me power.

%d bloggers like this: