Imagine waking up in the middle of the night at 16 years of age, and feeling like someone just stabbed you near your right hipbone, but there’s no blood. Is this a nightmare? You run to your parents’ room and have them take you to the Emergency Room. Pain, confusion and utter exhaustion are just a few words to describe my current state.
After multiple invasive tests and a week in the hospital, you find out you have Crohn’s Disease. We hadn’t heard much about the disease, except a distant, elderly uncle had it. Perplexed and terrified, I asked, “Am I going to die from Crohn’s Disease?” Calmly and empathically, my pediatric gastroenterologist said, “You are not going to die FROM Crohn’s Disease, but you will die WITH Crohn’s Disease.” I didn’t understand because I felt fine two days before. All I could comprehend was that I had to go the bathroom 24 times a day. I thought I had a “fast metabolism.” After the diagnosis, I worried I was going to poop in my pants in front of my entire high school, or worse yet, in my cheerleading uniform on the football field. They gave me a giant pill box, the size of a Nokia cell phone, to organize all my daily medication. It felt like a bad joke!
I was weak, frail and lost nearly 20 pounds from my five-foot-seven frame. Just like the Public Service Announcements say, “Are you living a life of what-if?” Yes, I am living a life of “what-if.” What if someone sees me, or hears me in the bathroom OR tells someone what they witnessed in the high school bathroom.
Some well-meaning people asked my mother if I had an eating disorder because I was going to the bathroom every time I would eat. That was a horrible rumor to start about a girl who was just “digesting” (pun intended) the fact that she has a lifelong disease. Crohn’s is not an eating disorder. When you eat, it feels like your insides are on fire. Lucky for me, my close friends and family were very understanding. One of my girlfriends decided she would be my “Potty Pal” because she wanted to make sure I was OK every time I went. For that, I will forever be grateful.
It took many years, medications, professionals, and even an interrupted study abroad trip to Spain, before I was finally able to get a grasp on things. You do not realize how much your world revolves around eating and drinking. When it hurts, you just want to lie in a fetal position and cry.
One of our dear family friends has celiac disease. She took herself off wheat and dairy and suggested I do the same. At first it was hard, but now, it’s my lifestyle, and my last two colonoscopies have been clear. Today, I feel much healthier and mentor many people who go through digestive issues. I know at any moment I could have a “flare-up” and be hospitalized or miss work for a bit. And, I never forget I am seven times more likely than the average person to get colon cancer in my lifetime.
However, I take care of myself and choose to keep a very positive attitude. Whenever I am feeling down I read my Gluten is my Bitch or Everybody Poops coffee table books to lift my spirits. Both were given to me over the years from my supportive family. I find it best to have a good sense of humor about this “shitty” disease. I do not know what I would do if I did not have that network of dear friends, parents, sister and husband and in-laws. I hope to pay it forward so that if anyone ever experiences this, they know they too can have a Potty Pal to rely on; at least virtually that is!
Caroline lives in San Antonio, Texas with her husband Luis and their adorable 5-pound Maltese named Mia. She enjoys traveling, reading, cooking, and spending time with friends and family. While her diagnosis with Crohn’s Disease was life changing at sixteen, she is happy to talk to anyone about digestive issues and the confusion that can come with it. Hopefully she will serve as a breath of fresh air with her positive attitude and nerdy jokes to those around her.
Caroline lives with her husband, Luis, her daughter Emilia and their Maltese, Mia. They are expecting their second child, in April 2021.