Throughout high school, when I was sick, I was really sick. No one wants to talk about what they do in the bathroom in regards to “number two,” but after months of hiding how awful I had been feeling, I came clean to my doctors and family. I told them about the bloated, cramped and painful state my stomach seemed to be in constantly. I told them how I would wake up at night and rush to the bathroom, only to not go at all. I was constantly exhausted, hungry and dehydrated. On December 23, 2009, I got my diagnosis:
“Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.” -The Crohn’s & Colitis Foundation of America website
I’ve Googled this definition so many times I have it memorized. I’ve learned to become comfortable in hospitals. I’ve gotten really good at entertaining myself in doctor’s office waiting rooms, and I can hum along with the music when I’m put on hold on the phone with specialists at Boston Children’s Hospital.
After I received my diagnosis, I had to make adjustments to my daily routines. I never particularly liked going to monthly appointments, getting blood work checked or swallowing 19 pills a day to stay healthy, but I never hated those things either. Dealing with this disease was my life now, and I had to accept it.
Ulcerative colitis works in cycles of symptoms. When things are good, you feel fine. When I wasn’t feeling so well, I would go through months of intensified symptoms called flare-ups.
When I wasn’t flaring up, the only things that made me different from any other teenaged girl were my frequent sick days, growling stomach and avoidance of anything fried, spicy or pizza-related—foods I knew would make me feel sick.
When I was flaring up, things were different. I would dash to the bathroom up to two dozen times a day, doubled over in pain. I would wake up in the middle of the night to go some more. I would lose weight fast from not absorbing nutrients from any of my food, even though I was constantly starving. I would gain all the weight back and then some after being put on powerful drugs for months. These drugs, although they saved my life many times, also ruined it. They were supposed to support my body and stop it from attacking my large intestine, but the drugs didn’t come without side effects. They made my mind race, my heart palpitate, my appetite increase and my dreams become horrifying whenever they would allow me to get a decent night’s sleep.
So when I walked into my GI specialist’s office in November of 2012, I wasn’t expecting anything big. Just the routine check-up, an interview about my current state and maybe an increased medication dose to help me feel better, since I’d been feeling a flare-up coming on recently.
As it turns out, my medications weren’t working well enough to keep me healthy. This was the third time they’d failed, which in the past has meant hospitalizations and rounds of those powerful drugs that put my body into overdrive. I could feel tears welling up in my eyes at the idea of taking those drugs again.
This time, however, my doctor had a different idea. After flipping through my charts, files and medical records, he swiveled in his chair to face me and asked, “Have you ever contemplated surgery?”
Surgery?
The white linoleum room began to spin. My immediate reaction was no. Hell no. My doctor gave my mom some details about different procedures and approaches that surgeons used to completely remove the large intestine. I didn’t listen.
He explained it as a two-surgery process: one to remove the organ, and a few months later, a reattachment surgery to fit my small intestine to where my large one used to be. As it turns out, your large intestine isn’t a vital organ; you can live without it.
I had a hard time focusing on this, though. There was so much going through my head. I could feel a lump forming in my throat as the blood drained from my face. My heart was breaking as tears welled in my eyes. I had so much to say that I was rendered incapable of saying anything at all.
So I didn’t say anything for the rest of the appointment and the entire way home.
For me, surgery meant giving up my dream of being a success story. It seems stupid, but when you fight against adversity for so long, the idea of any type of success story or any story of overcoming is all you have to keep you going sometimes. I saw getting this curing surgery as quitting. After fighting against this disease for years, I wasn’t ready to just drop everything and quit. It seemed pathetic to me.
However, surgery also meant a cure. No more 19 pills a day. No more dashing to the bathroom when a certain food didn’t agree with my system. No more hospitalizations or blood work with sharp needles. The idea of a disease-free life was incredibly enticing, but getting there would undoubtedly put me through the weakest and most vulnerable time of my life.
It took a lot of late-night conversations with my parents, a lot of tears and a lot of hard questions for my doctors and mentors who had received the same surgery, but I decided to have the surgery. In a few months, I had a surgery date set: May 31, 2013, two weeks after the last final exam of my freshman year of college.
Oh, and I was completely terrified.
But it happened. I got the first stage of my surgery done in May. I was in the hospital for 10 days, and I recovered at home for another six weeks. I was in a lot of physical pain for a long time. I was weak, exhausted and at times discouraged. In January, I received phase two of my operation, which finished the process but made me weaker and put me through similar pain to the pain I felt back in May.
But the thing is, I don’t remember the pain. I don’t remember how boring my time in the hospital could be. I don’t remember my exhaustion. If I felt that pain again, I don’t think I’d recognize it.
What I do remember is everything I’ve learned from this experience.
I learned that I have an amazing group of friends and an incredible family. I received meaningful cards and endless phone calls and text messages of encouragement. I had many visitors who brightened up my dull hospital room as well as my day. Although most of my friends and family couldn’t relate to what I was going through, they certainly tried to understand and they gave me an ear or a shoulder to cry on when I needed them.
I’ve also learned that I’m much stronger than I ever thought I could be. Being constantly weak and in pain teaches you a lot about yourself. When the nurses aren’t in the room at night and you’re lying in bed with your own thoughts, you can either pick yourself up or beat yourself down. And I picked myself up. Twice.
Upon leaving the hospital after my most recent surgery in January, I promised I would start living my life more positively and happily. Before illness or surgery or long hospital stays, I took my health for granted. I took my support system for granted and I took opportunities and life in general for granted.
Chances are you probably don’t have a chronic illness and you’re sitting at your desktop wondering why I’m writing this. Well, I don’t want you to wait for a life-changing event (a surgery, a diagnosis, a big loss) to start living your life. It sounds corny, but you’re luckier than you think. If you’re unhappy with a situation, you have the power to fix it, or at least fix your attitude about it. Smile, breathe, be grateful and make the most out of everything. Be positive and confident, and good things will come your way.
These days, I have nothing holding me back. I’m confident, healthy and happier than I ever thought I could be. I celebrate the small things and take nothing for granted. Before surgery, I accepted this disease as the hand I was dealt in life; it wasn’t a negative attitude, but it wasn’t necessarily a positive one either. The most important and best decision I have ever made was getting the surgery. I put my body through the ringer in hopes of a better life, and I can say that I definitely have one now.
As a person who has dealt with bowel conditions for most of my life, I know that life can sometimes be, well, crappy. But life’s not about the crap we get handed to us, it’s about how we get through it.
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