Tomorrow is the most important day of my life. Not my birthday, not the day I graduated college, not even the day we got Finn (although, that comes pretty close). February 24th is a day I will always celebrate for the rest of my life. Because it was the beginning of the rest of my life; a new life that I’m more appreciative of, that I have more perspective on. I can thank a LOT of people for helping me get to that day, but the one person that I will always think of on this day is Dr. Strong. My colorectal surgeon and the person that saved my life. I wanted to write him a letter 2 years after all of the trials, the ups, the downs, the highs, the lows of my jpouch. From one of his patients that is so incredibly appreciative of his honesty, his brashness and his true passion for the art that he does.
Dear Dr. Strong,
When I met you, it was the end of June. It was early summer and I had spent the past year and a half in denial. I was in denial about a lot of things up until the moment you walked into the examination room at the Cleveland Clinic.
Before I met you, before I was even diagnosed with ulcerative colitis and my life was taken from me, I was a sassy, bossy, silly, smart, fun-loving, outgoing, vain, short, blonde dynamo who had a fierce passion for living life how I wanted. I really never let anyone tell me how, when or why to do anything. I was always the one in charge. Being bossy came naturally to me, which I know you found out soon enough.
I had never heard of ulcerative colitis, Crohn’s Disease and had zero understanding of even what a small intestine or colon did in my body. I rarely thought about others and I spent my days shopping, going to lunch, texting and sleeping, and spent my nights bartending and going out with friends without a single care in the world.
I never knew what it meant to be really sick. Sure, I had seen friends and people from college or peers be diagnosed with some kind of chronic illness and that was very sad to me, I felt sad for them. But I didn’t know what that meant. I never thought about what that would be like if it were me. What it would do to my family, what it would do to my friends, what it would do to me. I offered condolences, prayers and moved on with my days.
Until I returned from a spur of the moment vacation where I contracted 2 different types of parasites that went undiagnosed for 6 months. Then all of a sudden it was me who people were offering condolences to. I didn’t understand what was going on with my body. I wanted to run away from myself.
I began rapidly losing weight, I was in so much pain all of the time and no one understood. I felt like I was telling people what was wrong, but they weren’t really listening. It was like being in a room of a million people, screaming at the top of my lungs and no one even second glancing.
Suddenly, I was in the hospital. They had caught the parasites, they had given me blood transfusions, I had to stay in the hospital for just over a week. But all of that still had no meaning to me until my GI doctor looked at me after reading my scope results with the saddest face I had ever seen on a man I barely knew.
He looked at me and told me that I had the worst case of ulcerative colitis he had seen in 25 years.
At that moment I was unsure what ulcerative colitis really was. There was talk of me having it and I was misdiagnosed and re-diagnosed what seemed like 100 times.
Now it was certain and there was no mistaking. My entire colon was full of ulcers.
“But there is hope.” He told me while rustling through papers with numbers and diagrams and pictures of my red colon.
“You will never have to have your colon out. We will fix this. We will try intensive therapy. We will do what we need to do.”
He patted me on the shoulder and walked out of my hospital room.
I broke down and cried. I cried because I knew the life that I was so used to was over.
My new life consisted of: doctor appointments, week long hospital stays, Picc lines, blood transfusions, chemotherapy, Remicade, iron infusions, TPN, in-home nursing, Humira, pain medicine, steroids, weight loss, nausea medicine, anxiety medicine, IV’s, needles.
It also came with: starvation, tears, pain, suffering, loss of friendships. It caused my family so much more pain than what I probably felt physically.
The worst symptom of ulcerative colitis: uncertainty.
My mom told me about our very first appointment when I was getting ready to get into the bathtub a week before the actual date.
“It will all be over soon,” she said while folding towels.
I stood there, my naked body unrecognizable to her and myself. Swollen from steroids and being on copious amounts of TPN for weeks.
I gave her a blank stare and sat in the hot water.
That uncertainty came to a stop the day I met you. I had just found out that my bowel was at risk of perforation from my dad reading my blood work the night before. I could lose my life.
The day of our appointment was a blur until you walked in the room. You sat down at your computer next to me. You started asking me questions.
“Why are you here?” “Why are you considering surgery,” you paused.
“Oh, I see,” you said as you closed the packet of papers.
“What do you like to do during the day and at night right now,” you asked.
I stopped and wondered to myself, “Is this a trick question? Is he serious?”
“Well, I spend my days in excruciating pain. I wake up and I take a percocet, I go to the bathroom over 65 times and it’s complete blood. my dad gives me phennergan in my picc line because I’m so nauseated. I take naps, I take baths, I watch tv,” I responded.
“And at night?”
“At night I continue my routine of going to the bathroom over 30 more times while dragging a 5 pound bag of TPN across my bedroom floor.”
“Are you having night sweats,” you asked.
“Yes. I’m waking up in a pool of my own sweat every single night,” I responded.
“You have three days until I’m taking your colon out. I will be taking your colon out on Monday at noon,” you said with no emotion.
Everything went blank. The room went black. My mom and dad were sitting in the corner but I couldn’t see them anymore. I couldn’t see anything. I had tunnel vision and I felt like I wanted to collapse.
I became angry. I started slamming my fists on the examination bed.
You walked out of the room.
My dad looked at me in a way I’ll never forget and he said something to me that I will also never forget. “Brooke, stop. You are going to do this. You are going to sit here and you are going to learn how to take care of your ostomy. You cannot live like this anymore. You have got to stop.”
So, I did.
3 days later I woke up with an ostomy and I felt better than I had in 2 years.
The next 10 months were a learning curve. I learned about my new body, I appreciated new things. I started an online magazine to help people suffering like I was. I met friends who changed my whole perspective. I helped people, I went to therapy, I mourned. I cried, I threw clothes across the floor, I wrote, I ran, I went out with friends, I ate food again, I was in love.
I was living.
Then, February 23rd, 2014 came. The night I had been waiting for for what seemed like forever. The night before I was going to get my life back. No more surgeries, no more hospital stays, no more medication, it was all going to be over.
My last surgery was the only one I cried before.
They wheeled me into the operating room and you asked me why I was crying. You laughed because I had always been so brave.
But I was so scared. I don’t know what I was afraid of, though. Afraid of what my life was going to mean without the crutch of being sick?
Here I am, February 23, 2016. 2 years later. I can tell you that my life is more full than it ever has been. I wake up, I go to work, I go out with friends, I eat good food, I laugh with my family, I hug and kiss my dog.
I wake up every single day with a thankfulness that is embedded into my soul. A thankfulness to many, many people, but one of them is you. You looked at me and you read my misery. You knew that I longed to be that bossy, sassy, silly girl again.
Today I am bossier than ever. And I do it without going to the bathroom 90 times. I do it without the fear of being in pain. I’m sassy and I make people laugh because I’m so open. I’m blessed with those abilities because I am blessed with a jpouch.
There are no words that I could possibly think of that could equate to how much I want to thank you. Thank you for being harsh in the times when I was in denial. Thank you for laughing in moments when I would talk about ridiculous symptoms.
Thank you most of all for understanding that I had a life to live and for giving it back to me.
I think about you all the time. I’m thinking about you especially today and tomorrow. Your presence in my life means so much to myself and my family.
I look at my stomach and the beautiful scars that lay across it and I think about how I’m standing today because of you.
Thank you, Dr. Strong. I am now stronger because of you.
With so much love and gratitude,