Marathon #53 – 26.2 for Kenzie
My IBD diagnosis came at age 11, after I had spent 3 years battling seizures that I was lucky enough to grow out of. So, I did know the sick world, but the IBD world that was new to me. About a year before my diagnosis, I began having trouble eating. I remember vividly to this day, sitting at our camp in Maine trying to eat Mac and Cheese and going absolutely sheet white in 80 degree weather. As the months continued my symptoms increased and I slowly lost more and more weight. Around December I started to attend the snowboard club on Friday nights that I was very fond of, we would ride on the mountain, stop in for something to eat, and then keep going. The bathroom stops became more frequent and the snowboarding became much less. When I returned home after snowboard club I would sleep for an hour if I was lucky and then wake up and be up on and off puking up for hours what I had ate that night. Doctors started to become more frequent in my day-to-day life. They believed I had acid reflux, but fast forward to March when I had my first colonoscopy and sure enough, I had IBD.
My diagnosis was delivered after months of tests and an MRI where I spent hours walking up and down the stairs just to get the Barium to move through. For those of you who know what Barium is you know that it is not as fun as drinking margaritas on the beach with your friends. As an 11-year-old, a week before their 12 birthday, you are not really sure of what to make of this news. The only thing that hit me was, “Wow, I finally have a name to my symptoms” and “Wow, there is no cure.”
As we began to try and remedy my flares, I got tall order of prednisone and about 18 pills a day from the doctor. That is a great combination if you are trying to add weight, but just to your cheeks. This super fun regiment continued for at least a couple of years, my symptoms at times seemed to stay at bay but never did I go into remission. I missed a lot of school and continued to ponder how do I grow up so fast, but still stay a kid.
Shortly after we decided the pills were not doing the full job, I started Remicade. I remember how scary that was as a small child who knew more about her blood counts than her algebra at school. I was anxious, I was sad, and I was scared, but all I wanted was to feel better. I started my infusions and they did go fairly well for a couple years, although I did never make it into remission. I continued on a Remicade and Humira switch into high school. I was sick, missing school, but still somehow kept honor roll and stayed a three-season athlete. Every day I would give anything to feel some sense of normalcy. I excelled in school, in sports, and despite my absences I even had a social life. I can remember sitting at the lunch table listening to the girls talk about their latest crush and had to remind myself I couldn’t be in love with Imodium, even though it was my biggest lifesaver. It was as if I was a secret agent living a double life, my peers did know, but not all of them and I liked it that way. Until I began missing more days of school than days that I actually went to school. I could barely eat and sometimes could barely walk because my pain was so crippling. The bathroom became my best friend and there was really no way around it, so I begged for surgery.
In the spring of 2011, I had my first major surgery, 2 feet of my small intestine removed along with my appendix. So I really got a free two for one. At 16 years old I never thought I would be in the position. Recovery was tough, just getting out of bed felt like an immense task for months afterwards, but it was the most rewarding thing I had ever done. For the first time in 5 years, I was pain free and I felt like I could fly. I was able to attend school, and live in some sense of normalcy for about a year. I did not know it at the time but my anxiety was extreme, but I always believed my anxiety symptoms were related to my Crohn’s, when in reality my anxiety was causing a bulk of my Crohn’s symptoms. I did not know how to be okay after having been chronically ill for the majority of my life.
As I entered 11th grade, I started to think about things that apparently the “normal” kids thought about, like prom and parties and of course prom dates. As I sadly realized again, I could not bring Imodium as a date to prom, I started falling into what felt like a normal social routine. Attending more school, more sporting events, and more parties. I was missing three days every other week of school, because I had been diagnosed with a stricture. A stricture is the narrowing of the intestine and to repair it I needed a colonoscopy every two weeks in which they did a minor surgery to stretch my intestine, with a balloon. It wasn’t even a fun balloon and they didn’t even ask my what color I wanted, which I thought was pretty rude.
These procedures went on for 12 weeks with a total of 6 colonoscopies, I felt mad but happy because I was still healthier than I had ever been. I did not know whether to feel grateful or angry, I was extremely confused. Life kept moving as it always does, that is something I have always worked hard on practicing. Life, does not wait for you no matter the circumstances, so figure it out and catch up. That is pretty harsh logic for a 17-year-old but hey it worked out.
In the midst of trying Cimzia, yet another new drug, I began to become ill again. I was living in the bathroom. Five trips a day turned into 30 and I could barely leave the house. I had a bathroom key to every practice field and if there was no bathroom, I would be horrified to attend any game. My social life was declining and so was my mental health, as you all know it is hard to keep a positive attitude when for so long you have been wondering where the light at the end of the tunnel actually is. That summer, the one going into my senior year of high school my parents told me I was going to what I like to call Crohn’s Camp, which is put on by The Foundation and is actually called Camp Oasis. My first thought was this disease is awful, why the hell would I go to a camp where everyone has the same illness as me. What if there are not enough bathrooms?
To my displeasure and overwhelming anxiety, I did attend camp. It was my first and last year as a camper, as going into senior year is the last summer you are eligible. If I could thank my parents for one thing to this day, it would be this. Camp absolutely changed my life, I met other people struggling while also thriving with the same illness I had. I saw my peers enjoying life even though they were enduring the same pressures and sadness I was. I felt like I was home, and that is because I was. I found a second home, and a second family at Camp. I met the nurse who absolutely turned my world upside down. She was beautiful, active, powerful, and what felt like magical and she lived with an ostomy bag. She gave me the confidence to 7 months later make the hardest decision I have ever had to make in my life, and that was to go into my second major surgery and come out with an ostomy.
In March 2013, I got my life back. I did not know it then, but now I can tell you that although the hardest decision I have ever made it is by far the best. I spent my senior year adjusting to my ostomy and decided to commute my first year of college. Somehow through all of this still graduating high school on time. As I grew healthier, I felt like I wanted to make bolder choices. I was so scared and so nervous but I knew the only way to move on was to dive into the rest of my life head first. I applied to school in Maine, and that fall moved two states away, all by myself. I was lonely, scared, and I had no idea what to expect.
It was not easy, but I started to snowboard again, I was both literally and figuratively standing on my own two feet. I met people who are some of my best friends in the world now, I started a new life, and I finally felt like I knew what living was like. To say that there were no struggles with my ostomy during this time would be a bold face lie. I spent nights in the hospital dehydrated, in pain, and sometimes just so tired. Science in college did teach me though, beer is not good for dehydration so I am working on that.
My life, the life I finally had, was better. In the summer of 2015, I was finally asked back to be a counselor at the camp that had given me a start to a new beginning. I was thrilled, what I learned was, even though I though Camp Oasis could not get any better, it did. My campers are the strongest, most resilient, kind, and compassionate people I have ever had the privilege to know. You know, you go through so many hardships and wonder, how can this be fair and why me?
I can tell you, that it does get better and in some odd way it is fair. You realize your fight is worth something when you meet a camper who comes back the next summer and holds you in the tightest hug and tells you they are so happy to be home. When you are able to connect with others who also have ostomies and be there support system. When you see you parents so proud of you for walking across the stage at graduation. Your fight got you there. The endless wins at uphill battles, and you finally made it to the top of the mountain.
It has been nine years since I got my life back. I have attended college, attended brew school, started hiking, summited the Grand Canyon, started snowboarding again, met the love of my life, and work a physical job every day. The hiking, snowboarding, and especially my everyday work were all things I was told at one point I may not do again. I am happy to say, the people who told me that were BIG wrong. You can do whatever you put your mind to and I am just lucky to be a voice for those who may not feel like have one I have seen parts of the world I have never thought I would see. Ireland, Iceland, Portugal, Alaska, Spain, Arizona, and Morocco just to name a few. All this with what used to be a severe chronic illness and could be again. All with an ostomy that was the hardest decision I have made; with the best results I have received. All with the two feet I feel absolutely blessed to wake up and move around the world with. Most importantly I have done this with all the love, appreciation, and gratitude. The world does not stop moving, only you stop moving. It does get better, it will get better, and you will be better. Life is beautiful and these tough times make the simple times feel even more incredible. This is my story and thank you so much for taking the time to read and share it.
Marathon 53 – Recap