Posted by ImproveCareNow™ on May 09, 2024
In a matter of days, Caitlyn went from being a full-time student athlete (following her dream of running at a D1 college) to being a full-time patient (diagnosed with IBD and severe visceral hyperalgesia). She went from balancing a rigorous training schedule and school, to managing doctors appointments, meds and nearly constant pain and fatigue. In the midst of this, she turned 21 and was pushed to find an adult care provider who would take her complicated case. She wanted someone to fight for her, who took time to understand how her illness was affecting her life and mental health, who recognized how hard she was fighting and who would support and advocate for her. In time, she found those people. With new treatments, her health began to turn around and she was able to return to school. However, her collegiate running career had come to an end. "I found myself grieving for my past life. For a body that I no longer had."
Once known affectionately as the "runner girl," who was Caitlyn without running? It turns out she is many things! Read her story to find out.
Be inspired by Caitlyn's #IgniteTalk 🔥
If you asked me who I was before I was diagnosed with IBD, I would’ve told you that I was a runner.
For most of my life, I have been known as the “runner girl”. I was that one kid who was obsessed with the timed mile in gym and was unnecessarily competitive with the boys in my class during the pacer. In middle school, I fell in love with long-distance running and joined my school’s cross-country and track teams.
By high school, my entire life revolved around running. I started getting better and eventually set my goals higher. I wanted to run in college. And not just in college, I wanted to run for a Division 1 team.
I devoted my life to achieving this goal. I practiced after school for hours each day. I was in the weight room and cross training a few times a week. I sacrificed time with friends for training and traveling for meets. All of it for the goal of earning a spot on a D1 team. Competing at this level would mean having a part-time job as an athlete. Any time that I was not in class, would be spent in the weight room, at practice, or working with athletic trainers, coaches, or dieticians. But I loved running and wanted this more than anything. And by my senior year of high school, I had earned a scholarship and committed to a D1 school to run cross country and track. It was my dream come true.
The summer before my freshman year of college, I started experiencing intense abdominal pain with eating, fatigue, nausea, and joint pain. Within a few weeks, I was no longer able to eat enough to keep up with training and was quickly losing weight. By the time I got to campus in the fall, my symptoms had gotten out of hand, and it was clear that something was wrong. I was too dizzy to walk on campus and had trouble eating much of anything. Only a few weeks into the semester, I was forced to go back home.
Not long after coming home, my health began to rapidly decline.
Eating to fuel myself for a workout turned into eating for survival. I swapped protein shakes for Ensures. Some days drinking 4 or 5 a day to keep myself going. I traded hanging out with friends for sitting in doctor’s offices with my Mom. The aches from a hard workout were replaced with debilitating abdominal pain that now accompanied eating. Daily workouts turned into daily walks down my street; my body sometimes too weak to go further than a few houses.
I spent most days in bed and had little strength to do much else. I watched from afar as my friends were starting their lives; I felt left behind. Like everyone was moving forward and I was stuck. In a matter of months, it felt like my entire life had been ripped from me.
After several months of fighting for answers, I was finally diagnosed with Crohn’s disease.
Unfortunately, by the time I was diagnosed, my abdominal pain had escalated to unbearable levels, and I was no longer tolerating foods. Even drinking left me with indescribable pain. I was quickly admitted and had an ND tube placed to start exclusive enteral nutrition. I spent the next 7 months on EEN, slowly allowing my gut to heal and to reintroduce foods.
Slowly, my health began to stabilize, and I started gaining back some independence. Though I still had pain and fatigue, I was in a much better place, and I was pretty confident that I could put this all behind me and get back to school and running.
I was so eager to get back to a “normal life”. I wanted nothing more than for my life to go back to the way it was before I had gotten sick.
By the time my sophomore year came around, I was well enough to return to campus as well as to start running with my team. It took months of training and time to get myself back in shape enough to even keep up with my teammates, but I was driven.
I was so excited to fill my life with running again.
While I was technically medically stable, my health was still a daily challenge. Sure, I was back at school and living on my own, training with my teammates, and going to classes. But my lingering abdominal pain was still impacting my nutrition, and I was often chugging several Ensures a day to keep up with the energy demands of training. I found myself canceling on friends because I was too fatigued. Some days my pain was too intense to train. So, I was surviving, but I wasn’t certainly living.
Despite the challenges, I still held onto hope that I could make my dream of collegiate running work. By the start of my junior year, it finally felt like things were falling back into place. I was training more consistently and at a higher level than ever before.
But as we know, the only thing predictable about chronic illnesses is that they are unpredictable. That winter, my health took a turn for the worse.
Out of the blue, my abdominal pain had increased drastically, and I was rapidly losing weight. At this point, our team doctor made note of my plummeting health and pulled me into an appointment. He said he made a judgment call that it was no longer safe for me to continue with the team and that I needed to go home immediately to be admitted for more care.
I could quite literally feel my heart shatter at that moment. Although this had been discussed before, this was the first time he had ever put his foot down. I felt like I had failed everybody.
My coaches.
My parents.
Myself.
To say I was devastated would be an understatement.
The one thing I had been working for all these years. The reason I would push myself to eat more or to chug another Ensure even when my abdominal pain was so bad I was nearly keeling over. “It’s all fuel. The pain will be worth it”, I would tell myself again and again. All those years of trying to whip myself back into shape, pushing my body to its limits. All those late nights spent sitting alone at the dining room table just trying to eat a little bit more. Every practice that I went to despite being in so much pain.
It was all a waste.
Everything I had fought so hard to get back was disappearing right before my eyes.
I came home the next day and was immediately admitted. On top of my IBD, I was also dealing with severe visceral hyperalgesia, which causes hypersensitivity to the internal organs. This added a whole new level of complexity to my treatment. At this point my pain had intensified so much that I completely lost my ability to eat and drink again and wasn’t even tolerating tube feeds. I was put on TPN and started on continuous ketamine infusions. Over the next 6 months, I spent 100+ days admitted. With my visceral hyperalgesia complicating everything, we were treading in unknown waters, and nobody seemed to have a great handle on how to help me.
In a matter of days, my life went from full-time student-athlete to full-time patient.
When I wasn’t admitted, I spent my time in appointments, messaging doctors, managing my TPN, and taking my meds. My days were spent in bed; my pain often too severe to do anything else than rest. Bit by bit I was losing parts of myself until I was nothing more than a shell of who I used to be.
My entire life now revolved around my health. It felt like somebody had stripped me of everything that I was, and the only thing left behind was this festering illness.
I spent the rest of my junior year of college at home, desperately searching for any form of treatment that would provide even an ounce of relief. I was in and out of the hospital and bounced around from provider to provider. At this point, I had exhausted most traditional treatment options, and most providers didn’t know what to do with me.
The worst part was that I wasn’t Caitlyn anymore. My identity had been reduced to a set of symptoms and lab results. Nobody really cared about how it was impacting my life, as long as they kept my labs in check.
To complicate matters further, I had recently turned 21 and was being pushed into adult care. But no adult providers would take up my case. I was denied many times because I was on TPN and told that they could not manage it and that a primary care doctor needed to manage it. Only to be told by several primary care doctors that they either wouldn’t or couldn’t manage TPN. Nobody on either side (pediatric or adult) seemed to understand my difficulties of transitioning and left me to battle it out on my own. I wasn’t aware before I started this process how hard it would be to find providers to take on my care.
So now I was no longer a runner. I wasn’t a college student. I didn’t have a place in the pediatric world. But I also wasn’t accepted into the adult world. I had fallen through the gaps and support wasn’t anywhere to be found. I felt deserted by the medical system during the worst flare of my life and was just expected to figure it out on my own. What I really needed was someone to fight for me. Because that’s all I was looking for. I wasn’t looking for the perfect provider. I was looking for someone who didn’t make me feel like a burden for being a complicated case. Someone who saw me outside of symptoms and test results.
I just wanted someone to fight for me. To fight for a better life for me. I had been fighting for so long by myself and I was exhausted.
It shouldn’t have taken as long as it did to find providers who were willing to fight for me, but I eventually found some. One being my pain management doctor. And though he didn’t have a perfect solution, he didn’t turn me away or make me feel like a burden either. He was the first provider to check in on how my symptoms were impacting my daily life and mental health. And when I told him everything, he didn’t brush past it. Instead, he told me he could see how hard I was fighting. Such a simple sentence and yet it changed so much. I no longer felt like I was fighting this all alone. Someone else cared and saw how much this illness had taken from me.
It was thanks to his advocacy that I was able to have a dorsal root ganglion stimulator placed in August. Now, this speech is way too short to fully discuss my extensive medical history from the months before I had my stimulator placed, but safe to say, they were the worst months of my life. My pain was constant and unbearable. It was endless admissions, procedures, and testing. Complications from malnutrition and TPN. I developed several blood clots and had sepsis 3 times.
Thankfully, the stimulator was like flipping a switch. It was life-changing and allowed me to start turning a corner. After almost 9 months on TPN, I was able to start eating some again and I even returned to school this past winter to finish out my senior year of college.
While my health has improved significantly, it was strange to return to school. The last time I was on campus, I was a collegiate athlete. And now I was not. I was not just losing training. I had lost the majority of my friends too. I had lost my competitive outlet. And most of all, leaving the team meant leaving behind my dream of collegiate running. Those first few weeks back on campus felt wrong. Honestly, even months later I still feel a little strange. So many years of my life were devoted to one thing. I didn’t know who I was outside of running. And more than that, I was finding myself after my health had taken up so much space in my life.
I found myself grieving for my past life. For a body that I no longer had.
For years, I had been desperately trying to cling to a life that I could no longer sustainably live. And that was a tough pill to swallow. I tried so hard to make collegiate running work, but the cost was my health. To put it in perspective, I probably chugged over 3200 Ensures during those years of training. And yes, I did do the math on that. Looking back on it, it wasn’t sustainable for me to keep training at that level when I was still having so much trouble with pain and eating, but I was so caught up in making this dream happen and holding onto this identity.
I think it will always sting a bit that I couldn’t make that dream come true.
But I’m finding that though my life may look different than I expected, that does not mean that it is any less worthy of living. I have started to find new things that give me purpose and a sense of identity. I’m taking this as a blank slate and an opportunity to explore myself. I’m trying out hobbies that I never would have found before and meeting people I never would have met. I have found so much comfort and stability from joining the PAC. It has been a source of community but has also given me a passion for advocacy. In the moments where I have felt most lost and alone, they have been my rock. I am finding providers who care for me outside of my health and who are willing to fight for me.
If you take one thing from my talk today, I hope my fellow patients walk away knowing that it is ok if your illness changes you. It’s ok if your life looks different than how you wanted or different from your friends’ lives. You can grieve what you lost and acknowledge that there is still so much out there for you.
We are more than just a set of symptoms, and everyone deserves to have providers who see that. Who fight for better lives for their patients. Who don’t turn a blind eye when their patient isn’t a straightforward case. Someone who helps their patients through transitions and stands by them in their toughest moments and lifts them up.
So, although I am still finding myself again, if you were to ask me today who I am, I would tell you that I am resilient and a fighter. That I am an advocate and a student. A nature lover and a reader. But most of all, I am so much more than just a runner.
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