Colorado's Honored Hero

 

 

 Kate Honored Hero

 

My name is Kate and I am relatively new to my journey with Crohn’s disease. I am a junior at The Village and Pine Creek High Schools and my interests include dancing, business clubs, traveling, hanging with friends and family and spoiling my black lab named Mabel. I was diagnosed with Crohn’s disease in March of 2021 at the age of fifteen but had been sick for years prior. I was also diagnosed with hEDS (hybermobile Ehlers-Danlos syndrome) and POTS (postural orthostatic tachycardia). Much like other “crohnies”, my story has many twists and turns with disappointments and setbacks. There are even some silver linings.

For as long as I can remember, I have had health problems. Some days were better than others but most consisted of limitations and pain. My symptoms included digestive problems, sharp abdominal pain, bloating, and food sensitivities. Over the years there were plausible explanations for my health challenges. My parents were divorced which was stressful and required me to travel frequently, I had mono, food allergies, anemia as well as female problems. When an ovarian cyst was identified we had something to hang our hat on, however; my health issues did not dissipate after removal. During my early teen years, the pain started to extend to my joints with nausea and debilitating fatigue. Emotionally I was struggling with depression and anxiety. I began to withdraw from life. This was also during the middle of the Covid pandemic so I was already feeling isolated. In early 2021, a new and scary symptom presented. I would eat a few small bites of food and be full. It felt as though the food was stuck high on my chest and I couldn’t breathe. It was this new symptom and the fact that I lost 20lbs in six weeks and was experiencing severe brain fog that escalated a referral to a gastroenterologist at Children’s Hospital, Colorado Springs. From there I was quickly scheduled for scoping and the tests came back confirming Crohn’s disease. While I felt relief with finally having a diagnosis and treatment plan, I was scared and didn’t expect this road to be so windy. Early on my gastroenterologist, Dr. Falaiye, said “this is a marathon, not a sprint”; those words could not be more true.

I was admitted to the hospital the following day in early March for additional tests to understand broader damage from having inflammation throughout my digestive system. I now had context for my multiple cold sores and symptoms like reflux that I thought was normal. Swallowing a camera brought us many laughs! With the help of my parents, I decided to try enteral nutrition and steroids designed to target inflammation in your digestive track in the short term until insurance approved biologic treatment. My life literally changed overnight. I had a chronic illness, feeding tube, was no longer able to eat and started many new medications. Did I mention that I’m a foodie? I love socializing over meals, trying new restaurants and experimenting with recipes especially baking. This was and still is hard. Most of my friends and family rallied around me and I grew a fondness for banana popsicles. I was introduced to these popsicles months prior from an ER dr that treated me a few times before being diagnosed with Crohn’s. For three months, the only thing I ate was banana popsicles (along with my ng tube feedings). I also started prednisone. That was (not) fun. The light in my life became pretty dim with having a feeding tube on my face, not being able to eat, weight gain and raging hormones.

The next few months are a blur. I was trying to continue to live a normal teenage life when my health was far from normal. Experimenting with different medications to manage symptoms and their side effects was horrific, I was meeting several hours a week with various medical specialists, I was exploring diets, catching up and finishing my sophomore year of high school, continuing to dance when clearly I did not have the stamina, and trying to keep up with a busy social life. In short, I crashed and burned. My illness got worse and I was in more pain physically and emotionally than ever.

I am a recovering Type A personality as my mother likes to say. I like to be independent and have control. My mom is similar; I guess the apple didn’t fall from the tree (lol). We started researching CCF and decided to participate in the Take Steps Denver in June 2021. This event was something tangible where I could raise awareness, fundraise and meet others like me. I could feel my attitude start to shift; I had purpose. My friends and family supported my team called Chronic but Iconic! My employer at the time, Ziggi’s Coffee, sponsored the team. Two different news stations aired my story and I met some really cool people in the community that are on the other side of Crohn’s and in remission. I felt hope for the first time and raised about $1600 towards a cure!

Since the summer of 2021, a lot has happened. On a personal level, I had to mature and make some hard decisions. I went back to high school first semester and missed over 200 class periods due to Crohn’s and related complications. A robust 504 plan along with flexible and kind teachers helped me manage my workload at home and finish the semester successfully with a 3.75 GPA. However, this wasn’t sustainable so I made the difficult decision to change high schools this semester to a hybrid program where attendance is not required. I have yet to attend school physically but still performing well. My course curriculum is self driven which allows me to pace myself in response to how I’m feeling. This schedule also provides flexibility for medical appointments. I have physical therapy three times a week and it’s so much easier to commit and see results when you have the time. Another difficult decision I made, although it took some prodding, was to step away from competitive dance. I have been dancing at Barbara Ellis Studio of Dance for 13 years and these people are my family. On most weeks I was dancing 15+ hours. This level of commitment was not sustainable or healthy given where I was in the disease process. In result, with the support of my dance family, I transitioned to recreational dance and started contributing to the studio in different ways like assisting with classes, helping dancers get ready during competitions, etc. I still struggle with this decision today yet I know it was the right one. Dance brought me happiness; it’s precise with discipline and it pushed me physically and emotionally especially when competing. I’ve had to change my view on dance and my expectations. I’m still a work in progress as it relates to dance, and that’s okay. My last difficult decision revolved around friendships. By in large most of my friends are supportive, willing to learn about my illnesses and give me grace. I was once the leader of the pack, always up and available for anything, and willing to put other people’s needs before my own. Chronic and painful illness with extreme fatigue changes you. I had to create boundaries with friends, learn to prioritize my needs, and say “no”. Some friends did not make the cut which left room for new friends. There are always silver linings if you are willing to look.

Today my Crohn’s is somewhat stable as I continue remicade-like infusions every six weeks (my mom, doctors, and the Children’s authorization team fought HARD for this coverage). Stability is hard when you have 3 different illnesses feeding off one another - it’s like whack a mole. I take 12 different medications and supplements totaling 25+ pills a day and I’m on intermittent ng feedings. I follow a strict gluten and dairy free diet and low FODMAP. When I choose to go off diet, I choose the consequence. I’m in PT regularly and attend school at The Village and Pine Creek. I’m on the executive board of DECA (business and marketing club) at Pine Creek which challenges me intellectually and keeps me connected to friends. I will soon be competing at DECA State. I dance about 10 hours a week and learning to shift my attitude towards doing my personal best and enjoying myself. I have the full support of my family and friends both near and far. As an example, my mom started getting me fun socks to wear each time I had a dr appointment. She would post pictures on social media to show off the socks and to create Crohn’s awareness. Before long, friends and family were sending me socks from all over the country; another silver lining. I have about 50 pair in my collection. Some of my favorites are “I’m kind of a big dill” (with pickle), “brave girl you can do hard things”, and “squeeze the day” (with lemons). I hope one day to make quilts with the socks to pass onto newly diagnosed patients.

The Foundation and specifically Take Steps are the cornerstone to create CC awareness, support patients and fundraise towards the development of new treatments and a cure. In a short time, CCF already holds a special place in our hearts. As a family we participated in Take Steps last year, attended The Fret fundraising gala, and made personal and medical connections. My mom is partnering with CCF in Denver to expand their presence in Colorado Springs. Children under the age of 18 are the fastest growing population to be diagnosed with Crohn’s and/or Ulcerative Colitis. We we need to rally and contribute to a cure as a community. I am excited and proud to have been chosen as a Honored Hero. The hope for a healthier tomorrow for all those impacted by Crohn’s or Colitis is why I Take Steps. Please visit my personal page by clicking here. 

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