Honorees
Take Steps Honorees understand first-hand how difficult — and empowering — it can be to live with Crohn’s disease or ulcerative colitis. Honored Heroes share their stories to let other patients know they are not alone on their journeys — because no one should face the challenges and uncertainty of inflammatory bowel disease (IBD) in isolation. Through their stories, Honorees raise awareness of these diseases, raise funds in support of the Foundation’s mission, and inspire hope in those living with IBD.
Pediatric Patient Honored Hero: Evelyn Hartless
IBD sucks.
I can’t do all the things a normal high schooler can.
There are so many things I’m interested in but I just don’t have the energy for.
Since 2010, when I was only 3, my health has been in a downward spiral. Three years of unhelpful doctors later, I was finally diagnosed with Crohn’s. I was a tiny, sick elementary schooler who missed more school than I attended. I only have scattered memories of the time, and many are of being sick. I was home for weeks at a time before finally we were making strides toward health. And even that wasn’t before I had a kidney stone as a 7 year old. I'm lucky that was the only time I’ve been hospitalized, because I was able to stay home instead of exhausting myself even more.
Next, let’s talk about meds. Before I learned to swallow pills, I took them in applesauce. I hate applesauce now. I used to throw up when taking Methotrexate in 5-tiny-pills-form, so I tried switching to injections, and we ended up using a heat pack that smelled like lavender. I hate lavender now. For a while, because Methotrexate and pizza night were on the same day, I associated pizza with throwing up. That one I’ve gotten over, though, because pizza is just too good.
After many new medicines, primarily Remicade, many MREs, a few scopes, and switching to a primary GI who practices 8 hours and four states away from where I live, I was finally in an OK place. As of, like, last year. But not right now, because the healing of Crohn's-related inflammation has caused my colon to be too long. I can laugh now but when it was first discovered about a month ago I was a mix of relieved and scared. I finally knew what was wrong but what would happen now? Luckily it’s just a new medicine, but insurance is greedy so it’s been a battle to get it filled.
And sadly that’s not the end of it because IBD has a habit of causing other health-related issues. I’ve had eye problems, skin problems, kidney problems, and now IBS because of the long colon. And it causes symptoms like chronic fatigue, which is a huge struggle for me right now. Not to mention that medicines protecting my body from Crohn’s like Remicade, also make a simple cold keep me out of school for almost a week.
But I think that’s enough about my health struggle, so let’s go back to the interests I don’t always have energy for. Because even with IBD, I do my best to live a full life. I’m the captain of my school’s color guard team and on the archery team. I’m taking an advanced art class and scrambling to finish my portfolio on time. I’m planning to take a computer science class next year and this summer I’m going to Carnegie Mellon for a video game development program with a focus on creating music for games. I plan to be in the school band all 4 years of high school. And this summer, I’ll be an LIT at Camp Oasis.
Camp Oasis is a week-long camp exclusively for kids with IBD, and I’ve been going every year since I was diagnosed. It’s amazing to have a space where everyone understands what you’re going through, especially when IBD is an invisible disease and the world around you doesn’t seem to know or care. I’ve gone for so many years that half of my t-shirts are Camp Oasis or Take Steps, and I’m even wearing a Camp hoodie as I write this.
And supporting these memories at Camp Oasis is one of the places donation money will go. It also goes to research to help scientists learn about how IBD works and better ways to combat it. Not everyone is in a safe place with their disease, and many people don’t know what tomorrow will hold for their health. By donating, you help them reach remission and live life like any other healthy person.
Thank you so much for taking the time to read my story and considering a donation <3
Adult Patient Honored Hero: Kate Cressey
My name is Kate Cressey, and I am 23 years old living in Arlington, Virginia. I am a recent graduate of Stanford University, where I majored in Psychology, minored in Comparative Studies in Race and Ethnicity (CSRE) and Spanish, and played on the softball team. I am newer to the Crohn’s & Colitis Foundation because my diagnosis was pretty recent, but I am looking forward to becoming very involved with the organization and being an active member of the community!
I was diagnosed with Crohn’s disease in December of 2021, about a month after I turned 22 years old. I first noticed something was off in the summer of 2021 when I had become noticeably constipated to the point of needing to visit the doctor. At the time I had thought nothing of it and was prescribed medication by the doctors and sent on my way. However, when I went back to school in September for senior year, I noticed blood in my stool. While it was very minor, it was extremely alarming, and I contacted my doctors right away to figure out what was wrong. It was very difficult to get a GI appointment and I didn’t get to see my primary care physician until I was back home for Thanksgiving break. After conducting a few tests, the doctors reassured me that nothing was wrong, but acknowledged the possibility of needing a colonoscopy. As the months continued the bleeding only got worse, and it wasn’t until December when I came home for winter break that I got a colonoscopy and was diagnosed with Crohn’s disease. At this point I was constantly lightheaded and dizzy, was bleeding consistently, and had begun to experience pain when eating certain foods. Doctors prescribed me a bunch of medications and when I returned to school in January, I completed some blood tests and was diagnosed with anemia and several vitamin deficiencies. At this point I was taking nearly 15 pills a day, but was able to carry on with my sport, school, and social life.
As June came around, I realized that my medications hadn’t been doing much — I didn’t think things were necessarily getting worse, but they weren’t getting better. I had a terrible sense of urgency to use the bathroom and was bleeding a significant amount every time I went. I was using the restroom 4-6 times a day and multiple times at night and had a restricted diet that consisted of mainly bananas, peanut butter, grilled chicken, and rice. My exhaustion reached levels I had never experienced, and I received both blood and iron infusions to help with my anemia. But as the middle of June came around my doctors at Stanford advised me to go to the emergency room. Once admitted, they not only found that my ulcers had spread in my colon, but that I had the food borne parasite Cryptosporidium. My pain was so severe leading up to my hospitalization that I couldn’t lay down on my back or either of my sides and would spend days and nights sitting upright leaning on my bed. While in the hospital I began my first round of biologics, and after about two weeks I was discharged and flew home.
Still as time passed my pain didn’t subside and my symptoms only became worse. My body rejected the biologic treatment and after about a week I was readmitted to the hospital near my home. I was given another blood infusion when I was admitted and spent another week and a half getting more x-rays, MRIs, and iron infusions. After 2 weeks in the hospital and additional IV steroids, my inflammatory markers were normal for the first time in months, and I was sent home on pain medication in the hope that things were finally improving.
Unfortunately, that was not the case. After about 6 days I came down with a fever and was readmitted into the hospital, this time for 4 weeks. Right away I was put on a liquid diet and given a morphine pump (which allowed me to get pain medication every 30 minutes) and proceeded to have more X-Rays, MRIs, colonoscopies, flexible sigmoidoscopes, ultrasounds, enemas, and blood tests. It appeared that the inflammation and ulcers in my colon had spread to the entirety of the colon, and it seemed that a total colectomy coupled with an ileostomy bag was the only option left. With my pain at an all-time high and my colon looking the worst it ever had, I was put onto liquid nutrition through an IV and was unable to eat or drink for about a week and a half to “reset” my colon. Despite that, I woke up one morning in a different kind of excruciating pain and was diagnosed with acute pancreatitis (a side effect of one of the drugs I had taken) and was forced to deal with that as well as my colon issues.
Trying to avoid surgery, I worked with my amazing doctors and tried out a JAK inhibitor oral medication cleared for ulcerative colitis but not for Crohn’s disease. This was a miracle attempt to save my colon, and fortunately I responded to the medication. I was taken off the liquid nutrition and gradually eased onto a liquid and then low fiber diet. Another big hurdle to jump over was transitioning to oral steroids and pain medication, for I had failed to respond to oral steroids all summer while also having bad reactions to the antibiotics I was given in conjunction with the steroids. Finally, the weekend I was to be discharged I had intense knee pain and we discovered blood clots in both of my calves. Fortunately, this did not affect the timing of my discharge, but it was just one more obstacle to add to the list of things that I would have to overcome. Yet, with the help of Dr. Cohen and the amazing doctors at Capital Digestive Care, I left the hospital two days later.
This experience was not only traumatic, but it left me with a lost sense of self and feeling as if my body had failed me. I lost over 60 lbs over these two months and developed a strong anxiety surrounding food. However, I am not only grateful to have survived the experience but to have learned how strong I am physically and mentally. I had to retrain my body to walk naturally and climb stairs again, I worked to gain weight back, and eventually tapered off the steroids I was on for over 5 months. I am still taking numerous medications for my illness and working through other side effects I continue to experience, such as anemia, joint pain, and hair loss. I have adjusted to my new “normal” and have been so grateful for the amazing support I have in my life from friends, family, Capital Digestive Care, and the Crohn’s & Colitis Foundation. This experience is not something anyone ever wishes for, but I am so thankful for aspects of my life I may have taken for granted in the past as well as the connections and relationships I have been able to develop.
Healthcare Professional Honored Hero: Dr. Zach Borman, Capital Digestive Care
When I see a patient with inflammatory bowel disease, I see their potential; the potential to feel well, live life to the fullest, and achieve their goals. My patients have traveled the world, met their partners, taken their dream jobs, and lived each day confidently. I want every patient to know they have a team supporting them whether they are sick or well, and that every year brings new treatments that push us closer to the goal of a cure. It is an honor to work with the Crohn’s & Colitis Foundation to advance research, medication development, patient advocacy, and support for those of all ages with this disease. Join me and my family as we take steps towards a cure.
