My name is Kristen and in March 2016, I was diagnosed with severe Ulcerative Colitis, an Inflammatory Bowel Disease that causes inflammation and ulcers in the digestive track. I was placed on the tried and true medications to control Ulcerative Colitis, as well as infusions of the biologic, Remicade. After only my third infusion of Remicade, I had a life-threatening allergic reaction, requiring emergency medications and eliminating my most promising chance at remission. My symptoms continued to worsen despite the medications to control it and as June came around I was requiring fluids on a weekly basis to help with dehydration. I was down over 20 pounds in two months and rapidly declining. By July, I could no longer work due to over 40 trips to the restroom a day, severe pain, and weakness. I was severely dehydrated, running constant high fevers as my body tried to fight the illness, and losing significant amounts of blood and weight. The week that I received my diploma for graduating with my undergraduate degree, I was in the hospital at Ruby Memorial in Morgantown, West Virginia. It was here that we learned that I had a severe secondary infection of Clostridium Difficile or C. Diff., a bacteria that causes diarrhea and life-threatening inflammation of the colon. My case of C. Diff. was very resistant to anti-biotics and did not respond after several weeks and multiple doses of some of the most powerful anti-biotics available. With my combination of severe Ulcerative Colitis and severe C. Diff. both attacking my colon and causing diarrhea, I became critically ill. I developed ulcers and blisters in my mouth and throat from the disease and my overall health affecting my upper digestive track, making eating and drinking extremely painful. I hoped and prayed every night that I would wake up and the nightmare I was in would be gone, but every day I just continued to get worse. I was receiving fluids now multiple times a week and it was one afternoon after my dad spoke to my primary care doctor that we rushed to Johns Hopkins Hospital in Baltimore for treatment. “Chris, she’s not going to make it,” my primary care doctor told my dad that afternoon. Upon arrival at Johns Hopkins Hospital, I was immediately admitted in critical condition. It was here that I would then spend the next two and a half weeks fighting for my life. I needed two blood transfusions, continuous fluids, and IV nutrition, as I could no longer eat or drink and was still losing significant amounts of blood as both the Ulcerative Colitis and C. Diff. destroyed my colon. We attempted a fecal transplant to cure the C. Diff. as well, with no relief once again. By that point, I had lost over 40 pounds, weighing only 73 pounds. I could no longer walk due to muscle loss and was in continuous, excruciating pain. It was then that we realized that our only option was a colectomy to remove my entire colon (large intestine) and save my life. My body was shutting down and if we waited any longer or opted out of surgery, my other major organs would have begun to fail as well. I went into surgery on August 24th at 7:30 AM in critical condition, but still smiling.
My first surgery was successful, but the road to recovery has been anything but easy. I received a PICC line in my arm leading to my heart before being released from Johns Hopkins Hospital to provide me with fluids upon returning home and required weekly visits from in-home nurses for blood work and changing of the PICC line. I would have to learn to walk again through intense physical therapy and adjust to tolerating food without a large intestine. Both proved to be very slow, disheartening, and painful processes. I continue to improve every single day. I have gained 20 pounds back and have been walking and using strength exercises to build my endurance and muscle back. Adjusting to the ileostomy bag has been a challenge both physically and emotionally, but has only made me stronger. Despite my illness, I began my Masters of Science degree in Integrated Marketing Communications at West Virginia University from my hospital bed the day before my first surgery and have remained on the Dean’s List throughout my recovery. I have refused to let my illness slow me down or keep me from pursuing my dreams. I made the decision after my first surgery to continue to pursue the process of getting a J-Pouch. The J-Pouch is a surgically constructed internal reservoir which will allow me to no longer require the ileostomy bag. The J-Pouch is a medical miracle, but comes with a lifetime of possible complications. With the J-Pouch, dehydration will be an on-going battle for me, as even something as miniscule as a stomach bug will place me in the hospital. Additionally, the J-Pouch can develop strictures, infections, pouchitis, and obstructions, which can be dangerous and life-threatening.
For many people, the fight against Ulcerative Colitis consists of many medication-filled years as doctors try their hardest to put the illness in remission. But I did not have years. I barely had months before my Ulcerative Colitis, especially complicated by C. Diff., became too much for my body to handle.
My journey has been painful. It has been disheartening. It has been downright overwhelming at times. But every day, I wake up a little stronger, a little healthier, and a little closer to fully embracing the new life that I have been handed.
I did not ask for any of this to happen nor would I ever wish upon anyone, but I am thankful for every second that I have struggled, every once of pain that I have felt, and every amazing doctor, nurse, and individual that I have met on my journey. I truly feel as if I have been given a completely new view on life throughout this process and I look forward to continuing to grow and let this journey impact me in the very best way possible.