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Kristen

Kristen's Chronicles | Reflecting on 2017


Where do I begin? 2017 was a year of hope, change, loss, growth, pain, success, failures, and more.

In 2017, I lost my hair. Losing my hair has been one of the most painful parts of my journey because it came as such an expected side effect to my illness. There is no way to get my hair back to the way it was right away, but it is growing now and I am so excited to see its progress in the New Year.

In 2017, I had 3 more major surgeries and spent almost 2 months in the hospital. In March I had the second step in my j-pouch series to make a loop ileostomy and create my j-pouch. In May, after 2 months of obstructions from scar tissue, I had my third surgery in the j-pouch series to remove my loop ileostomy and connect my j-pouch. In September, following severe inflammation, I had my fourth surgery to remove my j-pouch and to create a permanent ileostomy. While my fourth surgery was by far the most challenging of my surgeries, each surgery brought new challenges and adjustments along the way. I went from finally reaching 100 pounds before my second surgery to 78 pounds before my fourth surgery. I went from beginning to finally incorporate light jogging into my walking to early being able to stand up from the floor.

In 2017, complete strangers became friends and family to me. In addition to the many amazing people that I have had the opportunity to meet through my blog and social media, some of my strongest friendships were made within the hospital. The Johns Hopkins Hospital has been my home for care since August 2016 and my doctors and nurses have followed me throughout my journey through the highs and the lows. They have made me smile on my worst days, shown me incredible compassion, and given me advice to last a lifetime. I will never, ever be able to put into words the impact that my hospital family at Johns Hopkins has had on my life. They not only saved my life, but they have lifted me up during some of my darkest times with their unwavering kindness and love. There are truly no words to describe my gratitude.

In 2017, I finished an entire year of graduate classes. From completing assignments weeks ahead of time in preparation for surgery to writing papers and finishing finals from a hospital bed, pursuing my Master of Science degree in Integrated Marketing Communications full-time while also being chronically ill full-time has been anything but easy. I began my masters degree days before my first surgery last fall after being advised to drop the program and have refused to give up since. I have never wanted my illness to be an excuse to not pursue my goals in life, so if that meant brainstorming papers from the back of an ambulance, you bet that is what I did. I will present my capstone in the spring and graduate in May 2018.

In 2017, I said an expected goodbye. Just a few days after Thanksgiving this year, my Papa passed away. The loss of a family member is such a deep pain that brings so many emotions to the surface. Over time the pain will begin to dull, but those who we have lost will always have a special place in our hearts.

In 2017, I explored. This summer, in between my third and fourth surgeries when I had built up a little extra strength and energy, I took advantage of the warm weather and went kayaking. It may not have been for very long or very far, but spending uninterrupted time in nature is truly priceless. Kayaking gave me the opportunity to live in the present and take in the beautiful world around me. Often times when we are dealing with great amounts of stress in our lives, we forget to appreciate the little things. I am so excited for the New Year and the new adventures that await.

In 2017, I received new diagnoses. When the results of my DEXA bone density scan returned in early August of this year, my primary care doctor was stunned. My levels surpassed those of many people over the age of 60 and I was diagnosed with severe Osteoporosis and referred to a Orthopedic Specialist to decide the best approach to slowing down my bone loss. In the New Year, I will receive IV infusions of medication for my Osteoporosis as well as continue physical therapy to strengthen my muscles and help slow down my bone loss. Additionally, after the results of my biopsies from my fourth surgery returned, my original diagnosis of ulcerative colitis was changed to a diagnosis of Crohn's Colitis, a very rare form of Crohn's Disease that predominately affects the colon. While scary, my new diagnosis shines light on the many unanswered questions through my illness and explains the rapid and severe failure of my j-pouch. I will return to John Hopkins Hospital in March 2018 for a follow-up CT scan to check for inflammation, ulcers, and granulomas. Our fingers are crossed, double crossed, and triple crossed in hopes that my fourth surgery to remove my j-pouch and ulcered area of small intestine will help me remain symptom-free, as Crohn's Disease can affect all parts of the digestive tract.

In 2017, I found my voice. I began Kristen's Chronicles earlier this year as a way to chronicle my journey in hopes that it would help and inspire at least one person along the way. I never envisioned that by simply starting a blog to chronicle my journey with Inflammatory Bowel Disease that I would meet so many amazing people and hear the incredible stories that I have. I was recently brought on as a Staff Writer for Companion IBD Magazine where I have my own weekly column called "Kristen's Chronicles" that is geared towards positivity, motivation, coping with stress, self-love, and more. I look forward to continuing to write in the New Year in hopes that I can use my voice and my story to raise awareness for Inflammatory Bowel Disease and fight for a cure.

In 2017, I got my first tattoo. I began designing my first tattoo shortly after my first surgery last year. I wanted something to symbolize my journey in a simple, but meaningful way. After months of designing and redesigning, I settled on my design and on my 23rd birthday, I got my first tattoo. A semi-colon, which in writing symbolizes a pause rather than an ending, makes up the body of my butterfly. Butterflies symbolize life, rebirth, transformation, and the beauty of change. Together, my tattoo remains a constant reminder of my journey and the life-threatening challenges that I have faced along the way.

In 2017, I learned to love myself: ileostomy, scars, and all. After 4 major surgeries and now a permanent ileostomy, my body has changed a lot in the last year. Many staples and stitches later, I now have over a dozen scars and, of course, my ileostomy. At first, I was devastated by the changes that my body had undergone. But slowly, as time goes on, I have begun to love my scars. Each scar tells a story and each story is filled with moments when I proved to myself that I am stronger than I ever could have imagined. I wear my scars with pride and as little reminders of my journey.

It is so easy to look at all that has come my way in 2017 and label it as the worst year ever. Trust me, the thought has definitely crossed my mind. But when I look past the fear, the pain, and the stress, I remember the beautiful moments. The moments when I thought to myself, "I am so thankful for this life." The people I have met, memories I have made, and lessons I have learned easily outweigh the negative experiences that I have had.

While I will not be setting any New Years resolutions or setting expectations for 2018, I would like to instead choose one word or several words to live by in the New Year:

Live. Laugh. Purpose. Healing. Grace. Abundance.

I do not know what 2018 will bring and the future can certainly be scary, but one thing that my illness has taught me is that everything is going to be OK. I will smile until my face is sore, laugh until tears form in the corners of my eyes, dance like a fool, love endlessly, and show gratitude for everything in my life. The sun always comes back out and even on the darkest of nights, I can roll over and look at the stars, finding that glimmer of light, even if it is small.

Wishing everyone a happy and healthy New Years!


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