It is so hard for me to believe that I was diagnosed with Inflammatory Bowel Disease TEN years ago. That means I have been living with UC for a solid decade- a DECADE. That is seriously a long time! You would think I would have run out of poop jokes by now, but no, never. Haha! So much has changed in my life, including how I handle my health and my overall wellness. I think back on the girl that just sobbed in her hospital bed as the doctor tried to explain to me what I had and how it will affect my life. I thought my life was over. My mom even had a dietitian with UC come to talk to me, but I was inconsolable.
I have grown up so much since then in so many ways- I graduated from college, lived overseas, moved across the country, met my husband, and traveled all over the world. I also learned to advocate for myself, taught myself how to experiment and find a diet that works for my body, and educate myself on health and wellness for autoimmune diseases. With my 10 year anniversary coming up, I wanted to re-post my diagnosis story and journey with Ulcerative Colitis. Enjoy!
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Pre-UC Holly
While 8 years does not seem like a long time, it feels like light-years away when I compare my pre-UC self with my current self. At 19 years old, I was a lively, energetic social butterfly. I felt invincible in every way possible. I would hike a strenuous trail with friends for 5+ hours, shower, and go to a party with more friends that lasted late into the night. I could go from activity to activity without skipping a beat. The summer before I was diagnosed, I worked a summer camp where I was on the outdoor rock climbing staff. That’s right- outdoor rocking climbing. Alongside 3 others, I was responsible for carrying a 40 lb pack filled with climbing gear up a steep 2 mile hike and then bouldering to our climbing site. I would then help set up the climbing rigs in 100+ degree weather with 80+% humidity. Rinse and repeat- 3 times a week for 4 weeks. While I believe I could do something similar to that now, it would not be without EXTREME fatigue.
My Diagnosis
May 26, 2008 will be forever etched in my mind. It was Memorial Day and y parents grilled delicious, juicy burgers and churned homemade ice cream that is to die for. I woke up with a stomach ache and, knowing my lactose intolerance and my love for my dad’s homemade ice cream (stubborn party of one!), I took over-the-counter medicine that I hoped would let me enjoy the savory meal. Little did I know it would be my last meal for thirteen days.
My stomachache escalated to relentless, excruciating pain, and I suffered other graphic symptoms that I will spare you as the reader from enduring.
I was diagnosed with Ulcerative Colitis and spent two weeks in the hospital. While the UC diagnosis shook me to my core, it couldn’t have prepared me for the uphill battle I would face for the next 8 years–5 hospitalizations in 4 years, significant weight loss, muscle mass deficits, chronic fatigue, and various flare-ups along the way that confined me to my sofa for months. (This is when I caught up on every TV series that ever existed.)
While it was a physical battle of my body fighting itself, it was also a battle mentally and emotionally. All I knew that far in my life was an active, high energy lifestyle and now I had to wrap my head around what it meant to live with a chronic disease. Immediately after the diagnosis I just sobbed, thinking the world was over. I have to take how many pills?! Why do I need a nap after walking to the mailbox? I can’t eat my favorite foods anymore? It took some time to wrestle with the changes.
Luck would have it that my stubbornness finally came in handy! I refused to accept a sedentary life filled with popping pills and watching the outside world pass me by. In fact, I was back working my second summer at the summer camp within 3 weeks of my diagnosis! (Given, I was on river tubing staff instead of rock climbing, but I was there!)
I gradually worked my way back up to running (and eventually ran a marathon, but that’s another story), returned to college (and graduated on time!), and found a new rhythm of life that worked for me.
Treatment Journey
I call it a journey because it has taken 8 years [now 10!] for me to be where I am today with my health. My gastroenterologist and I worked together to find the right combination of medications that worked best for my body. There is no magic, universal combination that works for every UC patient so it took patience and time (and quite a few hospitalizations) to figure it out. It was through this process that I learned to speak up. I love to travel overseas and run, so it’s important that my doctor knows that to distinguish which treatment plan would best accommodate the life I want to live. I have also learned to not be ashamed of my side effects, that I absolutely have to tell my doctor or my loved ones what is going on so I can be treated properly.
After years of suffering with poor quality of life on medications, I decided something had to change. I heard numerous anecdotes of those who went completely off their medication purely based on changes they made to their diet and, while it seemed radical, it began to pique my interest. Could this be an option for me? While my doctors only continued increasing the medication dosage or switching to an even stronger medication altogether, I decided it was time to take the matter into my own hands and research nutrition options that could work for me.
Through a series of food allergy tests, an elimination diet, and experimenting, I found a balance of foods that work best for me, as well as those that I should minimize or avoid altogether. It is through this lengthy process that I discovered the power of nutrition. Since applying nutrition therapy to improve my own illness, I have been hospital-free for 4 years and have suffered only minor UC flare-ups. Proper nutrition gave me the gift of a normal, healthy life.
Final Thoughts
If you are reading this and have been recently diagnosed, stay strong and get ready to put up a fight! You are now a UC/Crohn’s warrior and you are stronger than your disease. It isn’t an easy road and I know you didn’t choose this path, but you are stronger and more resilient because of it.