The mouth sores, the joint pain, severe fatigue, nausea, severe abdominal pain, pain while eating, pain while drinking, pain without eating for a whole day, loosing blood every time I went to the bathroom…
How could I learn to love something that was slowly killing me, let alone trying to live with it?
“You’re young and generally healthy so we foresee you responding well to medication but, unfortunately, there is no cure.”
On January 10, 2018, I walked out of the fifth floor building, alone and confused. How could someone who grew up active and healthy be diagnosed with an incurable disease? Healthy and incurable were not two words I’d expect to find in a sentence together.
Crohn’s Disease is an autoimmune disorder that targets your bowel and digestive tract. Unlike other forms of IBS (irritable bowel syndrome) and IBD (irritable bowel disease) Crohn’s typically shows signs of inflammation from mouth to anus. This disease can be treated with biologic medications via infusion or injection. While everyone that experiences this disease may shows similar signs, everyone responds differently.
Hospitalization after hospitalization, blood infections and blood transfusions, severe sepsis and 24/7 IV medications… and my options were running low. My body created antibodies in response to every medication I tried, leaving me with flare up symptoms and a cozy room in the ICU. I knew we weren’t going to be looking at a new medication.
On December 3, 2020, I checked into a new location in hopes of finding relief through a permeant end ileostomy. An end ileostomy procedure takes place when the surgeon removes the large intestines and rectum and brings the small intestines through an opening 1-2 inches from the belly button called a stoma. Without the large intestines (colon) and rectum, any output made by the body is released from the stoma into a bag that the person wears and empties when needed.
“It will take time to heal and recover and it may take even more time to adjust but you will be able to do anything you want in life. From your career choice, to your daily activities and hobbies, to your relationships. This procedure will give you back your quality of life.”
I held on to that hope for weeks and months of healing and adjusting.
Everything hurt but in a new way, in a way that felt temporary. Slowly, I noticed I was walking on my own, getting out of bed without assistance, showering while standing. Before I knew it, I was getting together with girlfriends for a weekend getaway, going roller blading with my dog, going out to dinner and getting the drink or dessert I wanted. Some of these things may seem small but to me, they were everything I was missing out on before.
Change can be scary, especially for the one receiving it. It can be daunting learning something new. It can be nerve-racking not knowing how family, friends, your boyfriend or girlfriend will respond or if they’ll understand your needs. It can be hard seeing your body permanently altered. It can be frustrating “looking” sick when you actually feel better than when you didn’t look sick. Learning to love a body that once tried to kill me has been filled with patience, grace, prayer, acceptance, tears, frustrations, and a lot of time in my own thoughts. One thing I’ve held onto is that I have the opportunity to live a full, exciting, adventurous, and joy-filled life without pain. It might look different and many may not understand, but I have the privilege of informing and sharing my story for those who maybe weren’t as lucky.
Many of us will go through something in life that will change us, either physically, mentally, or both. In the moment, it may feel impossible, it may flip life as you know it upside down. Let me remind you: you are strong, you are brave, you are courageous and you can do hard things.
Often, when people ask me how I stayed so strong through the years, fighting for my life, I would feel guilty because I didn’t feel strong in the moment. Looking back, I know it was my family, my friends, people’s prayers, checking in, acts of service, the patience and determination of my doctors, surgeon, and nurses. I was and still am so blessed to have come so far in my journey with Crohn’s.
I understand that it is far from over, even surgery was not a cure but I’m able to take what I’ve learned, enjoy the years ahead of me and know that no matter what lies ahead, I’m strong, brave, courageous, and I can do hard things. I will overcome.