Posted by Mikinzi Casto on March 30, 2023
I'm 19 years old, and I have Crohn's disease. I was diagnosed in 2012 when I was eight years old. One interesting fact is that I know how to surf even though I'm from West Virginia. I struggle the most with not letting Crohn's consume my life.
There are many days where I feel very alone in my battle, like I don't have anyone that truly knows what it's like to live with this monstrosity. Many days it feels like Crohn's has taken so much from me … because it has. Growing up, I lived in the hospital and received an ileostomy, had my colon removed, then had an ileostomy takedown. I was in my longest lasting remission throughout high school, but in 2022 I fell right back into a flare. Currently, I'm still in that flare. It has hindered me so much that I had to take the semester off of college. I am a sophomore at West Virginia University, but I couldn't keep up with classes, research, and labs while I was in a great amount of pain and fatigue. Plus, I couldn't eat anything without suffering greatly, I was losing weight, and of course, passing blood. I'm moving to team based care now because my case is getting very complicated, considering the extraintestinal manifestation of my Crohn's disease (pyoderma gangrenosum) -- ulcers in my skin. We are working on trying new treatments, as my new biologic is not taking care of anything. Aside from my Crohn's, I also need my biologic to take care of my arthritis and numerous skin problems.
It feels very defeating and heartbreaking for me and my family when my health has taken so much; my life at college, things that I was good at and excited to do, such as research, and my favorite activities, such as running or surfing at the beach.
This journey has been very tiring, and there are many days where I have no strength to keep going. I'm a Christian and my faith in Christ has been a major reason I have been able to stay strong through all of this. These verses have been great reminders for me, and I hope they can encourage you too.
Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Philippians 4:13 - I can do all things through Christ who strengthens me.
Aside from my faith, another major help in overcoming my struggles is therapy/counseling. My therapist has helped me so much in allowing me to open up emotionally and mentally. The impact a chronic illness has on someone's mental health is just as important as their physical health. For me, everything that has come from my Crohn's (procedures, pain, hospitalizations, treatments, etc.) has scarred me emotionally and physically. I'm scared of how bad my next/current flare will be, and if I will ever reach a point in life where Crohn's isn't dictating everything. My doctors and nurses are amazing, but being the patient takes its toll. Some days it feels like Crohn's has taken all the joy from my life, and I don't know who I am without my disease.
My therapist has been amazing in helping me through my medical trauma, and reminding me that "We may not know what the purpose of this disease in your life is, but we do know that YOU have a purpose." That spoke volumes to me. You are so much more than your IBD and there's so much more to life than the hospital and chronic illness. After hearing that, I have really been on a mission to try to work around my Crohn's and focus on living the best life I can, because Crohn's doesn't get to ruin my life.
We may not know what the purpose of this disease in your life is, but we do know that YOU have a purpose.
I was drawn to ICN and the PAC because I wanted to know a group of people that understood what I was going through. I also joined because I want to help advocate for patients with IBD. The PAC has already made me feel very welcomed and has actually helped greatly as I've been able to ask members about treatments and insurance questions.
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