My Story with Crohn’s Disease
It has taken me a long time to tell the story of my disease. I’ve been debating about whether I should share my story. It’s still hard for me to say it out loud. I’m not self-conscious or ashamed. Many of my closest family and friends know about my struggle and how far I’ve come. I am thankful that there are ways to manage it and hopeful that I will live a long life.
This story is not about me. It’s about sharing my story in the hope that it may help someone else and bring more awareness to my disease.
On the outside, I look perfectly healthy and normal. On the inside, there is a war raging against my body. In fact, that’s exactly what’s happening. My body is attacking itself.
I have Crohn’s disease, an autoimmune disorder. I was diagnosed in the fall of 2012, almost 3 years ago. However, I’ve been battling this illness since I was a young child, misdiagnosed at 11 years old.
Crohn’s disease can sometimes cause life-threatening complications. There is a long list of symptoms, caused by an inflammation of the lining of the digestive tract. The disease can affect every part of your body, from severe pain in the abdomen and joints, to fatigue, loss of appetite and nausea. It can also result in arthritis, depression, and weight loss. I’ve had all of the above (and still trying to manage them). At one point, a nurse asked me to complete a two-page checklist of all of the possible symptoms. I checked the box on almost every one.
Crohn’s disease can be managed by a variety of medications and sometimes surgery. For these last few years, I’ve been trying to figure out how to manage my symptoms and find the best treatment. It’s been a long, difficult road. It’s been a constant exploration of understanding the disease, testing and doctor appointments, and trying different treatments.
For the last two years, I’ve been treated with Infliximab injections, a form of chemotherapy that requires me to spend a few hours at an infusion center every 7-8 weeks. It lowers my immunity so that my body stops fighting itself.
The long list of side effects is alarming, and I’ve encountered quite a few of the effects, including an allergic reaction that made my throat so swollen that I could barely breathe. I’ve lost hair. I’ve gained and lost weight. I’ve had a sore throat almost constantly for the last two years.
Is it worth it? Absolutely. It has helped me to get a handle on managing the disease and it’s symptoms.
I went through a very dark phase in 2013 when I was extremely depressed, fatigued, and had lost hope. I was angry. I was sad. I was tired of fighting. I felt alone.
I joined a support group online. It helped to read about the experiences of others that were trying to figure it out too, but it also made me even more depressed. It didn’t seem like anyone was finding answers. It made the disease feel even more real.
A friend encouraged me to see a therapist, which I dismissed at first, and then finally decided to try. At that point, I would try anything. I was miserable and desperate. After 6 months of therapy, I began to uncover and deal with the emotional impact. I had focused all of my energy (the little that I had) on my physical wellbeing that I had neglected my heart and mind in the process.
My therapist encouraged me to express my range of emotion. I was in mourning for the health that I had “lost”, the notion that I could never again live a normal life, even if “normal” was only a figment of my imagination.
These sessions encouraged me that I had to take matters into my own hands and become my own advocate for my health. No one else was going to figure it out for me. When Paul came home from work everyday, he would often find me in a heap of tears and desperation. I barely had the energy to climb the stairs to our house or cut my own food. I needed answers and change.
I took a medical leave of absence to travel to the Mayo Clinic in Rochester, MN. I wasn’t sure how long it would take, but I was determined not to leave until I had answers. They reviewed my case and accepted me for treatment. After a myriad of tests on every part of my body, my team of doctors discovered that one of my medications was at a toxic level. The drug that I was prescribed to prevent my body from rejecting treatment was actually slowing poisoning me. I immediately stopped taking that drug.
Although the change in medication helped, I was still struggling. My best friend Jennifer invited me to hear a speaker on Gut and Psychology Syndrome (GAP Syndrome or GAPS), a belief that all diseases begin in the gut. The Gut and Psychology Syndrome Diet has its foundation on the Specific Carbohydrate Diet (SCD) created by Dr. Sidney Valentine Haas to heal digestive disorders. Dr. Natasha Campbell-McBride has taken SCD and evolved it further to create a full protocol for healing digestive disorders and subsequent issues.
It’s a difficult diet, with a long list of things I can and cannot eat, however it has changed my life. When I follow it to the letter, I sometimes forget that I even have a disease.
I am reminded, however, when I have my chemotherapy treatments every 7 weeks. They are expensive and sometimes painful. I try to work during the infusion or find other ways to distract myself. Paul, my dad, or a close friend, always accompanies me to the hospital or infusion center. I cannot drive after the treatment because I am usually very weak and disoriented.
When you look at me, I want you to see a fighter. I have several close friends who have gone through and are going through many difficult health struggles. They are beautiful, inspirational women. They are shining examples of strength and I’ve learned so much from their grace and positivity.
If you are dealing with an autoimmune disease, please do not hesitate to reach out and ask me questions. I am telling my story to give you hope and to let you know that you are not alone.