Living with Crohn’s Disease: From Victim to Victor
September 8, 2009 will be a day that I will never forget. I can still hear, “Vera, you have Crohn’s Disease.” It was at that moment that my life changed forever. I remember being surrounded by my parents, my doctor at the time, and the nurse, who was holding pamphlets about Crohn’s disease. My journey leading up to that diagnosis actually started three years prior. That is how long I had been sick but didn’t know exactly why. Crohn’s disease can be very difficult to diagnose because its symptoms can affect the entire body. Crohn’s disease is a type of inflammatory bowel disease (IBD). Over 3 million Americans are affected by IBD diseases. It usually occurs between the ages of 15-35. It can be hereditary but no one else in my family has been diagnosed with it. A malfunctioning immune system can also be a cause. Crohn’s disease causes inflammation of your digestive tract. For over three years my symptoms were severe abdominal pain, diarrhea, bloody bowels, fistulas, severe joint pain and swelling in my ankles, knees, feet, and elbows. At one point I had severe mouth sores, and inflammation in the eyes called iritis, which causes blurred vision and pain behind the eyes. I also suffered fatigue and because my appetite would diminish, I went from a healthy 140 pounds to a frail 110 pounds over time.
These symptoms would constantly come and go. I was tested for Rheumatoid Arthritis, Lupus, and Lyme disease just to name a few. I was accused of being anorexic and also was told that the symptoms were in my head, and that I needed to seek therapy. I was given multiple types of medications, but they would temporarily make me feel better if at all. At one point, I had a medicine cabinet full of medication. Those three years were some of the most frustrating of my life. I’d never felt so alone. I was constantly in and out of hospitals and doctor’s offices. Despite having health insurance, I was drowning in medical bills. I felt bad for my parents, because I know they wanted to protect me from all that I was going through. They were there for me every step of the way and drove me all over North Carolina to doctor’s appointments. I remember having to always tell my bosses that I was sick but couldn’t tell them why, because I didn’t know why myself. I would go through Paid Time Off (PTO) quickly because some days my fatigue and symptoms were so bad, that I couldn’t get out of bed. Yet, I would try. I wanted to try to feel normal and keep going on with my everyday life, even though it was the sickest I’d ever been in my life. My friends would want to hang out, but I was never able to do so. I was too embarrassed to explain my symptoms, and I really didn’t know what was going on with me. I remember when my joints became so swollen that I used crutches to get around. Toward the end before being diagnosed was when it was the worst. I was being hit with every symptom at the same time. The disease was very active, and the inflammation was at its worst. I was 110 pounds, and nothing in my closet would fit. My Mom took me to Target to get a few pieces of clothing to wear. I remember looking in the mirror when I was trying on a pair of jeans. I had no idea who I was. I was frail, my hair was shedding by the handfuls, I couldn’t hold food or water, I was walking with crutches, and was plagued with pain from head to toe. I would buy big shirts to hide just how small I was. As afraid as I was, I always had a little glimmer of hope and faith inside that I would find a doctor who could tell me what was really going on.
My glimmer of hope came in the summer of 2009. My parent’s hometown doctor at the time saw me and told me he wanted to refer me to UNC Gastroenterology at UNC Hospitals in Chapel Hill, NC. Home of the UNC Tarheels! I will always be grateful to him referring me to UNC. He helped to save my life. That next week my parents and I headed to UNC Hospital. Of all the doctors I saw, this particular doctor at UNC was the only one that really took the time to study my case and symptoms. I was there nearly 2 hours and at the end of the appointment he said he thought I had Crohn’s disease, but the only way to know would be if I had a colonoscopy. That way they could really see my colon and intestines to see exactly what was going on. Shortly after having the procedure, I met with the Gastroenterologist and nurse on September 8, 2009. What was ironic about that particular doctor was that he too had Crohn’s disease. I saw it as a blessing to have him treat me.
Let me go back to that moment when I heard, “Vera, you have Crohn’s disease.” My life did change forever, and I don’t remember much after he uttered those words to me. I heard him talking, but I think I went into shock. It was hard hearing that there wasn’t a cure, but I knew I was willing to do whatever it took to manage this disease. It had taken over my life long enough. It was time for me to take control of my life back. Of all the symptoms I had, the worst was the fistula that I had. A fistula is a sore or ulcer that surrounds the anus area. It is very painful. Every time I would urinate, it felt like salt had been poured in an open sore. My doctor at the time couldn’t guarantee that the medication would help to dissolve the fistula. Sometimes they have to be surgically removed. He also informed me that it was a good thing that I was diagnosed when I was because had I waited; I would have had to have surgery to remove a portion of my intestine, or worse. So, as bad as it was, it could have been even worse. At the time, he put me on 6-Mercaptopurine (6-MP), which is an immunosuppressive drug that helps to reduce irritation and inflammation of the intestines. I still take this drug today. That drug along with Remicade, which is a drug administered intravenously and would take about 3 hours to administer every 6-8 weeks. Remicade was a type of protein that helped to regulate the immune system. I would go to UNC Hospital to have Remicade administered and would bring my laptop with me so that I could continue working. I was on Remicade for several years, until my system got use to the drug, and I switched to Humira. The good thing about Humira is that I give myself a shot every couple weeks, which is very convenient. I also still go get my blood checked every quarter to check my vitals. The first couple months after being diagnosed, I stayed with my parents. I still wasn’t able to take care of myself, and I wasn’t ready to be by myself. They took care of me, and even drove me back and forth to work in Durham. It was about a 3-hour commute round trip. Talk about unconditional love. I will always be so grateful to them. There will never be enough ways for me to show my gratitude. I remember the night after being diagnosed. I would wake up in night sweats and had panic attacks. This went on for many years, but I kept pushing through it.
Instead of me really dealing with all that I was going through, I decided to keep myself busy and not think about how I was feeling. I would avoid internal emotion, but that was with anything in my life at the time. I joined the Crohn’s and Colitis Foundation, and ended up raising over $9000, and was awarded the Taking Steps For Crohn’s and Colitis Award for the Raleigh area. Externally, I was getting better. I had gained some weight back, changed my diet, got on an exercise regimen and was working hard to manage Crohn’s disease. I gave up eating raw vegetables, and just a couple years ago, I gave up eating beef, and it really helped me digest my food even better and maintain my weight. Internally, I was still a wreck. My self-esteem was low, and I felt as though I wasn’t good enough to be in a relationship, even though I knew my doctor told me I could have children and a family if I wanted to. I felt incomplete and was so depressed. I really kept to myself because I didn’t want to explain to people what I was going through. How do you strike up a conversation about bloody bowels, or severe stomach cramps? Even though my symptoms were diminishing, the anxiety that I felt wasn’t. Every time I would go have a bowel movement, I would break out in a sweat and would be shaking when I had to wipe myself. I was always afraid that I would see blood, or that I would get worse. It wasn’t until just a few years ago, that I stopped having anxiety when I would use the bathroom. Being in therapy helped me work through the issues I was having.
For the longest time, I would ask God why he chose me, but then I asked myself, why not? My journey with Crohn’s disease has helped me become such a strong woman and has forced me to really take good care of myself. I learned to be in control of Crohn’s and not the other way around. Today, taking 6-MP and giving myself a Humira shot is just a small part of my life. Stress can cause a flare up, but I do a better job of controlling that by taking days off, and setting boundaries for myself and saying NO more. I also have something to help control my anxiety. I don’t use having Crohn’s disease to keep me from achieving anything. The only thing that keeps me from achieving anything is ME. Writing this blog was difficult for me, but it was important for me to do it. My purpose and calling in life are to help as many people as I can. Help get through the obstacles that life tends to throw our way. If you are going through something in your life right now, and you feel like giving up; take it from me, KEEP GOING! Always keep the faith and know that better days are coming your way! For more information on Crohn’s disease head to www.crohnscolitisfoundation.org.