Living with Crohn's Disease

As a child in grades K-5, I was like any other normal, healthy child. But when I started running fevers at the beginning of my sixth grade year, my family and I knew that something was wrong. At first, my Crohn's disease was incorrectly diagnosed as a sinus infection. After a round of antibiotics, but no change in the fevers that I was running, I was again misdiagnosed with a sinus infection. Another round of antibiotics later, I was back in the doctor's office (a place that I have become very familiar with over the last 20 years). This time, I would be misdiagnosed with a staff infection. What followed was more antibiotics, then more fevers, which ranged from 99 to 103 degrees. Finally, after about six months of uncertainty, I developed a bunch of black and blue bumps on my shins. Although they did not hurt at all, my doctor told me that they were a telltale sign of an intestinal disease called Crohn's disease. I learned that the symptoms of Crohn's vary from person to person, and include fever, abdominal pain, swollen and achy joints, lack of appetite, diarrhea, lack of energy, and anal bleeding, among others. Because the symptoms are so vague, Crohn's is often misdiagnosed or not diagnosed at all. I also learned that Crohn's is a non-contagious, heredity disease. I the years following my diagnoses, my brother and two of my uncles have also been diagnosed. After a colonoscopy, it was confirmed that I indeed had Crohn's Disease, which at the time was a relief, after months of speculation and not knowing what was wrong.

I was immediately put on a high dose of Prednisone, a steroid that lowers inflammation. Throughout the years that I have had Crohn's, I have taken Prednisone, Azulfadine, Pentasa, Imuran, and Remicade. The Prednisone is usually extremely effective in treating the Crohn's; it increases appetite and energy, while lessening the symptoms of the Crohn's such as fever, stomach pains and diarrhea. The problem with Prednisone is the dreaded side effects. The worst side effect for me was depression. After about 6 months on the Prednisone, I fell into a deep depression, and was prescribed Prozac to offset it. The Prozac worked well, although it took about 3 months for my system to absorb it. Although Crohn's disease can be a horrible thing to deal with, I would rate the Prednisone-related depression as MUCH worse than the Crohn's. After graduating college at Ohio University, I suffered a "flare up" of my Crohn's and was prescribed another large dose of Prednisone. Just like when I was 11, the Prednisone was effective, but led me into depression. Again, I was prescribed Prozac, which worked well. Another nasty side effect that I have suffered related to long term Prednisone use has been the weakening of my bones. In the past five years, I have had knee surgery, broken my thumb playing softball, and I broke two fingers playing kickball...yes, kickball. All this after never breaking a bone in my body for 25 years. My doctor suggested that I have a bone scan to determine how strong my bones were. The results showed that I had Osteopenia, which is the stage that people go through before they have Osteoporosis. Not bad for a 65 year old woman, not good for a 30 year old man, my current age. To offset this, I take Tums with calcium whenever I think about it, which is hardly at all. I am grateful that Prednisone is approved for people with Crohn's disease, because it provides almost immediate relief from the symptoms of Crohn's. I would caution anyone, however, who is prescribed Prednisone long term to seek out alternative options for medicine.

Just recently, after another "flare up" of my Crohn's, my doctor and I agreed we did want any more Prednisone in my system. After a colonoscopy determined that I may require surgery to remove some damaged parts of my intestines, my doctor and I agreed to try something that was not Prednisone. I was prescribed a combination of Imuran and Remicade. Although I have only been taking these relatively new drugs for about 6 months, I have never felt better with almost no side effects. The main drawback to Remicade is, one must go to the doctor's office and have is infused through an I.V. for about two hours every 6-8 weeks, much like a cancer patient must get chemotherapy. Many people have allergic reactions to Remicade, and for others, it doesn't seem effective at all. For me, however, it is working just fine, and if I continue to improve on it, I will not need surgery any time soon. Remicade is not cheap though. Each infusion costs over $2,000, and when my insurance is done, I pay about $300 every eight weeks. Although I feel well now, I know that Crohn's disease can pop back up at any time, and that surgery may still be needed at some point. I need a colonoscopy every six months to a year, just to check on how everything is doing. No matter what you may hear or think about colonoscopies, they are not bad at all. The absolute worst part of a colonoscopy is the day before hand. A day when the patient is not permitted to eat anything, and takes a regiment of laxatives to clean everything out. Once the actual colonoscopy starts, the patient is sedated and doesn't remember a thing.

Although Crohn's disease has cost me a lot of money, forced me into numerous trips to the hospital for countless blood tests, colonoscopies, CT scans, etc, it has not stopped me from living my life. It hasn't stopped me from graduating college, then going on to earn a Master's Degree in Education. It has not stopped me from being an inspirational teacher for the last 6 years, even if I may use a couple more sick days a year than most people. Crohn's hasn't stopped me from being an avid tennis player and golfer, cook, sports freak, and (sometimes) bar fly. It hasn't stopped me from being in a long term relationship with a girl I will probably marry soon. It will not hold up my future of having children, receiving a PHD, buying a house, etc. I have learned many things through my experiences with Crohn's. I believe it has made me a more compassionate, patient person, and it has made me have a more positive, (yes positive), outlook on life, because I don't get caught up worrying about the little things that can stress most people out. If you have Crohn's, I encourage you to stay positive, and remind yourself that doctors are making progress each day on how to treat this disease. Please use the comments section to share your experiences and inspirations, or just to vent.