My relationship with Crohn's is not something new. My brother was diagnosed at 17 back in 2001 around the time he graduated from high school. He went in for
a routine appendectomy and ended up taking an extra few hours in the operating room. At the time I was unaware of just what was going on, but my parents sure knew and it hit them hard. After all said and done, Ryan had a 5" lateral next to his belly button and 18" of his intestine removed, along with the appendix. Now I should mention that I should have Crohn's to thank for Ryan making it through; his appendix had completely ruptured and the Crohn's inflammation had surrounded the appendix, minimizing the toxic effects of the rupture. So I can't say the disease is 100% evil.
Crohn's disease is a nasty condition that with a similar condition known as Ulcerative colitis (UC) affects more than 1.8 million people today. These two diseases are under a blanket term known as Irritable Bowel Disease, or IBD. Crohn’s is known as an autoimmune disease, which in a general sense, the body attacks any part of your gastrointestinal tract, from end to end. Already you may have formed a mental picture of the situation and how it affects an individual. It can be embarrassing if you do not have a firm hold on it; I am not.
Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon. (ccfa.org)
A normal and healthy immune system attacks foreign agents that may cause infection, sickness, and disease. With Crohn's disease, a body's immune system mistakes the intestine for a foreign body and begins to attack it to stop the threat. The result on the intestine is severe inflammation, which can lead to severe abdominal pain, anemia, weight loss, bleeding, diarrhea, and the unfortunate possibility of not being able to make it to a restroom in time!
For years I would be going to the bathroom 15+ times a day. Slowly eating less and less due to the pain in my abdomen, and losing weight little by little in the process. I had it down to when I ate a particular food, I could tell you how long I had before I had to go to the bathroom, how many times I would need to go, and how long that would last. I had not been able to enjoy a holiday meal in years. People were worried; I was falling more ill by the day and no one knew what to do or say to bring attention to it; but I was experiencing far worse than my appearance allowed. Christmas Eve 2008, my family and I are excited to be spending the holidays together are beginning to start preparing the family feast when a call from my GI doctor break the Yule tide joy. He informs my mother that I need to get a blood transfusion. Thinking that it was not a dire situation, my mother asked when the appointment the following week was scheduled. A strong interjection cut her off, "No, he needs to go to the Emergency Room today! Right now! I already have him on the schedule. He needs blood right now!" My mother and I stop what we are doing and make the 45 min drive to the ER at Texas Health Southwest for 3 units of blood to be transfused, a process that takes 14 hours! The very next morning, Christmas Day, I get a very bad flare up and spent that day mostly curled up in my room unable to accomplish anything. A worse flare up occurred just 6 days later on New Year’s Eve.
Fast forward to January 2009, I have that same statement, "You have Crohn's..." told to me in an 8x10 examination room. After much more intensive research, I discovered that I had symptoms of Crohn's as early as 2005, only being masked by another condition I have, Pyloric Stenosis. January 5, 2009 I wake up to another morning of cold sweats, extreme abdominal pain, and the concept of needing nourishment but unable to withstand the pain of putting food in to my stomach. To add insult to injury, it was the same day I was let go from my previous employer due to "economic hard times." That pink slip was a blessing in disguise; I had an appointment with my GI doctor that same morning and I could make it and not be rushed. Finally I could be properly assessed and diagnosed.
April 16, 2009 I was admitted to the ER with a severe flair up and needed emergency surgery. My dad arrived to help make sure the doctors were not overlooking me and to provide support through the pains. Over 20" of my small intestine was removed; 12" of that was 100% blocked due to the Crohn's and had to be removed because it could not retain it shape. I spent the next 6 days in the Intensive Care and11 days total in the hospital. My time in the ICU was spent fighting a very high heart beat due to blood poisoning. Sarah, my amazing girlfriend, spent 3 nights in a row in the world's most uncomfortable chair while I was in ICU. When I was moved to a private room, my dad spent the night there to help me sleep better because of the nightmares from the medications I was taking. My mother was there everday to make sure I was getting the right care and asking all the right questions. I learned that the bed I had during the remainder of my stay allowed you to sit over six off the ground, and yes, hospital food is still tasteless. Now nearing 12 months of post-op, I take maintenance medications and receive iron infusion treatment to keep my blood levels at normal. I have wide scar running the length of my belly from the surgery which makes for good visual evidence should someone not believe my experience.
During my recovery, Sarah's mother took up the hobby up of running and not long after her first 5k, did I get the itch to run again. Since then Sarah and I both have taken on running and it has become an obsession! The road to recovery has been long and delicate and I must learn to live with Crohn's and not let it dominate my life. Crohn's is a condition that will stay with me forever. I am very fortunate to have such a supporting group of my family, my friends, Sarah, her family, and doctors to make sure I control Crohn's, not it controlling me. Since surgery, I have gained the weight I lost (over 30 pounds!!) , and have completed my first half marathon!
I joined CCFA to build awareness and help find a cure to such a life altering disease. Please support my efforts and aid in finding a cure for Crohn's disease and UC!
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