It has been a few weeks since I last posted something on my blog about the race and my life with Crohn’s Disease. I decided to update the original posting describing my journey with the disease. Last year I participated in a half marathon to raise money to find a cure for the disease – there is no known cause or cure for this illness. I finished the race and continue on the road to recovery. My recovery has gone so well I was a shoveling demon this past winter when we were blanketed with several feet of snow.
To appreciate the joy I experienced shoveling, you need to understand what has happened over the last few years. My life changed when I was diagnosed with Crohn’s in 1999. 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. Crohn's disease and ulcerative colitis affects approximately 1.4 million adults and children. Most people develop these diseases between the ages of 15 and 35.
It started me on a journey which ultimately became the best thing to happen to me after the birth of my son. God taught me that living by faith in His word and His assurances will ensure all my needs will be met.
I had surgery for what I thought was an appendectomy but in reality was a perforated intestine. At the time I weighed 185 pounds yet several months after surgery my weight dropped to approximately 140 pounds (I am 6’2”). I did not adjust well to the disease. At first I was in denial but in time I realized the need to gain greater control over the disease and my life.
The nature of the illness varies from individual to individual. The disease is extremely frustrating because it is so individualized. You and I can have similar symptoms and similar procedures performed; however, the illness will still affect us differently. Consequently, each of us affected by the disease must chart our own course in living and managing the disease. We must determine the treatment and diet which best fits our particular needs.
Diet and stress seem to be two factors which significantly influence the disease. The more you are able to control those two factors, the likelihood you can stabilize the disease. I began to adjust my diet to the point where I was able to maintain my weight in the 150-160 pound range. Unfortunately, I was in a high pressure job so controlling stress was not easy.
The illness itself is not fatal but the side effects of the disease can be. Because Crohn’s -and its cousin, colitis - affects the intestinal tract, malnutrition can occur. I must be vigilant in ensuring I ingest the proper nutrients - I take a multivitamin everyday and ingest other supplements as well – and eat well. Sometimes I can’t hold food which accounts for the weight loss.
For many years I struggled with iron deficient anemia. This caused me to be tired and sluggish and short of breathe. I lost count of the number of blood and iron transfusions I received. Yet in spite of these treatments, the anemia continued to the point where one doctor estimated I was functioning with only 30 percent oxygen capacity. I was literally a heart attack waiting to happen.
Ironically, it took getting laid off after Thanksgiving, 2007, which helped get me started on my current path. It started with the lay off notice which I received the Friday before Thanksgiving. I guess I knew it was coming because for the preceding month I felt at peace as I walked the office and thought of my time spent there. I had been there 13 years and felt I did right by the job and the job did right by me (that is not good English but it says it accurately reflects how I felt). While I was shocked to receive the notice, I wasn’t surprised. But I felt God strongly telling me He would be faithful to me if I demonstrated faith in Him.
That was evident as 2007 came to a close and 2008 began. After a series of transfusions and other tests it was determined I needed surgery to remove approximately 20 additional inches of my intestinal tract. I had the surgery February 27, 2008. I weighed less than 140 pounds at the time of this surgery. An ileostomy was performed which removed the infected area of my intestinal tract leaving me temporarily free from the disease. A week after the surgery; a week after eating everything put in front of me, I weighed less than 124 pounds.
Through intravenous feeding and resuming a normal diet, my weight returned, my energy level soared and I was able to live an active lifestyle again. A subsequent surgery was performed, a procedure called a colostomy which made the procedure permanent. I also contracted a blood infection which was interesting. However, by the grace of God; my family’s faith in Him; and, with the support and prayers of our family and friends I have been able to share my journey with others.
Apart from affecting my diet, the diagnosis and surgery changed the entire family. I had to be more conscious of what I ate, when and where. Family outings had to be well planned; travel became a logistical nightmare. The disease brought on a severe case of anemia which made lethargic and prone to cold spells. My wife would worry herself sick during flare ups. Our son was 15 when I was first diagnosed so in addition to being a teenager he had to deal with my illness. Simple tasks like going to the store or walking the mall could present major challenges based on how my body felt at that moment. During flare ups the abdominal pain could be so severe there were times I wish I had cancer - meaning no disrespect to any cancer survivors (my sister, Dora, is a three-time cancer survivor) or any one who has lost a love one to that disease. But with cancer there is a beginning and an end. You either beat the disease or you don't. That is not the case with Crohn's.
While I have been able to regain a more normal quality of life, I am not out of the woods. I am disease free for now but I can have a recurrence at any time. I have reached my limit in surgical options should the disease reappear. I now have short bowel syndrome which reduces the time I can digest food.
In spite of these challenges, God has been faithful. He has provided our family with repeated assurances He would take care of us and He has. Because maintaining a conventional job is no longer an option, the Lord has expanded my territory and creativity to work out of my home.
My health has increased to the point where I am training once again for a marathon this summer to help the Crohn's and Colitis Foundation of America (CCFA) raise money to find a cure. We would love for you to join us in our effort by providing financial support. For your convenience you can donate on line or you can send a check or money order to my home address at 9811 Cahart Place, Silver Spring, MD 20903. If you are sending a check or money order please address it to CCFA. Your donation is tax deductible. If you are unable to donate, please pray we will reach our goal of raising $20,000 and/or pass this on to others who may be interested in donating.
Any contribution you can make is important and will make a difference. Here are some facts for you to consider:
1. $30 provides a one year membership to CCFA for someone in need.
2. $50 provides educational brochures to 375 patients.
3. $100 funds a month of Information Resource Center translation services for all patients.
4. $300 supports a Camp Oasis camper in need for one day.
5. $500 covers six months of unlimited online chat support with Patient Information Specialists.
6. $1,000 will open doors to over 20,000 patients who receive our bathroom access cards.
7. $2,500 sends a child to Camp Oasis for one week.
8. $5,000 gives continuing education credit to hundreds of nurses attending CCFA's educational teleconferences.
9. $10,000 supports the development of Patient Education brochures.
No donation is too large or too small. Please feel free to provide us with any feedback you may have.
Monday, April 5, 2010
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