Monday, September 7, 2009

Guest Post - Part 1 of 2: Mark’s Battle with Crohn’s Disease

This post is part of a two part series, written by a guest blogger (who happens to be my husband) Mark.

Part 1 of 2: My Battle with Crohn’s Disease

Part 2 of 2: Beating Crohn’s Disease and living symptom free

At the age of 23, I developed my very first unusual intestinal discomfort. My lovely fiancée of one day and I were traveling up to Page, Arizona, on the Utah-Arizona line, taking in absolutely beautiful cave networks and natural geological wonders . The previous day I had slid the engagement ring onto Megan’s hand as the sun set over the Grand Canyon. In the caves of Page, I developed an excruciatingly-sharp pain in my stomach. Fortunately for me, the pain lasted only about two hours, and I have never before experienced the same degree of pain.

Several months later, I began experiencing unusual amounts of diarrhea. I knew something was wrong when I began bleeding, and eventually I saw a GI specialist and had a colonoscopy. From the results of my colonoscopy, I was found to have inflammation in my colon, also known as ulcerative colitis and/or Crohn’s disease. My doctor told me that Crohn’s disease was a chronic disease, meaning that there was no cure, and that I would likely have to deal with this for the rest of my life. My doctor continued to tell me that my risk for colon cancer increased markedly, and I was told that I would likely die of some intestinal-related disease, likely colon cancer. This was not exactly the news I wanted to here.

I had nearly always been an extremely healthy and active guy up until that point in my life. I played every sport under the sun. I had above-average speed running down the soccer field, above-average three-point shooting on a basketball court, and was 1st team All-Star on my high school tennis team. During my summers I taught tennis, and later proudly became certified to teach tennis by the USPTR. I prided myself in being healthy, in-shape and involved with sports my entire life.

In my worst periods of illness, I used the toilet as many as 10-12 times daily. Unfortunately for me, I passed a good amount of blood each time I used the bathroom. I began losing weight, and went from approximately 175 pounds to 158 pounds. At 6 foot 2 inches tall, 158 pounds was not a weight I was happy with to say the least.

This illness continued for weeks, then months at a time. After several months of weight and blood loss, I developed arthritis in my hips. Walking became painful. I recall one day I went to the YMCA for a workout and remember being really stiff. I hit the exercise mat to do my normal routine of stretching before I ran. I experienced sharp pain in my hip joints that I had never experienced before. This was not about muscle soreness. Was I really becoming arthritic at the age of 24? Was this even possible?

I told my nurse practitioner and my GI medical doctor about my arthritis, and they were extremely surprised by my claim. “Arthritis has nothing to do with Crohn’s Disease” they each told me. I couldn’t help but question their logic. I had been bleeding for six months straight, had lost almost 15 pounds, was losing a tremendous amount of nutrients, and had never before in my life experienced arthritis - and my doctor was telling me that my Crohn’s symptoms and arthritis were not connected at all? My doctor encouraged me to increase my dose of my anti-inflammatory drug called Colazol. He then told me not to worry – that if the increased dosage of Colazol didn’t work, he could put me on steroids, and the steroids would control my flair-up. Somehow, I didn’t like where he was going with this. Using steroids and becoming like Barry Bonds was not something I wanted to try.

Things continued to get worse for me. My arthritis became so severe that getting into and out of bed was extremely painful for me. My extremely loving and patient wife, Megan, woke up nearly two hours earlier with me every morning to help me get ready for work. Megan applied a heat pack over my hips, and 20 minutes later, I developed the ability to lean up in bed, move my legs across my body, and begin to take steps into the kitchen. A couple of Tylenol helped the cause, and a hot shower quickly followed. With the help of Megan, about 90 minutes after my shower I was out the door and off to work.

At the time I took the boat ferry from Hingham, MA to Rowes Wharf, Boston, right outside the financial district. I was quite embarrassed to walk up and down the boat ramp, because it took me forever to walk up and down the ramp. Normally a 10-minute walk from the Wharf to my office, it took me 30 minutes. One foot in front of the other, slow and steady, don’t stop … keep going!

I experienced the severe arthritis for about four to six weeks straight. In this time of hellish desperation, I learned a few invaluable insights I’ll never forget:

  1. I am not invincible (contrary to what many other 20-year old men think).
  2. I developed an awareness and compassion for the disabled and all those with arthritis.
  3. I became humbled by my inability to walk correctly and get up out of a chair or a bed.
  4. I became humbled by my frequent trips to the stall, bleeding and weight loss.
  5. I learned that it was unacceptable for me to live like this, and I would search as long as I needed to in order to improve my quality of life.

My wife and I have since been on a journey to determine how to manage my symptoms of Crohn’s Disease. Better yet, I am currently searching and hoping for a cure for Crohn’s/Colitis. Approximately 10% of all Americans suffer from Crohn’s/Colitis (also known as Irritable Bowel Disease – IBD), Irritable Bowel Syndrome (IBS) or Celiac Disease. The number of undiagnosed people is high. Typically talking about bowel movements is not exactly the hot topic around the work water cooler.

While I was sick, my wife “randomly” attended a conference for work. Megan taught English at an inner-city Christian school in Boston. For work, Megan attended a Christian Conference where her school set up an exhibition table in order to spread the word about her school and increase attendance. Megan meandered about the exhibit hall, and someone reached out and handed her a book titled The Maker’s Diet, written by a man named Jordan Rubin.

Like most free books, this one got tossed in the corner of the book shelf. One day while sick at home, Megan opened up the book and learned that the author had nearly died of Crohn’s/Colitis several years before he wrote the book, lost 76 pounds (from 180 to 104) and was deemed a “dead man” by the nurse that was caring for him. Rubin stood 6’1 inch and weighed 104 pounds. His story is abbreviated here:

Like me, Rubin was disappointed in the medical care that he received by his medical doctors. Like me, prescription drugs were not working for Rubin. Drugs only made him worse, attempted to mask and manage symptoms, rather than try to identify the root cause and actually aim to provide the body with what it was lacking, rather than chemically control symptoms. He went from one drug to another, continued to lose weight and nearly died at the age of nineteen.

Rubin, born of Jewish descent, went on his own journey and looked to the most published book of all-time, the Bible, to seek out what God commanded the Israelites to eat. For example, in Ezekiel chapter 4, verse 9, God commanded Ezekiel “Take also unto thee wheat, and barley, and beans, and lentils, and millet, and spelt, and put them in one vessel, and make bread of it...” In Genesis chapter 1, verse 29, God said “Behold, I have given you every herb bearing seed, which is upon the face of all the earth, and every tree, in which is the fruit of a tree yielding seed; to you it shall be for food.”

Rubin then went on to discover a whole new world of “alternative” diets and “alternative” literature on diet and health. As an example, Rubin discovered a family-owned specialty bakery out of Glendale, California that launched a business called Food For Life. This bakery had been baking what they call “Ezekiel bread” for over 40 years based on the aforementioned Scripture from the book of Ezekiel. I do not benefit financially by endorsing their products, but I do highly recommend them. They use high quality, largely organically grown grains and seeds, and sprout them to maximize nutritional value through enzymatic action and germination. For more information on Food For Life and their products, click here:

Back to my wife – after reading Rubin’s book, Rubin referenced many of these “alternative” types of literature that address the importance of proper nutrition. These books even go on to say that proper nutrition can greatly reduce inflammation and disease. In fact, the books’ premises are largely based on the notion that increased levels of disease and cancer in the 20th Century have been caused by a massive shift in our diet. Rubin’s bio is included here:

Now that you know more about me, in my next post I will detail what I do to manage my Crohn’s symptoms. While I was greatly sick in the beginning of my diagnosis for Crohn’s, I have learned a great deal of information that I want to pass along to everyone that has battled a similar battle as me. I am now sick much less, and most of the time I am healthy and free of all Crohn’s symptoms and pain. From my sickness, I have learned to walk in humility and know that I am grateful for each and every day that I am healthy. I thank and credit God for my health, and for giving my wife and me a passion for helping people affected with digestion issues and irritable bowel issues. And without my wife, I would likely still be sick today. Thanks Megan – what would I do without you?

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