Sunday, December 30, 2012

My Irregular Journey...No More Crohn's Disease

It’s time for a change. I have decided to forgo traditional routes of disease control and to invite you along on my journey. What will follow is a series of posts about my journey with a holistic approach to disease control through excellent nutrition and self-care.

Here’s my story. This may take a little time so pull up a chair.

The problem: Crohn’s Disease. At least, that’s what the doctors have called it. Let me explain. In 2004, I was living overseas in China. It wasn't long until I started having a multitude of symptoms including stomach pain, internal bleeding, diarrhea, vomiting, night sweats, fevers, and weight loss. Several doctors said it was due to lack of sanitation and food standards in China. In essence, it was related to my diet. Symptoms continued, and I became more desperate. I flew to Hong Kong where a doctor officially diagnosed me with Crohn’s Disease (if you aren't familiar with Crohn’s Disease, read more about it here. That was 2005.

Let’s fast forward about a year. I had started treatment with a pill called Asacol, and it was moderately effective. I was buying tickets for my plane trip back to the US and planning my re-entry into American life. Before I returned to the US, my friends and I decided to take one last hiking trip into the countryside. It was a great trip, and the weather was great. On the last day of the trip, I woke up in excruciating pain in my hips and lower back. I could hardly move. The pain was severe enough to bring me to tears. Friends, I have a high tolerance for pain, but that was a kind of pain I had never experienced. I assumed it was an injury from the hike, but I couldn't identify what exactly had happened. I was barely able to walk, and after returning to my apartment, a friend who was a physical therapist came over and checked me out. She performed a few small adjustments, and the pain seemed to decrease over the next few days, though it never completely resolved. I dragged myself around with a cane and returned to the US in a wheelchair.

Fast forward again a few months. The pain in my back came and went with varying intensity for the next few months. I saw a doctor repeatedly with no diagnosis. X-rays, lab work, etc. . . . no help. I lived with pain killers and muscle relaxers. It was during this time that I learned some very important lessons about my health and medical care: I couldn’t just trust whatever my doctors told me, and I had to take an active role in my treatment. I also learned that I can’t be intimidated by doctors. Because it seemed that a diagnosis would take forever, and that the doctor seemed to be using a “guess and check” approach to treatment, I began to do a little research on my own. I discovered a condition by the name of Ankylosing Spondylitis (read about it here).

Now, I need to make a small disclaimer here. There is a huge difference between taking a responsible and careful approach to learning about health and medical conditions and applying that information to yourself, and taking a hypochondriac-like approach to self-diagnosis based on information pulled from the internet to identify the cause of symptoms. A doctor should always be consulted regarding your medical care, even after you’ve carefully researched your symptoms.

With that said, I took my research to my doctor and requested the blood tests necessary to help confirm my suspicions that my back and hip pain were related to Ankylosing Spondylitis. The result: a positive diagnosis of Ankylosing Spondylitis.

What followed after the result of these two diagnoses was several years of trying medication after medication to manage symptoms. If there was an anti-inflammatory drug, I tried it. Almost literally. My drug history included Remicade, Pentasa, Cimzia, Humira, Enbrel, Sulfazine, Mercaptopurine, Allopurinol, and Prednisone to name a few. In addition, I experienced a host of other medical issues as a result of some of these drugs, which included anemia, indigestion, high blood pressure, and sleep issues, all of which required a separate set of medications to control those symptoms (and this list doesn't include any of the possible long-term side effects, which includes various types of cancer). My super active immune system afforded me the opportunity to try so many medications because after about a year or two on each drug, I developed antibodies which reduced the efficacy of the medications. The other issue with many of these medications was the expense associated with them. Some of them can cost upwards of $5,000 per treatment, though I discovered that programs are available to help cover some of the cost of these drugs, assuming I had the energy and time to pursue assistance from these programs. In short, pharmacological intervention was moderately effective, yet extremely time consuming and financially straining.

Before I wrap this post up, I have to tell one more story because it’s so integral to my decision to try a medication free approach to treatment. In 2009, I was receiving one of the above named drugs for the treatment of my Crohn’s Disease when I started noticing a small cough. It was about December. My cough worsened, and I received a host of tests to determine the cause, none of which revealed any issues. Finally, during at CT scan, it was discovered that I had two tumors developing in my lungs. Surgery was needed immediately to remedy the issue and to obtain a diagnosis. By the time the surgery came in March, I could barely breathe and was on the verge of suffocating to death. . . literally. The surgery was successful in removing the tumors, along with a small portion of my right lung. Samples were sent to the local labs and universities, as well as the Mayo clinic for diagnosis. Cancer was ruled out quickly, which was a relief, but the diagnosis remained inconclusive for several weeks. Finally, the diagnosis came back as Granulomatous Inflammation of the Lung, an extra-intestinal manifestation of Crohn’s disease. Yes, essentially the inflammatory response of Crohn’s disease had invaded my lungs! In the years following this discovery, other organs were similarly impacted, including my kidneys. Now I see three specialists to monitor these issues, and undergo routine testing to ensure my symptoms are controlled.

These days I am stable, but of course, I am on some serious medications. However, due to financial limitations and concerns about the long-term effects of these medications, I am choosing dietary and lifestyle changes to treat the disease. While the doctors continue to call it Crohn’s Disease, the pervasive nature of the inflammation and the fact that other organs are impacted causes me to wonder if perhaps some other diagnosis may be more appropriate. Nonetheless, I have already experienced some relief from my attempts to control my symptoms through dietary changes. In the next post I’ll share exactly what you can expect from my updates, what diet I’m following, what I’ll be tracking and reporting, and some of my favorite vegan recipes.

Now it’s your turn. Have your dietary choices ever affected your health?

1 comment:

  1. Thanks for sharing. I will be very interested in following as your new lifestyle progresses. Praying for you and yours. Mom R


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