Friday, July 22, 2011

My Crohn's Experience: From Sulfa to Humira

My Crohns History:

  • 1972: After a wonderful trip to Yucatan, Mexico I came home with severe abdominal pain, diareah, low grade fever that simply would not go away. I spent many afternoons doubled-over in pain.
  • 1972: After several tests by my doctor, I was referred to a Gasrtoenterologist who after doing more tests diagnosed my problem as Crohn's Disease. I had never heard of this before but it soon became central to my life.
  • 1972-1978: Tried the typical medications of the time such as azulfidine, prednisone, asacol which helped somewhat, but I can't remember ever having a totally pain free day. I remember at the age of 16 pulling over to the side of the road to let the pain subside and praying for "just one pain free day in my life".
  • 1979: First intestinal resection
  • 1981: Crohn's has remained in remission since the first surgery, but now my gall bladder has problems.
  • 1982: Gall Bladder removed
  • 1983-1988: Periods of remission broken up by active disease and hospitalizations nearly every 3-4 months due to intestinal obstruction caused by Crohns and scar tissue.
  • 1989: Second intestinal resection
  • 1990-1999: More periods of remission broken up by hospitalizations due to increasingly worse obstructions.
  • 2000: Severe pain and obvious obstruction. Intestine bursts while I am on a business trip and the sepsis nearly proves fatal. Long stay in the ICU and the hospital before returning home to recuperate. This was my third intestinal resection and probably the worst time of my life. While in the ER my heart effectively stopped working and required two periods of CPR to bring back a normal heart rhythm. 
  • 2001-2010: Crohn's Disease stays predominantly in remission with only a couple of hospitalizations due to obstruction. I no longer have enough intestine left to sustain proper digestion should the disease come out of remission. Since the pattern for me has been surgery followed by 10 years remission, the doctor recommends that I start on the new biologic medicine from Abbott Labs called Humira.
  • 2010-Present: Humira has been effective and I have had almost no incidents of Crohn's Disease flareups for the past two years. I take a Humira injection every other week.
And that's a brief history. I intend to post details and experiences randomly in my posts on this blog and I welcome questions and discussions regarding anything Crohn's related.

Thanks for reading!

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My Crohn's Experience: Introduction

My Crohn's experience started when I was diagnosed with Crohn's Disease at the age of 15, during a time when very little was known about this debilitating illness, and drug treatment options were few. In this blog I would like to recount my nearly 40 years of experiences with this illness; the good, the bad, and the ugly, and discuss current medications available to treat Crohn's Disease, such as Humira, Remicade, 6-MP, Prednisone, and others.

Crohn's Disease is classified as an inflammatory illness which is caused by the body's immune system attacking healthy cells in the intestinal tract, which can lead to intestinal blockage, rupture, sepsis and death if left untreated.

I have had three intestinal resections due to Crohn's Disease and the last nearly cost me my life. I say this not to be dramatic, but to raise awareness that ignoring symptoms can lead to serious consequences. In 1999, I had what I knew was a serious flareup, but instead of checking into the hospital for treatment, I tried to ignore my symptoms. I ended up in the ER with a 105 degree fever, semi-conscious from septic shock, with a heartbeat in lethal arrhythmia and requiring CPR. My intestine had broken open and the septic shock had set in. I spent four days in the ICU after having major surgery to repair my intestine, followed by IV medicines to fight infection. The doctors did not expect me to survive the night, but somehow I did, and I share all of this in order to tell you that if you suspect something is wrong, and you have a high fever and severe abdominal pain, RUN, do not walk, to your local ER. Call 911 if necessary, but definitely do not take chances. Get to a hospital pronto!