Crohn’s Disease Case Story in a Nutshell

In a nutshell: I was diagnosed with Crohn’s disease at age 25 in the summer of 2001 while living in Chicago, IL. My symptoms had started years earlier and my attempts to get help were stymied by a handful of misdiagnoses by general practitioners and emergency room physicians. My pain was in the lower right quadrant of my abdomen and among other issues I suffered from backaches, chills, fever, diarrhea, nausea, dehydration, fatigue, anemia,  bloating and there was at times golf ball sized lump where the pain was. My first prescriptions for Crohn’s were Flagyl (metronidazole), Levaquin (levofloxacin), prednisone, and Pentasa (mesalamine). This combination led to drug induced psychosis. I was admitted to a hospital’s psych ward within 3 weeks of starting the drugs. I was taken off the first set of drugs and started on Remicade (infliximab) together with Imuran (azathioprine). This combination of drugs worked well at first but slowly lost efficacy after about 5 years. All my original symptoms returned and the fatigue was considerably worse. In the winter of 2007 I had a double bowel resection involving my terminal ilium and small bowel. My gallbladder was also removed. Remicade was last administered in the fall of 2006 but I continued azathioprine. In 2011 I moved to Fort Collins, CO and started eating an anti-inflammatory diet and exercising regularly. I ate only vegan smoothies for about 3 weeks and tapered off azathioprine at the same time. Symptoms such as achy joints and fatigue, which were previously though to have been Crohn’s symptoms, cleared up directly after the withdrawal of azathioprine. My diet now consists of a low gluten, low sugar, mostly vegan diet. I have minor side effects from the surgery but I haven’t experienced symptoms of Crohn’s in almost 2 years. I haven’t taken any prescription medication since summer 2011.

If I could do things over I’d have started an anti-inflammatory diet as soon as possible. If that wasn’t enough to quell the symptoms I would’ve requested surgery. Proceeding with surgery first would’ve saved me from years of fatigue, pain, and exposure to drug side effects. The direct dollar savings from a surgery first approach would’ve been approximately $280,000.

The following is a set of visualizations related to my Crohn’s experience starting in the summer of 2001. All the charts have the same time scale so parallel comparison is encouraged.


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Posted in A Crohn's Disease Story, DIY Electronic Health Record, e-Patient Community Research.

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