Among other achievements Aaron Swartz was a programming prodigy, internet pioneer and activist. He tragically died January 11, 2013 at the age of 26. This site is happily licensed under a Creative Commons which is an organization Swartz contributed to. This month New Republic has an article on Swartz which caught my eye. At the end of a paragraph is this sentence in parentheses: Swartz had a chronic bowel condition that sometimes crippled him with stomach pain.
Since I suffer from Crohn’s this made me curious. Did Aaron Swartz have Crohn’s, too? Ulcerative Colitis? The article mentions no more than “chronic bowel condition”. There’s no mention of a bowel issue in his Wikipedia entry but his blog does detail some struggle with abdominal pain. Let’s go over some clues in support of the hypothesis Aaron Swartz had IBD.
Clue #1: Aaron was only 26. It turns out that the average age for a Crohn’s diagnosis is 25 with the typical diagnosis coming between 15 and 30. The usual onset of symptoms is late teens and early twenties. I was diagnosed at 25 but I’d had problems for years.
Clue #2: He was Jewish. Crohn’s is prevalent among Ashkenazi Jews.
Clue #3: In the few articles I read about him he seemed to have reoccurring bouts of social withdrawal. I know Crohn’s flares do this to me. It’s typical behavior for someone whose physical disposition is unpredictable. It’s a polite way to not subject your friends and colleagues to your moody irritability due to chronic abdominal pain and the need to use the toilet with unusual regularity.
Clue #4: On the day he died his girlfriend reported that he wasn’t able to get out of bed. Given that his family said he wasn’t clinically depressed or on anti-depressant medication I’d guess he was suffering from fatigue. IBD patients usually don’t have the ability to absorb nutrients like normal people. Specifically in most Crohn’s patients the terminal ilium isn’t absorbing Vitamin B-12. Before I had a physician who tested my B-12 level I was diagnosed with depression and prescribed Lexapro. It did nothing for me. I didn’t suffer from depression – just fatigue – caused by years of not absorbing B-12. Before my B-12 injections I also had days when I literally couldn’t get out of bed and on a few occasions didn’t leave the house for weeks.
Clue #5: Picky eater & no alcohol. From what was described he liked very bland food. This is very typical of the IBD crowd. I used to survive on mashed potatoes and salmon. Among other dietary issues he was never associated with alcohol, at least in any article I ever read or on his blog. I’d imagine he hated beer. In a Crohnology poll Crohn’s sufferers ubiquitously find that a removal of alcohol from their diet improves symptoms. After a quick search of Aaron’s blog I did find a reference to NOT drinking alcohol.
Clue #6: This is directly from his blog: “I was deathly ill when I came back from Europe; I spent a week basically lying in bed clutching my stomach. I wrote a morose blog post in an attempt to cheer myself up about a guy who died.” His fictional story contains this passage: “The next night Aaron couldn’t sleep. He’d wake up, feeling searing pains in his stomach, as if the food winding its way through his gut had spikes and was tearing apart the walls of his intestine….He suffered like this for days, rolling on the floor in agony, unable to resist eating but every bite he ate causing him unimaginable pain. And still, he could not stop…. Five days in, it seemed like the worst had passed. The pains came less frequently, the pains were less intense. He actually slept that night.”
I identify with his description and there’s probably a lot of truth there about food causing bowel inflammation. The description could certainly pass as a Crohn’s flair.
Clue #7: This is from a blog post he wrote in November 2007 called “very sick”. ”Upset stomach: Huge pains grind through my stomach, like it’s trying to leap out of my body. Food is always followed by pain, followed by running to the bathroom. I’m afraid to go out because I wouldn’t want to get too far from a toilet. I’m always thirsty and the dehydration makes me angry and confused. At times the pain is excruciating and even after it goes I spend some time just reeling from it.”
That’s a classic description of IBD symptoms. Diarrhea induced dehydrated, constant abdominal pain, fatigue…
Clue #8 Nausea. In a blog post titled Eat and Code he describes eating bland food and having nausea.
Another consideration would be the effect of stress. Did his bouts of abdominal pain coincide with stressful life events? His legal battle with the justice department couldn’t have been helping the symptoms of whatever physical issues he may have had. From personal experience my worse symptoms spiked after extremely stressful life events.
IBD also tends to run in families. Directly from wikipedia: Siblings of affected individuals are at higher risk. I recall seeing a reference to Aaron having younger brothers which makes me worry that if the IBD hypothesis is right then they’ll be affected with similar symptoms as well. In fact I’d guess that with the tragic death of their older brother their experiencing a lot of stress which can trigger symptoms.
Unfortunately IBD is extremely difficult to diagnose. I did a blog post about a poll I took called What Was Your Crohn’s Misdiagnosed As? From that quick survey the average number of misdiagnoses is about 4. That means an IBD patient can expect 4 wrong diagnoses before the physicians get it right. Misdiagnosis can be a brutal experience.
A few years ago I had a dream about making a program that searched blogs and health related forums for descriptions of inflammatory bowel disease not yet diagnosed. In my imagination the next morning I named the idea Crohn’s Finder. I never built it. My reasoning was that searching your symptoms using Google is ubiquitous. I could be very wrong about. The descriptions in Aaron’s blog would’ve been exactly what Crohn’s Finder would be searching for. I’m sorry.