What does Crohn’s feel like?
Thursday, December 31 2009
It feels like an alien is about to pop out of your guts. You think I’m exaggerating? You have no idea.
Before I get to that, I want to clear my tabs in this last post of the year. First, you should read Bob Herbert’s op-ed about the Senate’s plan to fund health care by taxing “Cadillac” insurance plans. I was indifferent to this proposal, but Herbert makes a very good case for why it is wrong, and so I am now against it. We can only hope the mechanism is abandoned in the reconciliation process.
Next, this article from Tony Judt, about what it’s like to live with ALS is striking and moving – and especially resonates when he says, “it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.” I have often thought the same of Crohn’s, and I am sure it’s true of a great many other illnesses.
Lastly, back to Alien: I happened on Dan O’Bannon’s obituary in the NY Times over the holiday. O’Bannon wrote the screenplay for Alien, as well as several other horror and science fiction films. O’Bannon also had Crohn’s disease – in fact, the obit quotes him as saying, “the idead for the the monster in ‘Alien’ originally came from a stomachache I had.” I’ve seen Alien a half-dozen times, and now it makes perfect sense: how I’ve wished the monster gnawing at my guts would just kill me and/or scamper away.
Of course, most doctors will tell you that Crohn’s is incurable but not terminal – so it’s notable that the obit states, “the cause [of death] was Crohn’s disease.” That could mean any number of things, from surgical complications to sepsis to self-assisted euthanasia – there are a lot of ways to die from Crohn’s disease. But the fact that you might identify a proximate cause of death in no way changes the underlying cause of death; so when doctors say Crohn’s isn’t terminal, what they mean is that in theory you could live a normal lifespan, if you can just avoid all the different ways people with Crohn’s disease die prematurely. Props to whomever named Mr. O’Bannon’s cause of death for what it was.
Sad though Mr. O’Bannon’s passing is, I am at least grateful I can finally claim a movie for my disease. People with AIDS have Philadelphia, and people with ALD have Lorenzo’s Oil – but those of us with Crohn’s? We have frickin’ Alien – and that’s a pretty badass movie to have.
That’s it for 2009. See you in the new year.
Duncan
I am extremely impressed with your site! You are phenomenal in giving Crohn’s a VOICE! THANK YOU. I’ve lived with it for 24yrs now. I turn 30 in march. I’ve been on disability for years now, and can’t get my Crohn’s in remission.
on 9.24.09 I created a free non profit support network. It has evolved into something that is life changing. I’ve connected with and mwet so many others who are living with Crohn’s – or are a family member/friend of a patient. I was wondering if I could post a link to your site from mine? You are doing an amazing job for the Crohn’s Disease community. Please contact me at CrohnsDiseaseSN@gmail.com or CrohnsDiseaseSN on twitter.
Thanks again I look forward to reading more!!!
Jason Leitman -
Props? It’s misleading to say died from Crohn’s. Say died from ___ due to Crohn’s.
Jason – I’d be glad for the link. Thanks much.
Joe – I disagree; if the cause of death is ultimately due to the disease, then it seems more direct to say “died from Crohn’s”. If a person dies from an infection due to AIDS, it’s perfectly honest to say they died from AIDS. If they die from sepsis due to colon cancer, it’s perfectly honest to say they died from colon cancer. And if we tried to say otherwise, I think a lot of people would rightly suspect we were fooling ourselves.
But for some reason when people die from Crohn’s disease, the medical community feels it necessary to pretend that something else killed them, even if that something else is directly due to the disease – as if the pretense that Crohn’s can’t be life-ending is somehow helpful to those of us dealing with it. It’s not. As a matter of fact, I don’t even care all that much what the “_____” was for O’Bannon; the dude died of Crohn’s disease, and that’s all I need to know.