I've lived with Crohn's disease as an official for-real diagnosis since February 2001. I was a junior in high school at the time, and had been slowly withering away since roughly 1997. Typical gay melodrama aside, I did come very close to death before the age of 18, and yes, my life was forever changed once I learned that Crohn's was something that was not only going to be chronic, but that it was going to complicate and mess with my burgeoning sexuality in very interesting ways.
(Spoiler alert: I am now well versed in gay male sex and sexuality, and Crohn's is still a major factor in those aspects of my life and identity.)
Talking openly about disease is difficult. Many people who are woefully well-meaning frankly suck at being supportive and affirming of what it actually means to have an autoimmune disease. Your body is screwed up. It's mean and bitchy to you. In the cases of the two prominent inflammatory bowel diseases (Crohn's disease and ulcerative colitis), your body hates your gastrointestinal tract. In truth, it can hate your joints, your skin, your eyes, and various other things. But in laymen's terms, this means people living with Crohn's and UC have a very unique relationship with their bowels and the things that spew out of them (
taco tuesday vis-à-vis Chow Down, anyone?).
For me, and for some other gay men I know with either Crohn's or UC, this means that sex - bottoming, rimming in particular - can often be a very, very painful thing. And, I'm not talking a sexual newbie gaybie who's never taken anything up anywhere. I'm talking about inflamed rectums, hemorrhoids, anal fissures (deep, painful tears), and anal fistulae.
I currently take 17 pills a day, some of which are for Crohn's, and others are for other health issues I collect (a thoracic aortic aneurysm being the main one . . . and yes, that's a time bomb right about my heart). If I had a nickel for every time I was assumed to be HIV +, and then mistreated and maligned as a result . . . I would have a lot of nickels. To be clear, this is not to isolate HIV + gay men, or anyone living as pos or with AIDS. However, the stigma associated with HIV, because it is mostly something "caught" is unbelievably frustrating when my health issues and my myriad pills have NOTHING do do with something I caught. In fact, I have a hyperactive immune system, which is the polar opposite of what the HIV virus does to its host.
Anyway, this is why I'm blogging. More to come . . .
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This is the only picture of me from my 4 months at Nemours/duPont Hospital in Wilmington, DE.
This was post-op, and I was about ready to be released. I look pretty damn good considering I had nearly died a few weeks prior to this photo. Also, my eyebrows! Oy vey. April 6, 2001.
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