Today is #WorldIBDDay. I’ve been diagnosed with Crohn’s Disease since 2002, though I’ve probably had it a couple years longer than that. Despite periods of pain, running to the bathroom, diarrhea, long trips to the toilet, and what sometimes feels like very unproductive days because I’m in and out of my office chair, I consider myself pretty lucky. My case is quite mild compared to some people I know. I haven’t had to have surgery (yet), hospital visits for it other than for blood work and when my doctor was based in a hospital, or needed to have ostomy appliances installed. I’ve had to work from home more often than the average employee (thanks for your understanding, TicketNetwork!) and there have been times where, well, the bathroom just wasn’t quite close enough, but not anything worse than that. Not anything physically, anyway.
I don’t say this to put up a “strong soldier” face, I just know that others have it worse than me. Actually, there are some things I’ve long sought to change in my case. The worst thing for me in all of this hasn’t been the physical damage to my GI tract, or the constant bathroom usage, but the psychological cost. I’ve always tried to not let the disease get in the way of me doing things and going places, but sometimes I’ve caved in and let it. I’ve had to cancel appointments and decline invitations, and have closed myself off to simple things like a good walk, all because I feared I wouldn’t be close enough to a bathroom when it came time to go, if only because there’s nothing worse than having to gingerly make your way back to the dorm/apartment/condo.
So I was very happy to post this two days ago on Facebook:
Go big or go home. 3.09mi! Went from my place all the way down to near my old apartment in downtown and back. It was great but I think my feet are going to punish me for it.
Took a short breather in Center Park, and it’s looking pretty nice.
Most people who regularly run would consider this their morning workout, but for me it’s an achievement. That’s because not only is it great exercise (which I need more of in any case), but because it’s the first (well, second, but first intentional) time I’ve taken such a trek alone. I’ve walked about as far before with others, but never by myself, because I was afraid of not being able to find a bathroom. Granted, my walk wasn’t exactly the most brave one – I went to downtown Manchester, which has places I theoretically could have tried if necessary (though, it was a Sunday, so not as many open places) – but there were plenty of places things could have gone south, Crohn’s-wise. Instead, it went splendidly.
Psychologically, I think I’m a better place now than I have ever been before. I think this is largely because I’m taking better care to eliminate those things which might aggravate my symptoms. That was not walk I could have taken ten years ago, or even a year ago, without a lot of worry. Now I’m working my way toward not giving it a second thought. Well, with some preparation, anyway.
My goal on this day is simply one of awareness. There are those of us whose disease isn’t visible, but which has a physical and (likely) psychological cost on the inside. I’m optimistic for a cure within my lifetime, and I’m hoping this kind of campaign can draw more attention to it, and frankly, any other disease which sends people to the bathroom a lot.
Check out the CCFA.org website if you’re interested in reading more about Crohn’s and its sister diseases Ulcerative Colitis.