Where Did I Go? – Regaining Substance


What made you “you” before ulcerative colitis? The disease strips away the bulk of who you are—what you like to do and when you do it, what you eat and drink, who you socialize with and how often, what dominates your conversations, right down to how you feel (and I’m not talking just about feeling sick) and how you regard yourself. I thought I’d managed to retain a chunk of the “old” me, or at least, had invented a “new” me, until I realized that lately, all I am is this stupid disease despite doing everything not to be.

The eye-opener came today, as my husband was dropping me at the T so I could make two morning doctors’ appointments. Our discussion, in brief, was me telling him he hadn’t communicated his graduate school schedule with me, and he responded well yeah, he hasn’t had the chance because all of our conversations have been about me and colitis. Fear not, this isn’t going to turn into a couples therapy rant. Gross over-generalization on his part, yes, but what it highlighted was despite the fact that (in my head) I’d been pointedly focusing on his news—his projects, his day at work, his return to playing saxophone—so that everything wouldn’t be about me, all he was hearing (and likely also thinking about) was ulcerative colitis.

And of course, how could he not be? Our lives revolve around it now. If it’s not me reporting on such gripping news as the occurrence of yet another new doctor’s appointment, the state of my latest BM or how much I weigh today—which gets tedious just rolling off my tongue, I can’t imagine having to listen to it—then it’s him constantly nudging for his own updates: When’s the next Remicade treatment again? How are you feeling? Do you need me to pick up anything? Which meds do you take (today)? Would you feel like at least trying to go to her party? You bought another pair of leggings—what’s wrong with the six pairs you have?

I feel like I’ve gone from being his wife—an interesting, active woman he’s attracted to, whom he considers his best friend and partner in crime—to some shadow of my former self. A shadow he’s required to keep tabs on because, unlike Peter Pan’s shadow, my shadow’s kind of trouble is medically significant, it’s anxiety-inducing, it’s sucking up the time we have reserved for each other and for fun things. It’s a drain, basically, and our former lives are swirling around it.

Grim analogy? Perhaps, but it’s the truth. You might not believe the posts I see in forums, such as the one on the Crohn’s and Colitis Foundation of America site, unless you’re suffering yourself or visiting those communities. People are posting they are “shattered” by their diagnosis, what they’ve already lost from their lives, though some are just months (and I say “just” but I’ve read about others flaring for years) into their first flare. Some of the worst, those dealing with this for 20+ years or who were struck by an extreme form of the disease, come straight out and mention suicide. Some of those writing give their ages, and they are 21, 25, 30, 40. Women spanning the entire age spectrum are pleading for others to help them with their body image struggles as their weight (and consequently self-esteem) yo-yo. (Hell, I have pants ranging across 3 sizes in my closet right now). On the Great Bowel Movement’s “Flush My Secret” page, people post confessions such as because of their IBD, their husband left them for another woman, or they feel they’ll be alone forever because nobody would want to marry them now. Isolation and loneliness are common themes, and it’s because the real bitch of IBD is not what it does to you, but what it takes away from you.

I guarantee you not one of those people posting was like this pre-UC. They are now also shadows of their former selves, and shadows don’t have substance. So how do we become real people again, and not poster children for a miserable bowel disease? By first realizing that though they may seem flushed, our “old” lives and our “old” selves are still very much alive and kicking. Well…maybe alive but hibernating is the better term. And once the flare goes into remission and we come out of stasis, things are going to be different. We’re not going to roll over for UC (or Crohn’s), but we’re going to have to make modifications to accommodate an important little goal called “Trying Not to Flare Ever Again.” (Hey, I read somewhere that if you’re not scared by your goals then they’re not big enough, and flaring a second time scares the s**t out of me! I’ll scale the impossible to try and keep it away forevermore.)

Anyway, what I’m saying is, whatever it is for you, so long as it’s not going to send you into the hospital or kill you—if it makes you “you” again, try and reconnect. Try to get out to that movie, or at least to a store. Try and get over a friend’s house and just bring some air freshener or snacks that you can eat. In fact, if you’re feeling especially brave (or defiant) try to eat something that you haven’t for awhile. Or, if you absolutely can’t return to your old ways, drum up some new substance. Reinvent yourself. Your life has been flipped on its head, why not embrace change? Help the pendulum swing the other way, be whoever you’ve always wanted to be but never dared. Go dark and Goth if you have to. Write moody poems, wear black (safest color for us aside from oxblood, as I’ve said) and listen to Rob Zombie. Get that tattoo (though be careful if you’re on an immunosuppressant—maybe plan your future tattoo and wear falsies like you don’t care who thinks you’re a poser). In fact, don’t care what anyone thinks. Talk openly about your disease. Make fun of it. Stop imposing more isolation than what already comes with this beast. Because you know what? You’re more than this bloody illness. It’s a fractional part of a better and greater whole. You are many things, and you can be anything you want, and handle this any way you want. Me personally? I’m embracing it creatively. I’d like to think of myself as being sort of a reverse vampire—my concern with blood is the antithesis to ingesting it however I could use more of it, I’m pale, cold and anemic, overall I can’t eat much in the way of real food, and I don’t sleep. That’s just fierce. In fact, that’s substantative.