**This is a re-post from The Girls With Guts website that I wanted to share here as well!**I’ve always been a VERY open person. I took pleasure in seeing what kinds of conversations would gross my co-workers out the most (particularly at lunch time), never held back when describing what sort of virus I had (and the color and texture of the phlegm associated with it), and openly pondered all sorts of things I would love to examine under a microscope (bodily excretions being my primary focus). It’s not really surprising, actually. I’ve always been interested in the human body and how it works and what it produces. Medical school was on one of my early lists of goals created in a middle school composition course. I never went to med school, but because of my IBD and now my ileostomy, I know more about the GI system than most non-GI doctors and nurses.
I’ve told you all of this because recently a fellow IBD activist asked a group of us when our “Screw it…I’m going public with everything disease-related and people can think what they will,” moment happened. I had to think about this one pretty hard because I wasn’t sure I’d ever had that moment, given how open I am about everything. After thinking about it for a week or so though, it came to me:
I started experiencing symptoms of Ulcerative Colitis in February of 2009. I had recently added ground flax seed to my diet each day and noticed a lot of blood and mucus in my stool, urgent bathroom trips, and strange stomach noises. I cut flax seed out of my diet but nothing changed. I tried natural supplements, yoga, meditation, and increased exercising all in an attempt to solve the problem. Instead, my symptoms worsened. I finally told my then-boyfriend (now husband) and parents what was going on and they flipped out and forced me to see a physician (I’m not known for being a big fan of doctors). I was referred to a GI doctor near my home. He immediately set up a colonoscopy for me and a few days later he found that I had moderate UC.
As soon as I had my diagnosis, I returned to work the next day and filled my co-workers and bosses in on what was happening in my butt. I think I even showed the scope pictures to a few of them. So, I guess you could say that was my screw it moment? I’m not sure if that qualifies. I’d imagined it to be something more dramatic or entertaining.
But then I got to thinking, maybe I should consider my “screw it” moment to be when I decided on my own to return to a temporary ileostomy almost two years after my total colectomy and j pouch surgery. There were people in my life who didn’t understand why I’d want a bag on my side or why I didn’t want to try more and more medications and I’ll be honest – I almost felt bad for “disappointing” them by choosing an alternative lifestyle. But I spent a lot of time thinking by myself and I’m fairly certain I said to myself, “SCREW IT. SCREW what they think, though I know they mean well. SCREW feeling bad all the time. I’m going back to an ostomy because when I had one before, that was the ONLY time that my butt and my body felt good.” I drove to my surgeon and set a surgery date immediately. I made my ostomy permanent two months after that and I still have yet to regret my decision.
In fact, since I’ve had an ostomy again, I’ve made it a point to support, educate, and raise awareness for IBDers and ostomates everywhere. I started my blog (Full Frontal Ostomy) and Facebook page (My Doctor Knows Me Best From Behind: Ostomy and IBD Support), I attend local support groups for the CCFA and UOAA, I became a certified ostomy visitor and am the newsletter co-editor for our UOAA group, and I participate in 5ks that aim to raise money for IBD/ Ostomies/ and Colon Cancer. There’s a bunch of other stuff too, but this isn’t the place for my resume.
Basically, for me, my “screw it” moment happened when I realized what was best for me and that if people didn’t want to support my decision, then they didn’t need to be in my life (I’m very well known for having a “scorched earth policy,” and I’m damn proud of it because it keeps toxic people out of my life). Fortunately, everyone respected my choice and stuck by me and the new friends I’ve gained as a result of my openness are friends that I know I’ll have until my last breath.