Coping | IBD | Ostomy
IBD is not genenerally considered a sexy disease. People don’t want to talk about how many times a day they poop, the consistency of their poop, or the amount of blood in said poop. Mostly, ‘cause it’s not sexy. It’s not empowering. It’s private, and society tells us, it’s embarrassing. Well, after a decade plus of living with IBD, getting guts ripped out and reapportioned, I say, screw that! I’m no longer embarrassed by the number of times I poop or the consistency of the poop. I wear my surgery scars like a badge of honor and have learned that when you’re not dealing with vapid teenagers and after your brain fully develops at 25, most people are pretty understanding about this stuff, are not grossed out, are impressed, think you’re a badass/bionic medical wonder, and I agree. I am a badass.
Dealing with this stuff isn’t easy, and I haven’t always had this perspective. When I was diagnosed with UC at age 16, I was in a hefty amount of denial. I received a scholarship for college that was somehow related to my disease, overcoming adversity, some crap like that. I hadn’t applied for it, I hadn’t asked for that “honor” and I didn’t go to the award ceremony because I didn’t want everyone to pity the sick smart girl. Did I take the money though? Hell yes I did! And I got a 4.0 until my UC became ever-angrier my sophomore year. I stayed in bed, I slept in the bathroom floor, I drank and “ate” fluids because that’s all I could stomach. My amazing dog was there for comfort and support the entire time. I had friends in and out of my apartment bringing me necessities like toilet paper, Gatoraid, Rx’s, and whatever herbal remedy I was desperately trying at the time.
I wasn’t dating then because I had no life outside my bathroom and my bed. Once I got to the doctor and got loaded up with new Rx’s, Prednione, then ballooned up from said Prednisone, I felt better gut-wise, though I was still crapping blood. But, the side effects of that drug did not instill confidence. It made me pudgy, sweaty, hungry, and batshit crazy. However, I did get introduced to a man during this time and although I knew fundamentally, we would never work long-term, it was nice to have companionship. I was honest about my disease, drugs, etc. and he seemed unphased. He was supportive throughout the first surgery, and although I was never crazy about him, there was honor in his steadfastness. I ended it after the first surgery, not because I had an ileostomy and a bag. His mother was a nurse and he was vocal about how little it bothered him. He even said, “I’d change it for you it you need me to.” It was then that I realized this relationship was mostly one-sided. I wasn’t crazy about him, and I figured out that if you offered to change someone’s ostomy-bag for them, it must be love. It was a hard thing to tell someone it just wasn’t working when they offered that level of support, but I’d always been honest with him that I didn’t want anything serious, and when it became clear that he did, I had to move on, for both our sakes.
After the first surgery, my confidence took a weird turn. I was thinner and felt more like myself after I was able to stop taking Presnisone. I dropped probably forty pounds, got a sexy new wardrobe and strutted my ass around campus. Boys started flirting with me again, and I even forgot about the bag I had glued to my abdomen to catch my feces. Still, I wasn’t keen on dating with it. I just felt like that was a lot to explain and expect on a first date. Besides, I had two more surgeries to go and that wasn’t something I wanted to introduce to a new relationship. So, I stayed single, but I worked out, got a contract job, went to summer school, and lived-life till the next surgery arrived. The second one was really hard and I lived with my mom for a while after it. Takedown was a relative breeze and, I’ll admit, I was relieved to have the bag gone. Not because I was ashamed of it, but because it was just easier. It was easier to date, I could be a chameleon if I needed to be, but soon my Crohn’s reared its ugly head and on dates I’d run to the bathroom 10 times in a night, not knowing that this was not “normal” newborn J-pouch behavior. After my 6 month post-op check up, my surgeon discovered a really bad stricture. After several office dilations, we decided the scar tissue had to be broken up surgically. While my surgeon was “in there” he noticed that I had ulcers and inflammation above my pouch. Meds were started in hope that this was just “really bad pouchitis”, but when I was scoped again by the head of the IBD Center, a Crohn’s diagnosis was made. My whole world crashed around me, and I was sick again. I started meds, and they helped some, so I got back to my life.
I met new friends at work, and through one of them, a cute younger guy named Rob. We really hit it off, but he was just in town for a year-long internship, so where could this go? On maybe our 5th date, he asked me to tell me something about myself he didn’t know. The obvious answer was, “I have a neo-organ and Crohn’s disease,” but that seemed like a lot to tell someone who was a fun summer fling. But, then I thought, “No, I’m selling myself short, I’m selling him short. I’m going to go for this and be honest. It’s true, it’s the most obvious answer. I’m doing it.” So, I told him. I started out slowly and he asked more questions. He didn’t go running for the door saying, “Woah, lady, this is WAY more than I bargained for,” he looked at me, right in my eyes and said, “You’re so brave.” Then, bingo. I was like, “Okay, this guy is different. Even though he’s younger, he is wise and kind, and THIS is the kind of person I want in my life.” We’ve been married two years in June. We talk about everything butt-related. He’s slept with me in my hospital bed, fed me chicken broth, he finds awesome deals on bulk toilet paper, and still thinks I’m the sexiest woman in the world. I know by the way he looks at me, and because he tells me so multiple times a day. So, blessed? Lucky? Yes I am. In this department, anyway.
Confidence is what we make of the stuff we’ve been dealt. Do people look at my scars when I wear a bikini or go skinny dipping? Yes, but they aren’t bad, and I’m proud of them. They remind me what I’ve been through, and remind me that there’s a better way to look at this than, “Why me?” Do I still ask myself that sometimes? Of course I do! But that’s just when I’m having a flare and things gets momentarily turned upside down. The truth is that I’m much more than a chronic disease and some missing parts. I’m a funny, attractive, smart girl with a great sense of adventure and perspective like you would not believe. So, if anything, IBD has made me more confident because it’s made me realize more than anything that superficial crap doesn’t matter, and that attitude is everything. The way I strut around with that stoma scar, no one could say, “She’s not sexy.”