Crohns: An Origin Story

I remember it vividly…the night Crohns came knocking, seemingly out of nowhere. Looking back a while later, I’d realize there had indeed been warning signs, but I’d been blissfully ignorant of what they meant, so I’d written them off as nothing.

Content warning: poop…it’s Crohn’s disease, so the cookie’s usually gonna crumble that way.

Also, sorry if I just ruined cookies.

So, Crohns’ grand entrance into my world. It’s late summer 2009 and I was driving back to my mother-in-law’s house from the Boondocks, Western KY. I’d been helping her daughter move and it was late. As in, everyone-was-sound-asleep-when-I-got-home late. This would prove to be the only real relief I got that night.

I was on a road in the middle of a field somewhere way outside Madisonville, KY, alone and in the dark, when suddenly I really needed to go to the bathroom. I remember there was a raccoon. I had about 5 seconds to process that fact (the bathroom thing, not the racoon) before…well, I didn’t need to go to the bathroom anymore. In less time than it took to think “WTAF?” or “Oh, raccoon!” I completely lost control of my bowels. At age 30. With no spare clothes in the car.

It’s a testament to how much I was in shock that I wasn’t immediately concerned about my health. I was just worried about how I would get in the house and get clothes in the washing machine without having to explain myself. Not because she wouldn’t have been sympathetic, but because I was not ready to have that conversation. Or any conversation, really. I was a grown-ass woman who had just shit herself. I had NO idea what was going on, but I knew that things were not OK on a whole lot of levels.

Thankfully, I was able to sneak in, shower, and start a load of laundry without further incident. I went to bed and hoped it was all a dream. Imagine my disappointment, then, when I woke up a few hours later and found my clothes in the washer, all waiting to be dried and reminding me of my literally-shitty new reality. I somehow managed to tell my mother-in-law what was going on, who made me call my sister-in-law, who then marched me straight to the emergency room (thanks for that, if I didn’t say so at the time!).

Pro-tip #1 if you have a chronic illness: the ER is a great resource if you have a broken bone or severed artery, but most of them have NO idea what to do with “I have uncontrolled bleeding…and other stuff…coming out the back door.” Ditto for severe pain occurring in any place they can’t actually see. They gave me a Xanax and told me to call my regular doctor. Thankfully my regular doctor—who had diagnosed me with rheumatoid arthritis two years prior—was a bit more helpful. She referred me a specialist and told me to get home ASAP.

I had a similar out-of-bathroom experience on the long drive from Madisonville back to Georgetown, except this time I was at least prepared with supplies and fresh clothes. That was a fun 20 minutes in a truck stop bathroom with a just-turned-5-year-old, let me tell you! It was then a few weeks of going back and forth with the specialist while they tried, extremely unsuccessfully, to get things under control without hospital intervention.

That first night in Western Kentucky was the first weekend of August. Things got so bad so quickly that I barely remember my mom coming to see me on my birthday less than two weeks later. I lost thirty pounds in three weeks. I literally couldn’t eat—when I tried, I would suffer black-outs from the pain and spend so much time on the toilet that I had bruises on the backs of my thighs from the seat. It was nothing but blood, because I wasn’t eating enough to create any waste. I had one snack-sized cup of apple sauce per day, just to get my medicine down. That was it. For over three weeks.

I was losing my grip on reality at this point, and the proverbial shit finally hit the fan when my mom and then-husband spent hours trying to call me, but I didn’t pick up. I was home, and awake, and had my phone…but I never heard it ring. The husband startled me out of my stupor when he ran in to make sure I hadn’t died while he was at work. I’m pretty sure my mom then called and Karened the doctor until he agreed to admit me to the hospital. When he said, for the fortieth time, “let’s give it another week,” she made sure he knew that I did not in fact HAVE another week. I don’t think I could speak in complete sentences at that point and I was unconscious way more than not.

I spent thirty days in the hospital, where they diagnosed me with Crohns and started me on immunosuppressants in the hope of avoiding surgery. It didn’t work. I would come out with half the large intestine I went in there with, a fun new hole in my stomach, and a Colostomy Starter Kit© with samples of different “appliances.” That’s what doctor’s call colostomy pouches, because I guess it sounds more discrete and dignified than “crap bag.” I pretended the squarish tote contained a toaster instead of medical grade plastic and glue that I would be wearing for the foreseeable future (spoiler alert: foreseeable future = forever).

My time in the hospital was mostly a blur of dilaudid and needles, but I remember waking up from the surgery with absolute clarity, for one reason alone: it was the first time in nearly two months that I was in NO pain. I mean, I had a giant incision from my lady bits to my navel, but my INSIDES DIDN’T HURT! It was magic. I called home just to say hi…then I passed out from pain meds in the act of drinking a glass of water and dumped it all over myself only to wake up and marvel all over again that I wasn’t in any pain! Just wet and cold and slightly embarrassed.

Actually, no. When you’ve shit yourself twice while driving and had to tell people about it, then spent a month in the hospital in a backless gown with a million people checking out your ass, you don’t really get embarrassed about much anymore. Especially spilled water. But I did apologize to the poor CNA who had to help my crippled, holey carcass out of bed and change my sheets first thing on her morning shift.

Pro-tip #2: CNAs are straight-up saints and do NOT make enough money to put up with your shit. Especially when it involves ACTUAL shit. If you’re unlucky enough to need their help, be nice and mind your manners!