This post appeared on Root Fifth Octave.
On April 27, 2016, I left the hospital to come home with my baby. An uncaring, uncontrollable, unpredictable sh!t machine. It’s messy to clean, difficult to change and it keeps me up at night, waking me sporadically.
Ulcerative colitis (UC) is a disease that affects loads of people, and I’m one of them. I won’t go into the details of what the disease is, its causes and symptoms; you can Google that sh!t at your leisure. The important thing for what I’m saying here is that it can affect the large intestine all the way down to the exit hole. There’s no way to talk about it without getting a bit gory so, untie your hospital gown and bend over because that’s where this is headed.
I’ve struggled against the ebb and flow of the symptoms since November 2010 and was diagnosed the following May. Diagnosis of UC isn’t done by fancy scans like a sexy lung or brain problem. Nope, the only way is to take a good old-fashioned look up the butt with a not-so-ole-fashioned endoscope camera. If you’re lucky enough to have some ulcers and inflammation convening up in your poop pipes, you’ll get used to the ever-present threat of another film shoot up in your guts to see how things are.
Sometimes, it gets ugly up there.
On February 21, 2016, after a few months of slow deterioration, I went to A&E because I felt like Satan was keeping his demon wasp army in my backside, but doctors told me it was something really boring called a perianal abscess.
In the process of treating this, my UC-afflicted gut was examined and confirmed to be “not good.” Following a few days of me flushing a lot of blood down the toilet, the vast majority of my large intestine was removed and my poop exit hatch moved around to my belly. I now have an ileostomy, which is where my small intestine ends and empties out into the big wide world unless there’s something to catch what comes out. It’s my baby, my new poop arrangement that I can’t fully control, yet it’s part of me and I need to maintain it.
What followed that was my body ticking off everything it could on the list of possible complications — probably as revenge for evicting Satan’s wasps. Ileus, sepsis, edema that inflated my cock n’ balls to the size of a grapefruit, infection, more sepsis, the opening of a fistula in the gnarly scar from the surgery to fix my sepsis, and malnutrition from the fact my guts were just refusing to work. I had, in total, five surgeries while I was there. The general anesthetics were usually the best sleep I would get in a given week, due to the staffs’ love of waking me up — usually for utterly bullshit reasons.
After almost exactly two long months going from ward to ward (including a week in the High Dependency Unit – where I saw some weird, weird narratives play out in the other bays), I was finally deemed able to walk and deal with my new poop arrangement well enough to go home to my mom and dad's.
So, on April 27, me and my new baby (an ileostomy) started on the long and foggy road towards normality. I’ll let you know how far we get.