On 27th April 2016, I left the hospital to come home with my baby. An uncontrollable, uncaring, unpredictable shit machine. It’s messy to clean, difficult to change and it keeps me up at night, waking me sporadically.
Ulcerative Colitis 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 its symptoms; you can Google that shit 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 disease’s symptoms since November 2010 and was diagnosed that 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 ol’-fashioned look up the butt with a not-so-ol’-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 21st February 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.
“WHAT IS THE DEAL WITH ALL THESE BEES?! IN MY ASS?!”
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 poop machine that I can’t fully control, yet it is 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, oedema 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 anaesthetics 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.
You have to go to Switzerland to get this quality of care.
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 to able to walk and deal with my new poop arrangement well enough to go home to my Mom and Dad’s.
So, on 27th April, me and my new baby – my ileostomy – started on the long and foggy road towards normality. I’ll let you know how far we get.