*Please note: This blog post will talk about uclerative colitis, a gastrointestinal disease I have. I will be talking graphically about the disease and will include information about my bowel movements (not said so medically!). So, if this kind of thing grosses you out, you may not want to read this. Thanks. (For you CLM.)*
I was diagnosed with ulcerative colitis (UC) when I was 19 years old. It was after my first year of university was complete. I had purchased a one-way ticket out west, and living among the crystal waters and gentle mountains of Kelowna, British Columbia when my guts decided to stop working.
Ulcerative colitis is: a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. (www.ccfa.org)
Yeah, it’s a gross description, I know. If you’ve ever had a canker sore in your mouth or an ulcer in your belly, you’ll know the type of pain that this type of thing can cause.
So, there I was, living it up out west. Feeling the deepest most beautiful freedom I’d felt in my life ever (up to that point!), and my guts decided to quit on me. The thing is, the collective ‘they’ don’t really know exactly what causes UC. It’s different for every body. There’s a list of things and stress is one of them. Funny thing was, I was the most UN-stressed I’d been in my life at the time I was diagnosed.
My self-diagnosis is this: I had finally stopped worrying – a way of being I was gold-medal-champion at since I was a toddler, and my guts were like, hold up, we don’t have to hold her worries anymore? Okay then. Relax and…break!
Growing up, I worried about everything from weather conditions to tests at school to competitive sports…I even worried about what to wear, and if I’d remembered to pray for everyone each night before I fell asleep. Yes, prayer was stressful for me!
In any case, I was done with all that. Done with school. Done with planning. Done with ‘what do you want to be when you grow up?’ I knew I was a writer, and although I wasn’t yet identifying out loud that that’s what I wanted to be when I grew up…or every minute of every day, I followed my body’s urge to go west, charged my credit card, and off I flew.
My body, I believe, was completely confused. I was eating healthy. I was riding my bike everywhere. I had a job I enjoyed. I was reading and watching movies and writing letters. I was happy and stress-free. And I didn’t really know what was happening to me. All I knew was that I was pooping more. And it was painful. Then I saw blood. At that point, I knew something was really wrong. What’s wild is that the two (amazing, wonderful, talented) women was producing a movie for also had UC. They were able to explain what was happening to me.
I saw a doctor. He checked me…well, in the place that needed to be checked. Confirmed I had UC and suggested a colonoscopy. I was across the country and was not going to have anything done without my family by my side. So I had to go home.
The drive home was with my love so that made it bearable/possible…but it was awful. I could only eat McDonald’s fries. Nothing else stayed in me. Even water flowed right through me. There was blood. There was pain. As soon as I got home, my doctor admitted me into the hospital, and I spent the first of several stints the hospital attempting to heal my guts.
I’ve had loads of colonscopies. I’ve had blood transfusions. I’ve been on such high doses of steroids, my body bloated up and I was embarrassed to leave the house. I needed to always know where a bathroom was because if I had to go and there wasn’t one near me…it would be messy.
The worst flare up, as the bouts of illness are called, was after Jett was born. I didn’t know I was having a flare up. I thought my sore guts were due to my pregnancy. After a 27-hour labour, my body was…devastated. A month after being home, I realized that I was having a really bad flare up. I tried to pull through with just meds, but it wasn’t working. Poor Jett and I spent the first four months of his life in the bathroom. Then I was hospitalized again…too weak to even hold him. It. Was. Awful.
A miracle occurred when I tried a new drug previously used for rheumatoid arthritis patients. Apparently, because of its ant-inflammatory brilliance, the medicine was working for patients with crohn’s and colitis as well. It was given intravenously, like a cancer drug. I had to sit in a room for three hours while it slowly pumped into my veins. Oh, and it cost $3,000.00 per dose. I know. Way insane. I was covered, thank the gods, so I didn’t have to pay for the miracle drug. But let me tell you, I walked out of that place feeling like a million bucks.
Since Jett was born (he’s 9 now), I haven’t been back in the hospital. I haven’t needed meds.
But…sometimes, when I don’t sleep enough, when I let stress take over…I get what I’m having today…let’s call it an episode.
I get the beginning of a flare up. This is gonna sound weird, but I get this funny smell in my nose. It’s a sure sign that my body gives me to warn me of the funk that’s happening in my guts. See, when I get nervous, excited, anxious, stressed – I hold it all in my guts. Doesn’t matter if the energy is positive – say, for example, just before I get on stage to do a poetry reading – the excitement and nerves rustle in my guts and I have to go to the bathroom. Number two (if you haven’t caught on). It’s always been this way. Since I was a kid. In fact, I know lots of people who when they get nervous they have to shit. I don’t think it’s that uncommon. But in my case, I really can’t let my guts be filled with this stress or else the start to hurt.
Cue: finish novel. Cue: finish Mouth Piece podcast. Cue: Entertain kids because it’s summer. Cue: guts in a knot.
Today, I cancelled all my commitments and got committed to resting my body. It’s 7:34 and I’m still in my pajamas. I slept in. I ate lots of carbs (my sick guts like carbs). I read. I’m writing this (it’s cathartic). I’ve taken my probiotics. I haven’t pooped. My abdomen hurts though. And I’m scared to poo when it does need to come out.
I feel bloated. And I can feel everything that’s happening in my intestines. Air. Waste gathering and moving. Yesterday I was on the toilet for an hour. A real, full hour. Breathing like I’m having contractions as the waste moved through my colon. There is only relief when it’s empty. To describe the pain is to describe contractions. It’s like my colon is in major spasm. It wants to get the stuff out. But the stuff has to pass over sores. Like canker sores in my guts. So it hurts a lot. I sweat. I flail my arms. I cry out. It’s a terrible scene but it’s the only way I can deal with it when it’s happening. Afterwards, I feel like I’ve run a race. My back hurts. My thighs and calves feel like they’ve been punched. I’m exhausted. And I can still feel small spasms in my colon for about an hour after.
This is not even the worst of it. It’s the beginning. And I have to pay attention. Sleep. Breathe. Meditate. Rest. Rest. Rest.
I bet if you asked around, you would know someone who has Irritable Bowel Syndrome (IBS) or some other disease of the digestive system. There are many of us.
Is it because we’re so stressed out? Is it hereditary? Is it poor food choices? I don’t know. But metaphorically, for me, I think it happens because I’m holding on to too much ‘waste’. Too much stress, which is junk, which needs to be released. And my body always tells me. My body always shows me. That I need to stop and pay attention. Kinda like what I teach folks who ask about how to be a great writer and poet. I always tell them: pay attention. It’s like I need to teach myself this lesson over and over again.
The positive thing is that I am paying attention. I hear my body. And I’m resting. I hope the next poop will be less painful than the one before it, and I’ll get through this episode without it getting worse.
It’s amazing how our bodies tell us things, huh? Yesterday I had a mammogram. My boobs will tell me things. Hopefully good things! I need to listen to my guts and slow down. That novel? It’ll get done, but not in a way that’ll make me sick to finish it. The podcast. The kids…everything will get done when it gets done. And the best thing I can do for the kids is to teach them to pay attention to their own bodies.
For some of you, dear readers, (if you’ve made this far…) this is the first you’re hearing of my disease. I’m sharing because I want you to know that I get stressed out too. That there are physical consequences to my stress. And that I have to remind myself to pay attention so I don’t get sick. Maybe you needed to read this to know that you’re not alone in whatever physical manifestation your stress gives you. Maybe you’ve got yours under control. It’s all good. I’m working on mine.
Even though writing is a seemingly simple physical action, for me, it plays out in my body like I’m training for a triathlon. I feel stress when I’m writing stressful scenes. Just like I feel sad or happy when I’m writing those scenes. What I’m constantly learning is how to pay attention to my body so that I can keep writing and not let it penetrate into my guts. That extends to any creative endeavour I do.
I really want to work on my novel today. The characters are on my skin. Tickling me to get back to them. But not today. Not today.
Today is namaste to my guts.
2 thoughts on “U(lcerative) C(olitis) Me?”
Rest well, my friend.
What a surprising, amazing journey. Be well. Meditate. Relish your joy.