How I Met Mona: A Stomaversary Celebration!

It has been 730 days since Mona and I began our journey together. Yes, today is my Stomaversary. Two years with my new front butt. We celebrated on Thanksgiving weekend, and I can't imagine better timing. We've had a few trials, but I want to focus on all the ways my life has changed for the positive since meeting Mona. So here's the story of how I came to need Mona, and what life has been like since:

Two years ago, I left my home province, Newfoundland, and moved to the beautiful Annapolis Valley to go to school. I wanted to become a dietitian. But also, to have a fresh start in a new place. I wanted to reinvent myself. So, I left my family, friends, career, and most of my stuff back in the motherland, packed up my car, jumped on a ship, and started over. A month later my new life was put on hold when I got sick and drove myself to the emergency room. Three weeks later I emerged, a lot thinner and a little worse for wear, with my new pal Mona.

I’ve always been sick. I was diagnosed with Crohn’s disease at ten years old. I don’t remember a whole lot from my early life as a “healthy” person. The first few years weren’t always bad, I had a couple flare ups, they were managed with medication, I came out in one piece, and life went on as normal. When I became a teenager, things went a little haywire, and thus began the slow spiral through time, hospital stays, medications, side effects, more medications, surgery, medications, more surgery, more medications… until eventually I landed at the Valley Regional, a stranger in a new, very small town, sitting in a hospital room, staring at the red fleshy blob that I now know and love: Mona. I thought my life was over.

I was a wreck in hospital, the ostomy nurse didn't have an easy time with me. I’d have given me up for a lost cause. A month later we were both crying at her clinic because I was doing so well. I think she was genuinely surprised that I got over it. I certainly was.

It’s hard to be sad when the very thing you’ve been wanting for years is given to you. I didn’t know that it came wrapped in the shape of the thing that scared me most about living with Crohn’s disease. The dreaded ostomy. That term was brought up in my gastroenterologist’s office a few times in the years preceding. I knew nothing about ostomies. I didn’t read any articles about them, I didn’t know how people lived with them, or that they even could. I didn’t know and I didn’t want to know. It was a self-defense mechanism. What I don’t know can’t hurt me. I lived my whole life KNOWING that I would NEVER need an ostomy. I reassured anyone of my friends or acquaintances that spoke that WORD to me that I would NEVER need one of those.

I had had a surgery in 2015 that I hoped would cure me. The surgery removed my terminal ileum, cecum, appendix, and part of my ascending colon. That’s fancy talk for the part where the small intestine leads into the large intestine. After 17 years of abuse, that part of my digestive system had become pretty well blocked with scar tissue from recurring disease. The only way to be able to eat again was to get it removed.

I felt awesome at first, but it only lasted about three months, then I was sicker than I had ever been before. My entire colon became ulcerated and inflamed. This doesn’t happen to everyone, but it’s a potential complication of the surgery I had. It was never really resolved. I fluctuated on and off corticosteroids, a powerful anti-inflammatory medication with a whole host of side effects, none of which were very fun. The word ostomy came up in my gastroenterologist’s office a couple times over the next couple years, but I flat out refused.

In 2017 I stopped digesting my food entirely. A trip to the emergency room resulted with a camera down my throat and into my stomach. Turned out I had active Crohn’s disease in my pyloric sphincter and proximal duodenum. That’s fancy talk for the part where your stomach leads to your small intestine. Again, scar tissue had built up over the course of a few years, and I had been managing my symptoms through diet, believing the source of my pain was lower down the tubes. It was Canada Day weekend, and I needed another surgery. So they decided to give me an ostomy, except this one was inside. They pulled up a loop of my small intestine and sewed it to the opposite side of my stomach, so that food could still empty. It made it possible for me to eat again. My physical recovery went very quick, but my stomach was slow to start digesting normally. When I moved to Wolfville on September 1st, I still couldn’t eat without vomiting, and the pain grew to be so great that I decided to go to the hospital. Not even a month into school.

The only option was to completely bypass my large bowel and get a loop ileostomy. That’s the kind of ileostomy where they don’t disconnect the large bowel. A loop of small bowel is pulled to the surface of the skin and two holes are left. One comes from above, and excretes fecal material, the other leads to a dead end, blocked by inflammation and scar tissue. Most loop ileostomies are performed with the hope of reconnecting the bowel after it’s had time to rest and heal. Mine was done as a loop because the portion that was blocked with scar tissue had been pulled up into my liver, and it would have been a very risky surgery to have the colon removed from that area while it was so inflamed.

Surgery was on Friday. Friday the 13th. The following Thursday I was back in class. Sickly skinny, in pain, and terrified of a bag explosion (Mona really lives up to her name), I walked back into class with more drive and more passion than I had had for anything else before in my life. 

I am extremely privileged to have had my mother come to help me recover. She is a saint and tended to my every need until I was strong enough to take care of myself. I am also extremely fortunate to have been a student at Acadia's School of Nutrition & Detetics. They take a tremendous amount of pride in every one of their students, and they allowed me to finish my coursework at a pace that worked for my recovery. Now, two years later, I've graduated and I'm doing my dietetic practicum. In about a year I'll be a registered dietitian!

Recovery was a bit difficult, I had issues of leaking and it took a while to find the right bag. After a couple months I developed an infection that led to an abscess. Four months after my ostomy surgery, I went in for another surgery to revise the ostomy site. It wasn’t comfortable and it took a couple months to heal completely. I've had some issues pop up periodically since then, but they've been resolved quickly with consulting the NSWOC and/or doctor.

 So even though I thought my life was over when I woke up with Mona firmly planted on my side, I quickly realized that I had actually been given a gift. I had been so sick for so long, that I never imagined myself in a universe where I functioned, more-or-less, like a normal human. I eat whenever I feel like it, and mostly whatever I like. I don’t experience pain every day anymore. I go to bed feeling comfortable and I wake up rested. I have normal people problems, like gaining 10 lbs. because I ate too many sweet potato fries last summer. I can have a few drinks if I feel like it. I can go out and spend time with friends. I go on dates and have been intimate with partners I trust. I feel like a 31-year old woman, with her life ahead of her should feel like. I just poop different.

I made a deal with my mother about this. I told her I could do this two ways: either keep it a secret, or tell everyone. I imagined a life where I kept everything inside, tried to hide it, suffered in silence. I had already lived in that dark place. So I had to be open, to share my story, my struggles, my successes to whoever was willing to listen. There is so much social stigma attached to living with an ostomy. Yes, your whole life will change. But that change may be beautiful and liberating and empowering. It’s only through visibility and awareness that we can change the mindsets that feed the stereotypes. I am free in a way that I never imagined I could be. In the past, my potential was always measured according to what I was physically capable of doing. Now it’s as big as I want it to be, beyond measure. And all I had to do was poop in a bag.

Until next time friends,

Heather ^_^