Updated: Sep 17
Hi, I'm Erica. One week ago I checked into the Headwaters Health Care Centre and underwent a life changing surgery.
18-months ago my world was turned upside down with the diagnosis of an auto-immune disease that would quickly chip away at my physical and mental health and lead me to working with a team of 7 doctors, a naturopath, dietician and mental health therapist. It lead me into the depths of rabbit holes of diet protocols and medications as I grasped onto my rapidly declining health with everything I had. Due to the ever changing circumstances around my illness, I haven't been able to stop long enough to share my story - and so now is my time, to tell it, in my own words.
I want to go back to the beginning to tell you how this all came to be, to share my journey down a spiral away from the healthy body, mind and spirit I once had. A story about grief and loss - loss of identity, loss of personal fitness, and at one point the loss of sensation in my feet and legs (more on that to come).
If you choose to look beyond the loss, you will see a story of strength. Today (Day 7) I celebrate holding onto hope, finding courage within, and being a true badass in the face of some of my darkest days.
Day 0 (Friday, July 7, 2023) The 2.5 hour surgery was a laparoscopic subtotal colectomy - removal of most of my large intestine (future surgeries will go back in to remove what remains and do some further work to build me something called a J Pouch - but more on that later). My surgeon Dr R.J. lead the team that pulled this off with fewer incisions than advertised (which will quicken my healing) and I woke up groggy and sore. The main thing I can remember is that it felt like I was doing one huge abdominal crunch, and I was confused. The pain meds kicked in and I was moved to my room, where I was greeted by the rest of my team, my A Team (that'd be Jason, Mom and Dad). The rest of the day I can't remember very well, just that my throat was excruciatingly sore from the breathing tube that had somehow filled my lips and tonsils with canker sores while I was under. I was on oxygen and a catheter, and it hurt a lot to breathe. You see one result of losing a colon, is that I now have a stoma, a hole that exits my abdomen, straight through my abdominal wall. My A Team held my hand and fed me ice cube after ice cube like a little baby bird. I am told I was cracking jokes from the minute I woke up, which might have also been influenced by my morphine pump, my bestie during days 0 to day 2.
It was also on Friday that I would come back into contact with one of my angels on earth, my favourite teacher from when I was in fourth grade, Joylyn Bell. I'm going to call her coach Joy. Joy is 81 years old, shares my birthday, and in an odd twist of fate, we were brought together as roommates. I can't imagine a better coach to spend my first few days in hospital with. Thank you Joy, I'll never forget this experience and wish you the best as you continue your healing journey. You were the best roommate I could have imagined.
Despite my pain and confusion post surgery, my immediate impression was that my other pain - the pain we set out to fix, the pain I've been living with was no longer present. That was everything to me, and it felt like hope.
Later that evening a rockstar (nurse J) coached me to sit up on the edge of my bed, and I stood up for the first time since surgery.
Day 1 (Saturday) My vitals were good enough to remove me from my oxygen supply, provided I continued to take deep breaths every hour (ouch) and cough in order to clear the fluids from my lungs that built up while under anesthesia. They also removed my catheter which meant I now had to rely on myself to get to the bathroom, which was great motivation to get my physical body moving. I have big goals you see. Here I am in my amazing #rainbowtrailrun hat from my good friends Jodi and Norm at www.gottarunracing.com . My first walks were humbling, and hard. A few steps, pain, rest, repeat. The nursing team at Headwaters are angels on earth, but one will hold a special place in my heart as my biggest supporter and guide - nurse J. She not only took the best care of me but gave me the tools I needed to begin to support myself. We saw eye to eye. A true coach.
Day 2 (Sunday) I was able to make the transition from IV meds to oral pain meds and started having more solid food (my final two requirements for release). I was so happy to be IV free for the first time since Friday. My appetite started to return as well. I hadn't had any solid food since Wednesday evening. I had a visit from my right hand man, the head coach of my team, Dr J.M. (iykyk).
Everyone needs a Dr J.M. on their team.
Day 3 (Monday) I was fighting nausea and fatigue, but met the criteria and was therefore released by Dr G (another one of my surgeons). My first 24 hours at home were all about learning how to manage pain and nausea on my own, along with my new nutritional needs.
The job of the colon is to take water and electrolytes out of the food so my hydration needs changed dramatically over night.
Day 4 (Tuesday) I had my first appointment at www.closingthegap.ca (an amazing service that helps to bridge the gap between hospital and home). Not having a colon has left me with an ileostomy - essentially my small intestine now exits through a hole beside my belly button and empties into a bag. I will need coaches to help me learn about my new normal, and these nurses are pros. Tuesday was rough, with extreme fatigue, nausea, and dizziness, but the discovery of a UTI brought on by my catheter, a quick visit to my super accommodating GP and I was able to start on a round of antibiotics, grateful to have dodged a potential return to the ER.
Day 5 (Wednesday) I can't forget this key member of the A team - nurse Kody, who is taking good care as he adjusts to the changes around here. I couldn't be luckier to have him by my side through this, but it's a big adjustment for him as well.
And to my extended support team of family, friends and clients who have checked in, visited, sent me love, or words of encouragement. You know who you are, I'm grateful for you.
Day 6 (Thursday) I wrote this note to myself in the middle of the night, "today will be the day I turn the corner!" And it was. I realized my need for morphine was decreasing during the day, and my energy was increasing. I was walking faster, I can sit up in a chair for longer before I get sore and fatigued. My weekly step count tells you everything you need to know. So I overdid it. A good reminder about balance.
By night time, I felt like I had run a marathon, every muscle in my core had gone through an intense workout, and my pain started to return.
A sharp reminder that this is all about balance. So today (Friday), I will give my body what it needs - a rest day.
At times through the last 18 months I have asked "why me?". I spent years devoted to building physical, mental, and emotional wellness. But the thing is we can do our best and shit still happens. I'm lucky in that I have built the foundation that put me in the place to be able to take this on. My team says I'm recovering fast, and I believe that is because of my strong foundation, my mental toughness and my mindset. Happy to have you here on this journey. XO Erica