How IBD Taught Me to Get Out of My Own Way
by Michael Hanes
Endless doctor appointments, wrong treatments, misdiagnosis, adverse reactions from medications, loss of weight, good doctors, bad doctors, brain fog so bad you forget people's names you know well. One surgery, two surgery, three. Finding a routine in your new "number two", navigating the alien stoma. Leakage and bad seals, red ring of fire, stoma version. Blockages, fatigue, misunderstanding from friends family and everything in between of chronic illness.
This list could go on. It’s some of my personal experiences with ulcerative colitis. Yours could be similar, probably a little different. I find there’s just as much variety in this disease effecting individuals as there are people living with it. We could all sit here and hammer out endless lists of the daily hurdles we go through.
But what does that do for us? Does it help or hinder us to put so much attention to these?
This list of subjective experiences and feelings listed above, in my opinion should empower us.
Look at that list!! There is so much pain in there. Emotional pain, physical pain and trauma. What can you do with it though? How can you channel this into something positive for yourself and community.
Use this pain! Everything in this list has prepared you for anything you want.
You’re telling me that you can go through the plethora of ups and downs, multiple surgeries, multiple set backs, pain and stresses and then shy away from experiencing the life you want to live because of having this chronic illness.
Everything required to navigate almost any experience has been cultivated through your experience with IBD.
In most recent years for me, it has been traveling, hiking and going back to school where using my IBD experience to my benefit has come into play.
The will power you need to get through your surgeries, all the time and energy it takes to heal. The problem solving you need when figuring out a new diet, new flange and your bodies capabilities. The constant struggle of chronic illness being misunderstood. All of it, if looked at through the proper lens can be a tool to put you in the trajectory that you want to go.
I started writing this from the base of an alpine mountain overlooking the most beautiful turquoise lake in Strathcona Provincial Park on Vancouver Island. The four legged friend of mine Scarlett and I have been in the mountains over the past ten days. The first adventure we went for ended up being a bust. We were denied climbing the mountain early on due to not having the proper gear to proceed safely.
At first it pissed me off, but after letting out a few choice words at the top of my lungs and a few conscious breaths I was ready to recalibrate. I knew there was a lake at the end of the first trail I started on before branching off to attempt this mountain, that is now the destination at hand.
IBD Has Taught Me Not to Fear Failure or Change
While walking there I couldn’t stop thinking about failing. What is failing? Is there even such a thing as failing if looked at in the proper light? I didn’t get the outcome I wanted but I am now on a new course to a different destination. My plans have changed but here I am, walking in this beautiful dense coastal forest headed to an alpine lake to camp for the night. Nothing has been squandered, it’s just different. I could have easily turned around and headed back to the car defeated but that's not what IBD has taught me, IBD has taught me that you keep going, you have the strength and mental capabilities of dealing with change.
We ended up at this beautiful alpine lake where we had an amazing dehydrated dinner and a nice cup of liquorice root tea before bed. Scarlett and I slept beside the river with the alpine mountains in background. On our way back the next morning we unexpectedly ran into a couple friends from the mainland along the trail. We had a nice catch up and continued on. I ended up leaving a note on their vehicle letting them know where I planned to hike the next day and to come meet me for a cold one after their day trip to the lake. Which they did, and they ended up staying the night. We had a fire along the river and ate some good food. An opportunity that only happened because of the change of plans.
I had driven just down the road to another trail head of another mountain, a mountain I was confident in getting Scarlett to the top of. It was a back up plan as I may have anticipated not being able to summit the first mountain with Scarlett. We arrived early in the day giving me time to rest up from the previous days trek.
IBD Has Taught Me To Become Comfortable With the Uncomfortable
The thought process since being turned around a day prior became a theme of adversity and challenges I’ve come across over the years. This sparking a reminiscing train of thoughts. I have encountered many uncomfortable situations while being in unfamiliar territory as a result of my IBD. Backpacking the alpine, traveling Nicaragua, India and quitting a job to start school in my late 20’s is what comes to mind. For these particular experiences a few situations stand out:
>> On a multi-day backcountry trek deep in the alpine, in the middle of the night, fast asleep in my tent and all cozy in my sleeping bag, I had the worst leakage. So bad that I had to get out of the sleeping bag and long johns. It was a mess, my only option was to drape this shit-filled sleeping bag over myself. Making it one of those times when you’re out in the mountains and you maybe get a few hours of sleep but feel like you’ve haven’t gotten a minute.
>>In Nicaragua, I spent most of my time living out of a hammock. Finding places to go to the bathroom as much as one does had been one of the hardest things to do. I’d run around asking local shops and anyone really if they new where a baño was. For the most part it would be a big no to the gringo. I’d have this panicked look on my face as I'm clenching so tight as to not let anything sneak out out while negotiating. I’d lift my shirt to show them my scars. Instantly their compassion would come through and I’d be shown to the facilities.
>>In India, I was on an all-night bus ride that was non-stop with no bathrooms. We stopped a couple times for bathroom breaks but nearing the end the stops were no more and I had to go something fierce. I had one option: get the bus driver to pull over so I can do my thing. I ran out on to the side of the road, popped a squat, started doing my thing and I look up to the bus to be greeted by the eyes of all the passengers.
>> Going back to school was the scariest thing I have ever done. My entire working career has been in steel toe boots. From a plumber to a Conductor for CP Rail, and an operations copper miner. Even when I was in high school I took basket weaving courses and played hockey. I’m a gritty, hardworking, blue collar, lunch bucket type of person. To quit the mine and sign up for a this 3 year program in traditional Chinese medicine was to go against the grain to say the very least but I was following my heart trying to get out of the steel toes as I’d always wanted to do but always fell back to jobs that were terrible on the body but you didn’t need an education and you made pretty good money. I would have graduated in April this year, finishing a three year program in two years. Due to the pandemic things were put on hold for a minute but I am happy to report that my peers and I were able to graduate at the end of August. What a ride.
IBD Has Taught Me How to Find Humor in the Bad Times
The thing is, when I look back or tell people of any trip, mountain climbed or experience I’ve gone for, my brain never remembers the bad times, they just aren’t that important in the big picture. I find myself bringing them up because the bad times are now funny.
I've experienced having such bad leakage one night, my girlfriend at the time tried taking sheets to a dry cleaner to get them properly washed, because there was no chance they were going in our washing machine. The dry cleaner literally told her to kick rocks. We ended up having to wash them at our place.
Going to people’s houses with a J pouch or bag, especially if you’re joining them for a meal, pretty much guarantees the use of their facilities. The noises that ensue while in these bathrooms and our smelly stools can be quite the treat!
Having explosive bowels means splattering the toilet as well, I don’t think I have ever used one of those toilet bowl cleaners so much in my entire life since getting the intestine removed. In the bowl, under the seat, sometimes it somehow even gets onto the underside of the toilet seat cover!
I have fainted in the gym while working out when getting used to how my new body operated. Figuring out how much water I actually need to drink in a day to stay hydrated.
IBD Has Taught Me How to Persevere
I use these stories to paint the picture of my experience but the intention isn’t to pump my own tires and stoke the ego. Regardless of what the specifics are from each individual, we go through exponential challenges every single day living with this disease. If we have to deal with these things on a daily basis while in the comfort of our own homes why not do it everywhere and anywhere! Don’t let this disease inhibit you from experiencing the life you want to live. Do you think anyone on that bus actually cared that I popped a squat? No chance.
It will not be easy, you will be pushed, you will feel scared and insecure all the time. And then one day you won’t, it will be like a light switch. All of a sudden none if it will bother you and you will truly be walking your path. You’ve already been through some crazy shit!! You got this! You can persevere as you have, time and time again.
IBD Has Taught Me How to Find Inspiration
Let your story inspire you. Don’t become attached to the micro details that are your symptoms.
These things don’t break you, they make you.
We have been equipped with this special set of life skills. The utmost strength, determination and problem solving skills.
We have to use it. What's the point of suffering if you don’t change the dark into light?
All of it is affirmation that we can get through anything.
We can do anything.
Make friends with your story and peace with your symptoms. Find a way to get over yourself and to get out of your own way so you can live a life that that you want. You got this.
About Michael Hanes
A junior hockey player and sports enthusiast in his younger years, adventure enthusiast and steal toe boot employee for the majority of his twenties and now a recent graduate from Pacific Rim College with a diploma of traditional Chinese medicine acupuncture. Michael is forever a student of life. There is no experience he’s had in which there wasn’t something of use that could be taken from it. An exciting fact with so much life ahead. He gets fired up advocating for people living to their fullest potential regardless of their chronic disease and is excited to dive into his new career of TCM acupuncture.