There are times in your life where you just know. You know what the ultimate outcome will be during a life experience. For me, I just knew I would be having a life changing surgery. Before the doctors were going to proceed, they wanted to try a new drug at the time. This drug, Remicade, was literally brought down via Ambulance from Edmonton. I know what you’re thinking, lights, sirens with a police escort…. This was not the case, although in my mind at the time, it sure was.
Remicade is widely used today to treat Ulcerative Colitis, with great success. I have close family members who have been treated successfully and flourish on the treatment. However in 2003 it was so new to the market my doctors were not certain how effective the treatment would be.
The day it arrived to the hospital, I had to sign a lot of paperwork before administering the Remicade. Agreeing that I understood the potential side effects, stomach/chest pain, dizziness, joint pain,respiratory infections along with a few others. In conversation with my mother just a few weeks ago, I learned she had called her friend in Calgary to research it’s effectiveness online. To their surprise, her friend could not find much information online at all.
My father was the only one in the room with me when they turned on the IV administering the medication. To this day, I remember looking into his eyes as he held my hand, we both broke into tears. I can’t remember what was said, there truly were no words. At this point I was in a poor mental state, just as much as physical, that I needed for this to end. My family felt much the same way. I have a far better take on how this was impacting them, now that I am a father. Whether the drug worked or not was inconsequential, I needed to get to the other side of this experience regardless of what that other side looked like.
After the Infusion and the monitoring afterwards, I wanted to go for a walk. My dad wanted to take me downstairs to go sit outside. He knew what side effects to look out for in case they came on suddenly. I remember I just needed to get out of that room. When we stepped outside, my dad found a wooden bench for us to sit at. I remember lifting my “Christmas Tree” (all the IV lines hanging from a poll) over a large crack in the sidewalk so my TPN lines were on the right side. This was the first time I had sat on anything that wasn’t a cushioned chair or a mattress. I could feel every bone, from my tail bone, femur and forearm as I rested my arm on the armrest. Unless you have experienced this yourself, I cannot put into words what runs through your head.
It was at this point I also began to feel great pains in my shoulder blades, knees and elbows. On the way back upstairs, these pains intensified. When the doctor came to check in on me later that day, he confirmed these pains were a side effect. Again they tried solid food to see how the medication was taking. I wish I could say the pains did not come back or that they were less intense. This was not the case.
There I was, thriving in pain sick and fucking tired of trying different things. Giving it time, trying a new drug, resting the digestive system. It was all bullshit! I remember thinking to myself, “cut me open and gut me like a fish!!” I did not care anymore! I just wanted for the pain to go away so I could get the fuck out of the hospital and on with my life!!
Simply writing this down ignites the same feelings I had all those years ago. You often hear of people reaching the ceiling of frustration during volatile situations. This was my ceiling. I knew my life would be different and potentially difficult after the surgery. I realized then, more than I had before, I was better off adapting to a new life with an Ostomy Bag. Than dying in this fucking hospital room.
I vividly recall my doctor walking into the room expressing the need to quickly do the surgery. My body was at a point where the TPN had done what it was intended to do, build my system up to an acceptable level for the surgery. Earlier when this surgery was first discussed, I felt sick to my stomach that this was a potential reality. Hearing the doctor say this was my last option, one would expect the same feelings to come to the surface. Oddly enough, this was furthest from the truth. I felt a true sense of vindication.
The surgeon drew me a diagram of the procedure while I as laying in the bed. I knew he was a competent surgeon as he very easily and clearly drew this diagram upside down in front of me. He drew my digestive system with lines showing the section he would be removing and where my pouch would be placed on my abdomen.
The curved line around my belly button was the only incision that would have to be made. Which was incredibly surprising to me. In my mind I was literally going to be gutted like fish!
Shortly after the doctor saw me, an Enterostomal Therepy nurse, most commonly referred to as an E.T. Nurse, would visit my room to speak with me about the appliances I would require, along with how to use them.
The ET Nurse, Maureen, had the most wonderful way of explaining the new lifestyle I was going to have. She spoke very kindly while assertively. Making clear, this was not the end of my youth. After time with the Ostomy, I would be capable to do most, if not all activities I was able to do before the operation. She left me with samples of the appliances for me to play around with and get used to. She explained how the “Flange” or “Wafer” attached to my body around he Stoma. The tip of the small intestine (Ileum) which is sewchered externally on the abdomen. Then how the pouch attached to collect my “discharge”.
The fact Maureen had given these to me to get used to, before they were attached, gave me a stronger sense of how I would look and feel with these things on my body. The following day while the OR time was being booked, Maureen did a few trial runs on how I would change the appliance every 4-7 days or as necessary. Assuring me she would be there after the surgery to help do the real thing the first few times. Both in the hospital and at home until I was comfortable doing the changes on my own.
Below are a few pictures of he original appliances I used. They have changes a great deal over the years where they are thinner and offer better longevity of wear.
Now all that was left was to wait. I was booked for surgery that evening. I was more than ready to get going with the operation. Was I scared? Nervous? Of course I was!
I was scared of the actual surgery itself, what if something went wrong?
What if they found something else the scopes didn’t see?
The small intestine diseased as well?
So many things running through my head. None more important than the beginning of the end of this experience. I was ready to get out of the hospital, which had been over 5 weeks at this point.
All I had to do now, was wait!