I would like to say that life with an ostomy presented a manageable challenge. I would like to say I returned home hyped and ready to overcome this giant obstacle set before me. In other words, I would like to say that I was a positive, motivated and uplifting person who would now be an inspiration for others having the same experience.
I was not.
I returned home with both my small and large intestines protruding from my abdomen. My incision had healed substantially during my two weeks in the Victoria General Hospital, but I still required a daily visit from an in-home nurse to change the dressings and help us manage the ileostomy appliance.
Upon being discharged, my regime of medications continued. I was prescribed Tylenol 3 for pain, oral antibiotics and Prednisone. The latter was being slowly tapered off so I could safely eliminate the steroid from my system.
Physically, I was a totally different animal from when I had left our Tudor Village suite. I weighed a scant 125 pounds and could barely walk unattended. I worked hard to change that by regularly moving around the apartment with Coral or my mother at my side.
Soon, I was able to use the washroom alone and had learned to empty my appliance by kneeling at the toilet. My first attempts were messy and gross, but it was now my new reality. Figuring out how to live with the attachment was a necessity.
At first, the most frustrating aspect of the appliance was not managing its contents, but changing it every three to four days. Considering the drastic measures required to get inside of my abdomen, the wax seal on the ostomy bag was not sealing properly. It was uncomfortable, itchy and irritated my skin to an aggravating degree.
On top of that, when it was time to remove the bag and replace it with a new one, there was no way to control the excrement as it left my body through the stoma. I would beat my chest in anger as Coral and my mother attempted to control what was sometimes a gieser of poop shooting out of the stoma while it was uncovered by an appliance. The shit would roll down the side of my abdomen onto a towel underneath me, leaving me disgusted and extremely temperamental.
I am still unsure how Coral and Mom were able to maintain control of their own emotions. I didn't understand how they remained so calm during those frustrating few weeks, but have now realized they were doing it for me. They wanted me to know that if this was my new life, they were going to be there to support me in any way they could, even if it meant wiping crap from my stomach and constantly cleaning shitty towels.
Over the next month, I began to come to terms with my predicament and started to consider what my emotional and spiritual tones were doing to those who were serving me so willfully. My personality began to move back to normal, but was always tinged with depression, a lowered self-esteem and an overall poor attitude. I would be bright and conversational one moment, then quiet into a state of angry contemplation the next. It was a roller coaster ride.
As the summer of 1997 arrived, I remained in recovery mode, spending most of my day in bed or on the couch. As the long incision in my abdomen healed closed, I ventured outside for a stroll around our apartment complex or across the parking lot. That was the extent of my mobility.
By the end of June, it was time for my mother to return to her home in Whitewood, Sask. Coral was finished course work for the 1996-1997 academic year and was taking on more work at the private athletic therapy clinic.
I, meanwhile, began to acquire the skills I needed to care for myself, but still didn't have the ability to effectively maintain my ostomy. Cleaning and emptying the bag was not a challenge, but the wax seal and its tendency to leak was wreaking havoc on the skin around my stoma. The area was red, tender, itchy and burned when we attempted to change the appliance.
On top of that, the intestine's habit of constantly draining during an appliance change was pushing my temper to the brink of an all out explosion.
With Mom needing to return home and Coral taking on more work to make up for my lost income, we sought permission from doctors for me to travel to Whitewood through the first part of the summer. After being assured there was adequate medical service there in case of an emergency, they allowed me to travel.
It was healing to be back in the home where I grew up. The familiar atmosphere and my mother's incredible willingness to serve granted me an escape from my concerns about work, paying bills and, more importantly, Coral's emotional strain. After all, she needed a break from the whole "Chris being sick" scene, too.
Besides, she was getting quickly tired of one sickly side-effect of living with an ostomy appliance. When I slept at night, the gas produced by the work of my small bowel would release into the bag attached to my lower abdomen. It was like waking with a balloon stuck to my belly.
Before I could move anywhere, I had to release that gas; I had to deflate the balloon. I would open the clip at the bottom of the bag, making sure to hold up the opening so none of the appliances contents - other than the air - would spill out. The resulting "fart" was as distinct and disgusting as being thrown in a septic tank. Imagine your bowels were like the muffler of a vehicle. Not only does that mechanism control the noise produced by the engine, but it helps control the gaseous waste the engine creates when running.
The same goes for a bowel. Only in my case, I didn't have my large intestine to finish the process; meaning my "farts" - the air released into the bag - were unfiltered without the extra processing a regular person would have take place.
The stench was atrocious. It filled the bedroom like a bomb. Like Coral, I couldn't handle the smell either, but found myself - being a stereotypical male - using the morning gas releases as a sick joke.
Coral didn't find it funny at all.
The frustrations with the appliance continued in Whitewood. One day, as we attempted to change the bag for probably the fourth time in a week - each one was supposed to last four to five days, so I was going through way too many of the expensive ostomy appliances - my small bowel was especially active. We made two attempts at applying a bag, but each one ended up getting fecal matter beneath the wax seal, which would further aggravate my irritated skin and the bag would eventually stop adhering to my skin.
I had reached the end of my rope. As my wife, who had come to visit, and my mother patiently prepared another appliance for application, I twisted in the bed I laid on and put my fist through the thin wood-panelled wall. If I had hit a stud, I surely would have broken my right hand, further complicating my entire situation.
Mom and Coral stepped back a bit, but remained level-headed. They didn't say much about my outburst. They seemed to understand the strain of my new lifestyle was putting on me. Both of the most important women in my life were and continue to be the rocks I cling to when my world seems to be crashing in.
Trevor, who was working as a television journalist in Prince Albert, Sask. at that time, called saying he was in Whitewood and was wondering if it would be okay to visit. He swung by my parents' home in the afternoon.
I was sitting on the couch in the living room watching television when the doorbell rang. I got up and shuffled through the kitchen and into the porch to open the door.
Trevor's excited expression took on a tinge of shock when he saw me. He barely recognized the boney figure standing before him.
"Itchy," was all he said as he stepped into the house.
I tried my best to be jovial. We traded jokes and as we caught up with the story of each other's lives over the past few months. He laughed a little when I told him I couldn't sit on wooden chairs at the moment because it felt like the bones in my buttocks were going to come through my ass cheeks.
Trevor seemed beside himself and I tried my best to be positive and practical about my circumstances. Soon, he was back to being the guy I turned to in high school when I needed cheering up. We had almost totally lost touch with each other since then.
"One good thing to come out of this is I'll never have to worry about my weight again," I told him, hoping for a laugh.
"I think that's the least of your concerns," he said.
The line is funnier more than 15 years later because I have ballooned and shrunk several times over that period. Although I weighed a scant 130 pounds at the time of that visit, I have since exploded to 280, dropped 90 pounds, regained 70, lost 30; the yo-yo continues to this day.
Trevor was also a little uncomfortable with my seating position. My legs were so skinny, I could sit on a chair, cross them, then wrap the top leg around the bottom a second time. It resembled a pair of shoe laces twisted together.
By August, nine weeks after my emergency surgery, I was back in Winnipeg for a follow-up appointment with Dr. G. Although he felt I was recovering well, he was concerned I was "cushingoid" - gaining weight too fast due to an imbalance of hormones.
Ultimately, he put it off on the return of a healthy appetite and the removal of prednisone from my list of prescriptions. He also discussed the next steps in preventing the Crohn's Disease from returning.
Perforating Crohn's Disease - the type that causes a blockage and abscess like I had experienced - has a high recurrence rate with a likeliness that it will return soon after surgical treatment. Keeping the disease at bay required medication, which at that point had been prednisone, Pentasa and Asacol, the latter being another strong anti-inflammatory.
Due to the convulsions I suffered in the hospital related to prednisone and the steroids other terrible side-effects, that was a drug I wanted to avoid unless absolutely necessary; as in if I didn't take it, I would die.
I had taken the Pentasa and Asacol before, but it didn't seem to work as successfully as Dr. Goldenberg would have liked. Instead, he suggested metronidazole.
The drug is an antibiotic used to fight anaerobic bacteria found in several areas of the body, including the small intestine. At the time, there had been only one, three-month study conducted with metronidazole as it related to Crohn's Disease. It showed promise through the first year of treatment, but seemed to become less effective after two years.
Dr. Goldenberg suggested we try metronidazole at low dosages on a long-term basis. He felt the side-effects, which included peripheral neuropathy (nerve damage), were reversible but unlikely at the small dosage he was prescribing. After a year of taking the medication, I was to follow-up with him. If, during that time, Coral and I decided to have children, I was to stop the prescription.
Considering I was still paranoid about the disease's return, I was a pretty easy sell and began taking metronidazole.
As summer turned to autumn, Coral and I worked at becoming more proactive and positive about living with the ostomy. It was still difficult and frustrating, but I came to the realization that this would be a daily, moment-by-moment part of my life.
The skin underneath my appliance continued to deteriorate. It seemed like it was rotting away. A small hole in the top layers of skin was beginning to spread. By the fall, it was the size of a dime and growing.
I had also discovered that I required a new wardrobe, especially as I considered returning to work at the sports store. The location of the bag forced me to wear my pants high, like Steve Urkel on the television show, "Family Matters." If my pants were worn low, a belt would basically cut the capacity of what the bag could hold in half. If it then had any contact with the wax seal, there was a chance the appliance could be torn off while walking or bending.
Wearing my pants high was uncomfortable. It also caused further damage to my already-low self-image. That last thing I wanted was to look like an old man who hiked his pants up to his armpits because, well, he had an ostomy appliance underneath them.
Nevertheless, I discarded my blue jeans - especially after wearing a pair to a rodeo in Morris, Man. that summer which seemed to continually cause my wax seal to leak - and purchased about a half dozen pair of rubber-band waisted track pants and khakis. The latter were required as part of my work uniform.
I was welcomed back to the fold at the sports store late in the fall. Work-wise, things returned back to normal relatively quickly, although I required extra time in the washroom to empty my appliance and had to work around the awkward noises emitted through my stoma as gas worked its way through my small intestine.
I also had to put my manager in his place after a joke pissed me off so bad, I blew up on him in front of our entire staff.
By that time, however, I just didn't care about being insubordinate. In my head, I begged him to fire me.