Troubadour Dreams

Tuesday, November 22, 2016

In Repose

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.


Thursday, November 17, 2016

Gutted

I was told what happened when I regained lucidity more than a day later. The world as I knew it had changed more than I could have ever imagined. I immediately fell into a depression.

After going through emergency triage, it was determined that I was falling into septic shock. My organs were shutting down as my immune system fought off the horrid situation brewing in my abdomen.

"You husband is a very lucky man," Dr. M. told Coral after several hours of surgery. It was a cliched statement from a doctor, for sure, but fitting once the details of what he had to do came to light.

After making a one-foot incision from about four inches below my sternum down to my waist, doctors pulled open my peritoneal cavity and found it full of purulent fluid - liquid pus caused by infection. A large inflammatory mass was found on my lower right abdomen, which was dissected off of the right side wall of the cavity.

The surgeons moved down to the ileocecal region, the area of the intestine where the small bowel (ileum) meets the large bowel (cecum). There, they found an abscess cavity at the ileocecal junction, causing my bowel to be walled off and leak into my peritoneal cavity.

I was literally full of shit and required a thorough cleaning if I was ever going to survive the poison that had infected me through the hole in my intestine.

As doctors continued the surgery, they found more purulent fluid running between my abdominal organs. My small bowel was inspected from the ligament of Treitz; a muscle that suspends the bowel from just below the stomach. The condition of the intestine was normal in areas facing the inside of the body. However, the side facing the outside of the peritoneal cavity had secondary or chronic inflammation. Signs of Crohn's Disease were found in about a foot of small intestine leading up to the ileocecal junction.

The infection was so severe, the related fluids had started to solidify into stringy matter consisting of protein and cells, the medical term for it being fibrinous exudate.

Despite the serious condition of my small bowel near the ileum, the large bowel seemed Crohn's-free. The right and transverse part of the colon was still full of barium from the last x-ray, however.

After the thorough examination, the surgeons started cutting. More than 15 centimetres of my small intestine from my ileum back and the large intestine up to the mid-ascending colon were resected. The double layer of peritoneum - which suspends the intestines from the posterior wall of the abdomen - was heavily inflamed. It was divided and cleaned as well.

Before the surgeons continued their work, my peritoneal cavity was thoroughly cleaned - twice - by irrigation with saline.

When I later returned to consciousness, the lengths required to save my life were in plain sight. The main incision to enter my abdomen was still an open gash. Stitches were loosely tied just far enough apart to keep my guts from spilling out. The wound was left open as much as possible to keep me from being infected further than I already was.

My condition did not allow me to look down at my own abdomen, which I suspect is a blessing. I was mentally and spiritually depressed already. Seeing my insides might have thrown me over the edge.

The most shocking realisation was the new condition of my digestive system. Due to the severe inflammation, Dr. M decided to give me an ileostomy and a mucous fistula. My small intestine was brought through the skin on my lower-right belly to form a stoma. An ostomy appliance - a plastic bag held onto my abdomen with soft wax - was placed over the stoma to collect the feces that would travel through my small intestine once I started consuming food again.

This diagram shows where the stoma for my ileostomy exited my abdomen. The mucous fistula - which looks similar - came out roughly where the centre of the horizontal section of the large intestine is located. There was little doubt that my life was drastically different than before.

Meanwhile, the part of my large intestine that would have otherwise been attached to my small bowel was formed into a similar mechanism at the top of the entry incision, about four inches below my sternum. This mucous fistula would pass mucous related to digestion and gas from the unused large intestine. That stoma was covered with a cotton-backed patch that stuck to my skin with adhesive, like a band-aid.

Another small incision was made further to the right of my ileostomy where the ends of two, one-inch rubber tubes protruded from my body. This "Penrose drain" allowed fluids from my abdominal cavity to drain out. One of the rubber tubes ran through my peritoneal cavity to my pelvis, while the other pulled fluid from the area below my liver.

As I healed, the intestine could not process anything, not even bile. Alongside the oxygen-supplying clear tubes that poked into my nostrils, a secondary tube was pushed up my nose, down my throat and into my stomach to collect the acid and bile my body would produce over the next several days.

In other words, my only source of food was fed to me intravenously. Water was not even allowed to pass by my lips, leaving my mouth chalky and extremely uncomfortable. The only respite from this feeling came from a foam swap dampened with cold, ice-water and brushed against my lips.

Surprisingly, I felt little pain at this time due to the wonderful benefits of morphine. I was on a drip system that allowed me to push a button whenever I required pain medication. At times, I clicked that button every few minutes. The machine only fed me a limited quantity, but it was enough to keep me floating on a cloud for the first three or four days.

Two nights after the surgery, Coral and my parents were watching television at our apartment in Tudor Village. At one point, my cowboy hat fell off of a hat rack near the suite's exit for no apparent reason.

"Something is wrong with Christopher," my father told Coral and my mother.

Either by coincidence or by some mysterious power, the hat falling from its place was a sign that my "good condition" had changed.

Besides the severe complications that could arise from taking Prednisone, even more can develop while coming off of the steroid. A miscommunication had me pulled off of the medication cold turkey. By the second night of my recovery, my body was reacting badly to the lack of Prednisone now running through my body. I woke up in the middle of the night unable to relax my body. It seemed like every muscle was convulsing, as if I was being electrocuted.

I remember pushing the nurse-call button and attempting to explain my situation. She took my vitals, then later brought in a tablet to place under my tongue. The medication calmed me and I fell back to sleep.

I woke up the next day unaware of what had actually happened to me. My convulsions were actually seizures caused by the cut-off from Prednisone, which must be weened out of the system by slowly decreasing the dosage in stages.

Coral arrived to find my already sallow body beaten and bruised. Apparently, I had caught a couple of punches in the face with my own hands. Due to my emaciated state, my skin was thin and weak. Even a slight knock would have caused damage.

Dr. M arrived and explained what happened. My prescription for Prednisone was returned and I was properly weened off of the drug.

Although I wasn't entirely out danger yet, I had cleared a major hurdle. My life was saved - although changed in a way I could never have imagined - and the healing process had begun to successfully take hold.

The incision on my abdomen was left to slowly close as it healed. It was packed with saline-doused gauze to keep it as clean as possible. The packing was changed on a daily basis.

And the Penrose drain was slowly removed from between my internal organs. At the time, the process produced the weirdest sensation I had ever encountered. A nurse came to my side daily, pulling out the rubber tubing about one to two inches and re-covering it with new bandaging. I could actually feel the tubes move within me, like a pair of snakes waking and slithering between my organs.

Once I was healed enough to be removed from the surgery recovery ward, I was placed in a regular room. Here, the concern turned to the barium still sitting in the remaining four-fifths of my colon.

I had lost all self-consciousness regarding my body image and what doctors, nurses and visitors could see under the inadequate apparel presented by the contemporary hospital gown. However, the process we used to remove the barium - which, left as it was, would destroy my large intestine by hardening like concrete - left me embarrassed and emotionally drained. Coral and my parents were there to witness it all.

A large syringe with a rubber tip containing laxative was placed inside of the stoma to my large bowel. The laxative was slowly injected into me forcing my bowel to begin working its contents through my bottom end. I was moved precariously to a chair with toilet seat. A large bowl was placed below a hole in the chair to catch the refuse.

Laxative was injected through my bowel until it ran clear. I have to admit, the movement was a relief. Although I was immobile, I could feel the heavy barium concoction weigh heavy in my guts.

About a week later, I was moved to another room where I would continue my recovery in a less intensive atmosphere. Although the nurses in the recovery ward were not exceptionally bad, the staff on the new ward had happy, positive attitudes that lifted my spirits substantially.

Until then, I would have infrequent visitors,  friends such as Cal and Tanya or Carla, a work-mate from the sports store. I would try to maintain a cheery demeanour, but generally fell into sobs by the end of our conversations. My emotional state was stirred by the obviously drastic change in my life and the combination of medications I was taking; anti-inflammatories, anti-biotics, Prednisone, ASA and morphine.

But in the new ward, I seemed to come out from under my cloud and began to realise that I was going to survive and return to my life with Coral, the love of my life. Just the thought of going home from the hospital kept me jovial.

There were still times when I'd get down, but I was reading voraciously through the final week of my hospital stay. One of the books was "Man's Search for Meaning" by Victor Frankl. The author was a neurologist and psychiatrist who had survived a Nazi concentration camp. The book outlined what happened to him during his stay in the camp and how he was able to live through it by analysing his experiences as they were happening to him. He was arriving at a theory to human thought and existence by living through the most horrific act of anti-human behaviour in the 20th Century; the Holocaust.

The book should have been a depressing read, but instead gave me hope. I began to think as Frankl did, considering how my situation would improve my understanding of life and how I could pass it on to others, including my unborn children.

By this time, I was starting to process food again, although only a liquid diet of soup, water and gelatin. My abdomen was still weeks from being fully healed, but I had not encountered a problem with digestion.

I was having problems with the diet, though. I was still extremely hungry after not eating anything solid for the previous several weeks. One evening, the smell of pizza wafted through the door of my room. The nurses had ordered a couple of pies for their dinner. When my nurse came in to check on me, I joked how they were punishing patients like me for bringing such a deliciously aromatic meal onto the ward.

"Do you want a piece?" she asked.

"Uuuh. I would love one, but I'm still on a liquid diet plan," I replied, suddenly frightened by the prospect of actually eating solid food with my digestive system in its current condition.

"You've got to try eating something sometime," she said. "It's probably better it happen in the hospital than at home in case there are any complications."

Although ostomy bag technologies have improved
drastically through the past 20 years, the above
example is similar to the appliance I dealt with in
1997.

What could I do? I relented and she returned a few minutes later with a slice of thick, pizza dressed with green peppers, mushrooms, sausage and pepperoni.

"Take small bites," she said. "Take your time. If you have any troubles, just buzz."

Coral helped feed me, but by this time, I was sitting almost totally upright in my bed for long periods of time. I was so hungry, I didn't require her help.

Four or five hours later, the food my body had processed began to appear in my ostomy bag. It was disgusting - although something I had to quickly get used to - but a relief considering there was no pain and I had actually been able to eat something substantial.

I celebrated the accomplishment, but remained frustrated at how my first serious bout with Crohn's Disease had left me.

I didn't understand how much my life had changed until I was finally released from the hospital on June 8, 1997. The frustration would continue to boil as I tried to begin a new life as an ostomy patient.

Tuesday, October 25, 2016

The precipice


Photo credit: Winnipeg Sun
"Then I vomited again, the clear fluid with green flecks splashing onto the floor before me. A few people in front of my wheelchair darted away from me to avoid the projectile stream of puke."

Crohn's Disease wasn't entirely foreign to me at the time of my diagnosis. My mother's sister, Penny, was diagnosed with the disease a few years before. Her battle with it included daily consumption of "maintenance" drugs, a drastic change in her diet and, at times, unbearable pain that made her immobile for days.

According to the results of a test on tissue taken from my bowel during my appendectomy, I was suffering from Crohn's Disease affecting about 18 centimetres of my ileum - a portion of the bowel where the small intestine meets the ascending colon, or large intestine. The pain associated with the diseased ileum and it's location adjacent to the appendix led the walk-in doctor to her diagnosis of appendicitis.

Besides the biopsy of a portion of my small bowel, my diagnosis was also the result of a barium test, where I had to drink a thick, disgusting, metallic paste, sit for up to two hours while it moved through my digestive tract, then obtain x-rays to determine the efficiency of its passage.

Crohn's Disease is a chronic condition that causes inflammation in the lining of the digestive tract anywhere along the digestive system. This inflammation causes abdominal pain, severe diarrhoea, malnutrition, fatigue and weight loss. 
The disease can cause numerous complications, some of them life-threatening. Inflammation can cause an obstruction in the either the small or large intestines. Ulcers, or open sores in the wall of the digestive tract, may also develop with chronic inflammation. When the ulcers extend completely through the bowel, they may develop into fistulas, which is the abnormal connection of tissue between different parts of the intestine, between the intestine and the skin, or between the intestine and other internal organs. Fistulas become especially dangerous when they allow fecal matter to leave the intestine and enter other parts of the body, like the skin, other organs or the abdomen. 
Crohn's Disease may also cause anal fissures, cracks or clefts in the anus or in the skin around the anus. This condition causes painful bowel movements and infections. The disease is also known to cause malnutrition in its patients. Diarrhoea, abdominal pain and cramping make it difficult to consume food and maintain appropriate nutrient levels, while inflamed bowel will lose its ability to effectively absorb required nutrients. Crohn's patients are also at a higher risk of contracting colon cancer.
But this isn't the end of the list of side-effects Crohn's Disease patients need be concerned about. The ailment can also cause arthritis, inflammation of the eyes or skin, clubbing of the fingernails, kidney or gallstones, inflammation of the bile ducts and, in some cases, osteoporosis. 
The cause of Crohn's Disease has not yet been found. The current thought is that the disease is caused by a combination of factors between heredity and a malfunctioning immune system. The idea is that a virus or bacterium is triggering the disease by forcing the immune system to work against the invader. Should the immune system be working abnormally, it will not only attack the invading virus or bacteria, but the healthy cells of the digestive tract, causing the inflammation. 
At one time, diet and stress were thought to be a substantial cause of the disease, but not anymore. They are, however, considered instrumental in triggering relapses of the disease in patients with the disease in remission. 
There is currently no known cure for inflammatory bowel diseases, which also includes ulcerative colitis.
In a report dated May 15, 1997, Dr. G. explained that the Pentasa was having little affect on improving my condition. However, the Crohn's didn't seem to be spreading further up or down the intestinal tract, meaning there was no need to prescribe further medications for the time being.

I weighed about 165 pounds at the time. I continued to suffer from severe abdominal cramping and a total loss of appetite. I tried to return to work, but my condition was growing worse by the day.

After explaining the situation to Dr. G. a week later, he replaced by Pentasa prescription with Prednisone, a corticosteroid that suppresses the immune system for the treatment of severe inflammation. On our first visit with him, he had mentioned the potential for its need, but hoped we wouldn't require the powerful medication. After assessing my condition a second time and seeing the continued downward spiral in my weight and general health, he decided it was a necessity.

While Prednisone has been shown to be effective in everything from arthritis to cancer, consuming the synthetic chemical is a terrible option in any case and, in my opinion, should be used only as a last resort.  Many of the drug's side-effects relate to the patient's mental and emotional well-being. I've come to learn that a positive mind-set is integral to overcoming not only the ailment affecting you, but the stress associated with the entire situation surrounding it. Prednisone seems to do everything it can to mentally defeat you while "helping" ward off whatever is causing the inflammation.

The list of potential side-effects caused by Prednisone includes aggression; agitation; anxiety; blurred vision; dizziness; irregular heartbeat; headaches; irritability; depression; mood swings; nervousness; troubled breathing; numbness or tingling in the arms and legs; pounding ears; swelling in the extremities and other areas of the body; trouble thinking, speaking and walking; and weight gain. 
There are dozens more side-effects on top of these, both physical and neurological.
In my condition at the time, I was willing to try anything. The pain was so severe, it felt like someone was churning a jagged knife around my abdomen from the inside. There was little I could do to fight it. It hit me most frequently at night, when I would just get up and pace the apartment, holding a heating bottle to my stomach or just rubbing my abdomen to try and trick my brain into feeling some other sensation than the unbearable pain.

My "tricks" rarely worked and by late May, I was a physical, spiritual and mental skeleton from the chronic torture, lack of food and inability to hold anything in my stomach.

I had another barium test ordered by Dr. G. After drinking what seemed like a combination of liquid steel and sewage, I remember laying in a dark ante-room in the x-ray ward of the hospital. I shivered in the soulless concrete surroundings. I tried to sleep, but the gurney they supplied me was hard and cold. I just laid there on my left side; which I was told would hasten the barium's passage through my system; trying to sweep away the depression that weighed heavy on my heart and mind.

An hour and a half later, I vomited the barium into a trash can near the exit to the room. I would need to choke down more of the sludge in order to get an accurate reading of the full-length of my digestive system. I cried when the nurse brought me another half portion of barium smoothie. She rubbed my shoulder in sympathy as she left the room.

I saw Dr. G. again on May 27. This time with my mother, who had come to care for me while Coral began taking on more work to fulfill our financial obligations. Dr. G. went through his general assessment and suggested we continue in the direction we were moving. My increased speed at which my condition was deteriorating, however, had both Coral and my mother questioning this assessment and treatment plan.

On May 28, 1997, I woke from a fitful sleep after suffering from another disrupted night of unbearable pain. My mother did her best to nurse me, but, really, there was little she could do but watch her son dissolve before her eyes. It must have been as painful for her as it was for me physically.

That morning, I woke unable to relax any part of my body. I writhed on my bed, only getting up to vomit more clear fluids from by bowels. I hadn't eaten anything solid or moved my bowels in more than a week. A simple glass of water wouldn't even remain in my system.

With tears flowing down my face from the pain and the frustration with the situation I found myself in, I asked Coral and Mom to take me to the emergency ward.

I was in a haze and barely coherent enough to walk down the stairs towards the foyer and out into the parking lot. Coral and my mother each took an arm and guided me to our vehicle - now a Suzuki Sidekick - and rushed me back to the Victoria General Hospital.

I spilled out of the Sidekick at the emergency entrance and stumbled into the building. Someone brought us a wheelchair, where I sat barely noticing the chaos of the conventional city emergency ward around me. Then I vomited again, the clear fluid with green flecks splashing onto the floor before me. A few people in front of my wheelchair darted away from me to avoid the projectile stream of puke.

I was handed a shallow bowl, but it was filled with even more of my stomachs contents - which, despite not being full for days, seemed to have a bottomless supply of bile and stringy, clear, acidic liquids.

Due to my condition, I was placed in a triage line for "urgent" cases, then rushed to the head of the queue as I continued to vomit. Once past the triage desk, I let my mind relax and fell into a cloud, only noticing the nurses buzz around my gurney and the touch of Coral's hand in my own.

A nurse taking my blood pressure winced and sighed when she saw the results. Coral caught a glimpse of the screen despite the nurses efforts to turn it away from her. My heart rate was dangerously high; my blood pressure frighteningly low. The nurse rushed away, returning not long after to hook up an IV line to start feeding my emaciated and dehydrated body with nutrients and fluids.

The same internal surgeon who performed my appendectomy arrived to assess my condition and explained that he may need to do extensive surgery to determine what exactly was happening inside of me.

Despite feeling a peace and relaxation I hadn't experienced in weeks, I didn't realize how close to the precipice I was. Coral remembers me hallucinating, talking to people who were not in the room. At that moment, with consciousness dimming and my senses deceiving me, my body was giving up the fight.

In my stupor, I didn't realize how close I was to dying.

Thursday, October 13, 2016

Food equals pain

We lived on a tight budget those first couple of years, but Coral and I grew comfortable with married life without the embellishments many young couples accrue today; the house, the camper, the recreation vehicles, cable television, a full pantry.

We did, however, grow tired of our living accommodations at Adamar Place - a 12-floor apartment complex just off of Pembina Highway in South Winnipeg. Most of its residents were senior citizens and didn't appreciate younger people having guests over for dinner or drinks. Some complained simply because the television was too loud.

At the time, there was little we could do with where we lived. Coral began work on her Masters Degree in Kinesiology and drew a small income with part-time employment at a private athletic therapy clinic across the city. I was still drawing a miniscule, full-time salary at a sporting goods store in St. Vital Centre. Between rent, utilities and the need to maintain two vehicles, the monetary intake could not keep up with consumption.

But we were happy. Our social circle included a decent group of young employees from the store and some friends from university who stayed in Winnipeg after they graduated. We met Steve and Kathleen while living in Mary Speechly Hall at the U. of M., where we also developed a friendship with Calvin and Tanya. Calvin was the Resident Assistant on the seventh and fourth floors during my two-year residency at Speechly. Coral and I would exchange visits with them at our respective apartments, grab a meal at an area restaurant, catch a movie or spend the night at a bar.

Although there were benefits to living at Adamar Place, including its close location to my workplace and the ability to simply grab my fishing rod and walk behind the building to toss a line into the Red River, Coral and I craved accommodations similar to that rented by Cal and Tanya. The couple lived in Tudor Village, a two-storey, alpine-themed conglomeration of apartment complexes located a few blocks south of the university. Coral and I left our names with Tudor Village management in the hopes that they would call with news that an apartment had opened up. In the spring of 1996, one did and we snapped it up.

Although the Adams's high rise apartment served its purpose; it was cheap, convenient, clean and had a pool in the basement that I used a total of two times; our new home was much more accommodating to our lifestyle. The tenants were younger and more patient about fellow residents with a spirited social life. Many attended university themselves, so there were times when we were the ones putting up with a loud party or a fight in the parking lot.

Nevertheless, we loved our new home. It was smaller than the previous place, but there were only two of us to be concerned about and it was a bike-ride away from Coral's work on campus. Cal and Tanya lived two buildings away, making it convenient for us to visit over meals and a few drinks on a Friday night or a lazy weeknight. And it had a wood-burning fireplace, which I used constantly during the winter.

Whenever we found the time, we ventured back to Saskatchewan to visit our folks or camped at White Shell Provincial Park with Steve and Kathleen. I found myself losing some of the weight I had put on during my two-year stint at the U. of M. This was partially due to our lack of finances. We couldn't just whip down to the convenience store for an unhealthy snack or to the fast-food place for a meal. We scraped by on what we could pick up cheap at the nearby Safeway.

I was also more active. Coral and I jogged two or three times a week on a middle school track located across the street from our apartment complex. That activity was something I took up in my senior year of high school, but stopped after entering university. We also enjoyed regular walks or bike rides through King's Park, a green space along the Red River a few blocks south of Tudor Village.

In the inventory room at the store, I found and purchased a cheap pair of inline skates - which were exploding in popularity then. When the ice and snow disappeared, I began skating the five kilometres to St. Vital Centre. I was getting leaner and stronger. I was still smoking, unfortunately, but my lifestyle was changing for the better otherwise. I drank less, and ate better.

Sometimes, monsters lurk in happy places, though. There was more to my weight-loss than I first suspected.
And, while our living accommodations were comfortable, they would serve as the setting for my first tour through hell.

--

The store I worked in had a managerial shuffle through the summer of 1996. An assistant manager left the company, while the manager who hired me was promoted to regional responsibilities and took over a struggling store located in Kildonan Place at the north end of Winnipeg. A young, co-manager from the Polo Park Shopping Mall location was moved to St. Vital Centre.

Although I had made inroads in impressing the previous manager, we still didn't see eye-to-eye on many things. Many of them were corporate regulations that he had no control over, but I felt his strict adherence to them - while he bent them for himself - was hypocritical and immoral.

The younger manager also stuck closely to these regulations, but he was more adept at handling complaints and situations with employees in a political manner that seemed to keep everyone content. In fact, our store began to grow due, in part, to a fresh attitude and an atmosphere of success developed by the new manager.

You will learn later that he could still be an asshole.

The change in management rejuvenated by own attitude towards my work. I didn't feel so intimidated and was more open about my ideas, concerns and suggestions. Although I was still a full-time, manager-trainee, I took it upon myself to take on more responsibilities and be proactive with what I thought would be a long-term career in the retail industry.

But in December of 1996, something else was starting to occupy my mind. Although I had continued to become more physically active, I was having unexplained abdominal pains that, at times, were unbearable. They were sporadic at first, striking me at work once or twice every couple of weeks as I ate my lunch; sandwiches made with bread we made in a machine at home. When the cramping hit, I would eat as much as I could, but generally found myself trashing most of my meals.

At night, I was generally fine. For some reason, these episodes primarily hit me at work. It wasn't long before they were happening everywhere at any time.

Nevertheless, I continued to socialize over a beer or two, and had a growing addiction to sunflower seeds, which would ultimately prove to be a dangerous combination.

The cramping in my abdomen - which focussed in my lower-right quadrant - grew more frequent during the final weeks of winter in 1997. The pain wasn't enough, in my niave opinion, to seek medical attention, but I continued to eat less, lose weight and suffer from severe low amounts of energy due to a lack of sleep.

Besides being unable to move my bowels on a regular basis, I was beginning to wake up in the middle of the night with torturous pain in my torso. It seemed to cycle in a clockwise fashion from the bottom right area to the top, to the left, back to the right again. No matter how much heat I applied or how long I rubbed my gut area, the pain would not subside for hours. All I could do was get up, rub my belly and walk around our tiny suite.

That spring, the City of Winnipeg was under serious threat of flooding due to a wall of water being pushed up through Southern Manitoba by the Red River. It quickly became known as "The Flood of the Century," particularly after the it sunk the city of Grand Forks, North Dakota. Television coverage of the disaster there showed a downtown core immersed in water while fires leapt from building to building in the city's commercial sector. About 46,000 people were evacuated from Grand Forks, and the damage from the flood motivated Manitoba's provincial government to move approximately 25,000 people from homes located on or near the Red River flood plain. Besides people, thousands of farm animals were transported to high ground, including more than 2,000 head of cattle and 45,000 chickens.

Thousands of volunteers stepped forward to help save people and property from Winnipeg to the Canada-U.S. international border 100 kilometres south. The Manitoba government also requested help from members of the Canadian Armed Forces and a shoring of members of the Royal Canadian Mounted Police. As the flood moved north, heavy machinery was commandeered to construct a 42-kilometre-long wall of earth to save the City of Winnipeg. It was named the Brunkild Z-dike and cost $10 million to finish.

The flood ultimately expanded to cover about 2,560 square kilometres and became known as the "Red Sea." The water caused about $3.5 billion in damages, $500 million of which occurred in Manitoba.

Despite finding myself in pain more frequently, I used the afternoon of a day off of work to help sandbag around a home sitting alongside the Red River near King's Park. I stood in a line of sandbag tossers for about three hours, rushing to keep up with the rising river level. At one point, I stood at the top of the dike slinging sandbags to the next person in line while the Red River rushed just two or three feet below my feet. The experience was both exhilarating and nerve-wracking.

It also taught me lessons I would use to help save my parents home from severe flooding along the Qu'Appelle River and its chain of lakes in 2011 and 2014.

By late afternoon, the pain in my abdomen had returned and I decided to go home. The idea that helping to stem a potential disaster may take my mind off my mysterious health issue and the painful side-effects did not come to fruition.

Coral and her athletic-therapist friend, Liane, continued to help southern Manitoba residents affected by the flood for the next two weeks. On several occasions, they stood along Canadian Forces members on the front of a pay-loader that carried them through frigid water to farm homes requiring sandbagging and continual water pumping.

Although I've always been a news hound and journalist at heart who craved being an eyewitness to major events, I missed much of the Flood of the Century. Most of it was spent at maintaining a sports store with, understandably, little customer traffic and trying to find ways to fight what was quickly becoming constant pain.

By early May, I couldn't take it any more. I had been suffering for a week without intermission and dropped about 15 pounds in the previous month and half. I sought help from a doctor at a walk-in clinic near St. Vital Centre. The doctor - an attractive-but-curt An young woman with very little patience - examined me without emotion. She disappeared for a moment, then returned snapping a rubber glove on her hand.

Although a rectal examination is not an unusual part of a general physical examination, especially for men over the age of 40, it was an entirely new and incredibly uncomfortable experience for me. After poking around for what seemed like five minutes - but was probably more like 30 or 40 seconds - she determined that I was suffering from appendicitis and required immediate attention. She wrote a prescription for pain medication and suggested I enter the hospital via the emergency ward.

After explaining the situation to my manager at the store, I went home and called Coral, who picked me up and transported me up Pembina Highway to the Victoria Hospital. We waited about three hours before I was finally assessed by a triage nurse. Carrying the written diagnosis from the doctor at the walk-in clinic helped move things along, somewhat.

While the growing pain and concern about what exactly was going on in my torso was not new, I was surprised to find myself so suddenly admitted to the hospital waiting for surgery. I was 23 years old and almost two years into a marriage that hadn't even been celebrated with a honeymoon yet.

This was not part of the plan.

But, all things considered, an appendectomy was a relatively minor procedure if the infected appendix was diagnosed in time. I had laproscopic surgery - which required only a two small incisions in the lower right corner of my abdomen - and the appendix was removed.

During his regular rounds the next day, the internal surgeon who performed the appendectomy stepped into my room and stood at the end of my bed. With Coral at my side, he explained that tests on my appendix showed it to be healthy. What he did see during the operation was about "10 centimetres of terminal ileum inflammation with creeping fat." Tests were still being completed on small portion of my bowel to determine what exactly was causing the inflammation.

I was released from the hospital with recovery instructions and a referral to a gastroenterologist; yet another doctor. In a period of days, I went from not even maintaining a family physician to having an internal surgeon and a gastroenterologist on my case.

My condition worsened during my recovery period at home. My appetite had lapsed substantially and when I did eat, I frequently vomited a couple of hours later. I was no longer finding it difficult to move my bowels, but now the pendulum had swung the opposite way. The movements were loose and frequent.

Nevertheless, I returned to work a week later, spurred along by a solid supply of Tylenol 3 tablets. Frankly, I was stoned most of the day. I zoned out in a quiet corner of the store most of my shift. When I did serve customers, I made mistakes punching in their purchases on the till. I laughed at myself and explained my lack of functionality to total strangers by saying I had just at an appendectomy and was on "some pretty awesome meds." I was also taking a daily regime of Pentasa, a strong anti-inflammatory generally prescribed to patients suffering from inflammatory disorders.

The store manager, who was patient with me despite my condition, tired of hearing me tell this to customers, so he put me on inventory-taking duties in the stockroom. I wasn't productive there either.

Dr. G., a gastroenterologist in Winnipeg, broke the news of my final diagnosis at our first meeting. I was deemed a chronic patient of an inflammatory bowel disease known as Crohn's.

The last threads of my belief that I was invincible - that I would lead a long, disease-free, healthy life with Coral - were instantly shattered. My mind clouded and my body went numb. This time, it wasn't prescription medication putting me in a state of delirium.

After living the first 23 years of my life without even a broken bone, I had suddenly become the victim of a chronic, incurable disease.

The shock and depression linked to the situation was only dulled by more pain. I knew then I was on a long, painful, arduous journey.


Image credit: thecrohnsinfection.org