Gordie and Me and Crohn’s – Makes Three

When my husband, Gord “the boy” Haddock, was thirteen, he told me he always felt better when he was standing beside me. It was a sweet statement, but neither of us realized what it actually meant; it was an indication that he didn’t always feel fabulous.

Crohn’s disease, a name unfamiliar to us at the time, came into our lives during our late teens. I remember thinking that Gord caught the flu, quite often. Many times, on a drive, we would have to speed up, because Gord’s need for the bathroom had become urgent. I remember thinking, nonchalantly, that he should use the facilities before we travelled. His dietary choices presented another concerning clue about his health. He often refused high fibre foods, protesting, “That’s too healthy for me.”

We married in 1970, and although we still didn’t know about Crohn’s, we knew our plans were often interrupted by Gord’s health. It was like having a demanding relative that dropped in, unannounced, interrupting plans. When our first daughter was almost a year old, we were enjoying a perfect day at the lake when Gord began feeling uncomfortable. He spent much of the afternoon sitting in the car with the summer breeze blowing through the windows. Sadly, he was doubled over in pain with sweat trickling down his cheeks.

A few years later, we were ready to drive to Swift Current from our small town, with our two little daughters in tow. We were excited to board a late-night train for Vancouver. Our itinerary was planned; our hotels were booked. As we piled into the car, I noticed that Gord wasn’t looking good. He thought he was coming down with something. As he drove, I could tell he was experiencing pain. We made it to Swift Current, but the train was delayed. Gord spent several hours hunched over, sitting on a wooden bench in the station. We began to refer to these episodes as stomach attacks and there were many.

In the early eighties, Gord had two surgeries for perianal abscesses. Although such abcesses can indicate Crohn’s, that isn’t always the case, so we still didn’t have a diagnosis.

Gord’s attacks became more severe. The uninvited guest would take whole days and nights out of his life. Tests were arranged for Gord in the nearest city, on more than one occasion, but he always felt better by appointment day, and the tests revealed nothing. Eventually, he was able to have an ultrasound, during an attack, and a diagnosis was made.

After the diagnosis, we fell into a fairly comfortable routine. I developed special recipes that worked when he was having a bad time. We learned some of his triggers. We expected the unexpected. Gord respected Crohn’s, the third party in our relationship, because it did, in fact, rule our lives, but he refused to fear or dread it. The two became fair-weather friends.

In January of 1996, Crohn’s upped its game. Gord began a cycle of debilitating attacks that put him in hospital, time and again. He lost weight. We tried corticosteroids and other medications; Gord developed every side effect mentioned in the literature. As his condition worsened, his abdomen began to enlarge, and he couldn’t stand the pressure of waistbands or zippers.

Our specialist believed that our love, my special recipes, and Gord’s good attitude would put him into remission, like it had historically. This time it wasn’t going well. We had no experience with this chronic condition, so we adapted to every challenge, assuming this would be our new reality. I took zippers out of Gord’s jeans and sewed maternity panels in their place. We piled pillows around his abdomen to protect him during sleep. By early August, Gord had to slide down the stairs on his backside, one step at a time. He was skeletal, pale, and his muscles had atrophied. We were in trouble.

I called the specialist and asked to meet with our medical team. Gord refused to let me call an ambulance, and he crawled to my car on all fours. At the meeting, I asked the surgeon what he would do if he were in Gord’s situation. He admitted he would have asked for surgery several months previous. The surgeon was leaving the country in two days, but he would operate the following morning, if we agreed. I looked into my husband’s eyes questioningly and he nodded, weakly. We signed the papers.

August 8, 1996 was surgery day. The expected two-hour surgery stretched to six hours and as the clock ticked on, I became more agitated. The patient, in the bed next to where my husband had been, told me to have faith. No news meant they were still working on him.

Eventually, a young, surgical resident came to see me and told me that Gord was in recovery and would be taken to intensive care. She noted that the surgeon had followed his intuition and made a low horizontal incision instead of cutting vertically. This likely saved Gord’s life, because a very large abscess had been trying to exit through his abdomen and was best avoided. There were dozens of abscesses and infection had spread, so they were forced to remove several feet of bowel. Luckily, they found healthy bowel tissue and were able to do a reconnection. The resident was very proud of the job they had done. Apparently, Gord was squeaky clean inside; each organ had been rinsed and replaced. He might need a transfusion; his iron was dangerously low. He would spend several days in intensive care.

The next ten days were filled with emotional moments. My frail husband was on pain medication, in shock, and adrift in an unfamiliar world. The boy, who at thirteen years of age, felt better beside me, now wanted me beside him, continuously. Each night as I prepared to leave the hospital, he would beg me to stay a little longer. Gord was obsessed with thoughts of home. Heart surgery patients came and went, but Gord remained in intensive care. Finally, on August 17, they moved him into a regular room. I was happy for him. I felt relief.

The next morning, I was shocked when Gord called me to ask if I would please come quickly to the hospital to collect him. He had checked himself out. Pardon me, I thought? I was totally unprepared. Where would we put him; what would I feed him; who would change his dressings; how would I make him comfortable? I didn’t understand. He assured me he had things completely under control. I was sure it was the drugs talking.

When I pulled up to the hospital, I was overwhelmed with empathy. There he sat, outside, in a wheelchair, 130 pounds stretched over his six-foot frame. He had plants and flowers on the ground around his wheelchair. On his lap, a plastic bag held the few belongings he had taken to the hospital. He was so skinny that the mischievous smile I love, took up most of his face. Time stood still when I saw him raise one long skinny arm, as high as he could, in a wave of enthusiasm. The mental image evokes tears, twenty years later. The scene was comical, pathetic, and tragic.

Together we got him into the car. We should have had a professional to help. As always, Gord had a plan. He asked me to stop for Tim Horton’s coffee. He wanted to park by the neighbourhood lake with the windows down. He had been thinking about this moment for days. Once parked, he inhaled the smell of the coffee. He savoured the first sip. While enjoying the fresh air from the lake, his eyes twinkled, confirming for me that he would get better. It was going to be a tough journey. We were told he would likely need a surgery every five years. He assured me that wouldn’t happen. He planned to never have surgery again.

Once home, it took us many minutes to ascend the stairs to our bedroom. I had left the windows open and the curtains back. The room was fresh and inviting. He was exhausted. He slid between the sheets and inhaled the smell of home-washed linens and whispered, “Thanks.”

Gordie Getting Stronger

There were many stages to his recovery, but gratitude continued to fill his heart. He loved the sounds I made in the kitchen or on the phone. Through the windows, he listened to birds singing and trees rustling. He even welcomed the abrasive sounds of buses and cars. I became an expert at changing dressings, sponge bathing, creating special recipes, reading aloud, and providing movies, gentle exercise, and good music. I also became his clerical assistant, opening mail, running errands, and discussing business. Eventually, he was able to descend the stairs, on his backside, and join the family for a brief meal. He promised us that by Thanksgiving, of that year, he would join us for the entire family feast. He met his goal, made a toast to his own good health, and we moved forward, feeling thankful everyday.

August 17, 2016: twenty years post surgery

Today, we continue to follow a strict routine. Gord goes to the gym regularly, partly for his mind, and partly to build some muscle, because he remembers how fast he atrophied. He makes choices for meals using intuition as well as personal history. We go to bed early and rise at the same time each day. We laugh a lot – really a lot. We surround ourselves with happy, uplifting people. We have a seamless approach to living with Crohn’s disease; we don’t agitate it. It is stronger than us.

We share this disease in a unique way. Gord has the Crohn’s, so he feels I should read the journals to keep up with research. I also record his attacks, because he prefers not to remember them. He will cheer new patients on, taking time to encourage them, but he rarely talks about his disease.

Although Crohn’s is an inconvenient disease and continues to pay us uninvited visits, it has also presented us with gifts. When Gord was young, he was a force of energy, and I have, occasionally, wondered if I would have kept up with him if he hadn’t had Crohn’s. He has received the gift of comparison. Feeling good feels so much better after feeling really bad. As a couple, we have received the gift of perspective. We don’t dwell on the little irritations in a relationship, because we know each good day is a gift.

I would like to congratulate my husband for living twenty years with no surgeries. He has never allowed his condition to stand in his way or be anyone else’s problem. Dr. Rossi was the head surgeon on August 8, 1996, and he flew to the Middle East, the very next day, to begin a new life. We tried to reach him, annually, for the first few years, sending photos that illustrated Gord’s improvement. We received no response, so we are convinced that he didn’t receive our letters. Maybe, through the wonders of the Internet, Dr. Rossi will see this blog. If anyone knows this doctor, please tell him that Gord Haddock has navigated through the past twenty years of Crohn’s disease, without another bowel surgery. We are grateful to Dr. Rossi and the enthusiastic surgical resident, as well as the dozens of nurses who helped us.

Of course, as I write this, Gord has driven us home, from Calgary, mid-attack. His summary of the situation is simply, “I have to get back to my routine.” There will be tapioca pudding and home made turkey broth tonight.

NOTE: If you are a more social Crohn’s patient, please check out Crohnology, a social network connecting patients via the Internet, where information of all kinds can be shared.

FYI: Crohn’s disease was named after Dr. Burrill B. Crohn who, along with his colleagues, formally discovered the condition in 1932. Of course, the symptoms were documented well before that time. No two cases of Crohn’s disease are ever the same, so making such a discovery would have been very difficult.