Pelvic pouch powers, six years after surgery

“You should probably get here soon, your dad isn’t doing so well.”

I received the call at work on a Tuesday morning last December from one of the nurses attending to my father in St. Joseph’s Hospital. I scrambled to gather my things and let my boss know that I had to leave.

“Go do what you have to do,” she said.

I didn’t know what exactly what was happening as I set out on the 45-minute drive from my office to the hospital. But I did remember hearing something similar from another nurse some 19 years earlier. My mother was in the intensive care unit at Toronto General Hospital. I was sitting in a waiting room on a floor below the ICU when a nurse came to tell my family and I that my mom wasn’t doing well. I remember running up the stairs to her room in the ICU. She was asleep, but gasping. Alongside several family members, I watched her die – the result of a cancerous brain tumour.

As I drove eastbound on the Queen Elizabeth Way into Toronto, I didn’t really think I was heading into a similar situation. My father had been in hospital since September, and while there was no improvement in his condition, there was a sort of routine we’d become accustomed to. He would go for dialysis three or four times a week. About as often he’d have short walks with a physiotherapist, and he spent most of his days in bed reading the newspaper, watching sports and news on my iPad, listening to music, but mostly sleeping. That’s how I expected to find him.

I parked my car and hurried up to his room. As I did that night my mother died, I ran up the stairs two at a time. The door to my dad’s room, which was usually open, was closed. I pushed it open and peeked inside. The IVs were disconnected. The monitoring machines off. A white blanket was draped over his body from the neck down. The nurse who had called me caught up to me at the door and put her hand on my back.

“I’m so sorry,” she said.

I gasped, clutched my chest, then buried my face in my hands as the tears poured out. “I thought we had more time,” I softly blurted out.

The day before my father died, he and I made the decision to stop his dialysis. He had reached the point of end-stage kidney failure, and that was on top of other comorbidities – heart failure and multiple myeloma. We spoke with the hospital’s palliative care staff about moving him to a room in the palliative care wing, and possibly even having him transported to a hospice outside the hospital. We even kicked around the idea that he could have a short visit to see his home one more time before moving to the hospice. None of that came to be. But we thought we had days left, not hours.

One of the palliative care coordinators who we spoke to came with me into the room. I knelt down at the bedside. “I’m sorry dad. I’m sorry I wasn’t here.

”The coordinator pulled a chair over to the bedside for me. I sat down and wiped my eyes with the sleeves of my sweater. “I should have been here,” I whispered.

“Your dad went through a lot,” the coordinator said. “Sometimes the people we love don’t want us to see them suffer any more, but they just need to know that it’s okay for them to go. I think your dad knew that now it was okay for him, and maybe he wanted to that by himself.”

I nodded. There was comfort in her words, but I still felt like a let down. I should have been there when he died. I shouldn’t have gone to work that day. I shouldn’t have even left the hospital from the night before. I wasn’t there when I should have been, and I’ll always regret that. No matter what anyone tells me.

I sat alone with my dad for about half an hour. It was sad, but peaceful. I remembered the fun times we had. The trips we went on. The downturn in his health that spanned the previous three years. I looked at him and smiled, because he brought much happiness into my life, and I remembered that above all.

~ ~ ~

What does all this have to do with a pelvic pouch? Thanks for asking. And thanks for sticking with me up to this point. I promise I’m getting to the j-pouch stuff.

My sixth year with a pelvic pouch was easily the hardest. My father’s health continued to decline, which meant I needed to be around more to help him. To make that happen, I bought my first car. That led to a series of new expenses which had to be managed on a smaller salary, the result of me changing jobs in January 2019.

Through the stresses of caregiving and work and managing changing finances, my pouch functioned well. On days when I had to accompany my dad to his cancer treatment sessions, I didn’t have hard to control urges to use the bathroom. On days when my time was split between my office and the hospital, I had my usual 6-7 bowel movements (which by now is routine, even though the number itself may seem high to someone who doesn’t have inflammatory bowel disease). On days when I could take a break from caregiving, I could walk to and from work, then enjoy a dinner date with my girlfriend without worrying about abdominal pain or needing to pack extra underwear in case of an accident.

I think it’s evident that I wouldn’t have been able to manage the hardships of the last year if not for the pouch itself. I think back to when my ulcerative colitis called the shots in my life. When it was hard to manage the disease even with treatment. If my UC was in that sort of state while I had to take on all the challenges of the last year, I’m pretty sure I would have ended up in hospital along with my dad.

The last year wasn’t all garbage though. There were a lot of good moments too. I swapped a difficult and draining work environment for a place where I feel valued, where I can enjoy my job, and where people care about life outside of the office. When I needed flexibility in my schedule or the ability to work remotely, there was never a hint of concern or pushback from my supervisors. Their empathetic thoughts and actions helped me care for my dad, and for myself. Another huge perk of my current job is that I have the opportunity to walk or cycle to work, and getting in that 10K roundtrip of activity is a real boost to my mental and physical health. I’m looking forward to warmer weather so I can walk without so many layers and dust off my bike again.

Speaking of biking, I actually did a lot of it last year. I spend most of the summer training for the 50K Tour de Mississauga, a non-competitive bike ride around the city. I was all set to take part in the mid-September ride, but the night before the event, my dad called me to say he was feeling very weak. When I arrived at his house, I found him shaking, so we called an ambulance and it was off to emergency. I haven’t been on my bike since that time, but I hope I can build my ability back up again this spring.

I ran a 10K with virtually no training in May 2019 with the Guts to Run team to raise money for research into Crohn’s disease and ulcerative colitis. Then in June I volunteered to be the MC for the Peel Region Gutsy Walk, another IBD fundraiser, when an emergency pulled the original MC away from the event.

In spite of the bursts of activity, stress and laziness were a couple of overriding themes that led me to eat more and exercise less than I should have. As a result, I've gained weight, and of course it went to all the wrong places. I've got a blubbery belly but my arms are still thin. Fabulous. All that said, I think having a pelvic pouch, and needing to empty it 6-7 times a day, prevented me from gaining even more unwanted flab. So that's cool I guess, but I still hate my body (fuck off, Lizzo).

Throughout the year, my girlfriend and I grew closer. We traveled to a wedding in Los Angeles (where the photo at the top of this post was taken – zero pouch issues through the travelling, by the way), and went on a bunch of fun one-day excursions to conservation areas and parks and botanical gardens. But above all, she was there to provide unwavering support through my father’s hospitalization, his death, and the current complexity of sorting out his affairs. Her presence made the last year easier and more enjoyable, and I think that makes a big difference in maintaining good j-pouch health.

As hard as this year has been, my pelvic pouch has withstood the surprises and challenges thrown at me, and allowed me to take on some of the most difficult, but most important, responsibilities of my life. And it let me do plenty of things that made me happy, and that’s really the most important function of any j-pouch. As I have been on my past pouchiversaries, and as I am every day, I am immensely grateful for the reworked digestive system that I have, the talented scientific people who made it possible, and the patients who came before me and volunteered to undergo procedures that had never been done before. I am the fortunate beneficiary of the progress made in treating ulcerative colitis, and yet I remain acutely aware that not all people living with Crohn’s or colitis get to enjoy this level of post-operative success. I sometimes feel guilty about my relatively easy life, and yes, it is relatively easy – disease and caregiving and unhappy times and all. I should probably remember that more often.