Reflections on the Twists and Turns of My Small Bowel
Episode 5: Acceptance
By Patrick Doyle
It’s been eight years since I was first admitted to hospital with a twisted and blocked bowel. The past two years have been largely problem and hospital free. I continue to recover – although I feel I am not back to anything near my previous strength, neither physically nor mentally. So in many ways my journey is ongoing.
But the past two years have afforded the time to reflect on my illness and think about what insights or “learnings” can be gleaned from my experience.
As I look back on that first night and on the days, weeks, months and years that followed – the hospitalizations, the eight surgeries the scans, the drains, the infections, the constant home care, the dressings…everything that was my experience, what stands out more than anything and one I wish I could change is the ignorance and general lack of knowledge I had around and about my own body. I believe if I had been armed with a better understanding of my own biology, it would have better prepared me, both physically and mentally, for what I had to endure.
It’s too easy to complain and point a blame finger at the medical profession or hospital system when things go wrong. But the fact of the matter is: they – the doctors, nurses, surgeons, admin and support staff – everyone, does their best.
They are not superhuman magicians who are all-powerful and all-knowing. They are just human, just like the rest of us.
They are amazing people working under very difficult conditions. They carry with them every minute of every day the responsibility of our health and well-being – our very lives. It is an enormous responsibility and, for the most part, they execute it with grace, skill and compassion.
Sure, I could tell you about some of the bad days when things went really pear-shaped. Like the night when my CT scan was read incorrectly. Like the time I didn’t get the right antibiotics. Or the time the NG tube didn’t function properly. (Speaking of Naso-Gastric intubation: Of all the different procedures I went through, I would have to say that the insertion of the NG tube up my nose and down my throat, was the most unpleasant, painful and frightening).
As I wrote before, it’s true: medical language and terminology can be very confusing. And it’s true, there is a general trend happening in society which some commentators have labelled the “reversification” of language, where the true nature of something is concealed by giving it a label whose meaning is close to the opposite of what is being described. This is certainly true in the legal and banking sectors where language, it seems, deliberately serves to confuse and obfuscate.
But it’s one thing not knowing what a legal factum or a financial derivative is – it’s another not knowing how your own bowel works. We simply need to know more about our own bodies and how they function, going well beyond our childhood games of “Operation”.
As patients, we need to better educate ourselves. Back in 1632, when Rembrandt painted Dr Tulp (who, by way of an aside, would go on to discover what is today known as the “Tulp valve” which connects the small and large intestine), anatomy lessons were a social event, taking place in lecture rooms that were actual theatres, with students, colleagues and the general public being permitted to attend on payment of an entrance fee.
The Anatomy Lesson of Dr Tulp, by Rembrandt, 1632
Today, attending such lessons is not possible. Instead, what we do have is instant access to a wealth of information and knowledge, all at our finger tips, and all for free. Never before have we had such unlimited access to research, online communities and support. We simply need to take advantage of the times we live in and better educate ourselves. It is our responsibility.
As patients, we simply can’t be passive bystanders blindly accepting and following what in effect are generic and average case-based treatments. It is we who know our own bodies the best - at least, we should. It is incumbent on us to really take charge of our own diet and figure out what our bodies like and respond well to and anticipate potential problems and take our own corrective action. We are all different. We all have our own quirks and idiosyncrasies and it is incumbent on us to become active agents in our own healing process. We need to be able to better advocate for ourselves. Again, it is our responsibility.
And so, to my final word, which is a word of thanks: a heartfelt thank you to all the staff of Mount Sinai and Humber River Hospitals: from the surgical teams of doctors and surgeons to the administration and support staff; from the patients with Crohn’s and colitis I met (and from whom I learned a great deal and whose courage and determination put my own suffering into stark contrast) to the Intervention Radiology department team; from the porters who wheeled me up, down and around to the cleaning staff whose job is amongst the most essential but perhaps the most overlooked and least appreciated.
I give thanks to a former Olympian and my dietitian Dr Rachelle Viinberg, whose elimination diet worked wonders for me which reduced the inflammation in my body and finally helped close that stubborn fistula.
I give thanks to the wonderful home care nurses of St Elizabeth who came daily into my home, to administer their care, change my dressings, empty my drains and order supplies. (Speaking of which, I still have rolls of tape and gauze leftover from my deliveries of supplies that always arrived on-time from Calea, the leftovers of which I still have today and allow me to make a homemade band-aid whenever one of my kids gets a scrape.)
I give thanks to everyone who visited me, who sent words of encouragement, who prayed for me, and who stood by me throughout it all.
I give thanks to the country Canada and the province of Ontario I live in and to the health system and everyone who works in it, which, while not perfect, is still pretty amazing.
I’m not a religious person but the words from Thessalonians capture it best:
“In everything, give thanks.”
This is my story and I thank you for reading it.