Reflections on the Twists and Turns of My Small Bowel
Episode 4: Anger
By Patrick Doyle
To this day, no one has ever been able to identify why my bowel got twisted and caused the blockage which necessitated the emergency surgery. Various explanations included “freak” and “rare” but not totally “unheard of”.
Bizarrely, medical knowledge about our bowels has, up until recently, been fairly limited and an area somehow overlooked. More recent studies into the gut however, point to evidence that the enteric nervous system (ENS) – which is embedded in the lining of the gastrointestinal system, operates independently of the brain and spinal cord and there is evidence suggesting that the ENS evolved before the Central Nervous System CNS.
In The Good Gut: Taking Control of Your Weight, Your Mood and Your Long-Term Health, published in 2015, authors Justin and Erica Sonnenburg, identify the primal connection that exists between our brain and our gut. We often talk about a “gut feeling” when we meet someone for the first time. We’re told to “trust our gut instinct” when making a difficult decision.
They write: “This mind-gut connection is not just metaphorical. Our brain and gut are connected by an extensive network of neurons and a highway of chemicals and hormones that constantly provide feedback about how hungry we are, whether or not we’re experiencing stress, or if we’ve ingested a disease-causing microbe.
This information superhighway is called the brain-gut axis and it provides constant updates on the state of affairs at your two ends. If you’re stressed, your gut knows it – immediately.”
So for me, yes, I think it was stress that caused my bowel to twist. I was stressed about a lot of things that were going on in my life, as I mentioned in Episode 3.
But nothing could have prepared me for the stress I felt when I absorbed the news post-operatively that my surgery didn’t go as planned.
Stress that would turn to anger.
To untwist my bowel, a laparascopic – or key-hole – procedure was recommended because, when it works, it is less invasive and the patient recovers more quickly. Unfortunately, in my case, the bowel was perforated, its contents spilling into the abdomen. A laparotomy was quickly performed to repair the puncture, but the damage had been done. Years of complications were about to begin.
Postoperatively, I developed intra-abdominal abscesses and a wound infection, requiring drainage, prolonged packing and the insertion of intra-abdominal drains placed by interventional radiology.
I then developed a non-healing wound, as well as recurrent pelvic abscesses secondary to a perforation of the rectum. I subsequently required another operation in January 2012, at which time the rectum was repaired, a segment of the small bowel was excised and a large hernia was repaired.
At the same time, I developed herniated discs in my back, aggravated by abdominal wall problems. A large ventral hernia in the mid-line fascia was later detected. In February 2013, I was admitted and underwent a laparoscopic component separation. Unfortunately, during the laparoscopy, there was a second injury to the bowel resulting in a perforation which required it to be sutured. I had lysis of adhesions of the small bowel that was stuck to the anterior abdominal wall. I developed an ileus after the operation and became anemic with low hemoglobin from the hemorrhage in the anterior abdominal wall.
I then developed an infection when the mesh became infected. More drains were inserted. Fecal drainage continued to accumulate and after a number of fistulagrams and gastrograffin Xrays, another fistula was detected in the small bowel.
On May 28, 2013, I was again admitted and underwent my sixth surgery to remove the remaining infected mesh and repair the enterocutaneous fistula. A small bowel resection was necessary to control the fistula. Two days later, however, small bowel contents appeared in the incision and I was once again rushed back into surgery (my seventh) for an urgent laparotomy with lavage of the abdomen and a stoma to control the leakage.
I hit a new low when the nurse came in to fit me for the ostomy bag. I remember her drawing pen marks around the open wound. She seemed so matter of fact, like I was getting sized for a new pair of sneakers. I had never seen an ostomy device. I didn’t know how it worked. I began to cry as I imagined my future life with one. Once again, my ignorance caused me to be afraid of something I knew nothing about.
The bowel was then mobilized and an anastomosis was identified. The small bowel was leaking below the incision. Because the actual location of the leak could not be located, and because so much of the bowel was adhesed within the abdomen, drains were once again inserted to control the fistula. After 10 days on TPN (total parenteral nutrition), I was discharged on June 15, 2013.
However, fecal matter continued to be discharged into the drains left in from my previous surgery, and on September 4, a fistulogram of the small bowel confirmed the presence of a fistula communicating with the small bowel. My bowel continued to leak.
As my brother-in-law Jim in Ireland said when he heard about my troubles: “I always knew you were full of s*it!”
During this time, I had daily home care visits to attend to the infected wound and drainage. I continued to undergo several CT scans and fistulagrams.
Finally in October, when the drains were removed and with careful diet and rest, the fistula finally healed. However, it was only temporary. A much bigger operation would be needed to remove the section of the damaged bowel.
And so on June 24, 2016, I underwent my eight and final surgery which included: a laparotomy, adhesiolysis, resection of the previous anastomosis, small bowel resection, drainage of intra-abdominal abscess and a incisional hernia repair. I was discharged on July 1, 2016.
Despite a lingering abscess and collection in a small cavity in my pelvis which necessitated further fistulagrams for the next 6 months, finally in December 9, 2016, the infection finally cleared up and the last remaining drain was removed.
Sure, I was angry at different times throughout my illness.
I was angry at the world, at my body, at myself. And sure, there were some really bad days in there, when I got depressed and more than a little frustrated. I was angry of how disruptive it all was for everyone around me, none more so that the woman who, when this all started was my girlfriend but during which she became my fiancée, then my wife (we got married in Florida in the week in between surgeries 5 and 6 with me sporting 2 Jackson-Pratt drains) and then the mother of our two children (yes, in between all this, we managed to get pregnant, not once, but twice, maximizing the times in between hospital visits! Miracle babies, both of them!
More than anyone, it was my wife who got me through my ordeal. It was my wife who slept at the foot of my hospital bed watching over me through countless nights, monitoring my condition, keeping a watchful eye on the nurses, making sure I had the right medication, and then going to work, sometimes two, and sometimes three jobs, only to come back to do it all over again.
It was my wife who, in January 2013, had to endure the sudden loss of her own beloved Mother not one month after we had got engaged. But on she ploughed, sidelining her grief as she applied all her energies to nursing me through my ordeal.
And it is through this lens of love and dedication that I now see my illness. How could I feel angry when I had someone to love me that much? How could I feel angry when I was the recipient of so much love and concern from so many (too numerous to mention) friends and family? How could I feel angry when I’m still here writing this blog!
As one doctor pithily replied to me when I complained about my lot: “well, at least you didn’t die!”
My illness taught me a great deal. It taught me some hugely valuable life lessons, some of which I will share in the next and final episode.