Beyond the operating room: a patient’s perspective

What if—before my life changed forever—someone had told me the real questions to ask that could shape my recovery? What will my days really look like after surgery? What supports should I have in place—physically and emotionally—both before surgery and during recovery?

"Lying on my bathroom floor in the middle of the day, in tears from physical pain and emotional exhaustion, I feared my kids would come home and see me. In that moment, I realized what had never been made clear: even with excellent surgical care, I was unprepared for the lived experience of having a Lower Anterior Resection. As both a survivor and a counselor who now supports others navigating cancer survivorship, I see it over and over. This isn’t a gap in skill; it’s a gap in communication."

At 38, I was diagnosed with thyroid cancer, which resulted in a thyroidectomy. While this was considered a relatively "easy" surgery, the road afterward was far from simple. Trying to find the right balance of hormones created years of emotional instability—a possibility I was never told about.

Then at 47, I was diagnosed with stage III rectal cancer, which involved neoadjuvant chemoradiotherapy followed by a lower anterior resection (LAR) and postoperative chemotherapy. To my highly skilled surgical team, the outcome was a success: the tumor was gone, the anastomosis intact, with no immediate complications. For me, recovery was far more complex. After my initial LAR surgery, I developed an anastomotic stricture requiring dilation and another surgery. Eventually, I had an ileostomy reversal and later a suburethral sling procedure.

Colorectal surgeons understandably focus on tumour removal and anastomosis integrity. I hold immense gratitude for the surgeons whose expertise saved my life. Their precision and skill made my survival possible. However, communication about what patients will truly face postoperatively is commonly superficial. While most patients are aware that there’s a 50% “success rate” for bowel function recovery, there’s no real communication or plan for the other 50%. Realizing, no one can estimate who it will or won’t work for, communicating awareness of what could happen and the options available to enhance quality of life, should be detailed.

Pre-operative phrases like "your bowel habits may change" do not prepare patients for the reality of Lower Anterior Resection Syndrome (LARS). For many of us, LARS is not a minor inconvenience but a hidden disability. It involves unpredictable frequency, urgency and clustering of bowel movements, incontinence, pain, disrupted sleep, difficulty leaving the house, social withdrawal, isolation and sexual dysfunction. It erodes social connections and relationships, leading to profound isolation, anxiety, depression, and often suicidal ideation. This is far from the "slight change" commonly described.

Why? Imagine having to go to the bathroom more than 30 times a day. This relentless frequency drastically impairs your quality of life. You feel alone, embarrassed, confused, and often ashamed—never sure if what you’re experiencing is normal or even treatable. Most are simply advised to take Imodium and psyllium for management, but beyond that, meaningful support is rare.

Recovery timelines are also vastly underestimated. Patients are often told "six to eight weeks," yet meaningful functional recovery can take a minimum of six months to a year, or longer.

My own experience highlighted multiple omissions in preoperative discussions.

Radiation effects and ureteric manipulation caused persistent urinary incontinence, which I was never warned about. My GP thought it was something I simply had to live with. Only after a referral to a gynecologist did I receive sling surgery, dramatically improving my quality of life.

Another life-altering but rarely discussed outcome is sexual dysfunction. Nerve damage from surgery, radiation effects, and loss of bowel function can cause reduced libido, loss of sensation, or pain, yet sexual health is rarely addressed as openly as other postoperative issues.

Nutrition advice such as "eat what you like" often does not match the lived reality of patients who no longer process food, fluids, or gas the same way. Specialized dietary guidance is transformative but is rarely standard practice.

Knowing about advanced tools and when to access them was instrumental in regaining my life. Yet, few patients are informed early about evidence-based management options like Transanal Irrigation (TAI), Sacral Nerve Stimulation (SNS), and medications including GLP-1-based approaches. Many only learn about these interventions through peer groups or online communities—long after unnecessary suffering.

In both my surgical cases, communication and clear expectations for recovery would have made these paths easier. And, recognizing that LARS symptoms are part of a known postoperative syndrome—not a personal failing—was a turning point for me. That clarity is what many patients still lack.

I was fortunate that my colorectal surgeon had a nurse navigator on his team who would follow up, track my symptoms, and coordinate bloodwork and CT appointments. Even so, this felt like the beginning of what could be a far more cohesive model of survivorship care.

Most patients navigate between GPs, surgeons, endocrinologists, dietitians, urologists, and pelvic-floor specialists with limited coordination. Even when symptoms are accurately described, the severity of LARS is often underestimated outside colorectal teams.

Rectal cancer surgery saves lives, and patients are profoundly grateful for the expertise that makes survival possible. Survival should also include preparation for the life that follows. When communication expands beyond tumor removal to encompass function, emotion, and quality of life, recovery becomes more than survival—it becomes living with knowledge, dignity, and hope.

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Constance Pickett is a registered counsellor and cancer coach in British Columbia and peer support volunteer with Colorectal Cancer Canada. She’s dedicated to empowering patients and improving postoperative survivorship experiences. This article not only encompasses her experience but the echoed experiences of fellow LARS patients.