The Mighty Logo

My Experience Adjusting to Life With an Ostomy

Nearly two years ago, when I was on vacation on a slow, end of summer road trip through the Mississippi River valley, I received a call from my gastroenterologist that changed my life. As the doctor was on the line and not his assistant, I knew the minute I picked up the phone that something was amiss: “Ms. Gott, we have to tell you the news from your recent pathology report tested positive for cancer.”

I had gone in for my once yearly colonoscopy, something I’ve had to do for the past several years due to the presence of multiple polyps in my colon. I hadn’t felt very good for months leading up to that call—gut wrenching pain and bloody pencil thin stool was the norm—and a veritable storm had hit my life both emotionally and physically. A pair of ancient balsam poplar trees—two of the three sisters, as my partner calls them—fell across my yard in two separate storms, one hitting my garage and the second glancing across my neighbor’s yard. And my father was dependent on me when he wasn’t being financially exploited by a so-called caregiver nearly four hours away.

Just as it seemed as if the storm was subsiding, then the news that I had cancer smacked me across my face. When my symptoms worsened as I turned 50 some months before, I had prepared for colon cancer and the prospect of having to have some of my colon surgically removed. But when it turned out that a several centimeter-long tumor was lodged in my rectum and I would be going through chemo, radiation and surgery instead of teaching my beloved writing and literature classes, I went numb. I had no concept of what I was in for.

My nattily dressed oncologist was a kind man who would later persuade me to keep living when I wasn’t sure I wanted to. The radiologist, a non-nonsense Army vet, was curt but did her job in a business-like manner. But the surgeon, brusque and cocksure as surgeons often are, grabbed the upper hand and pushed me to surgery before I had a chance to blink and rushed me through the process by which I would arrive at either getting an ileostomy (the infamous/dreaded bag) or a j pouch constructed (have my plumbing essentially rerouted with a pouch made from my compromised anus) with little time for questions. By the time surgery was over, I woke up high on anesthetic, minus four organs and had a bag attached to me that I’ll wear for life. After nearly a month spent in the hospital vomiting up green bile, my body went into permanent menopause and I lost a fourth of my body weight in four months due to abstaining from nearly all food. I couldn’t sleep for two whole months.

My biggest challenge occurred after I returned home. I asked the surgeon who removed the tumor about draining excess fluid from what is known as the Barbie Butt (essentially a reconstructed post-rectum posterior). Without any signal before, the surgeon cut into me without any discussion of what the side effects would be or the emotional and physical toll it would take on me. All I got was a terse, “This will take some time to heal now that you’re on chemo.” When he was done inserting his scalpel in my former rectum, I had a nine cm wound that would take six months before it was even partially closed and I could down sit squarely. The most I could do was lie in bed; even bathing was a torturous process whereby I rarely immersed my entire body in the water. I took no pleasure in eating, reading, listening to music, walking outside or really anything at all. I resented everyone who was able-bodied—until I realized they didn’t cause my disease. It was no one’s fault, really. Just the result of 25 years of inflammatory bowel disease and the cancer that few in our fastidious culture talk about—rectal cancer.

As I couldn’t cook, bandage my wound or care for myself, I admitted myself to a ramshackle nursing home in the next county, far from family, where I was the second to youngest person there. (The nursing staff loved interacting with me as I could carry on a conversation that included jokes and cracks about the atrocious food). Two months in the nursing home surrounded by Alzheimer’s patients who could barely lift their heads was challenging at best. Returning home was another situation entirely.

Unlike in England, where ostomy nurses visit new patients daily, I received twice a week visits from staff who were not educated in what to look for as far as not accepting life with an ostomy. Many people with ostomies never leave their home and some consider ending their lives, as their life is so radically altered and they get no help with that adjustment. As I live in the rural Midwest, support groups for people in my situation are few and far between (thank goodness for my online pals who have the best tips on “how to rock the bag.” )

If it hadn’t been for a loyal and dutiful partner who made the seven hour round trip trek every weekend for the entire year I was laid up, and the excellent psychiatrist who encouraged me to see beyond the boundaries of my body during a five week long inpatient stay at a downstate inpatient treatment facility, I’m not sure I’d be here today. I’m largely in the clear, but find myself wondering what the cost of living really is. I am fortunate I can work again—hungry for human contact and hoping against hope that I will be able to keep my health insurance. I get up every day in my newfound body and life, praying it won’t erupt to reveal my body’s vulnerabilities. But if it does, I will survive.

Getty image by RSW Creative

Conversations 10