BACK TO LIFE FROM THE BRINK

A Podcast and an Essay 

By Chris Matthew Sciabarra

This essay also appears on Medium and Substack (28 April 2026).
It is a sequel to "'Born Again': Fifty Years Ago Today" (24 April 2024).
And listen to the Out of Sync Podcast interview with Chris Matthew Sciabarra (28 April 2026).

Preface

My life with disability has been the subject of several interviews through the years, including one that appeared in Folks magazine in January 2018, and an interview conducted in February 2023 by Léa Hirschfeld that is finally being released today as part of an Out of Sync Podcast series, which explores “life through disability, one story at a time.” 

Listening back to the interview, recorded less than three months after my sister's death, I was struck not by how much had changed, but by how much had endured. The interview is broader in its subject matter than I’d remembered. It deals not only with my medical challenges, but also with my work on Ayn Rand, libertarianism, and dialectics. It explores the dangers of ideological rigidity in the face of real-world constraints, the need to live in a known reality, rather than an unknown ideal.

Léa invited me to record a brief update, which is included in the podcast, since so much has happened over the last three years.

Today’s companion essay, “Back to Life from the Brink”, is a sequel to a 2024 essay that marked the fiftieth anniversary of the surgery that saved my life from a rare congenital condition known as Superior Mesenteric Artery Syndrome (SMAS). That essay—“‘Born Again’: Fifty Years Ago Today”—can be found on both Medium and my home page.

“Back to Life from the Brink” discusses the catastrophic events of October 2025, which led to two emergency surgeries and a new lease on life with a colostomy.

My writing has always been my passion. On a personal level, it has also been therapeutic and cathartic. Beyond this, I hope today's content, shared across multiple platforms, brings attention to topics often stigmatized when discussed publicly.

Léa has posted links to the Out of Sync Podcast interview with me here: “Thinking Freely, Living Carefully: Life with SMAS | Chris.” (The direct YouTube link is here.)

Léa introduced the podcast with the following thoughts:

In this 13th episode, we meet Chris Matthew Sciabarra—a writer whose sense of freedom began not in the body, but in the mind. Inspired early on by thinkers like Ayn Rand and later shaped by the dialectical ideas of Bertell Ollman, Chris built an inner world grounded in reason, inquiry, and intellectual independence. But while his mind roamed freely, his body told a different story. Living with the rare condition Superior Mesenteric Artery Syndrome, Chris faced lifelong physical limitations that made everyday life a constant negotiation.

What emerges is a powerful contrast—and ultimately, a reconciliation—between independence as an idea and interdependence as a reality.

Raised in a close-knit Brooklyn family, Chris’s story reveals how freedom is often sustained not alone, but through deep bonds of care and mutual support.

This is a conversation about philosophy, illness, and the quiet strength of family—the kind that makes survival, and even flourishing, possible.

Back to Life from the Brink

Another trip to the Emergency Room, another day. I’d made these trips before—in fact, five previous trips just like this. Pain on the left side of my lower abdomen. Sometimes, pain below my belly button. Pain that felt even worse to the touch. After my first bout in September 2016, I was able to self-diagnose this condition without fail with every recurrence. I knew it was diverticulitis, an inflammation and infection of small pouches in the lining of the large intestine.  

The protocol was the same. They’d run blood tests and a CT scan. And I’d wait for the doctors to confirm the diagnosis, prescribe some antibiotics, and send me back on my way home.

This time, however, when the doctor entered the room, her face was grim. “So, yeah, you were right. You have diverticulitis. But there’s been a complication.”

She paused for what seemed like forever, but it was only a second or two.

“Your sigmoid colon has been perforated and there is a free air leak.”

To be honest, I had a proverbial gut instinct that this time, something wasn’t quite right. The pain that sent me to the ER on this day was truly excruciating.

But when I heard that word “perforated”, I was shaken. I knew that problems of this nature typically require surgery, something that in my case could be catastrophic.

I was admitted to the hospital and was treated with IV antibiotics. No fluids or food were on the menu; the goal was to allow the colon to rest. When it was apparent that surgery was a high priority, I asked to be transferred to the hospital that was home to my colorectal surgeon. On October 4, 2025, two days after my first symptoms appeared, the transfer went off without a hitch.

My sister Elizabeth (left) and Me

My sister and I lived together our whole lives; our household included our mother until she died of lung cancer in April 1995. But my sister was by my side for every bout of every medical episode I’d ever faced, given that I was living with complications from a congenital gastrointestinal condition.

By November 2020, however, Elizabeth became very ill. The tables were turned as I became her primary caregiver. But even caregivers can get sick.

On May 19, 2022, I was back in the ER dealing with yet another bout of diverticulitis. I remember how upset my sister was because she was incapable of accompanying me to the hospital. Even as our home health aide was assuring her that I’d be okay, telling her to rest, I responded with a laugh: “Take it from me: She will never rest or go to sleep until I am back home.” Return I did, armed with a new series of antibiotics. Relieved, my sister was finally able to fall asleep.

After two years of deteriorating health and heartbreak, my sister died at home on November 26, 2022. Processing my grief from such a deep personal loss, I had to muster the strength to downsize my apartment for a move in October 2024; it kept me in Brooklyn but took me away from the neighborhood I’d lived in my entire life. And I had to face my own ongoing health struggles without her. It’s not that I was lacking in support. I have drawn tremendous strength from my brother Carl and sister-in-law Joanne, my relatives and friends, all of whom have helped me in countless ways over many years. But my sister was my rock. Her legacy of love has been so profound that even in her absence, she is forever present in my heart.

On July 22, 2025, I was back in the hospital facing my fifth bout of diverticulitis. This time, it took over a month to recover from the soreness. One of my surgeons remarked that these repeated episodes of diverticulitis could cause scarring and low-grade inflammations that never fully resolve. I’ll deal with the remnants of discomfort, I told myself, as long as I never have to face the possibility of having any sections of my sigmoid colon removed (a colectomy) or of dealing with the horrors of a colostomy.

But these recurrences of diverticulitis made an already complex medical condition even more problematic.

A Complex Medical History

Back on April 24, 2024, I published an essay on the fiftieth anniversary of a gastrointestinal surgery that saved my life from the effects of a congenital condition known as Superior Mesenteric Artery Syndrome (SMAS).

My medical journey had been a challenging one. Throughout my youth, I suffered all the symptoms of an intestinal obstruction, but it wasn’t definitively diagnosed until 1973. At the age of 13, my weight had dropped to 69 pounds. I was literally fighting for my life.

Superior Mesenteric Artery Syndrome. Courtesy Guava Health.

That correction, known as a duodenojejunostomy, connected the jejunum of the small intestine to the second portion of the duodenum, bypassing the obstructed third (transverse) portion.

Dudodenojejunostomy: A bypass in the C-shaped duodenum. Arrow A shows the duodenal-jejunal bypass of an SMA obstruction; Arrow B shows the bypassed ‘blind’ loop, in which food drainage eventually makes its way through the jejunum. Adapted from Practical Gastro, Series #3.

As I wrote in that 2024 essay:

For several years after the operation, I gained weight and my health improved dramatically. By the mid-1980s, however, years after that trailblazing surgery, I began to develop complications as my body’s growth led to a narrowing of the intestinal bypass (aka an anastomosis). … Given the shortened GI route (Arrow A above), and the possibility of some food making its way through the bypassed loop (Arrow B above), [I experience] … a ‘dumping’ problem, which sometimes keeps me wedded to a bathroom. I’ve had over 60 procedures since the mid-1980s to diagnose and treat various side effects of this condition, including intestinal strain, severe bleeding and anemia, and chronic dehydration. The intestinal strain required surgical repair of several hernias. The severe bleeding required regular blood transfusions and IV iron supplementations until 25 ligation procedures and infrared coagulations controlled the flow. The dehydration led to chronic formation of kidney stones, for which I’ve undergone eight lithotripsies.

Diverticulosis and Diverticulitis

Alongside those GI complications has been the presence of diverticula—multiple pouches or pockets present in the sigmoid colon. These first appeared in 2010, when I was 50 years old. By 2014, I was diagnosed with diverticulosis, as even more of these pockets manifested, due to weaknesses in the muscle layers of the colon wall. Though the development of diverticula is often age-related, studies suggest that frequent bowel movements, as I’ve had from dumping syndrome, can increase the risk of developing diverticulitis—an inflammation of the diverticula pouches.

Diverticular disease: Diverticulosis / Diverticulitis. Courtesy Informed Healing.

And so, in early October 2025, when I experienced my sixth bout of diverticulitis, I suffered a perforation in the sigmoid colon that led to an air leak (pneumoperitoneum). Having been transferred to the hospital with which my colorectal surgeon was associated, I was relieved to see him. He suggested that with rest, the rupture might heal and that we’d have more options moving forward.

By October 7, however, it was apparent that there was now air and fluid leaking into the abdominal cavity, and I was at risk for sepsis. This was an emergency that made immediate surgery unavoidable. My surgeon wasn't on call. So, his equally qualified associate explained that he had to perform a resection of my sigmoid colon and create a colostomy.

The gray area is the diseased sigmoid colon in need of resection. Courtesy EvanWorse, CC BY-SA 4.0.

I was devastated. For years, virtually every GI specialist had warned me that with my duodenojejunal bypass, and the presence of scar tissue and adhesions, any surgery involving a colostomy would be catastrophic. But given a choice between a colostomy and dying, the colostomy didn’t appear to be all that bad an option, especially when I was assured that it could be reversed at a future date. Adhesions and complications be damned—I could not survive without this surgery.

The Hartmann’s Procedure

I underwent an emergency exploratory laparotomy, requiring a large incision that virtually duplicated my 1974 scar, though this one went down even further toward my groin. Approximately 4 inches of my diseased abscessed sigmoid colon was removed in what is known as a Hartmann’s Procedure, named for the French surgeon who devised the operation. In this procedure, the surgeon creates a stoma by bringing the healthy portion of the colon through an abdominal incision; a colostomy bag is then attached to the opening to collect waste. A rectal stump is sealed off and left inside the pelvis, allowing for the possibility of reversal at a future date, in which the stoma is closed, and the colon is reconnected to the rectum, restoring normal gastrointestinal function.

The Hartmann’s Procedure: A is the portion of the sigmoid colon that is removed; B is the rectal stump that is closed; C is the area where a colostomy is performed, in which an incision is made in the abdomen and the remaining functioning portion of the colon is brought through the abdominal wall, allowing for drainage into a colostomy bag. Courtesy Anpol42, CC BY-SA 4.0.

The creation of a stoma and the placement of a colostomy bag. Courtesy UNC Health.

When I emerged from the surgery and looked down at my belly, I could see the wound dressings. And there was the colostomy bag, jutting out from my abdomen. My eyes watered. I took a deep breath and exhaled. I’d gotten through the surgery—and it wasn’t a catastrophe.

Yet.

A Catastrophic Development

Three days later, I was encouraged to begin sipping fluids and consuming soft foods. Within a half hour or so, I felt pain in my abdomen. The pain became increasingly unbearable. Something had gone terribly wrong. I was rushed into another CT scan.

The news was far worse than I had imagined. My jejunum, which was connected to the second portion of my duodenum in that 1974 surgery, was now leaking into my abdominal cavity. This was a delayed breakdown of tissue that was otherwise intact after my October 7 operation. The integrity of my duodenojejunostomy, the bypass that saved my life, had been severely compromised. It was going to require another emergency surgery.

I knew I was facing a nightmarish situation. I had to make my peace with the very real possibility that I might die.

As I was wheeled into the Operating Room, I looked up at my surgeon and told him: “I’m petrified.” With his unique talent for raw honesty, he replied: “I’m petrified too.” He asked me to tell him everything I knew about my bypass; after all, the surgeon who performed that original operation was long gone, and any information I could provide would be helpful. I gave him a detailed description of the surgery from a half-century ago. And I reached out and held his hands and asked him to do everything he could to save my life. He assured me that he would.

My surgeon reopened the three-day old incision and found exactly what I'd told him. But the abdominal cavity needed to be drained. My intestines were ‘sticking together’ due to severe adhesions. There was a bowel perforation or ‘full thickness delayed enterotomy’, which had penetrated all the layers of my jejunum. In simple terms, I had a hole in the very portion of my small intestine that had been rerouted to my duodenum during my 1974 GI bypass. And all the tissue surrounding that hole was thin and weakened. He had to fully repair the ruptured jejunum in two layers.

The surgery that started on October 10 was completed in the wee hours of October 11. When I awakened in the ICU, I truly couldn’t believe I was alive.

My recovery was grueling. I had a drainage tube coming out of my abdomen, a nasogastric tube inserted under sedation, taken out prematurely and then reinserted without sedation. I consumed nothing by mouth for more than two weeks and was on IV antibiotics for five weeks. Trying to move with core muscles that had been incised twice within three days was brutal—but move I did because I had to. All this was made bearable by a top-notch staff of doctors, nurses, therapists, and other healthcare workers. I was hospitalized for 31 days and lost 30 pounds. I spent another 17 days in a subacute rehab, trying to build back my strength, endurance, and balance. Abdominal muscles and tissue can take up to a year or two to fully heal from surgeries of this nature. Intense physical and occupational therapy continued for months after my return home on November 20, 2025. I have permanent restrictions on how much I can lift and even the kinds of physical activities in which I can engage.

But I was home to celebrate Thanksgiving with my family, and to say I had much to be thankful for would be an understatement.

Life with a Colostomy

Surviving the surgeries was only the beginning. Learning to live with a colostomy posed an entirely different challenge. Ostomates—individuals who have undergone various operations that create artificial passages for bodily elimination—face enormous hurdles as they adapt to the realities of their new lives. But make no mistake about it: A full and active life is possible for those who live with an ostomy.

No two ostomates are alike, however. Here, I can only provide an individualized snapshot of my experiences living with a colostomy.

It took a while to get used to the fact that my dumping syndrome would no longer be processed through the regular pathways. With a colostomy, that condition is filtered through a new technology that I must care for, even as I continue to learn about its literal ins-and-outs. That learning process never ceases.

In the hospital, I was trained to apply and use a one-piece pouching system. Some of these pouches are drainable; others are closed. Given the frequency of my GI activity, I change my colostomy bag on average once or twice daily. There have been some occasions where massive intestinal dumping has been accompanied by severe cramps, and the need to change my bag up to four times in a single day.

The first task I learned while in the hospital fell into the category of what I characterized as “arts and crafts”. I learned to cut a hole in each of the colostomy bags to fit the specific measurements of my stoma.

These one-piece Cololplast SenSura Mio bags are terrific; they come in both drainable (left) and closed (right) varieties.

Changing the bag has its challenges. After all, the stoma has no sphincter muscles like the rectum. I’ve got no control over its peristalsis—that is, its wave-like movements that cause it to expand and contract, to retain or move output. Like other ostomates, I have developed a personal relationship with my stoma, which is always bright red, moist, and shiny, as if it were perpetually happy. I have several pet names for my stoma: “Stomes”, “Stomi”, sometimes “My Little Stomi”—especially when I’m hoping he will behave during a bag change. But Stomi clearly has a mind of his own. As odd as it sounds, I’ve bonded with my stoma, whose presence in my life is the gift of life itself. Without Stomi, my life would have surely ended in early October 2025.

That said, Stomi can be a noisy child. We all experience ‘stomach grumbling,’ but with a colostomy, that grumbling can get a bit loud. I often warn family and friends to beware of the orchestral sounds coming from my abdomen. I assure them that no alien will burst forth from my torso.

Given how much I care for my stoma, there have been times that I’ve freaked out when I saw a little bleeding where the skin meets the stoma, or even on the stoma itself. The tissue of the stoma is very delicate, made up of a dense and extensive network of blood vessels. So, the slightest trauma in changing the bag can cause bleeding. Fortunately, I approach every bag change and cleaning with the delicacy of a surgeon. My use of various powders and skin barrier wipes help me to create a ‘crusting’ layer that protects the skin and enables the bag to adhere safely and securely.

A New Complication: Parastomal Hernia

Unfortunately, in March 2026, a follow-up postoperative CT scan revealed a parastomal hernia. Not knowing its symptoms, I was clueless to even report to my doctor that I had a breast-like bulge around my stoma. 

Parastomal Hernia. Courtesy British Journal of Nursing.

In my case, nondilated small bowel loops slipped through the incision created to form the stoma. The loops sit between the muscle layers of the abdomen and the skin, creating a visible bulge. Most people with a parastomal hernia simply live with it—unless it causes painful obstructions or blockages, in which case surgical repair becomes necessary. These hernias are an almost unavoidable complication for ostomates, and the condition is typically managed by wearing an ostomy belt. I hope to be fitted for a custom belt next week; for now, especially when I go on long walks, I wear a very uncomfortable generic belt that I’ve dubbed ‘the straitjacket.’

To Reverse or Not to Reverse

The question of reversal surgery lingers. I have framed that question by asking: Is reversal surgery medically necessary? This allows me to consider not only if I can have the colostomy reversed, but whether I should. It provides a foundation to evaluate the pros and cons—the benefits and risks—of reversing the surgery or keeping the colostomy.

Reversal surgery carries its own unique set of complications. The presence of a parastomal hernia heightens the surgical complexity and the risk of postoperative complications during reversal. There can also be leaks due to a poorly functioning reconnection (anastomosis) of the rectal stump and sigmoid colon, fecal incontinence, surgical site infections, and new bowel obstructions. Increased urgency or loss of bowel control is particularly concerning for someone with dumping syndrome.

This is not to say that keeping the colostomy is without risk. I already have a parastomal hernia, and I could develop future blockages, obstructions, or a stoma prolapse or retraction. There are also lifestyle issues. I have to monitor my diet (which I’ve always done) and 'chew, chew, chew' my food to minimize blockages. There are lifting restrictions and I have to ensure the adhesiveness of the colostomy bag. (I sometimes stabilize the bag with silicone tape; while hydrocolloid strips are more secure, they tend to cause skin abrasions upon removal.)

How to comfortably wear a bag and an ostomy belt in the heat of summer is something I’m not looking forward to. I’m not worried about swimming with a colostomy bag, since I never learned to swim, but even showering requires extra preparation to protect the bag and the stoma.

As for sex—there have been a few subtle changes due to the impact of two successive surgeries on my pelvic floor muscles. But hey, everything is, uh, coming out just fine.

In many respects, my quality of life has improved. I’ve gained back 22 of the 30 pounds I lost, and my weight has been stable. I am no longer experiencing the painful trauma of a dozen or more daily trips to the restroom, which contributed to hemorrhoidal bleeding and anal fissures. Indeed, between January and September 2025, I underwent 17 procedures—including eight rubber-band ligations and nine sclerotherapy treatments—to stop severe hemorrhoidal bleeding, an ongoing side effect of my dumping syndrome.

I am no longer bleeding. I am no longer feeling the kind of urgency that prevents me from leaving my apartment. I can go to lunch or dinner with a friend and not worry about having an accident on the way home.

Of course, given the nature of my condition, I’m not about to travel vast distances for a meal. I may no longer be susceptible to accidents from voluminous dumping, but a full colostomy bag is its own kind of accident waiting to happen. Spontaneity often takes a back seat to the ongoing need to map out strategies for daily activities.

And this brings me to the bottom line of reversal surgery: Though I will see my surgeon in the fall for tests to evaluate the integrity of my intestinal plumbing, it is clear that reversal does nothing to change my underlying medical issues. Even if reversal came with the unlikely possibility of no long-term complications whatsoever, the best-case scenario is that I would still have to endure a debilitating period of post-surgical recovery, only to return to a life of urgency and bleeding.

I would never have chosen to have a colostomy. It was a medical necessity. But this is now my reality. I deal with the conditions that exist, not with the conditions I wish existed. Given these conditions—as well as the continued presence of scar tissue and adhesions—and the serious risks of reversal, I see no reason to opt for it unless it becomes medically necessary.

An Ongoing Project

Life with or without a colostomy requires honesty about our potential and our limitations. Having spoken to other ostomates, I believe it is vital to let people in. It is important to be honest about our needs and feelings and to nourish our relationships—not just with those who already care deeply about us, but with those with whom we are building new, lasting friendships. Social networking sites, such as MeetAnOstoMate, encourage these connections for mutual support and solidarity.

We are, by nature, social beings. Life with a colostomy makes us no less social, though it can lead some to live reclusively due to an altered body image. Coping with these changes requires an even greater commitment to expanding our social spheres—especially those safe spaces that nurture our ability not only to live with a colostomy, but to flourish.

Just as I was “born again” in April 1974, with that life-saving intestinal bypass, so too, in October 2025, two emergency surgeries provided me with the priceless gift of an extended life.

Survival has not been the product of a single rebirth; it is an ongoing negotiation with no predetermined outcomes. Living a flourishing life requires active engagement with every situation—personal, professional, and social.

As human beings, we are an organic integration of mind and body; practicing critical mindfulness and expressing deep emotions are two sides of the same coin.

There are days when I feel emotionally raw—when I might choke up or cry facing the difficulty of tasks I once took for granted: avoiding the strain of picking up an awkward box, opening a sealed jar or a jammed window, or realizing I’ve walked too far, and my body is simply too fatigued. I am still feeling the impact of those surgeries; I am often tired.

I also recognize that no single day can be removed from the context of all the days that came before it—the cumulative effects of many losses, including the recent loss of a dear sister, a monumental move from a neighborhood in which I lived my entire life, and the trauma of life-altering operations and the continuing trials and tribulations of recovery.

But that context is also one of immeasurable triumphs. I count my blessings that I am here to cry when I’m down, to shed tears of joy with every new achievement—to laugh, read, write, complain, and protest; to enjoy music and film; to love. Ultimately, it is love—of life, of self, of others, including the others of memory—that has carried me through.

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