Abandoned in Pain: A Family’s Fight Against UCHealth’s Neglect

https://www.coloradoswitchblade.com/p/abandoned-in-pain-a-familys-fight?triedRedirect=true

Exposing the Healthcare System’s Betrayal of Chronic Pain Patients—Share to Demand Accountability

This article is an opinion piece based on my personal experiences and interviews. The views expressed here are my own and do not necessarily represent those of any organization or publication.

I remember it was a cold and windy day as I helped my wife out of our beat-up grey Subaru. I got her walker from the trunk, carefully wrapping the blanket around her shoulders before helping her take each labored step toward the side door of our local medical clinic.

She had six broken ribs that day, a result of the life-saving CPR I had given her, along with the paramedics and the robotic Newton machine that continued compressions as they drilled an IV into her shin bones. It was the first time Shilo died in my arms.

We were lucky to get her back, but her survival was tenuous. For weeks, she hovered between life and death in a medically induced coma, her body battling cascading organ failure. The doctors told us to say goodbye. Those conversations with my daughters remain among the hardest of my life—second only to the next time Shilo died in my arms, this time for good.

Shilo had spent her life battling chronic pain caused by atypical Crohn’s disease and deep adhesion scarring throughout her abdomen. Her condition was so severe that even drinking water caused excruciating pain. For decades, doctors successfully managed her condition, giving her a semblance of normalcy that allowed us to build a life, raise our daughters, and hold onto hope.

Then everything changed. The very doctors and institutions that had cared for her abandoned her, citing fears of regulatory scrutiny and rigid opioid guidelines implemented by the CDC in 2016. When they stopped treating her pain, Shilo turned to alcohol for relief. I understood why—she was trying to numb the unrelenting agony—but I couldn’t allow it around our daughters. I found her an apartment close by, and though we were separated, we remained as close as ever.

After I was able to nurse Shilo back to health and convince her doctor to prescribe pain medication again, her recovery was remarkable. She moved back in, reconnected with our daughters in profound and meaningful ways, and grew closer to me than ever before. Those two years were truly a blessing to our family—two of the best years of my life.

The night she passed for the final time had started as a good day. We celebrated her birthday that weekend, cooked dinner together, and watched a movie. But later that evening, Shilo had her final seizure—the one she couldn’t wake up from.

That night, after the paramedics told me there was nothing more we could have done, I felt her spirit lift from her body. For the first time in decades, she was free from pain. I told her, “It’s okay. You can go. I’ll take care of the girls. You go, experience the universe without pain. I’ll see you when my own time is through.”

A Systemic Crisis

Shilo’s story is not unique. Thousands of chronic pain patients across the country face the same fate, abandoned by the healthcare system meant to protect them. This weekend, I was reminded of this cruel reality when my friend and pain management physician, Dr. Mark Ibsen, reached out with an urgent plea for help.

He told me about Monique Barela, a patient whose story mirrored my wife’s. Monique has been abandoned by her doctors despite her chronic pain being fully documented and protected under Colorado law.

“Monique doesn’t want to die,” her mother told me. “But she can’t live like this anymore.”

Monique’s desperation is not an isolated incident—it’s the result of a systemic failure to provide compassionate and competent care to chronic pain patients.

Monique Barela’s Fight for Survival

Monique’s battle with chronic pain began when she was just eight years old. A bacterial infection from a gym class injury led to years of surgeries, misdiagnoses, and escalating health complications. By her twenties, she was living with Complex Regional Pain Syndrome (CRPS), osteoporosis, and severe arthritis.

For a time, Monique managed her pain with carefully calibrated doses of oxycodone and oxycontin. With her pain under control, she was able to work two jobs and attend school. But in 2016, her providers began tapering her medication, not because her condition had improved, but in response to vague opioid-prescribing guidelines.

“They made me sign a taper form,” Monique explained. “They said if I didn’t, they wouldn’t prescribe anything at all. What choice did I have?”

Her once-stable life unraveled. Malnourished and in unbearable pain, Monique dropped to 87 pounds and was hospitalized. Even then, doctors dismissed her suffering. “They told me to try Tylenol or meditation,” she said, her voice trembling.

Abandoned by the System

Despite Colorado’s SB23-144—legislation explicitly prohibiting forced tapering and mandating individualized treatment plans for chronic pain patients—Monique’s cries for help have been ignored.

“I showed a doctor the law—SB23-144—to prove they wouldn’t get in trouble for treating me,” she recounted. “He refused to even look at it. He just walked out of the room.”

Even when Monique has found doctors still willing to help her, pharmacies have refused to fill her prescriptions, citing vague “red flag” policies. “I’ve driven hours to find a pharmacy that would give me what I need,” Monique said. “And most of the time, they still say no.”

The Insurance Ping-Pong Game

Adding insult to injury, many chronic pain patients are subjected to a cruel cycle of referrals and appointments with specialists who know they won’t provide treatment.

“Doctors know from the start that they’re not going to treat the patient’s pain,” Dr. Ibsen said. “Instead, they refer them to another specialist or clinic. It’s a cycle of false hope and wasted resources.”

Monique has lived this nightmare. “I’ve been sent to so many different clinics, and none of them ever actually treated me,” she said. “Meanwhile, my insurance gets billed for every appointment, every test, and I’m still left in pain.”

This practice raises serious legal and ethical questions. By repeatedly billing insurance for services that don’t address the patient’s needs, healthcare providers exploit the system while patients suffer.

A Call to Action

UCHealth has a choice: to honor the law and provide compassionate care or to perpetuate a system that abandons those who need it most.

To my readers: Speak out. Share Monique’s story. Demand accountability from UCHealth and other providers. Contact your legislators and insist they enforce SB23-144.

If this is an issue you or a loved one are facing, I urge you to contact Governor Jared Polis himself. He signed this law into effect, and it is failing our fellow Coloradans. Plead with him to demand accountability and ensure this legislation is upheld.

No family should endure what mine has. Shilo deserved better. Monique deserves better. Chronic pain patients deserve better.

Read the full text of SB23-144 here.

Shilo’s story, along with our family’s harrowing journey through the medical system as she faced chronic pain—her triumphs, setbacks, and ultimate sacrifice—will form the backbone of my next non-fiction book, currently titled Shilo’s Story. This memoir will explore our unconventional life together as creatives, artists, and writers while shedding light on our healthcare system’s systemic failures. It will highlight the resilience of those the system abandons and honor the enduring legacy of a woman whose courage continues to inspire. Stay connected for updates on this deeply personal and important project.

Filed under: General Problems