Thank You For Your Support

Written by PouchWear .com

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Posted on November 03 2024

Hello and welcome. A huge thank you to all our loyal customers and friends—your support is everything, with 40% of sales from repeat buyers. Today, I want to explain my recent absence, some of the turbulent news surrounding us, and a tragic, unexpected chapter in my life. Thank you for standing by us during this challenging time.

I underwent an ostomy in 2004 and faced various struggles before finding solid ground again. In 2008, I moved to Yuma, Arizona, after meeting my partner online. We settled into an apartment near my new gastro specialist. I was in remission, working out, and life felt good. But between 2008 and 2017, everything changed as my health began to decline. Amid these challenges, in 2011, we launched Ostomybagholder.com, creating custom-made support for ostomy patients. This venture became a new purpose as I navigated these health struggles.

I was one of the early trial patients for Remicade, starting in 1998. Unfortunately, my new gastroenterologist did not fully understand the intricacies of Remicade, which required not only the full 550mg dosage but also the protective agent mercaptopurine. I received only 100mg, unprotected, which began a steady decline in my health.

Over the years, my health issues compounded. I fractured my foot while recording a video to demonstrate our new swimwear’s streamlined design, both above and below water, showcasing how it performed during a dive. Shortly after, I began developing pyoderma gangrenosum, an extremely painful skin condition, which persists to this day. Regular bowel blockages became a part of my life. In 2013, while on an exercise bike, I felt an excruciating pain near my rectum—later diagnosed as a perianal fistula. This was compounded by a failed stoma revision surgery in 2014 that caused further complications.

Prolapsed stoma with fistulas and tearing.
My prolapsed "faucet" stoma with fistulas and tearing around the base.
 

These issues accelerated rapidly, forcing me to adjust my lifestyle to accommodate frequent hospital visits due to the fear of blockage. Unfortunately, my local hospital, the same one that administered the incorrect Remicade dosage 2008-2017, failed to understand my condition. I was told I was the “wrong color.” I was unfairly labeled a drug seeker, an assumption that profoundly impacted my treatment. This mislabeling was especially damaging because, in the following year, I experienced a life-threatening crisis that nearly claimed my life.

One day, I faced a severe blockage and, after trying everything—warm baths, showers, water, and rest—I finally called an ambulance, fearing I’d waited too long. By then, I was fading in and out. In the ambulance, the paramedic in the back dismissed my condition and criticized my decision to call for help. When we arrived at the hospital, he exchanged a knowing smile with the intake nurse before leaving me in a hallway after admitting me, assuming I was there seeking drugs. After nearly two hours, I called my partner, who came immediately. At that time, I still believed doctors had my best interests at heart, but that faith has since been shattered. I share this story to warn others of the dangers of medical negligence and the fight against unjust treatment.

When my partner arrived, things quickly worsened. I began vomiting and passing out. Finally, they inserted a pump into my stomach, and I spent the night in critical care, becoming septic among other complications. Following that crisis, the hospital staff treated me more seriously, and I hoped that was the end of my ordeal. But it wasn’t.

Whenever I sought medical care locally, I noticed a distinct shift in treatment over time. I experienced poor, often dismissive care—even being kicked out of a dentist’s office simply for changing my mind about a procedure. There was an underlying hostility in many of my encounters, sometimes manifesting in subtle but pointed ways, including mockery of my symptoms and, at times, biases both racial and political.

In 2010, my gastroenterologist even wrote a letter to my state insurance, leading to my removal from coverage. Only after my symptoms worsened did they issue a new letter to reinstate me. I’ve been officially disabled since 2002, yet a lack of understanding and persistent negligence from the local hospital and gastroenterology office compounded my struggles. Over the years, rather than addressing these errors, they instead subjected me to harassment and consistently treated me poorly.

Over the years, I faced subtle harassment from doctors, nurses, and the hospital system itself. Living 36 of my 44 years with Crohn’s Disease, which I can only describe as a life of pain and suffering—the one constant I’ve known. I’m grateful for my resilience, as it’s the only thing that helped me survive the experiences that followed.

Painful pyoderma on my ankles. Old scars and new outbreak coming in.
Painful pyoderma on my ankles. Old scars and new outbreak coming in.

As my health issues multiplied, I faced a new concern: possible lupus. A visit to a rheumatologist confirmed the oversight—Remicade had been administered at the wrong dosage, and I hadn’t received the necessary 6-MP to support it. I decided never to return to that gastroenterologist. Instead, I began traveling monthly to Phoenix for both a new doctor and proper Remicade treatment, hoping to reclaim my health.

You might assume that identifying these issues would lead to improvement, but the reality is heartbreaking. My new gastroenterologist explained that after receiving an incorrect dosage for nine years, it would take significant time to rebuild the medication levels in my body, with remission as the distant goal. If this shocks you, keep reading—there’s more to the story.

I just wanted them to understand that I wasn’t lying—that everything I was going through was real and that I genuinely needed help. Instead of taking responsibility, my local gastro began to distance themselves from their mistake by spreading slander and libel against my name.

In 2017, I met with a new surgeon for a stoma revision. Expecting to stay in the hospital for a week, I arrived prepared for surgery. While waiting in the lobby, I came across a CNN article about a Northern representative’s controversial statement on impeachment. I’d been primarily focused on my health and business, so it was a rare moment of reflection. At the same time, I’d been watching The Larry Sanders Show in memory of my grandmother, who had recently passed. One line from the show, where Paul Mooney remarks that "liberals are the worst thing for Black people," stuck with me and I was telling my partner while waiting to be wheeled back.

The Larry Sanders Show" Beverly and the Prop Job (TV Episode 1995) - Photos  - IMDb
The Larry Sanders Show" Beverly and the Prop Job (TV Episode 1995) - IMDb

That afternoon, instead of beginning what was supposed to be a week-long stay, I was unexpectedly discharged. Feeling weak and disoriented, I spent the night at a local hotel before making my way back to Yuma. Over the next couple of weeks, I experienced excruciating pain, and it was eventually discovered that I had a hernia and prolapsed stoma. Despite my attempts to follow up, the surgeon dismissed my concerns. A WOCN, however, quickly diagnosed the prolapse and peristomal hernia within minutes.

At my next Remicade treatment, a head nurse expressed political disdain as Trump appeared on TV, saying, “I hate that man.” This nurse later spilled alcohol on my smartwatch, pushed an air bubble via syringe into my body, and injured my nerve while administering Remicade. Each incident was reported, and I had to go through physical rehab for my elbow as a result.

In 2017, we began to suspect that what I was experiencing went beyond mere negligence. By 2021, the harassment had turned racial. No matter how I acted—whether I smiled or came in with a positive attitude—everything seemed wrong in their eyes. The discrimination felt all too real. During this time, a different doctor within the practice performed a colonoscopy. Despite my ileostomy and the fact that the colon was largely removed, the doctor unnecessarily accessed the rectal area, causing punctures and severe, pressured pain.

In 2022, after finding a new surgeon and pleading my case, I finally went back in to address the same issues that had first arisen nearly a decade earlier. The initial exploratory surgery, intended to repair the prolapse and hernia after removing pyoderma scarring, was unsuccessful. During the six hours, they halted the procedure midway due to concerns over my vitals.

After everything I’d been through, I became more vocal about my treatment, hoping to finally be heard. Unfortunately, because of past labels, the abuse from some hospital staff continued. At one point, my IV line had blown without anyone realizing, meaning I wasn't receiving any pain medication. Drifting in and out of consciousness, I repeatedly called for a nurse, who eventually arrived an hour later, complaining that she was supposed to be off that day.

Trying to get out of bed to check because this had gone on for some time with no answer, I accidentally knocked a paper cup onto the floor from the tray located next to my hospital bed. Shockingly, the nurse reacted aggressively, accusing me of “throwing things” and calling her “team leader.” I immediately called my partner, who, at her mother’s suggestion, began recording the incident.

That day was only just beginning. While in recovery my IV line blew, I became severely dehydrated, and it took an agonizing 17 attempts to insert a new line in my arm. I pleaded to be transferred to another hospital, but they refused to let me leave. My partner confronted the floor doctor, pointing out that a recording revealed him giving conflicting statements about my care. Although we reported everything, these actions were later used against me instead of bringing about the help I needed. I asked to file an official report to document the ongoing mistreatment, describing how unprofessional the situation had become. But ultimately, I decided I just wanted to go home. Just before leaving, severe pain flared up again. They ran an X-ray, found nothing, and sent me on my way. The cycle of neglect and frustration continued, leaving me with little hope for fair treatment.

Within two days, I was back at the local hospital with a blockage. I was told I’d have to return to the same hospital and was kept for a two-week observation. During that time, they pumped my stomach, leaving me in discomfort for nearly the entire stay.

Two weeks with a tube up my nose to pump my stomach after abdomenal surgery & blockage. (2022)
Two weeks with a tube up my nose to pump my stomach after abdomenal surgery & blockage. (2022)

Toward the end of the two weeks, I formally reported a nurse for mistreatment, recording my conversation with the administrator to document the complaint. In response, the administrator retaliated, calling my hospital room to threaten security intervention, claiming I was “recording doctors.” In reality, the only recording I had made was of our conversation regarding my complaint. The confusion likely stemmed from my partner having recorded a previous incident. Still I give them the benefit of doubt.

In 2023, still facing unresolved health issues, I went to a surgeon in Phoenix. After two consultations, she recommended exploratory surgery. Unfortunately, this took place at the same hospital I had issues with in 2022. When I woke up, the nurse’s first questions were, "Where is your phone? Do you have your phone on you? Are you recording?"—questions I was barely coherent enough to process as I was just coming out of anesthesia.

At my follow-up visit, the doctor bluntly told me to “clean my ass.” It was a shocking level of disrespect. I will be sharing the names of all the hospitals, doctors, and nurses involved. All I ever wanted was to be left alone and treated fairly, yet it felt like they kept coming at me, like relentless bullies. Reporting these incidents to the hospital itself led nowhere, as my complaints were essentially dismissed.

Why am I sharing this with you now? Because after years of struggling, I only discovered in early October 2024 that I have severe pancreatitis. This condition had gone undiagnosed for so long because it was frequently mistaken for symptoms of Crohn’s Disease. Since 2016, I’ve endured worsening health, unaware of this underlying issue, and I want others to know the importance of thorough, accurate diagnosis.

My original surgeon in Atlanta unknowingly left me with a sebaceous cyst. At the time, I was in college, still dealing with persistent perianal fistula pain and leakage. Unfortunately, this led to me being labeled as someone seeking surgeries or pain medications, rather than as a patient with genuine, ongoing issues. I can’t even be sure how long this misjudgment has affected my care.
Medical negligence is the third leading cause of death in America, and some of the biggest events in my life stem directly from it. That’s why I’m working to launch an initiative called Doctors, Not Detectives. We need doctors who genuinely assess what’s happening with their patients, rather than making assumptions or jumping to conclusions. My experiences have been well-documented, and time and again, I was bullied or dismissed—only for them to realize later they had been wrong.

Is that all? Not even close. Over the years, we’ve faced ongoing slander and harassment online. Longtime business partners have abruptly cut ties for unclear reasons. Google has interfered by favoring third-party reviews over hundreds of verified ones, impacting our reputation. We've even had ads cut off simply because they highlighted "Made in America."

Officially, we’ve been harassed by competitors—with video evidence documenting it. On top of that, due to health challenges, we sometimes missed packages or experienced delivery delays. My partner and I are the only ones running this company, and I had to step back in 2018 because of my health, only recently returning briefly. There were many times we had to rush to the hospital, spending days there, while orders sat unshipped, with no one available to package or mail them.

On top of everything else, making everything from scratch meant that, at crucial times, we missed ordering raw materials, leaving us in a tough spot. However, this affected only a small fraction of the thousands of orders we fulfill each year, usually impacting a group of customers at once. Additionally, some employees left due to delays in receiving prepared orders.

It’s been a difficult journey, not knowing what was happening with my health as my condition escalated faster than we ever anticipated. When we launched Ostomybagholder.com in 2011, the goal was to use it as a stepping stone; my true passions have always been writing and making music. Over the years, I’ve written a series of stories and created some music, which I’m eager to share with you soon.

That brings me to my final point—and why I’m speaking out now. We’re facing ongoing online harassment, and I want to offer my side before this continues unchecked. I have proof of what we’ve endured, and I’m here to say that words can promise, but actions prove. With that, I personally ask you to share my story. What’s happened has hurt me, my partner, our company, and you, our customers.
Soon, I’ll be announcing my upcoming book, where I’ll share the full experiences and insights as someone who’s lived with Crohn’s Disease since a young age. I hope it can help others. Living with a chronic disease has given me a deep understanding of life’s complexities, and I’m here to tell the full story.

Me at age 14 (left) and age 34 (right)
Me at age 14 (left) and age 34 (right)

As an update, I found excellent doctors who completely understand what has happened. My Crohn’s Disease recently went into remission, addressing the pancreatis has brought years of energy bustling at my hands and feet, and I’m expecting to have surgery in the near future to finally resolve many of these long-standing issues. Yet, the greatest hurdle I’ve faced has been overcoming the libel, slander, and hostility from those who were supposed to help. I’ve been politically and racially harassed, treated like an addict, and turned away in times of need. We can—and must—do better.

We created OstomyBagHolder to support other ostomates who might be struggling, aiming to provide products that make a real difference. Over time, we expanded our offerings to include various products and styles, each one inspired by customer requests. When we recognized the need for a sister site featuring pre-made options, we launched PouchWear.com.

As I mentioned, I invite you to look at our actions, not just the words others say about us. For many years, we’ve been the only provider of truly custom-made products, and we’ve added sizes like 2X, T1, and T2 bags to serve as many ostomates as possible. Because we handcraft each item locally here in Yuma, we can offer these unique options and ensure they’re tailored to different needs. We understand that everyone’s journey is unique, and we’re committed to helping you find exactly what works for you.

The words on my website aren’t just a catchy backstory—they’re my story. This is who I am, and I’m grateful for the chance to share that with you.Thank you for listening, sharing, and caring. Your support has meant everything to us during these challenging times. We have so much more we plan to accomplish, and we’re excited for you to be part of it. I love you all deeply and can’t thank you enough for standing with us!

-Micah