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An emergency room visit can be a stressful and scary experience for anyone. It is often even more frightening for someone with unique medical needs. This past winter, I had an emergency room experience that highlights the need for hospitals to be more prepared for such patients.

I was on my way to a follow-up appointment with my ostomy and wound care specialist when I fainted on a New York City train platform. I woke up just before an ambulance crew came to rush me to the local ER. As I lay in the ambulance, I dreaded the day ahead of me. I expected it to be filled with invasive tests and hours without sleep. What I did not expect was for the upcoming hours to be ones of isolation and fear.

The emergency room was crowded. Due to my ostomy problem and my suppressed immune system, they placed me in a small carrel-like room off to the side. As is typically the case, a nurse took some blood samples and put me on a liquid drip. I explained that I had been on my way to an ostomy specialist appointment because I was having trouble with the supplies the hospital gave me after my last surgery. I had changed my device in the morning, but it was already starting to leak. The first doctor I spoke with took a quick peek and informed me that it was not leaking. As time passed and my skin became increasingly irritated, I asked again if anyone could advise me on what to do. Finally, a kind nurse attempted to help. She asked a few ER nurses if they had any ostomy experience; none of them did. It seemed as though no one could help me, and some did not appear to care. It would be over twelve hours before someone with ostomy experience came to confirm that the hospital had given me the wrong supplies and that I did indeed have a leak. It was another couple hours before I was able to get a few samples of the right supplies (which would later cause a minor allergic reaction).

In the meantime, something far scarier happened. My blood tests were off, so one of the doctors wanted to do a CT scan to ensure that I did not have a blood clot in my lungs. Since I had recently had bowel surgery, they did an abdominal scan as well. I reminded the doctor, the technician, and the assistant that I had had my entire colon and rectum removed. I wanted to be as clear as possible to avoid any confusion.

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Well, either I was not precise enough, or the doctor did not listen. Thirty minutes after my scan, she came running to my bedside to inform me that something was “seriously wrong” with my intestines and that I needed to start prepping for emergency surgery. My mother and I were distraught. I had not even been home from the hospital for a week from my last surgery, and it looked like I would be going under the knife again.  I was also confused. The doctor had not explained what exactly was wrong with my intestines. Would this be another major surgery? Would I be admitted for another long and painful hospital stay? Would I have to go back on TPN?

These questions and countless others flooded my mind as I waited for someone to come and take me to the operating room. Fortunately, no one came to take me to the dreaded table. Instead, the ER doctor came to tell me that my intestines were fine. She quickly explained that she had not realized I had my colon removed and then walked away without apologizing. My mother and I laughed the experience off that night, joking about the doctor who probably thought she found some new, mysterious condition that causes the colon to disappear. I mean, seriously, where did she think it went?

Thirty-two hours after collapsing from what the ER eventually determined was dehydration, I was finally headed home. I was ready to put this day behind me and thought I could; I was naïve. This doctor’s mistake haunted my dreams for months. Every night I found myself back in that busy city ER being told I needed emergency surgery. For some reason, this ‘little’ mistake was almost as traumatizing as all of my other surgeries combined.

While I have healed from this trauma, I have come to understand it as part of a more significant problem. Emergency rooms are not always prepared for those with unique needs or medical conditions. This is a serious problem. Hospitals need to be a safe place (both physically and mentally) for all people regardless of their medical background or needs. A doctor or medical team may not always know how best to treat a patient, but they must at least listen and try. As a blogger for Girls with Guts, I am sharing my experiences and working to educate people so that future ostomates will not need to deal with the added trauma of confusion.

 

• About The Author
Kate Shannon holds an MA in American Studies and a BA in History and American Studies. She is currently working as a high school special education teaching assistant while taking classes towards an MS in Student Disability Services in Higher Education. When she is not working, Kate loves reading, visiting history museums, practicing the clarinet (a new hobby she picked up after her diagnosis), volunteering with children and animals, and doing yoga. Kate was diagnosed with Ulcerative Colitis in 2018 and had her colon removed in 2019. She is a j-pouch patient who is extremely grateful for the new life her surgeries gave her.
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