To the Doctor Who Said My Gastroparesis Was 'All In My Head'

In the midst of completely awful situations, it is often tough to see a silver lining. Looking back, though, sometimes I smile when I realize how some experiences have changed my life in surprising ways.

One prime example happened a couple of years ago. It was less than a month after I had gotten married. I had been unable to keep any food down for a couple of days, and any time I tried to eat, I was in severe pain. After two days of back-to-back ER trips, I was admitted.

I spent 3 days in the hospital getting IV nausea and pain meds. We were finally able to calm down some of my symptoms, but I was still unable to eat. The doctor didn’t come to see me until the third day I was there. He walked into my room and told my mom I was starving myself and was depressed. He did not listen to anything we said, and decided everything was in my head.

He finally, begrudgingly agreed to do an endoscopy and take a few biopsies. The next morning, I had the procedure. When I got back to my room after recovering, I had a lunch plate of chicken, rice, and green beans waiting. He had taken off any dietary restrictions because I was “completely healthy.” He finally came by the next day and smugly told my mom nothing was wrong, and I didn’t have gastroparesis because my stomach was empty (after not having eaten for four days). He said I had acid reflux, needed to take reflux medication, and see a counselor about my eating disorder.

We finally agreed to at least try the acid reflux medication, because we were desperate for something. However, when it came and the nurse handed me the pills, I could tell there had to be milk in the coating of the tablets. Milk is my worst allergen. I will go into anaphylaxis from even small amounts of dairy. That was clearly labeled on my chart. The doctor didn’t catch it, the pharmacy didn’t catch it; we ended up Googling the medication to confirm what we already suspected.

I got discharged the next day with little resolution to my symptoms and still being unable to eat. I struggled through almost five more months of severe pain, nausea, vomiting, and distension before having my first feeding tube placed.

Kylene with her NJ tube.
Kylene with her NJ tube.

Why do I share this? It’s not to bash the doctor (although there have been plenty of times I’ve wanted to). I have purposefully left his name out of this post. This is my reminder to myself that even the absolute worst times of my life still have purpose. Despite how gray the skies, and how rough the storm around us may be, there is often a silver lining, even if we don’t find it until months or years later.

We later discovered the doctor only took three biopsies (normally at least eight are taken) and the pathology report stated they were incredibly small and almost unusable. However, those were the biopsies that ultimately confirmed my mast cell disease diagnosis two years later. Even as small as they were, the pathologist still found increased mast cell counts that, along with my other history, confirmed the diagnosis. It was later reaffirmed with more biopsies that were the correct size and showed up to three times as many mast cells as the original ones.

As bad as that hospital stay was, I have to be thankful for it. Without it, I would not have a diagnosis. Without it, we might still be searching for answers. I still hope and pray I never see that GI doctor again, but there is also a part of me that is thankful he was willing to do the biopsies — he could have said no. I kind of want to write him a slightly sarcastic and passive-aggressive thank you note:

Dear Doctor,

You probably don’t remember me, but I definitely remember you. I saw you when I was in the hospital for severe abdominal pain and nausea. You told me I was depressed and starving myself. Maybe I was depressed that week — after all, I had you as my doctor. You ignored all prior testing I had already done showing slow motility in my stomach, and test results indicating gastroparesis. Anyway, I just wanted to say thank you. Yes, that’s right, thank you. Remember those biopsies you begrudgingly took only after my mom begged you? Those 3 tiny samples? I’m sure you don’t, but I do. You know why? Because thanks to you, we were finally able to diagnose what was actually going on. Even though the biopsies were so small they were almost useless, we were still able to get the staining we needed.

So as much as I “enjoyed” having you as a doctor as much as you enjoyed having me as a patient, I have to say thank you. Without you I could still be labeled as drug-seeking, with an eating disorder (oh wait…you started that, didn’t you) — but thanks to you, I now have a rare disease diagnosis and we are finally making progress in managing it. So keep doing what you’re doing — or not; I’m sure there are plenty of other patients like me who would benefit from you leaving the profession. Or maybe, just take a step back and consider that while hoof beats usually mean horses, they can, once in a while, mean a zebra.

Follow this journey on Maintenance Required.

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