My Chronic Beginning 2

I had been counting down the days to finally have my hiatal hernia repaired. I looked forward to getting back to work, earning a paycheck again, and being around my coworkers and friends. You don’t realize how much you can miss work—routine, purpose, connection—until your health takes it away from you.

When surgery day came, things didn’t quite go as planned. What was supposed to be a 3-hour procedure turned into a 5-hour operation, followed by another 2 hours just to get the pain under control. And let me tell you—this pain was no joke. Honestly, it was more intense than giving birth to my nearly 10-pound baby girl.

This experience was not only physically exhausting but also emotionally overwhelming.  I spent 5 long days in the hospital and couldn’t wait to get home.

Once I got home from surgery, things took an unexpected and ugly turn. After a few days on a liquid diet, I was supposed to slowly transition back to eating normally. But nothing about it felt normal. In fact, it felt like my body was completely shutting down.

I couldn’t even keep down water. Every sip, every bite—no matter how small—came right back up. I was constantly vomiting, and the acid reflux was far worse than I ever imagined. It wasn’t just uncomfortable—it was terrifying.

At times, it felt like I was literally drowning in acid. Lava-like reflux poured into my throat, burning its way up and stealing my breath. There were moments where I couldn’t breathe at all—like my airway was sealed off by fire. It was one of the most frightening things I’ve ever experienced.

Shortly after my surgery, things took a serious turn for the worse. I later found out that my vagus nerve had been damaged during the procedure—a nerve that plays a critical role in controlling digestion. A Gastric Emptying Study confirmed the result of that damage: I now have Gastroparesis, which means my stomach is partially paralyzed and no longer empties food the way it should.

During the test, I ate radioactive eggs and toast (yes, really), and four hours later, only 10% of the meal should have remained in my stomach. In my case, an alarming 93% was still sitting there.

From that point on, I was in and out of the ER—admitted three times between July and December. By the end of the year, I was dropping weight dangerously fast because I couldn’t keep anything down. I was desperate and began pleading with doctors to consider tube feeding as a way to save my life.

I’ll talk more about my December hospital stay in a separate post, but here’s the part that still stuns me: as someone who once battled anorexia and fought tooth and nail against the idea of being tube-fed, I was now asking for it. I mean, it had to be bad—really bad—for me to reach that point, right?

It wasn’t until February that I finally received an NJ feeding tube. I came into the ER with a heart rate dropping to 20 bpm, lightheaded, dehydrated, and severely malnourished. I felt awful—like my body was just giving up. A doctor finally came to me and said, “It’s time we think about tube feeding.”
I looked at her in disbelief and said, “You think? I’ve been asking for this since December.” She was genuinely surprised.

But even with tube feeding, the battle isn’t over.

Since then, I’ve been in and out of the hospital with clogged feeding tubes. Every time it happens, I end up admitted again because my body starts to crash within two days of missing my nutrition. Eventually, they transitioned me to a more permanent solution—a GJ tube. It allows my feeds to go directly into my small intestine, while the gastric (G) portion lets me vent my stomach when it becomes too upset.

Let me tell you, having a GJ tube is a whole other beast. It leaks. It’s sore. It clogs. I even spent the night in the hospital just to get a replacement. That experience was awful.

What I’m learning is this:
Being tube-fed keeps me alive and not much more.
I feel a bit better, yes—but it’s not a cure. My life has changed in ways I never imagined.

I’ve now been on and off disability from work for over a year. After much urging from everyone around me, I finally started the heartbreaking process of applying for Social Security Disability. That alone is a painful reality. I miss working. I miss contributing. I miss being around people. Instead, I spend most days home alone, completely wiped out from just existing.

This isn’t the life I had planned—but it’s the life I have now. And somehow, I have to find a way to make the best of it.