Gastroparesis, seriously…

October 18th, 2013 by Carrie, the Just Mildly Medicated gal

Being in the chronic illness community I have connected with a lot of people with Dysautonomia as well as other chronic illnesses. The term gastroparesis wasn’t new to me, although spelling it was a bit of a challenge for both myself and autocorrect.

(gastroparesis is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer time than normal)

I felt bad for those that had gastroparesis, even those on the mild side. I love food and my family’s days revolve around food. We start the day talking about what we will have for dinner. Now that isn’t to say we are elaborate foodies, we have 4 kids and among them a pesco-pollo vegetarian and another with celiac disease. We have to make sure there are appropriate options available at breakfast, lunch and diner, not to mention snacks to accommodate kids who will eat anything to those with specific dietary needs and desires.

While I live days thinking about food replacements and equivalents, having gluten-free foods and meatless protein options,  I couldn’t imagine a day revolving around avoiding food, well not until I was laying under a scanner with scrabbled egg in my sinus passage.

Okay let me back up…

To be honest it didn’t dawn on me that my constant need for Prilosec to try and treat the nonstop heart burn was part of a bigger picture. Being full had nothing to do with my eating, I ate because food is good. Feeling full before I even started a meal didn’t stop me from eating. Sadly even the few times I threw up didn’t raise any red flags that I was willing to address. I was dizzy before hand so I chalked it up to that darn Dysautonomia. Now when I got on the scale at a doctors appointment and had lost 10 pounds I was pretty excited, until further thought that I hadn’t really done anything to lose those 10 pounds.

If you’ve hung around here a while you know I have a port and have daily infusions to help prevent me from passing out. My RN who comes to access me at the beginning of the week didn’t leave me the luxury of denial. Every week she asked how I was feeling with the run of specific questions. My nausea became a weekly admittance followed by the encouragement to make a doctors appointment and my not making that doctors appointment.

During my yearly trek from Missouri to Pensacola, Florida to visit the rather wonderful Center  for Autonomic Disorders we started talking absorption.  I wasn’t absorbing some vitamins the way I should, my levels for a few had dipped down to deficient even with supplements and most others were at the lowest end of normal. After more talk it was pretty clear that a few of my meds weren’t working as well as they should considering the dosage and my very faithfully taking them on time.

When the talk turned to tummy there was no way out, I was going to have to say to a doctor that food, my long time friend, had in fact turned foe.

TRAITOR!

Nonstop nausea… feeling full pretty much all the time… bloating to the point of painful after eating… yes, I even threw up…

DAMN IT DAMN IT DAMN IT!

After coming home I made the appointment with my primary doctor to schedule a gastric empty study and mentally gave the middle finger to every meal I ate before the actual day of the gastric empty study. I even had my last supper the night before the test, Chinese take out yummm… bourbon chicken, fried rice, and an egg roll with sweet and sour sauce on it. Then I writhed in pain on the couch for two hours praying I didn’t throw up with tears in my eyes asking myself why, why in the hell did you do that?!?!

The next morning came and as I looked at my microwave eggs in the sterile hospital room all I could think was, “I have fried rice in my throat.”

Pepper, pepper will make this better… in comes the packets of pepper from the awesome gastric empty study guy and I ate the eggs while joking about when he was going to being in the bacon.

Then it came time to be horizontal with a scanner over me. I laid there with a remote control in hand prepared for the next 90 minutes of boredom. Those who know me will say “Wait a minute… REMOTE… WHERE WAS YOUR BOOK???” I assure you I had a book, the scanner made it impossible to read as it came up to my shoulders. I even asked the awesome guy if he’d read it to me. He said no, this was his only lapse in awesomeness.

After 30 minutes and some God Awful daytime TV then 30 minutes of coverage of the Government shut-down while hearing and feeling my stomachs rebel against this entire process I was realizing that this was not going in my favor. An hour in I was staring at the ceiling wondering if you could suffocate on food. I was quite sure the scrambled eggs were in my sinus passage. Thinking this was possibly abnormal I thought maybe when gastric empty study guy comes back I should inquire if anyone has in fact suffocated on egg during this, then thought maybe not.

I opted for “So, this egg… wheres it at exactly…?” Quite certain he’d say “Up your nose.” Instead he gave the you’ll have to talk to your doctor yadda yadda. Yes, I agree, I too was questioning his awesomeness. I spent the next 30 minutes focusing on not throwing up, if I burped, sneezed, or coughed it would be over, by over I mean the test and my life because throwing up is the WORST!

That afternoon the nurse from my doctors office called and said, “Hey kiddo, you have gastroparesis.” Yes, this is how comfortable many chronic illness patients and nursing staff become.

So crap, I have gastroparesis, seriously…

stomach

Tags: ,

6 Responses

  1. KELLY says:

    WELCOME TO THE CLUB/NIGHTMARE OF GASTROPARESIS. FOOD AS FOE IS EXACTLY RIGHT. YOU’LL WENT TO KEEP TO SMALL MEALS AND MOST GPER’S HAVE TO AVOID FIBER.

  2. Hayley-Eszti says:

    Oh no! When will your body give you a break! Is this a long term thing or will it only last a short while? I’m surprised I’m not more familiar with it to be honest! Hugs, Hayley x

  3. Lindsay says:

    i can totally relate to this post. i was diagnosed with mild gastroparesis at Mayo, back before all my dysautonomia shiz started.

    microwaved eggs are gross. fortunately, i was aloud to go walk around Mayo, as long as i came back every hour to be scanned.

    sorry to hear about the GP diagnosis.

Share Your Opinion