Gastroparesis

Two words I would not have understood three years ago.  “Gastroparesis Awareness.”  Gastropa  WHAT?!

I’ll try to make this short. A little more than two years ago, I started to have horrible stomach pain. I mean double-over-and-lay-on-the-floor-holding-your-belly kind of pain. And I have given birth without medication.  Trust me, it’s bad.  On top of that?  You know how you feel when you have the stomach flu, and your stomach starts to roll just before… you know, the big event?  Well, imagine that feeling all day.  That’s me.

But I’m a mom, and I have to keep going.  So I try to mask it.  I hear people complaining about “this” and “that.” And they have no idea.  None.  If you can EAT FOOD and it does not cause you double over pain, you are blessed.

Gastroparesis means “paralyzed stomach.”  Many people with diabetes develop it, while others get it from botched surgeries, often when the vagus nerve is accidently cut during a gallbladder or gut surgery.   Some people develop it after a virus, which has the possibility of going away after time.  Mine is idiopathic – meaning they have no clue why you get it.  (No idiot jokes here please..I’ve already gone there!)  Your food just sits in the stomach.  It does not digest.

So imagine eating a regular dinner.  Then imagine it sitting in your stomach.  Your belly becomes hard and bloated as if you were pregnant.  The pain starts. Then the nausea as the food just “rots” in your belly.  Many vomit at this point, but some can’t.  Food, which has been comforting all your life, becomes the enemy. It is a love/hate relationship.

Lots of people who suffer from gastroparesis lose weight. So much that they require feeding tubes and more.  Some require gut transplants, while some die.  Others gain weight from not eating. (Yes, this was me!)  Your body goes into starvation mode and holds on to everything it can. 

There is no cure for gastroparesis.  I am one of the lucky ones who can tolerate some types of food if I take a pill (Motillium aka Domperidone) purchased online from Brazil.  How crazy is that?  These tiny little pills keep me alive.  They allow me to eat a piece of bread or chicken without falling to the ground in pain.  They make my stomach contract just enough to get the stuff down.

My meals are limited.  Some days are good and some horrible, depending on my hormone level.  I can eat chicken, fish, bread, pastas… comfort food works best, again, with my little friend the white pill.   And with limited portions. What I can’t eat, EVER, is steak, roast beef, fried foods, raw veggies and fruits, salad… all the good stuff.  Ground beef seems OK, unless I’m having one of my bad days. I consider that a HUGE blessing.

It took about nine months for me to adjust mentally to my illness.  But it never really goes away – the fear of food, the disbelief that the one thing you have to intake to survive does not “work” in your body.  The fear of “What will happen to me when I am old? Who will order my meds online?  Who will stop the cook from serving me beef?”  “What will happen to me after taking domperidone for so long!  Will it cause cancer?!”

But I am a survivor.  And  a Mom.  And moms can’t get sick.  So I try to ignore this whole crazy thing and get through each day without my kids knowing I am practically doubled over with nausea or pain.  And then there are the good days. Ahhh those sweet days where I don’t feel my stomach.  Blessed be the Quiet Stomach.

I have not written this for sympathy.  I wrote it partially as therapy for myself, and partially to spread awareness about gastroparesis.  There are so many people suffering, some of them dying.  And through all this, I just don’t hear much about research and cures.

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