Gastroparesis is made up of two words. “Gastro” means stomach. “paresis” means paralysis.
This is a (large) part of dysautonomia and it’s something I struggle with every day. Like EVERY DAY because there is technically no days in which I am “normal.” I am always in one of three states that exist.
The first is stage is that your stomach is paralyzed. For the first few days it’s almost fun. You’re still on that somewhat bland diet, but maybe a piece of fruit here and there don’t cause so much pain. But then another few days pass and the three meals a day you’ve been eating are still in your stomach. By day seven you’re in a fully-fledged panic attack. None of your daily preventative medications are working at all. You’re going to have to do something drastic to get things moving again.
You start by eating some of your trigger foods. For someone who tries so hard to stay away from these kinds of foods, it’s almost like a free vacation. Things like chocolate, milk, cheese on your sandwiches, grapes and tomatoes. But your stomach isn’t moving. Still nothing.
You take it a step further. You have a couple of spoonfuls of ice cream. You eat a small portion of mac and cheese. You buy a package of mini-reeses peanut butter cups.
Now you just feel sick and nauseated and..well… toxic might be a good word. There is complete silence within your body and you’re sitting there twisting in every direction just to get something inside of you to wake up.
Most of the time it’s all about hydration. That’s nothing new. I take an average of 1.5 L of saline a day IV and then several bottles of high-sodium sports drinks or water. But that isn’t enough. Not even close. So you up the ante. Now you’re not only full of a week’s worth of meals, you also feel like your drowning in your own body–fluids that are supposed to help just pass right through you and your stomach stays completely silent.
At this point you just want to cry because the next step is a horrible cocktail of drugs that either won’t work–or will and will cause you to feel the kind of excruciating pain and spasms that may not stop for days. And during those days you’ll be on that liquid diet again–you’ll stay on it until you feel somewhat more steady. You’ll start being able to eat things like meat and bread. Before you know it, you might think that things are going to go back to normal.
And you enter stage 3: You accidentally take a bite of something too out of your league at a party, and suddenly the whole cycle starts all over again.
I’ve been thinking a lot about how the port has really improved my life. Like majorly, MAJORLY improved it. I feel like I have so much freedom now to do things I couldn’t do before because I was afraid I would upset the balance and end up in the hospital (which in reality, was spot on because I was pretty much living at Boca Regional.) I’ve been thinking a lot about how much the gastroparesis symptoms impact my day-to-day life and it really does hit a nerve for me. It stops me from doing things I like to do, puts me in pain on a daily basis, causes me to worry about whether or not I’ll have to go to the hospital, causes me a lot of shame and depression….
Sometimes I wonder if eating food is even worth the stress it gives me with this disease. (Not that I’m not grateful for every single bite of food I get in my mouth.) I just wonder what my life would be like if we could solve that element.
We found a way to help with the hydration. Now I can be responsible. I can put my disease in my own hands. I can have a sensible level of control over my disease. I know I put up a big fight when it came to considering adhesion surgery this winter. I know that surgery is a major ordeal and it’s not just something I idly entertain the idea of.
I won’t lie to you though, I edit stories on the RARE Daily that frequently start with titles like, “Her Last Meal Was Six Years Ago.” It makes me very nervous to think about how far downhill I’ve gone with gastroparesis and how time-consuming and ineffective this might be over the course of another decade.
I’m having a crisis of colon. Can someone please intestine me in some information about new treatments/medications? Anything you can rectumend would be very appreciated.