How I’m starting to overcome it without medication
When your doubled over in stabbing pain robbing you of the ability to breathe or think, nothing else matters. This is how I felt after I ate, sometimes after even just drinking water. All the time. For five years. I was eternally nauseous, and sometimes I felt like my rib cage was going to rip apart from the pressure. I think I can safely say that would have put me in the category of a living hell.
What’s Gastroparesis?
Gastroparesis literally means “paralyzed stomach”. The stomach won’t empty when it should. The condition can develop for different reasons. There can be genetic or neurological factors that could be contribute to its development. It can also be negative side effect from certain prescription drugs. It can also be idiopathic, no reason can be found. Women suffer from digestive issues more than men. The fact there are so many underlying causes with some remaining unknown, is probably why effective treatment can’t be nailed down. For me, having Ehlers Danlos (genetic disorder), being female, and an allergic reaction to antibiotics was the perfect storm to adversely affect my digestion forever.
No cure?
I was beyond miserable. I tried not eating at all. All that did was make me nauseous and faint. The pain was still occurring even from water. I tried liquids only. That was no better. I was regurgitating food I hadn’t eaten in two days. My abdomen was swollen, sore to the slightest touch. My face and shoulders were gaunt. Ironically, I was gaining weight even though I wasn’t eating. I felt like my whole body was inflamed. Sleeping was even an issue since the pressure never really died down. I looked like I could have been the lead zombie in a zombie apocalypse movie and I wouldn’t have needed a makeup team.
I went to the doctor, he could see I looked rough. He flatly said “we have no good treatment for Gastroparesis.” Once you’ve got it, you’ve pretty much got it. For some, the condition gets so bad, to survive they need a feeding tube and are fed an elemental formula. Otherwise they’d die from malnutrition. Their best idea is to prescribe meds that give you violent diarrhea, to hopefully get your stomach to empty. No thanks! That’s just a new problem, not a solution. Besides, I didn’t think I could run fast enough for his said “solution”. I walked out hunched over from pain, and dejected from lack of hope this would change.
Crawling Forward
Besides this horrible abdominal pain, I was constantly covered in rashes. Most mornings I woke up struggling to even look at myself in the mirror because my eyes were so swollen. My eyelids were cracked and bleeding, yet somehow my blood work was “all fine” when checked. How could he possibly say I was fine? Obviously I was completely on my own in my fight against whatever was going on, or more accurately not going on in my body.
The abdominal pain, rashes, cracked bleeding skin seemed to coincide. That’s when I learned about Mast Cell Activation Syndrome. For me, these two issues were feeding off each other in an insidious cycle. Gastroparesis and MCAS were skipping about hand in hand through my body, ruining my life. When my digestion was even a little bit better, so was my skin. Surely if I lessened the one, it would help calm the other. I realized there were foods that were a bit better than others. When I analyzed what foods were the least offensive to my system, I was down to only 6. It definitely helped, but I didn’t think it was possible for the body to heal with only 6 foods. I took digestive enzymes. I drank roasted dandelion root tea when I read it could possibly help digestion. I took ginger oil when I read it can help empty the stomach faster. I was nauseous anyway, so why not try it. I added rosemary oil to that when I read it can help with soft tissue pain. All these things helped. But only to a point. There was still a distracting pressure when I ate or drank. And it wouldn’t take much for the pressure to elevate right back to where it had been. If I forgot the oils or I ate too fast, I’d be white as a sheet, doubled over in pain.
Finally Progress!
My health plateaued for months and months. I was still having such bad episodes my kids wanted to take me to the hospital about once a week. Googling symptoms and stories of others still left me on that ledge. A piece of me started to think this was the best it was going to get, and it was far from even good. I shoved that piece of me down and kept scouring different medical research. Then I found it. A paper that stated high doses of vitamin c (based on body weight) helped rats with gastroparesis. That’s it? Vitamin C? I didn’t care that the study was with diabetic rats and not humans. I wanted to eat without excruciating pain again, even if it was only 6 foods. After calculating the amount that would correspond with my body weight, (20 grams) I slowly worked my way up to that amount. My eyelids started to heal. There was less pressure. Rashes were now only occasionally. With more energy, and better sleep, hope began to emerge. Maybe I could eat other foods! Sadly, the answer was not yet. There was still a puzzle piece missing.
My confidence was stirring that I could figure this out. If diligent searching could find me one answer it could find me the next one.
Examining the pieces
It had never occurred to me that the antibiotics messed with my stomach acid. Unfortunately, even years later it stayed that way. The vitamin c had done wonders, but I wasn’t able to add more foods. Then I came across betaine HCL. Betaine had several benefits. It reduces inflammation, protects the liver, helps with endurance, and helps cellular detoxification. With the added HCL, I thought this might be an answer as big as the vitamin c. It was. I bought it the next day, and took one with my next meal. Less pressure! I read that each person’s perfect amount is different, so I played around with the number of capsules I took. Two was even better. Three, less pressure still. Four. At five I had almost no pressure at all! I tired six, but my stomach felt hot and sore. Ok, five is my perfect number. I no longer dreaded eating. There was light at the end of the tunnel that maybe my food list could expand into the double digits. Food wasn’t my enemy and I felt I could actually absorb nutrients. Finally I was crawling out of my five year hell. (Note:Beatine is also available without the HCL, sold under the name trimethylglycine if you want the benefits of it without the HCL)
Keep moving
My digestion still isn’t perfect. Actually, I have quite a ways to go to get back to where I was before all this slammed me 5 years ago. That being said, not to get all Beauty and Beast on you but I feel human again! I’m adding foods back very slowly, I have no desire to relapse. I have hope that in time I’ll be able to eat a wide array of foods again without excruciating pain. I can see spicy barbecued shrimp in my future, maybe as soon as next summer.
I still read research, just in case there’s something I haven’t found. And I’m absolutely OCD about taking my supplements. But I’ve been richly rewarded in my hunt for answers to gastroparesis.