I have been awake all night. Not that that’s unusual. I have Sjogren’s Syndrome which, at this point in my life, causes me a lot of body pain. But last night I was struggling with a “side effect” of my Sjogren’s called Gastroparesis, a stomach condition characterized by pain and nausea. It kept me from getting comfortable enough to fall asleep no matter how I twisted and turned and puffed and propped my pillow. My stomach hurt. A lot. So much so, it felt like a Shuriken Star was lodged in it and any movement I made would push one of the points into the lining of my stomach, which was already swollen and irritated to begin with.
Gastroparesis literally means “Stomach Paralysis” according to the straight Latin definition, but most cases are only partial paralysis cases. This means that food moves through the stomach more slowly than it should. Also called slow motility, Gastroparesis affects approximately 1.5 million Americans with 100,000 suffering from a severe form and 30,000 failing to find relief from conventional medical therapies. Diabetics, for some reason, are more likely to develop this condition than the general population.
The most common symptoms are severe abdominal pain, chronic nausea and vomiting, bloating, early satiety, and a feeling of fullness. These symptoms occur due to the fact that food sits in the stomach instead of moving through it. Food can build up and the body feels the need to expel it, or the stomach pumps out extra acid to try to break it down. Or it can pass into the intestines in a lump which will cause a whole host of other end issues. For some, Gastroparesis becomes so bad that they have to have a feeding tube placed to get enough nutrition into their bodies.
So this morning, after being up all night not digesting my dinner, my stomach was sending me mixed signals.
“I’m starving!…No, I’m going to burst!…No, I’m starving…”
I don’t know if this is normal for everyone with Gastroparesis, but it happens a lot during my Gastro flares. It seems like my body knows how long I haven’t eaten for and my hunger center will trigger even though my stomach isn’t done processing.
When I was tested to diagnose Gastroparesis – called a Radioisotope Gastric Emptying scan – I was told the radioactive eggs (yuck!) I had to eat should have moved from my stomach in the four hours I was there. They did not move at all. So I don’t think it’s a stretch that I could have most of my evening meal left in my stomach the next morning. Or that it has moved just enough for my body to tell me to eat again even though I am still in pain.
So, what caused me to get to this point? Most likely I overate. (I did.)
The most common treatment for Gastroparesis is dietary monitoring. Basically, Gastro sufferers eat smaller, more frequent meals that contain foods that are termed “easily digestible”. For me, that means avoiding most fresh vegetables, fruits, and now, most meats. You see, chicken and pork can be tough and fibrous and very hard to digest. So can ground beef. For someone who does not care for the usual non-meat sources of protein and can’t eat nuts, this newest issue is problematic. But last night, I was craving a burger, and I ate one. You’d think I’d know better by now…
Within an hour of eating, the pain started. And the queasiness. And the burping. I know gas isn’t listed as a common symptom, but I get it so bad that my husband calls me his ‘Little Sailor Girl’. And all I wanted to do was lay down, but getting comfortable was impossible. So was moving around. I could feel the food moving in my stomach whenever I changed positions. And whenever that happens, my body wants the food out. Sips of cold water help to ease the nausea, but on nights like this, I can’t take any medications, so painkillers or nausea pills are out. It’s a “ride it out” situation that will finish with one end or the other, not surprisingly, in the bathroom.
By now, you all know that this attack lasted through the night, meaning I rode out the pain and nausea. There will be continued pain as my misguided food choice finishes its journey. The pain is caused both by gas and extra acid, as well as the fact that food that sits in the stomach tends to ball up in a wad and progresses through the rest of the GI tract that way. But at least for now, the worst was over. The next steps would be addressing the fact that my stomach thought it was hungry.
At times like this, when my Gastroparesis is in a flare, I have a ‘go-to’ list of foods. The most common is Maple/Brown Sugar flavored Cream of Wheat. It’s mushy and bland with just enough sweetness to be appealing. And when I was pregnant, my OB told me sugar settles the stomach and to keep popsicles on hand for my ‘morning’ sickness. (I still do this; only now, I use them for Gastroparesis.) My other go-tos are cinnamon toast, Ritz crackers, chicken soup, jello, popsicles, rice pudding, and Gatorade. I will resort to these foods until my pain and queasiness dissipate. Then I will replenish my stock for next time. Because unfortunately, Gastroparesis flares can happen even when I make good food choices.
Gastroparesis: What We Know
There is no single cause of Gastroparesis, though it’s known that damage to the Vagus nerve is usually involved. This nerve controls the muscles of the stomach. What causes damage to that nerve however, can be one of a multitude of things, from surgery to diabetes (the most common cause) to medication. There are also cases that cannot be clearly diagnosed and are labeled ‘idiopathic,’ meaning of unknown origin. In my case, it’s the fact that I have Sjogren’s along with some of the medications I take that is causing my Gastroparesis. Connective tissue diseases are also listed as causes for Gastroparesis. The fact that I recently had abdominal surgery and then my condition worsened is not coincidental, either.
Gastroparesis: What I Know
As of this writing, I have been diagnosed with Gastroparesis for six years. I still do not have a complete handle on the dietary modifications I need to make. For the most part, that is my fault. I don’t have the willpower to give up chicken and burgers and crunchy stuff. But I know I have to. Not just due to the overwhelming evidence in the literature, but just due to my personal experiences when I indulge.
Life has become a true love/hate relationship with the food I eat. But that relationship is of my own making. At least I have the diagnosis and the knowledge I need to make my Gastroparesis more manageable. There may be no way to truly control it, at least for me, but there is a way to reduce the number and intensity of the flare-ups. And that, in my book, makes all the difference.
About the Author:
Sharilynn was born and raised in Rochester, NY. She was diagnosed with Sjogren’s Syndrome four months after her second son was born. Her boys are now in their 20s and she has since developed MCTD, Inflammatory Arthritis, and Fibromyalgia. Sharilynn raised her kids, worked a career, and continued to run a household with her husband all while being diagnosed with these autoimmune conditions. She currently writes about these experiences while being a volunteer kitten cuddler at a local rescue.