Living with Gastroparesis (GP)
I suffered my first debilitating bout of GP when I was 18. It started in mid-June, shortly after we had moved to our second home. A duplex with a yard. My daughter was one, a busy active one. It started with diarrhea. I had a tummy ache for days and every bite I ate seemed to trigger it. Then came the nausea and vomiting. Extreme nausea that made me dizzy and afraid to drive. I threw up night and day, even the smell of food made me ill. Weight started to come off of me like water.
It got so bad I went to the ER, not once, or twice but three times. Each time it was the same diagnosis, gastroenteritis – stay on clear liquids for a day or two, take Kaopectate, rest and I’d be fine. Only I wasn’t fine. I drank so much Kaopectate my daughter started calling it mommie’s o-pec-ate and would beg for a taste. She thought it looked yummy. Just the smell made me gag.
By early August I’d lost over 20 pounds, my daughter, taking advantage of my frequent weakness and bathroom visits, had painted the dog green, pulled a huge stack of unwashed dishes off the table, breaking most of my plates and dug a hole in the backyard with the help of our neighbors two year old son. I’d been called lazy by my family and my neighbors, and our friends were disgusted that I couldn’t seem to get it together. I hadn’t attended one cookout or visit to the lake all summer.
Then, gradually, it started to subside. By Labor Day I could eat, mostly soft foods, in small amounts. It was strange, I tried to talk to those around me about it, but 18 year olds weren’t supposed to have anything serious wrong with them. I was lazy, a hypochondriac, no one took me seriously. And life moved on.
We moved to Virginia two years later and along the way, I learned to live with the frequent nausea that came and went. I seldom mentioned it, I didn’t want to be labeled, it was just me, I seemed to always be a little nauseated, a little tired. The summer after my daughter’s kindergarten year I started having stomach and chest pains and one day while shopping with a friend I suffered extreme dizziness and nearly passed out. I had developed a cough that wouldn’t go away. When I finally saw a doctor I was told I had asthma . . . and gallstones. I didn’t know at the time that asthma can be triggered by reflux.
A few years later, after starting a full time job I started to suffer from more extreme nausea and I began losing weight again. I didn’t have the diarrhea this time, but daily I suffered from nausea and my stomach would feel like it rolled and burned until I would eat something dry, like bread or crackers. However, most of the time I had no desire to eat. I lived on peanut butter crackers and plain cake donuts. After only a few bites I would feel full. The weight came off quickly again, not as fast as before but over a 6 month period I dropped nearly 25 pounds without trying.
My older sister lived nearby and she insisted I see a doctor. After a complete physical I was told I seemed perfectly healthy. No explanation for the weight loss. Then I started waking up with projectile vomiting. I would wake from sound sleep with vomit spewing from my mouth as I bolted upright in my bed. The doctor that had diagnosed the gallstones sent me to a GI specialist at the Medical College of Virginia in Richmond. The doctors there told me I had Gastro Esophageal Reflux Disease – GERD. More serious than simple heartburn, with GERD your body actually produces too much stomach acid, it builds up and finally moves up into the esophagus. I started meds and felt like I finally had a diagnosis, a reason for the years of extreme swings in my appetite and my crazy weight fluctuations.
I started seeing a GI doc closer to home, who agreed that my gallstones didn’t have to come out until I was ready (I knew they were developing laparoscopic surgery for gallbladder removal at that time and I wanted to wait for it). He started me on a couple of different meds and I seemed to do well, able to eat pretty much what I wanted for awhile. But the pain got so bad with the gallstones, I finally had my gallbladder removed.
I expected a big improvement, but it didn’t come. In fact, after a short amount of time of eating freely and gaining some weight, the pain started again. It couldn’t be gallstones any more, I no longer had a gallbladder. After a battery of tests it was decided maybe I had a small hernia. The doctor tried a new med, and it was wonderful. Propulsid. I could eat, my bathroom habits were regular, no bloating. I loved it. But then it was pulled off the market by the FDA.
Coping as best I could on GERD meds, life moved on. Then one January when I went for my regular annual visit I told the doctor that I still suffered a lot and mentioned off hand that the best GERD medication I had ever taken was Propulsid. Without explaining why, he sent me for a gastric emptying test. And finally after 20+ years since that first horrible summer I had a diagnosis. I had idiopathic gastroparesis, frequently those with diabetes or auto immune disorders develop it, but mine, being idiopathic, means cause unknown. I have learned since though that in most cases it begins with a long period of nausea, vomiting and diarrhea, just like mine did.
The only GP med on the market has side effects if you take it too long, including tardive dyskinesia – uncontrollable muscle movements. So I took it for awhile, but for the past 6 years I’ve tried not to. I live with daily nausea and the list of foods I shouldn’t eat seems much longer than the list of what I can. I feel hunger but often can’t eat or fear the consequences if I do eat. Or I am ravenous from days of little appetite and overeat.
I constantly look like I’m about 6 months pregnant, bloated and uncomfortable. Thin and small boned everywhere else, it makes me feel deformed. I know I am blessed, many who have this disease suffer so much worse, but for someone who’s active and loves ‘good foods’ – like salad and raw apples & blueberries – all things I shouldn’t eat – it is still a tough sentencing. No one understands the bloating, and I hate it. My slacks can fit fine in the morning, only to be impossible to button by afternoon. I can literally bloat up and change sizes in one day! I use ginger and papaya for the nausea, I use molasses to regulate me, and I take my reflux meds, I try to control my sinus’ and thus control my asthma, and life is good.
Except I know I’ll never be a foodie.
I’ll never be able to eat peppers and onions and sauces and buttery things, I can’t really enjoy steaks or ribs or even lasagna without paying the price.
So if you meet me and wonder why I almost seem like a food snob, why my plate has only small amounts of some foods, or if I seem to be almost inhaling a boat load of carbs, well you’ll be seeing what my GP diet looks like (when I can eat). High carb, soft, easily digestible foods. Because believe it or not, food typically passes from our stomachs in 30 – 45 minutes but can take 1 – 2 days for it to pass from mine.
Yeah, I’ll never be a foodie, but it’s okay, the world needs non-foodies like me too. Just to balance things out.