As I laid on a bed in the surgery unit of my local hospital, a nurse checked my wristband before inserting the IV. She silently noted my birthdate, and said, “Wow, you look great!” (Unspoken, of course, was the “…for your age.”)
“Thanks,” I replied. “But if you want to see something really young-looking, check out the inside of my stomach,” and we both laughed, because I was there for a regularly scheduled procedure that involves getting Botox injected into my abdomen while under anesthesia. Every six months or so — I’m a “frequent flyer” at this hospital — I return as part of my treatment for a rare stomach condition called gastroparesis or delayed gastric emptying.
I used to answer “excellent” to questions about my health on all my medical forms. Unfortunately, that all changed about six years ago, when I developed persistent low-grade nausea. A Baby Boomer, I knew I wasn’t pregnant, but that uncomfortable nauseous feeling felt much like so-called “morning sickness,” lasting all day and night long. My other big symptom was called early satiety; when I was eating, I’d become uncomfortably full after just a few bites.
I’m pretty resilient and ignored how I was feeling for some time. But then I started canceling plans left and right because I felt so crummy — just walking into a supermarket and being assaulted by a cacophony of different smells made me gag. And even scarfing down Costco-sized bags of hard peppermint candies wouldn’t ease my nausea. Sitting in my car one day in May of 2015 and having to open the door to vomit in a parking lot, I realized something was really, really wrong.
I finally consulted a gastroenterologist. An ultrasound of my abdomen revealed multiple gallstones, which I was told might be the source of my discomfort. I had my gallbladder removed, but unfortunately, the nausea persisted — and I had a nice new big scar to show for my trouble. When I went back to talk to the doctor again she mentioned that there was a rare medical condition that might be causing my nausea and early satiety. It was called gastroparesis, which is when the muscles in your stomach react too slowly, and so don’t move food through your body as quickly as they should.
In mid-July, I underwent a test, called a radioisotope gastric-emptying scan, to confirm my diagnosis of gastroparesis. I was instructed to eat some egg salad smushed between two cloud-like slices of white bread. (I would have preferred chicken salad with fresh dill on a warm flaky croissant, but alas.) The egg salad contained an ingredient I don’t usually keep in my own spice drawer — a small amount of radioactive material with no taste — that allows a camera to follow the food through the digestive process.
After that singular lunch, I lay on a table for a few hours during which several scans were taken. Indeed, I had gastroparesis.
Neda Khagan, M.D., the doctor in Greenwich, CT who treated me, explains that for most people, after 90 minutes at least half of the food in their stomach is digested. For patients like me with this rare disorder — thought to afflict about 10 men and 40 women out of 100,000 people — the stomach muscles work poorly or not at all. Digestion is delayed, causing various complications, including the symptoms I had dealt with for months.
In my case, after almost twice that amount of time, my scans showed that more than half of the food I ingested was still in my stomach. And when food stays in the stomach too long, it ferments, Dr. Khagan told me, which in turn causes the nausea, early satiety, gas, acid reflux, distension and other symptoms I experience. For me, the persistent nausea is the worst — it is very debilitating to live with even low-grade nausea, never mind the flare-ups which can occasionally confine me to bed for several days.
Dr. Michael Cline, medical director of the multidisciplinary Gastroparesis Clinic at Cleveland Clinic in Ohio, says gastroparesis is usually seen in several types of patients — those who are diabetic, those who have had abdominal surgery, those who have had a stomach or respiratory virus (including COVID-19, he adds) and those who suffer from autoimmune diseases like scleroderma, lupus and so on. And because more women than men are diagnosed with autoimmune diseases, says Dr. Cline, more women than men thus have gastroparesis. Alas, I had none of those risk factors, so my cause was considered idiopathic, a fancy medical term for “no one has a clue why you got it.”
Unfortunately, there is no cure for gastroparesis, says Dr. Cline, and even the medicines used are just not all that effective. For me, treatment involves a combination of medication to stimulate gastric emptying and reduce nausea and vomiting; severe dietary restrictions and the endoscopy treatments in which Botox is injected into my pylorus, the muscle between the stomach and small intestine. For most people the pylorus opens and closes on its own — not so for people with gastroparesis. “Basically, the Botox paralyzes the muscle,” explains Dr. Khagan, “so that it stays open and the food is allowed through.”
Even with that treatment, the food I’m able to eat is very limited. My diet’s heavy on protein (eggs, turkey and fish, all prepared simply) and low-fat dairy like fat-free Greek yogurt or cottage cheese. When someone says, “Let’s meet for lunch” and I explain that I have a stomach condition, they invariably reply, “Oh, we’ll just have a light salad.” Well, I can’t eat salad! Only cooked fruits and veggies are allowed; fresh vegetables are too high in fiber. Fats are also big triggers for me — I can’t eat fried foods, oil or butter.
If I eat the “wrong” thing, I get violently nauseous, often for days. Sometimes I can trace a flare-up to a specific food, sometimes not. In one case, I had a supposedly low-fat frozen yogurt while out and became violently ill, curled up into a fetal position, for three days.
Gastroparesis is not life-threatening, but it has definitely been life-altering for me. Things that some people take for granted, like eating out, can be tricky. One time, for example, I went to a small Greek restaurant and told the server I couldn’t have oil, butter and fats. The waiter chastised me, telling me, “We can’t cook without olive oil, it won’t taste good,” to the point that I could feel the tears welling up in my eyes. (When I asked to speak to the manager, the chef himself came out, was as nice as could be, and steamed me a delicious entrée of fish and vegetables. But I have crossed that restaurant off my list.)
Of course, living with any chronic medical condition is exhausting. Thankfully, it doesn’t affect my work; in all my years as a journalist, I have never missed a deadline — and in fact, I usually hand things in early. But I almost missed the deadline for this piece. It wasn’t that I ate something that made me sick. It was that thinking about what I was going to write forced me to confront how depressing living with this condition can be. The loss of control is hard to deal with — I never know from one day to the next if I will feel well. And I hate to talk about how I am feeling — it doesn’t help — although I do talk to a therapist when I am feeling really down. And yes, sometimes I do feel really, really, down. “Don’t ignore the psychological ramifications of living with this chronic illness,” says Dr. Cline. “Living with it can be extremely embarrassing, isolating and debilitating. And while you might not look sick on the outside, you can still feel awful inside.”
As someone who often writes about medical topics, it is at this point in these stories where I include a bit about a typical patient’s prognosis. While Dr. Cline says gastroparesis can go away on its own or become less severe, the longer a patient has had it (six years and counting for me) and the more severe their symptoms (again, quite severe for me), the less likely it will do so. But, says Dr. Cline, there are some newer, more accurate diagnostic tests (a camera-like “smart pill” or wireless motility capsule you swallow), medicines and a recent type of endoscopic surgery in the pipelines which offer real promise.
“Tell your readers that they have to be their best advocates,” Dr. Cline urges. And so, I take his advice. I never knew that there were clinics solely devoted to gastroparesis but now that I do, I pick up the phone to schedule a work-up at the one at Cleveland Clinic. Founded six years ago — ironically, around the time of my initial diagnosis — the clinic sees about 1,500 patients with my same condition a year. Hopefully it will have something new to offer me. And besides, I’ve always wanted to visit that city’s legendary Rock & Roll Hall of Fame.
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