Gastroparesis: A Stomach Motility Disorder

My mother and her twin sister are identical twins in their mid fifties. They share every possible genetic similarity: the same eye color, the same hair color, the same size shoe. Unfortunately, one trait they also have in common is a stomach motility disorder known as Gastroparesis. This is a relatively rare disease, often linked to diabetes (although not in some cases, as is the situation with my relatives,) where the stomach ceases to function properly, and cannot empty itself. Digestion of some foods is impossible (many people with the disease vomit incessantly,) and digestion of almost all food is painful. What is even worse is that there is relatively few ways to treat the disease. And to add insult to injury, the one thing that could help individuals like my mom and my aunt is often not paid for by their insurance company.

I, like so many others that have never heard of stomach motility disorders, was inclined to discount my mom’s illness in the beginning. She’s had indigestion issues before (now understood as early symptoms of the upcoming storm.) I thought the thing couldn’t have been as bad as she was making it out to be, because all I thought that she was talking about was gastritis. And then she kept getting worse.

Stomach motility disorders aren’t just a “bad case of gas.” Irritable bowel syndrome is one of the most common of the motility disorders, and even that isn’t severe gas. Stomach motility disorders mean that the stomach is no longer functioning problem. And while some motility disorders like IBS might respond well to medications like Nexium, Gastroparesis does not. Although medication may alleviate some of the symptoms in some cases, people like my mom can no longer live the lifestyle you and I take for granted. They can’t eat after four in the afternoon, unless they want to spend the entire night awake, and pacing. Many can’t eat any kind of meat or seafood, as the protein makes them ill. They can’t eat anything with spices, cooked with oil or butter, or drink anything caffeinated, alcoholic, or carbonated. They can’t eat vegetables or fruit, because the acidity and the complex carbohydrates shut down their digestive system completely. I remember one time my mother somehow accidentally ate a sliver of an onion, and spent the next six hours in crippling pain. As my mother’s disease has progressed, there is less and less of what she and my aunt can eat: they are now reduced to soft foods, low fat, bland foods (and not yogurt or ice cream; the cultures and high fat and sugar make digestion impossible.) My mother’s diet revolves around eggs, soft, plain bread, and low fat milk.

To add to the harmful effects of a non-nutritional diet, they also can’t eat a healthy amount of food. It takes them four times the amount of a normal person to complete digestion. If they eat too much, they feel like they have a ball of cement in their stomach. My mom and her sister are wasting away.

My aunt is at a more advanced phase of the disease. Her daily food intake is one egg, one piece of bread, one slice of non fat cheese, and a glass of skim milk- even this makes her feel ill all the time. She has dropped from 135 pounds to 92 pounds, and is continuing to lose. The doctors tried have her drink health shakes like Ensure, but these made her feel terrible. No medications have worked for her. Standard acidity reducing drugs like Nexium do little. She has tried a drug not even available in the United States (at the whopping cost of $300/month, not covered by her insurance,) and it did nothing. She is too weak to leave the house now, except for her doctor’s appointments. These appointments usually serve no purpose: no advances are made, and the testing with medications leaves her feeling depleted, sick, and in low spirits.

When people with Gastroparesis reach the crosswords my aunt is nearing, there are only a few options. One is to be placed on a feeding tube for the rest of her life. She would be fed a liquid diet through a tube surgically inserted into her stomach for the next thirty or so years. This would do the bare minimum: it would save her from starvation, which is becoming a real threat.

It would put her at peril of deadly infections, however, as feeding tubes are prone to. It would also decrease her quality of life, as she would be denied ever eating real food again, and would be stuck with this plastic tube for the remainder of her years.

Her insurance, Blue Cross, will pay for the feeding tube. What it won’t pay for is the thing that might actually have the potential to both save her life, and help make it relatively normal. Doctors have had a great deal of success alleviating Gastroparesis with the help of a stomach pace maker, known as the “Enterra Device.” (It’s producing company, Medtronic, made the first heart pace maker.) The Enterra device works with electric sensory therapy to regulate the stomach so that it will resume digestion. The device is FDA approved. Temple University in Philadelphia had installed many of these in individuals: Ã?¾ of those treated came out with successful results.

But according to Blue Cross, the science surrounding stomach pace makers in “experimental” (despite the FDA approval.) While many insurance companies will cover it, Blue Cross will not, although the ultimate decision seems case by case, often depending on the state that you live in. (A man living in New York was preapproved; a 17 year old girl in Texas on death’s door couldn’t get a penny from Blue Cross.) Despite the fact that all of my aunt’s doctors recommend this over the feeding tube, Blue Cross has denied her claim, meaning that she will need to come up with over $40,000 out of her pocket if she wants any chance at a normal life. Her insurance agent actually told her to try and “negotiate” with the doctor, whatever that means – surgery is not like someone contracting to build your roof. It isn’t like a flee market. Even if a doctor were to do the surgery for free, which would never happen, the device itself costs over $16,000. Blue Cross won’t even pay her hospitalization fees, which seems like the very least they could do. She has been paying her insurance dues every month for the last thirty years, in the good faith that it would all be worth it if something bad should happen. The moral of the story? Don’t get a rare disease in this country, because in addition to your health hazards, you will get a heap of financial ones.

But is gastroparesis even that rare? Stomach motility disorders affects millions of people in this country- maybe it is the lack of public knowledge and the amount of misdiagnosing that keeps advances from being made in this field. It is really kind of shocking for how long my aunt and mother were misdiagnosed by gastro-internists who really donÃ?¯Ã?¿Ã?½t know how to treat motility disorders- they were diagnosed with IBS, GERD, Acid reflux disease, and others, before a series of tests done at only one clinic in southern California diagnosed my aunt for certain (not pleasant tests, either.) Most of the testing was not covered by insurance. Almost all of the money that she’s spent on doctors during the last couple of years has been pointless: most gastro-internists don’t know too much about motility disorders, and deciphering the symptoms is difficult. Only by seeing a motility specialist was my aunt even able to tell for certain what she is dealing with.

So if you, or someone you love, is experiencing digestive problems, you might want to check out the motility disorder sites on the web – Some symptoms would be indigestion, early feeling of fullness, pain when digesting certain foods, or when you eat a larger amount. You might display resistance to acid relieving medication (because the problem isn’t acid reflux disease.) Some people experience vomiting, and if you have diabetes, or have ever had mono or lupus, definitely consider checking with a specialist, as they have been linked with motility problems. Still, other people just feel ill one day, out of nowhere, and people of all ages are affected. Your best option if you do have a motility disease like gastro paresis is getting yourself into a clinical research study, where some of your treatment might be paid for.

Sometimes you have to help diagnose yourself when your dealing with something like this, especially since there are only a handful of motility specialists in the entire country. It could save you a lot of time and frustration with doctors that, unfortunately, don’t know enough about this area, but are expected to treat it. And you’re going to need that money, when your insurance company doesn’t come through to help you at all.

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