How one bite of food can lead to death in this rare disease

Melissa VanHouten is a wife and mother who holds a Master's degree in political science. A college instructor and corporate trainer, she woke one cold February morning in 2014 to a very different life. Without warning nor explanation, she suddenly couldn't tolerate any food or liquid. She was rushed to the emergency room, hospitalized for severe abdominal pain and vomiting, and over the next week put through a battery of tests.

The diagnosis: A rare yet devastating disease called gastroparesis.

The term literally means paralyzed stomach.

Melissa was discharged from the hospital with very little information regarding her condition and told to follow up with a gastroenterologist in six weeks. She was given no detailed diet plan, no medications to try, no real treatment plan, and no idea what to expect.

Riddled with many challenges, gastroparesis is often mistaken for heartburn and other common gastric ailments. Patients get passed from one stymied doctor to the next, even to psychiatrists, while the disease continues to starve its victim—sometimes to death.

Melissa considers herself lucky in that doctors discovered it rather quickly. Megan Boggs, age 38, has a different story. “I woke up with sharp pains in my stomach and became nauseated. For the next six weeks, I threw up everything I ate and drank. This was the beginning of the end of my life. I clung to the toilet like a mother holding her baby, begging God for it to just end. Doctor after doctor, hospital after hospital, no one had any answers. Only after I had endured what seemed to be every test known to mankind was I finally diagnosed with gastroparesis.”

Jessica Spence, age 26, waited years for a diagnosis. “I started to throw up every morning. After a few months the nausea subsided but then started all over again. This cycle continued for a decade and then symptoms became severe. Pain and nausea became constant.” Jessica’s symptoms started at age 14. She was passed from one specialist to the next. “I saw a fourth gastroenterologist last year who finally diagnosed gastroparesis. I was so happy! I had been fighting to prove I wasn’t crazy for eleven years.”

One of the many challenges of living with such a rare disease is the limited information, making patients wary about continually asking for help. “Most of my doctors don’t know what to do with me or how to treat me. They know my diagnosis, but that’s all. They have no other answers. We’ve tried some medications to help with motility but none of them have worked,” says Joli Atkins, who was diagnosed at age 36.

Others are even less hopeful. “Doctors don’t know what to do. They do not know how to treat patients. I get angry, scared and confused,” says Megan Boggs, who was diagnosed earlier this year.

The threat of malnutrition is constant. Some rely on feeding tubes for nourishment. Trisha Bundy, age 39, had a feeding tube placed in 2013. It pumps formula into her body throughout the day, requiring her to wear it as a backpack or push it around on an IV pole. She blogs about her health at GastroparesisCrusader.weebly.com. “I have found writing to be very therapeutic for me as well as an outlet to hopefully help others.”

Lisa Colandrea, age 44, also lives with a feeding tube. “Without this feeding tube, I would not be able to sustain any type of nutrition.”

The disease can also wreak havoc on careers, relationships, and intimacy. Perhaps hardest to grapple with is the impact upon the children. “My daughter has faced it with grace and wisdom beyond her years. I know it must break her heart to give up the many little things other children take for granted. She takes on extra chores and responsibilities at home that I do not believe any child should. She worries so much about my future and about what will happen to her if I am no longer able to function or if I die,” says Melissa VanHouten.

Well-meaning family and friends try to help by offering unsolicited—sometimes dangerous—advice. “If you eat more, you would have more energy.”

“You should eat healthier; more vegetables and beans may help.”

Because the stomach is inefficient, food and liquid sit in the stomach like a rotting brick. This leads to severe pain, nausea, vomiting, explosive diarrhea, malnourishment, tube feedings to bypass the stomach, and lack of energy from inadequate intake.

It also leads to death.

Less than 200,000 cases are diagnosed in the U.S. each year, yet the International Foundation for Functional Gastrointestinal Disorders estimates up to 5 million people in the United States have the disease.

Melissa VanHouten, founder of www.curegp.com, posts a green candle on Facebook every time the disease claims a life. “The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships. These are people who gave it their all and inspire us to continue to wage war against the cruel illness that ravages our bodies.”

One of the biggest debates among medical professionals is the disagreement about pain. Gastroparesis-associated pain has been fairly well recognized and documented by motility experts, and been noted as one of the concerns in the Guidelines for the Management of Gastroparesis, yet the myth remains among non-experts that there is no pain with gastroparesis.

“Whenever I eat, pain soon follows. My stomach feels like it is on fire and bloated. Then the nausea comes, and then the pain gets worse,” says Tammy Downs, age 59.

The pain that results from eating is difficult, but the larger burden for some is the mental and emotional pain that stems from the disease. “I feel guilty when I eat because I know it will lead to pain, and guilty when I do not because this leads to fatigue and long-term malnutrition. Food is a poison, but it is also life-giving. How does one make these decisions?” shares Melissa VanHouten.

“Gastroparesis thrives on mental illness. Even the slightest bit of stress triggers a flare. I would give myself panic attacks because I was terrified of food and the pain it caused. This fed my depression,” says Taylor Schmitz, age 25.

Skye Falcon, age 36, says, “Keeping the mental aspects of chronic illnesses in check is complex. There are so many levels to deal with, both within the illness itself and within our own human need. Being able to deal with sudden shifts, worsening and constantly morphing issues is a huge mental challenge.”

Through the daily pain, scarce information, and uncertainty about what lies ahead, gastroparesis sufferers find hope by banding together on social media. “The groups on Facebook are wonderful because we all get each other, and during times of struggle the entire community rallies around those who are having a rough time,” says Robin McNamara, age 59.

“I have a huge support system in groups on Facebook. The groups keep me going ninety percent of the time,” says Tammy Pittman, age 37.

“Being able to chat to someone who really understands, even if it’s virtual, has helped,” says Samantha Anderson, age 31.

Many have become advocates to help raise awareness. “Educating is one of the most invaluable tools that we have control over. The more I know about nutrition, digestion, and treatments available, the better advocate I am. I wouldn’t be where I am today if I hadn’t done all my own research and took a chance reaching out to doctors who specialize in gastroparesis. I may not be cured but I know what is causing my symptoms and I’ve already started the war to win,” says Nicole Starzynski, age 34.

And yet, in the face of living with a rare, life-threatening disease, most cling to hope to keep them going.

Perhaps Jennifer Zubik, 34, says it best: “Hope gets me through each day of my life, as I run with one hand in my husband’s and the other in my daughter’s.”

Read their stories in Real Life Diaries: Living with Gastroparesis. Join them on on Facebook. Learn more at www.curegp.com.

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