This story recounts the experience of one person who is receiving Enterra™ Therapy (gastric electrical stimulation). Medtronic invited her to share her story candidly. Please bear in mind that the experiences are specific to this particular person. Not everyone who receives Enterra Therapy will receive the same results as the person in this story.
Arlene always prided herself on taking good care of her health. She visited the doctor regularly, exercised regularly, and ate healthy food. So when she started having troubling symptoms that affected her digestion, she “knew there was something going on.”
Her stomach would swell every time she ate. Eventually Arlene lost all enjoyment in eating and ate only to stay alive. Just a bite or two of a sandwich and a couple of chips made her feel like she had consumed a bowling ball.
When Arlene wasn’t experiencing nausea or a lack of appetite, she was vomiting up to a dozen times a day. Her weight plummeted from 108 to 82 pounds.
Mapping out the location of the nearest bathroom became a necessity, but more often she would just stay indoors. “It was easier to stay inside and not have to explain to anyone what was wrong with me.”
Irritable bowel syndrome, diverticulitis, and pregnancy (an impossibility, since she had undergone a tubal ligation and was not in a relationship) were among the earliest theories proffered by medical personnel. Her friends, who eventually drifted away from her, and her estranged family members thought she had an eating disorder or that her problems were all in her head. In the absence of a support network, she relied on volunteerism, her faith, and her close relationships with her primary doctors to pull her through.
Medication was not successful at managing Arlene’s symptoms. Without clear answers to explain her condition, her doctors tried the gastric emptying test, which is typically given to diabetics. From those results they determined she had gastroparesis* of idiopathic origin, a condition characterized by chronic nausea and vomiting.
The diagnosis reduced Arlene to tears – not out of fear or frustration, as her doctors initially thought, but out of joy and relief that she finally had a name for what was wrong with her, even if the cause was unknown.
Using research techniques she learned during her previous career as a private investigator, Arlene perused the Web for information about gastroparesis. When doctors discussed placing a gastric electrical stimulation system, she read up on that, too.
Her doctor began talking with her about gastric electrical stimulation in spring 2009. For the next 6 months she was prescribed medication that provided some symptom relief, but was not successful in alleviating her major symptoms and severe pain. She was implanted with the Enterra Therapy system shortly before Christmas, “which was the best present ever,” she says.
She spent one night in the hospital, and experienced the usual pain that accompanies surgery. Her torso muscles, in particular, were a significant source of discomfort, especially near the implant incision site. Pain medications didn’t help at first, but prayer, she said, helped her find peace.
Two days after surgery, Arlene’s appetite returned with a vengeance. She craved a steak, a baked potato, salad, tea, and peach cobbler. However, she had to ease back into eating certain foods again.
Thankful of her new lease on life, Arlene hand delivered thank-you letters to everyone she could think of who was involved with treating her condition.
While the effectiveness of gastric electrical stimulation has not been clinically proven and results differ for each patient, Arlene’s gastroparesis symptoms have been alleviated since she began receiving Enterra Therapy. Her occasional nausea is relieved when her doctor adjusts the programming for her Enterra neurostimulator.
Before gastric electrical stimulation, Arlene was afraid to yawn or burp because she would have abdominal pain – now she can do both.
In addition to regaining her energy and enthusiasm, Arlene has gained back weight – mostly muscle as a result of rigorous exercise. She appears healthy again. “I don’t look like I was ever sick.”
Since her recovery, Arlene has spent much of her time connecting with others living with gastroparesis. She shares with them many of her homemade recipes and meal plans, all of which emphasize small portions, flavor, and balanced nutrition.
Actively looking for work since being laid off before her illness, Arlene hopes to get involved with gastroparesis awareness and communications. With the help of a ghostwriter, she is writing a book about her experience. “It’s a chance to spread the word, and to say I have a new gift of life.”
Arlene didn’t experience any complications with her surgery. However, some people do experience surgical complications or side effects of the therapy.
Surgical complications are possible and may include infection, bleeding, bruising, and pain at the implant site. Once implanted, the system may become infected, devices may move or wear through the skin, the lead may perforate the stomach, the lead may entangle with or obstruct the bowel, irritation/inflammation over implant site may occur. The therapy system could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return and some can be life-threatening.
For a list of adverse events that have been associated with the therapy, please refer to Important Safety Information.
*Humanitarian Device: The Enterra Therapy system for gastric electrical stimulation is authorized by Federal law for use in treatment of chronic intractable (drug refractory) nausea and vomiting secondary to gastroparesis of diabetic or idiopathic etiology. The effectiveness of this device for this use has not been demonstrated. What does this mean?
This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.