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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.
As someone who has had type 1 diabetes since age 6, Molly was always diligent about monitoring the glucose levels in her urine and taking insulin.
Like many people with type 1 diabetes, Molly had glucose levels that fluctuated wildly from high to low, but beginning in her 20s her glucose levels began to dip dangerously low, especially in the middle of the night. These episodes often resulted in hospital admissions, and left her wondering what was wrong.
“What I didn’t know was that my dinner wasn’t digesting at all,” she says.
Doctors initially speculated that Molly had bezoars (tightly packed undigested material in the stomach), but eventually they came to the conclusion that she had gastroparesis of diabetic origin. She was put on a medication to manage her symptoms, but gradually its effectiveness wore off and her health deteriorated.
Molly tried to ignore many of her symptoms over the next decade, but soon they became unavoidable. During a car trip she threw up 70 times. Over the course of the next 6 months she vomited 20 to 30 times a day, and spent weeks – sometimes months – in the hospital for medical tests and treatments.
At home, Molly rarely had the energy to do housework or pursue her hobbies. She would lie exhausted most of the day, getting up shortly before her family returned home so they wouldn‘t needlessly worry about her.
Previously an exercise devotee, Molly became disheartened about the way she looked and felt. “I’m not heavy, but the sensation of being full made me feel fat,” she says. “I hated my insides and felt really ugly all the time. That’s hard to get over, especially for a woman.” Also, all of the vomiting discoloured and wore away the enamel on her teeth.
The medications doctors prescribed were not successful in managing Molly’s symptoms. One did little to reduce her vomiting, and made her tired; another worked well, but was eventually taken off the market.
Molly drank nutrition supplements for basic nourishment, but rarely kept them down. Eventually doctors recommended total parental nutrition (TPN) and feeding tubes, the latter of which her insurance company did not want to cover because it considered them to be a method for food conveyance, not medical devices. For 5 years she didn’t eat by mouth; and had to stop exercising to reserve the few calories she was able to consume.
Not being able to eat normally took a toll on Molly’s social life. She missed going out for coffee or lunch with her friends. “There’s such a culture around it. I missed that.” Holidays and picnics were especially difficult, and her young son would wonder aloud why she wouldn’t eat like everyone else. Nevertheless, every evening Molly insisted that she, her son and her husband sit together at the dinner table to eat.
Molly found particular irony in her husband’s profession as a top food salesman. While accompanying him on a business trip, she avoided awkwardness at a dinner party by joining the band to play the tambourine.
“It gave me something to do while the others ate,” she says.
At one point doctors nearly gave up on finding a treatment that would let Molly return to a normal, active life. Then, one of her doctors suggested gastric electrical stimulation.
Molly was eager to try it. “I was at my wit’s end,” she says. “I was so desperate because I wanted to be a mother to my son, and I just wanted to be home for good.”
Molly started out on soup, and gradually progressed to solid foods. “Now I finally get to eat everything, which is amazing,” she says. “Without this system, I would have been done for.”
Molly has had to replace the battery in her device once so far, and she occasionally needs to visit her doctor to have the programming adjusted. Recently her device was moved from a pouch near her stomach to a more secure location under her breast muscle.
While the effectiveness of gastric electrical stimulation has not been clinically proven and results vary for each patient, it has made a difference for Molly. With the exception of some lingering diabetes-related issues, Molly has returned to a normal life. She enjoys long walks, and keeping active has helped her self-image. She relishes the extra time and energy she can spend with her son and her husband, who remained her constant source of help and support.
Molly hopes to resume the motivational speeches about living with diabetes she used to give to schools and medical groups – this time adding reflections of her experience with gastroparesis.
Molly experienced infections as the result of her surgery, and some people experience other 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 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.
For a list of adverse events that have been associated with the therapy, please refer to Important Safety Information.
The Enterra™ Therapy system for gastric electrical stimulation is authorised 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.
This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.