Advice From One Woman with Gastroparesis: Be Your Biggest Advocate

The International Foundation for Functional Gastrointestinal Disorders website has a section where patients can share their story. Hollie’s story is one of the featured stories. Her story starts in 2009 (Original story posted in February 2016). It was during that spring that she first began to have issues with feeling nauseated and having indigestion. She went to her doctor who was convinced it was most likely just an ulcer. But the discomfort did not stop; in fact, it grew. Hollie, a wife and mother, began to endure chest pain and pressure, heartburn, dizziness, and worsening nausea. No medicine or treatment helped the symptoms and over the next 6 months, she went back to her doctor 3 times to figure out what was wrong with her.

She was initially given a number of diagnoses that turned out to be wrong and was put on medicine that had no effect.

Hollie’s world quickly flipped upside down at this point. Hollie considers herself a true foodie and stood at just 150 pounds before her stomach issues began, but within 6 months she had dropped down to 100 pounds and her diet consisted of just cereal and toast. In her recount of her diagnosis and the past few years, Hollie can say that there is not one aspect of her life that is the same as before she was correctly diagnosed.

Hollie is adamant about patients doing their on research and taking control of their health by switching doctors if they need to, not being afraid to ask questions, and staying at the forefront of their doctor’s orders.

She did this herself by changing her primary care doctors and went to 2 GI practices to find answers. It took an additional year, two trips to the ER, several more procedures and medications, and countless conversations with her insurance company. She still spent over $8,000 to find her correct diagnosis. She finally requested a gastric emptying study and afterwards she was correctly diagnosed with gastroparesis.

Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying.

Hollie not only had to deal with the physical battle of gastroparesis, but a psychological one as well. At 100 pounds at the time of her diagnosis, she was dealing with chronic dizziness and nausea and there were rumors in her small town that she had cancer or an eating disorder. Hollie found herself emotionally and physically drained, but she has persevered.

Hollie has now tried 12 prescriptions meds, some of which have not even been approved by the FDA. Many of them are very hard to even get in the US.  Most important, Hollie has learned how vital it is to be her own advocate and do her own research when it comes to her illness.

 It was Hollie, after all, who demanded the gastric emptying study and who had to be proactive and switch doctors to one that better suited her and provided the best care.

Despite switching doctors, Hollie has realized with much trial and error that is it extremely hard to find a practitioner who has actual experience with treating her disorder. In fact, after her initial diagnosis, her doctor handed her a small list of foods she may want to avoid, and told her that that while her condition would not kill her, some days she would want to die. This made an impact on Hollie, who found the comment to be devoid of good practical or medical advice and quite insensitive.

Her gastroparesis has completely changed every facet of her life-from her marriage, to her relationships with her kids, to even planning events and outings around how her stomach may feel that day.

She has been able to gain about 7 pounds, at the time of her writing this article, and has kept the weight on well. Hollie continues to read, study, and research to help manage her condition so that she can live the most full and healthy life possible.

Read Hollie’s own account of her story here.

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