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By Jeannie Counce
Imagine your Gl tract suddenly stopped functioning. That happened to Amanda, who lives with gastroparesis. Diagnosing the problem and landing on an effective treatment is a journey Amanda says she “wouldn’t wish on my worst enemy.”
Amanda began experiencing symptoms of gastroparesis and intestinal paralysis in February 2020. “It was completely random,” she recalls. “l started having problems eating. I could only eat small meals and then I would throw up. I dropped a fair amount of weight, and I was having stomach pains.”
Amanda worked with her primary care physician who recommended a colonoscopy and endoscopy. “This was during the beginning of COVID when the hospitals were overwhelmed and discouraging routine procedures, so it was difficult to coordinate,” she recalls. “In the end, I couldn’t get the required preparation liquids down, so we couldn’t do the tests.”
Eventually, the pain and vomiting got so bad, she went to the emergency room (ER). “They had so much going on with COVID, that they treated me for dehydration and sent me home.” Another trip to the ER produced similar results.
On her third trip to the ER May 2020, Amanda was in so much pain, all she could do was cry. “l was down 20 pounds, my electrolytes were off, I was not well,” she says. “They admitted me and ran a bunch of tests. The gastroenterologist wanted to discharge me, but the hospitalist decided to perform 1 last test—a gastric emptying test.”
Amanda reports that she could scarcely eat the radioactive test food and the entire procedure, in which the patient cannot take medication for nausea or pain, was excruciating. “At 90 minutes my stomach had not emptied at all,” she recalls. “At 4 hours, only of the test food had moved, and at 6 hours, only 25%.” By contrast, in a functional Gl tract, the gastric emptying of solid foods is 100% complete within 4 hours on average.
Although Amanda and her care team now had a diagnosis, the treatment was still unclear. “They wanted to place a gastric pacemaker on my stomach,” she says. “l thought that was drastic, so we tried a botulinum toxin injection in the pyloric sphincter. For a while, I managed with soft food and protein powder.”
Amanda was still losing weight, so she switched physicians, hoping that a specialist would have more insight. “That doctor put me on domperidone, which causes contractions in the stomach,” she recalls. Domperidone is not approved for use in the U.S., so Amanda had to obtain it from a Canadian pharmacy. “Within 2 weeks I developed cardiac side effects from the drug, so I had to stop taking it.” Not long after, she was back in the hospital, malnourished, dehydrated, and experiencing symptoms of intestinal failure. She received another pyloric botulinum toxin injection, which lasted only 3 weeks.
Then, she found a new medical team at a university-based hospital. “At this point, it was August, and I was really sick,” Amanda recalls. “My eyes were sunken, and I looked 7-months pregnant from the bloating.” She was admitted again to receive IV fluids and so her care team could investigate the bloating. This hospital stay was particularly challenging because the medical center was a few hours from her home. “l have 2 high- school-age kids, so my husband was trying to juggle that and make trips to see me. My mom stayed with me when she could, but she had other obligations—it was a balancing act,” she recalls. “Fortunately, we have premium insurance, so I didn’t have to stress out about coverage for all the care I was receiving.”
While in the hospital, her care team placed a nasogastric (NG) tube into her stomach to remove the contents, which Amanda says released a lot of pressure and discomfort from the bloating. “But my colon was full of stool, so they had to get that out—it was horrible,” she says. “Then, they placed an NJ (nasojejunall tube into my small intestine to see if I could tolerate feedings. A few weeks later, they placed my first PEG (percutaneous endoscopic gastrostomyl tube.” Amanda explains that the intestinal paralysis and lack of bowel activity created backups that would eventually dislodge the PEG tubes. “I’ve had several of those,” she quips.
By May of 2021, Amanda’s care team planned to transition to a J (jejunostomy) tube for feeding directly into the small intestine. “During the placement, they hit a nerve bundle which was extremely painful,” she recalls. “They put me on a pain pump and a few days later, inserted a PICC [peripherally inserted central catheter] line for parenteral nutrition. Over the next 2-3 weeks I did really well on PN. All of my belly issues resolved, and my intestines began working again. The best part was the pain was gone.” In July—16 months after her symptoms began—Amanda’s team pulled the PICC and J tube and placed a tunneled central venous access device (CVAD).
“I’m on PN for life,” says Amanda. “It’s not ideal, but it has proven the only thing my body will tolerate. It keeps me out of the hospital, active, and living some type of normal life.” Her insurance company likes her better when she’s on PN too, she jokes. “The first year I was going through this my medical care cost around $640,000. In 2021, after diagnosis and finding the right treatment, it was $140,000.”
Amanda works with a home infusion therapy provider that delivers her PN once a week and a home health provider that comes once a week to do a CVAD dressing change and draw bloodwork. “l found a place of homeostasis,” she says. “l have the right support system. My pharmacist and dietitian take really good care of me—they call every week to check on my progress and my supplies. We’ve built a rapport. And they do a great job of communicating with my doctor and the home care company. I was even able to transfer my care to the home infusion company’s office in Virginia when I went to visit my daughter for a few weeks.”
“My pharmacist and dietitian take really good care of me—they call every week to check on my progress and my supplies. We’ve built a rapport. And they do a great job of communicating with my doctor and the home care company. I was even able to transfer my care to the home infusion company’s office in Virginia when I went to visit my daughter for a few weeks.”
Amanda’s health has improved as well. She began this journey at 160 pounds and dropped to 127. She’s now at 140 pounds with no nutritional deficiencies.
Jeannie Counce is the editorial director of NHIA. You can reach her at Jeannie.Counce@nhia.org