Ronetta: Finding Strength Within the Turmoil of Gastroparesis
Ronetta was 37 years old when, in the spring of 2015, her stomach just seemed to shut down. She had recently undergone a medical procedure—unrelated to her stomach—and was expecting to feel a bit off. But after several weeks she continued to be held captive by constant nausea and relentless vomiting. Soon she was unable to eat meals without getting sick. “It was ongoing,” she says. “I was nauseous 100 percent of the time, vomiting 100 percent of the time…. No relief at all.”
The inability to nourish her body took an enormous toll on Ronetta, a successful owner of a mental health counseling business and, with her husband, a parent to two young children. She began to lose weight and energy at an alarming pace. To make the matter worse, her doctors struggled to find a cause. “No one knew what was wrong with me,” she says. Eventually her gastroenterologist discovered that food wasn’t moving down and out of her stomach properly after she ate. She was given a few different medications to try, including one that could help food move through her stomach. But they didn’t work, or they produced dangerous side effects. By then it had been 8 months since she had started experiencing the symptoms, and she had lost 100 pounds. “My doctor basically said, ‘I don’t know what else to do,’” she recalls. “And I just kept losing weight, wasting away.”
She was referred to Dr. Kenneth Koch, a gastroenterologist at Wake Forest University, which is a 2-hour drive from her home. It was Dr. Koch who, after a battery of tests, was finally able to give her a definitive diagnosis: gastroparesis, a chronic, relatively uncommon, and poorly understood disorder that slows or stops the movement of food from the stomach to the small intestine.
Ronetta was relieved to have an answer at last, and soon thereafter she signed up for an NIDDK-sponsored gastroparesis research study. But she then faced another daunting challenge: how to find the strength to cope with such a debilitating disorder. Yet, through the turmoil of constant nausea, vomiting, and pain, Ronetta was resolute: “I’m a fighter,” she says. “And I refuse to let anything beat me.”
Living with Gastroparesis: “It’s Complicated”
Normally, the muscles of the stomach contract to break up food and move it through the gastrointestinal tract. This, along with the release of hormones and enzymes, allows for the digestion of food. But in people with gastroparesis, the stomach muscles stop working normally, causing food either to move too slowly from the stomach to the small intestine or to stop moving altogether. As a result, people with gastroparesis can experience long-term nausea, vomiting, bloating, abdominal pain, and early satiety (the feeling of fullness after just a few bites of food). At the very least, this disorder makes eating a normal-sized meal extremely difficult without getting sick. In extreme cases, it could prevent eating completely. In fact, Ronetta’s gastroparesis is severe enough that at times she needs to take in nourishment through a tube as a substitute for eating—a process called intravenous feeding. In Ronetta’s case, the tube is implanted in her chest.
Ronetta’s bouts of nausea forced her to cut back on time spent at her counseling business. Her long-term clients noticed the changes in her physical appearance as she lost weight. “I could see the fright in their eyes when they would see me at appointments,” she recalls, “because time after time, I’m getting smaller and smaller.” She says several of them tended to feel sorry and anxious for her, which interfered with their counseling sessions. “Their feelings of ‘you don’t deserve this’ became a distraction for them,” she says.
Through the turmoil of constant nausea, vomiting, and pain, Ronetta was resolute: “I’m a ﬁghter,” she says. “And I refuse to let anything beat me.”
While her professional life was upended, the effects on her family were even more heartbreaking. “This is the first time I’ve actually seen my parents age,” she says, adding that her parents haven’t taken a vacation since her symptoms started. Ronetta’s son was only 2 years old when she got sick, and he still approaches his mother’s illness with an innocence that is a testimony to his young age. “He doesn’t remember a well mommy,” she explains. “Now he just prays that God will make Mommy big and strong so that we could get a dog and that Mommy can run and play outside.”
Her daughter, on the other hand, is several years older and can remember when her mother was healthier. Although dancing is her coping mechanism, she would still become worried when Ronetta would go to Wake Forest for treatment, so Ronetta explained to her what gastroparesis was and which procedures she was undertaking. “I decided it would be easier for her to tell her exactly what was going on. I would show her pictures, diagrams, and YouTube videos, if I could find them,” she says. “And she’d feel so much better, knowing exactly what [the doctors] would be doing.”
Still, missing out on precious time with her family has been extremely difficult for Ronetta. “It’s hard to sit back and watch your children grow up, and you can’t be a part of it,” she says. “It’s almost like watching a movie, and you’re in the audience instead of participating.” There are times when she would promise her children that they could all go somewhere together, but then she would suddenly get sick. “In a matter of minutes, something I ate would become a hard ball in my stomach,” she says. “I can’t hardly move because I’m bent over [with pain]. And then, all of a sudden, I’m throwing up...and I have to break their hearts because I can’t go where I said I was going to go.” Those are the horrible moments, she says, adding that she has trained herself to live in the present, instead of exhaustingly trying to make up for lost time after the pain and nausea subside. “All I could do is live in the here and now,” she says.
Ronetta’s friends would desperately try to understand what she was going through, but she has learned that the symptoms can be very difficult to describe. Many people with little or no experience with gastroparesis tend to think, understandably, that the symptoms are similar to that of an upset stomach, like how someone feels after overindulging in a big or overly rich meal. But Ronetta says common indigestion is very mild compared to the unyielding nausea she constantly feels. She doesn’t like invoking pity from others, so she uses a bit of humor when explaining how she lives with the turmoil of gastroparesis. “I stopped saying what it was,” she says. “And I would make a joke out of it. You know how on Facebook, if someone’s relationship is bad, they say ‘It’s complicated’? Well, that’s kind of what my answer is to this. It’s complicated.”
Learning To Cope with Gastroparesis
Getting treatment at Wake Forest during the years following her diagnosis has helped Ronetta to begin managing her gastroparesis. She takes prescription anti-nausea medicines several times a day. “And with that, there’s not a whole lot of vomiting,” she says. “There’s always the nausea, but I’m more functional.” While the medication has eased her symptoms, they never completely went away, and she has sudden, debilitating relapses—or “flares”—that could last several hours. “[The symptoms] would be lying in the background, but would become more prominent when I ate the wrong thing. Or sometimes I wouldn’t know what the wrong thing was—I would have a flare that would render me just helpless…. I can’t move, I can’t eat anything. And that’s how it can be still.”
“Sometimes it doesn’t matter what I eat at all,” Ronetta says. “It could just be one of those days…. And for whatever reason, I will be just doubled over in pain from my stomach.”
About 2 years after the onset of her gastroparesis, she underwent a procedure, called a pyloroplasty, in which the opening between the stomach and the small intestine is surgically widened to allow food to pass through more easily. But the result was somewhat disappointing—she said some symptoms got better, but others got worse. “I had unrealistic expectations,” she says. “I think I had it in my mind that it was going to solve everything, thinking, ‘This is it…. I’m going to go back to a normal life.’” But she still experiences major flares, sometimes out of the blue, and at other times when she strays from the pescatarian diet she has adopted. If she eats something greasy, or even a meat that isn’t lean enough, she gets sick. “Or sometimes it doesn’t matter what I eat at all,” she says. “It could just be one of those days…. And for whatever reason, I will be just doubled over in pain from my stomach.”
In addition to watching which foods she eats, Ronetta has had to be careful about the size of her portions at each meal. “And that’s one of the things that will mess me up—if I eat a larger portion than I should,” she says. “And it may be because I’m simply enjoying what I eat.” It has gotten to the point where, at times, she will avoid eating anything at all, because she will be worried that she will get sick. Not only does this sap her energy, but it also makes her social life difficult. “You don’t want to go to dinner at other people’s houses because you don’t know how sensitive you’re going to be to the food,” she says. Usually people will try to serve her food that she could eat, but they could innocently overlook something that could upset her stomach. “People don’t mean to, but you never know what’s inside their food and what stuff it’s cooked in,” she says. “We’re in the South, so they’ll say, ‘I’ll make green beans.’ And then you look, and there’s this big ham hock in the middle of it.”
Ronetta says that eating out can be difficult, adding that people who don’t know her well “can get really offended when I say I’m coming to something and then I don’t show up, and they have no idea what’s going on with my body.” Not only is it hard for her to eat with people other than family and close friends who have a better understanding of her condition, but the unpredictability of her flares also makes it difficult to leave home in the first place. “I could be dressed and ready to go, and then all of sudden, I get sick, and I’m lying on the bed, and my husband is taking off my shoes,” she says.
With such debilitating episodes, Ronetta also needed to adjust her life as a professional counselor and business owner. “Gastroparesis taught me more about business,” she says. “I realized that too much about my business was in my head and not on paper,” which made it harder to train someone else how to do things. She also convinced herself to delegate more to others—something that she wasn’t used to doing. “I had a lot of pride, which was to my detriment,” she says. “I’ve always been so ambitious and such a go-getter, so it was really hard to hand the reins over and say, ‘I can’t do this anymore.’” She was also able to use some of her own counseling training—including anxiety-relieving techniques—to help her cope with the physical and mental pain. But she says the best technique she used was seeking counseling for herself. “I needed to take the time to process all the feelings that were going on,” she says, “and all the physical changes, the changes with my business, the changes with my marriage, the changes with my children, and with all of my social relationships.”
“I’ve always been so ambitious and such a go-getter, so it was really hard to hand the reins over and say, ‘I can’t do this anymore.’”
Hope in Research
Like most people with gastroparesis, Ronetta was diagnosed with an “idiopathic” form of the disorder, which means that the cause is unknown. This presents a major obstacle for treatment—if doctors don’t know what causes it, it’s extremely difficult to develop therapies to fix it. Current treatments, which aren’t always successful, include ways to coax the stomach to empty faster, such as medications that make the stomach muscles contract, or surgery or injections that help to open the valve between the stomach and small intestine. Other medications may focus on treating symptoms like nausea and abdominal pain.
There is still much to learn about gastroparesis, including why it seems to affect women more often than men. But progress toward understanding the disorder has been slow, partly because researchers have struggled to recruit enough participants to conduct effective clinical trials. Also, scientists at a single research center have a limited number of relevant clinical and research techniques available to them.
To try to overcome these obstacles, the NIDDK established the Gastroparesis Clinical Research Consortium to accelerate research on the causes and progression of gastroparesis and to explore new approaches to treat the disorder. The Consortium is made up of several clinical research centers across the country, including at Wake Forest where Ronetta receives treatment. This network of clinical centers allows researchers to share techniques and tools and to recruit a broad spectrum of patients from many regions to participate in large clinical studies.
After Ronetta was diagnosed with gastroparesis, she agreed to participate in the Gastroparesis Registry, one of the most important undertakings of the Consortium. Established in 2007, the initial goal of the Gastroparesis Registry was to enroll a sufficiently large number of patients to clarify the clinical features of the condition, which tend to be variable. Over several years, the Consortium gathered detailed test results and samples from hundreds of patients, assembling the largest clinical and physiologic data repository for gastroparesis in the world. The information collected in the Gastroparesis Registry is used to link symptoms, severity, and treatment responses to patient characteristics—an extremely important step toward understanding the disorder.
Building upon its success, the Gastroparesis Registry was expanded in 2012 to recruit more participants, and researchers are now using its rich dataset to study the causes, progression, and outcomes of gastroparesis. Scientists can also access the Gastroparesis Registry when recruiting people for clinical trials, which could benefit registry participants who are eager to try new therapies. Ronetta’s motivation for joining the Gastroparesis Registry was altruistic: “Anything I can do to help someone else,” she says. “It helps bring meaning to all of this.”
A Network of Support
Scientists are continuing to explore new therapies as they learn more about gastroparesis. In the meantime, Ronetta still experiences harsh and unpredictable flares, but the medications have helped to make them somewhat more tolerable and less frequent. She still wears the feeding tube embedded in her chest—she needs to be prepared to take in nourishing fluids, particularly in the warmer months when she is more prone to dehydration.
Ronetta’s motivation for joining the Gastroparesis Registry was altruistic: “Anything I can do to help someone else,” she says. “It helps bring meaning to all of this.”
She feels lucky to have a very close support network in her family. She says her daughter tries to keep an overly watchful eye on her: “She’ll say, ‘Mommy, are you supposed to be doing that? Mommy, is [your feeding tube] supposed to be connected? Mommy, I haven’t seen you do your fluid.’” Ronetta’s husband, whom she calls “amazing,” took a second job when she was forced to cut down on the number of clients she sees. She tries to make sure he doesn’t become overwhelmed himself, “because he literally has to bring home the bacon, fry it up in a pan, and feed it to the kids,” she says.
Despite the severe disruptions to her personal and professional lives, Ronetta perseveres. “I fight to win,” she says, citing her desire to be healthy so she can be involved in her children’s lives. She has a keen awareness of her inner strength (“I feel like I’m a ninja warrior,” she says), and it gives her hope. “The days I can’t control, I can’t control,” she says. “But either way, if I’m vomiting, if I’m doubled over in pain, I tell my kids: ‘It’s OK, the doctors are going to make Mommy better. Keep praying.’ And so I fight on.”
This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.