living with gastroparesis can mean your 'stomach hurts like hell'
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vanessa mann has learned to cope with the day-to-day challenges of gastroparesis. she's also become vegan to help with her digestion.
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vanessa mann was a child model and motivational speaker from a young age. the toronto woman, 43, was born with cerebral palsy, a neurological disorder that has impacted her posture and mobility. she’s always been comfortable talking about her lived experience and the importance of accessibility for people like herself who rely on wheelchairs and other devices.
but then something happened that was even more challenging for her health and her livelihood—something that people, including most doctors, don’t know about or understand. it’s been a rough road for her for more than a decade.
stomach muscles are paralyzed without explanation
she has gastroparesis, a condition where the muscles in the stomach don’t move food as they should for it to be digested. so, it’s delayed gastric emptying, often with no explanation or cause. her condition is diagnosed as severe gastroparesis.
“when i tell someone about it, if they’ve never heard of it, they’re like, ‘well that’s just a stomachache.’ but i might be feeling really horrible,” she says, describing the difficulty of not knowing when symptoms will flare up.
“really horrible” is an understatement, she admits.
severe gastroparesis can mean uncontrollable vomiting
some days, she has uncontrollable vomiting where she can’t keep anything down.
“i’m not able to keep any of my food in either way, going to the bathroom multiple times a day,” she explains. “i’m malabsorbing everything i eat, and because there’s a 76 per cent delay, i’ve now figured out that anything that happens at which end, whichever way—sorry to get graphic—is literally from three days before.”
even with medication to increase stomach muscle contractions and improve digestion, her severe condition means it’s hard for her to relax and not think about it. there’s no cure and no way out of the fatigue and nausea. still, she’s strong-willed and determined to live fully.
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“you can’t lose the joy in life. there is joy to be found in all stages of the journey, even when it’s gritty.”
vanessa wants others to know what gastroparesis feels like and to push for help if they’re concerned about themselves or a loved one. she launched her facebook page girl with guts to tell her story and support others.
her stomach issues began in her early 30s, going from mild upset to unrelenting pain.
“i literally remember one night i had the worst abdominal pain come out of nowhere, and i was crawling on the ground. i would go to the bathroom. i’m disabled, so i would crawl from my bedroom to the bathroom and throw up. i called my parents and said, ‘i don’t know what’s going on. i just need you to know.’ i was terrified.”
vanessa lives on her own with the help of personal support workers and called an ambulance to get to emergency. she had uncontrollable vomiting and was given drugs to stop it, but no further tests were performed to find out what was wrong.
er visits, surgery with no solution
“they patched me up and they sent me home.” sadly, the same scenario happened three weeks in a row. during the fourth late-night episode, she asked the paramedics to take her to a different hospital in the city, where she was told she had a problem with her gallbladder (after a long overnight lying on a gurney waiting for the next steps). she was sent home with a plan to see her family doctor and discuss the hospital report.
her gp sent her to a surgeon who recommended she have her gallbladder removed because it could rupture, which would be fatal. vanessa went ahead with the surgery a few weeks later, but had to remain in the hospital for 12 days following because she couldn’t stop vomiting. no one could explain it to her, except to say it could be a reaction to the anesthetic and her body had been through a lot.
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when she returned home, she couldn’t go back to her work in talent recruitment because her symptoms were still flaring up.
“i was going through stuff that you couldn’t leave the house.”
with nothing solved, she went back to her doctor, who suggested a fibre supplement. she carried on, but then started feeling bloated and noticed her pants no longer fitting. her doctor then suggested more healthy eating and exercise, which she embraced, but didn’t work. in fact, she gained inches and felt even more bloated. typically, people with gastroparesis experience weight loss.
“my stomach hurt like hell.”
a friend saw her social posts about the healthy meals she was eating and wrote, “that salad looks amazing, but have you heard of gastroparesis? i think you might have it based on what you’ve been going through.”
that supportive friend sparked an investigation into vanessa’s health that turned into several years of seeing different gastroenterologists—physicians who specialize in the gastrointestinal tract and related organs. but gastroparesis is difficult to diagnose because symptoms like stomach pain and acid reflux can be attributed to something else. most cases of gastroparesis (more than one-third) are idiopathic (the cause is unknown). other common causes are diabetes and post-gastric surgery, according to the canadian digestive health foundation.
finally, she got the diagnosis, but felt at a loss because of the lack of resources and options for treatment. also, an endoscopy exploratory scope procedure didn’t detect anything, and the two-hour gastric emptying test, in which a patient eats eggs and toast with a tracer to illuminate what’s happening in the stomach, came out normal. later on, another gastroenterologist performed the more extensive four-hour gastric emptying test that revealed she had 76 per cent of the meal sitting in her stomach undigested.
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“i have cp (cerebral palsy), and cp is not curable, but i’ve grown up with cp my entire life, so i’ve learned to adapt. i know what to expect. but with gastroparesis, there’s not a lot of information about it. and literally i was like, i don’t know, i was devastated.”
she’s learned to cope out of necessity and is thankful the medication she takes three times a day continues to work. not everyone responds to drug therapy.
“the medication stopped me from vomiting every day. if i don’t take those pills, i vomit. it’s an antiemetic, which means it stops me from throwing up, and it literally starts to move the stuff through the stomach, so it does all those things. if i don’t take it, my stomach doesn’t move.”
one fear is the drug side effect of heart issues with long-term use, so every day is “a gamble.”
advocacy and coping with a life-changing diagnosis
her symptoms fluctuate, and she’s still searching for a job opportunity that could be flexible for her to manage her flare-ups along with work responsibilities.
“it’s not all sunshine and rainbows. sometimes getting through it means i got through it, and not that i got the prize at the end. i got through it. i went to the interview,” she says of an in-person interview that didn’t go well because of her symptoms. “i showed up. i gave it my all. that’s what matters, because if i focus on all the rest of it, i’m going to be beating myself up for stuff i can’t control.”
some people with gastroparesis have a feeding tube to be nourished, but vanessa has had success becoming vegan (she can’t digest any meats or lactose and simply ran out of choices).
what’s most important right now is trying to help others and create awareness.
“i want to see more people understand what it’s about. i want to see more recognition and more treatment options,” she says, emphasizing the need for public understanding.
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“if you said to somebody, ‘i can’t run a marathon right now because i’m not feeling good because i just completed chemotherapy,’ people would get it. but if you say, ‘i can’t do that because i haven’t had food digest in a couple of days people go, ‘why aren’t you exercising? why aren’t you doing this? why aren’t you doing yoga? why aren’t you?’ i think people need to understand how life-changing it can be.”
for more information on gastroparesis, visit the canadian digestive health foundation.
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