'I woke up one morning unable to eat - rare condition left my stomach paralysed'
A student who woke up and found herself suddenly unable to eat lost almost half her body weight in six months as doctors struggled to discover the cause. Shannon Dunbar-Dawe, 30, says she has never felt well since that night in May 2022.
The "massive foodie" told how she suddenly began feeling sick and bloated, initially blaming drinking too much coffee. However, as she didn't improve but was instead left in severe pain and unable to eat anything more than a few digestive biscuits without severe stomach swelling.
Despite being a healthy size 10-12 when the problem started she lost nearly half her body weight in just six months with doctors believing she was suffering from psychological issues. It took more than a year, and the "worst two weeks" of her life being force-fed in hospital, that she finally got answers after seeking help from a private doctor.
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She learned she had gastroparesis, a rare disorder that slows down digestion as a result of paralysis of stomach nerves and muscles, and for which the cause is often unknown. She now weighs 5.6 stone and relies on a feeding tube, leaving her feeling like a 'shell' of her former self, reports Wales Online.
Her sister Charelle Dunbar-Dawe, 31, has launched a GoFundMe fundraising campaign to raise money for a gastric pacemaker, which could improve Shannon's quality of life. If successful it is also hoped it will one day allow her to eventually remove the feeding tube.
Shannon, from Glasgow, said: "It was really scary. I just woke up one day and never felt well again. It started off with a lot of nausea and feeling really, really full after having even a couple of bites of food. I had pain and this horrible burning in my stomach. I had a lot of bloating as well. I wasn't really sure what was going on. I've had issues with acid reflux before so I thought it might be something to do with that."
She said the pain was directly in her stomach. She said: "Whenever I tried to eat anything the nausea would just be awful my stomach would swell up. I'd look six months pregnant. The swelling was that bad. I could eat literally one bite of food and it would feel like i'd eaten an entire buffet."
Shannon added: "My diet was pretty consistent at the time. I thought maybe I'd had too much coffee. That I'd upset my stomach with excess caffeine or something. But it was a completely new sensation to me so I didn't really have any idea what was going on.
"Before it all started I weighed 64kg. I was a healthy size 10 to 12. I loved my food, I was a massive foodie. I was always stuffing my face. Within six months I had dropped to 40kg."
After struggling with severe pain, Shannon spent 10 days in hospital but was discharged without answers. It meant she had to abandon her accountancy studies, instead spending months "hunched over the toilet" due to constant nausea, resulting in severe weight loss.
Shannon told how she finally went to A&E as the pain was so bad and was given morphine for the pain and acid reducers - neither of which helped - and she was admitted to hospital.
She said: "They initially said they thought I had gastritis, inflammation of the stomach. But they didn't do any tests to have a look down there so they were just going off what information they had. I spent 10 days in the hospital in a short space of time.
"I didn't eat anything the entire time I was in the hospital. It was horrendous. They told me they'd arrange an endoscopy in the coming months and that was it. I was just sent home."
Shannon said she saw her life change completely. "I spent from morning until night in the bathroom hunched over the toilet because I just felt so sick. I would take my laptop to the bathroom and just watch stuff and sit there. That was my life for months. I had to discontinue my studies because I had no brain power from having no food and very limited food intake," she said.
She was referred to a specialist in May 2023 but says she was incorrectly diagnosed with psychiatric problems. She said: "I was basically surviving on two or three digestive biscuits a day and not much else and coffee. It was horrible."
A CT scan failed to reveal the cause leaving doctors looking to something other than a physical cause. Shannon said: "They were like 'you know what, you're a young woman, you have anxiety, this is just anorexia, you're doing this to yourself'.
"In July I ended up in hospital because I couldn't keep anything down, not even liquids. The first thing they did was they sent a psychiatrist in to see me.
"They put me on a mental health hold for two weeks. I was watched 24/7. I couldn't even go to the bathroom in peace. They force-fed me for two solid weeks. They didn't care how sick I was. It was like curries and chilis and things. I can't have milk, I'm lactose intolerant, but they were giving me things with milk and cheese.
"No one would listen to me. I spent two weeks crying my eyes out alone in a hospital room. My sister came to visit a lot. It was honestly the worst two weeks of my life. I cannot even begin to describe how horrendous it was. I lost more weight while I was there.
"By the end of two weeks in order to get out I had to be like 'I accept what you're saying, I will get help please let me go'. After two weeks of absolute hell I managed to get out of the hospital."
Shannon eventually decided to see if a private gastroenterologist had answers. She said: "Within five minutes of meeting me he said 'it sounds like you have gastroparesis.' My natural response was 'what's gastroparesis'. I'd never heard of it, I had no idea. But I read through the symptoms and it just made complete sense.
"I literally cried during the appointment because somebody was finally listening to me. It was just such a relief. There's no cure and treatment options are extremely limited."
Shannon was prescribed with medication to speed her digestion but when that failed to resolve the problem, Shannon underwent surgery to have a feeding tube attached to her stomach for nightly feeds. She said: "The surgery for the feeding tube was excruciating. The most painful thing I've ever gone through in my life.
"It's very strange having a foreign object sticking out of you 24/7. I have the feeding tube surgically placed into my stomach with a tube that goes down into the intestines.
"My feed that I have to run through every night goes to my intestines and completely bypasses the stomach. It still unfortunately comes with issues, nausea, a little bit of bloating, discomfort, acid reflux. It's not a walk in the park.
"Day-to-day for the past year since getting my feeding tubes it's been very quiet. I spend most of my time curled up on the couch in pain feeling sick."
A GoFundMe appeal is trying to raise £50,000 for Shannon to undergo gastric pacemaker surgery to improve emptying of the stomach—treatment that isn't available on the NHS for non-diabetic patients. Shannon said: "If I can get my nausea and vomiting under control that would significantly improve my quality of life.
"I'd be able to gain weight. Being so underweight has just been horrible. I'm exhausted all the time and I don't sleep well. I'm just miserable. I'm a shell of who I used to be, which is hard not only for me but the people around me to see how much things have changed.
"The doctor that I spoke to says he's confident that having the pacemaker fitted would restore some quality of life and I might be able to eat soft foods again and liquids and one day hopefully have my feeding tube removed. Now I'm so underweight that I don't currently qualify for the pacemaker surgery.
"Whereas if this had been done a year and a half ago when I first started having symptoms I was qualified for the surgery straight away and might not have needed to unnecessarily suffer for the past two and a half years. It's going to be the fight of my life trying to desperately gain weight over the next however long it takes to meet our fundraising goal."
Shannon is also hoping to raise awareness of her rare condition to help people get a quicker diagnosis. She said: "Raising awareness is something that is really important to me. There will be so many people out there with my symptoms who might never get an answer because gastroparesis is quite a rare thing.
"The amount of times that I've come across cases of young women being told 'it's all in your head, it's anorexia' and being diagnosed with eating disorders or IBS because they refuse to do proper testing and actually get to the root of why these women are having stomach issues. It's horrendous.
"My advice to anyone who is suffering from ongoing nausea and vomiting and stomach pains is to push for a gastric emptying test because if it comes back negative, great that's something to rule out. If it comes back positive then the earlier you catch symptoms and can intervene the better."
Charelle, Shannon's sister, is running the fundraising effort to help her sister. She said: "It would be the best gift in the entire world to get my sister a better quality of life. I've watched her struggle for so long now.
"It's been two years now of stress and worry and not being able to help her. Just to be able to know that the option to have the pacemaker is there and have it within reach would be a huge load off my mind knowing that she could be the person she used to be.
"I still love her dearly, it's just hard to watch someone you love lose everything about them that makes them who they are. I want to see her getting out there again and having a bit more fun. My main focus in life right now is to get her what she needs. " You can donate to Shannon's fundraiser here.
A spokesperson for NHS Greater Glasgow and Clyde said: "This patient has raised her concerns through our complaints process. Though we are unable to comment on individual patient cases due to confidentiality, we are sorry we were unable to meet her expectations. At all times the patient's concerns were taken seriously by the clinicians involved, and attempts were made to resolve them."