Rachel’s Story – Gastroparesis

"Living with gastroparesis is hard. Many days feel long, lonely, and never-ending. The hardest part is that it’s invisible. To many, I don’t look sick, which makes things feel even more isolating."

Tell us a little about yourself

“I’m Rachel. I’m 26 and from Worcestershire. I work at a local GP practice and try to stay busy, but balancing work, hobbies and life with a chronic illness and tube feeding can be a challenge!

Rachel is smiling, wearing a beige headband with her brown Spaniel. They are outdoors under a clear blue sky.

In between it all, I love spending time with my mischievous Spaniel and caring for my little flock of chickens. The garden is my favourite place to unwind, and one day, I’d love to have a little farm with my partner.”

When did your gastroparesis symptoms begin, and what were they?

“As a child, I had ‘tummy migraines’. I was often out of school with nausea and vomiting that didn’t follow the usual ‘‘bug’ pattern. Meals would come back up (sometimes days later), and no one could explain why. In early 2021, things got worse. I lost 3 stone in six months, felt constantly weak, malnourished, and brittle.“

Talk us through your journey to diagnosis

“After pushing hard for answers and more tests, I had an 8-hour gastric emptying study (a test to see how your stomach is emptying). At the 6-hour mark, when my stomach should’ve been empty, I’d retained 47% of the food.

Rachel is wearing a hospital gown and pink robe in a hospital. She is sat in a chair, making a playful face. She has a nasogastric tube and wears compression stockings.

That day, I was diagnosed with gastroparesis and oesophageal dysmotility, but the truth is, my journey began many years earlier.”

What treatment have you received?

“I had to take three months off work. I was in and out of A&E with deranged bloods and severe malnutrition. In October 2021, I was fitted with a nasal jejunal feeding tube (a tube placed through the nose and through to the jejunum (small bowel)). I started gaining weight, felt stronger, and more like myself again.

Rachel has her eyes closed and she rests her head on her hand. She is wearing a hospital gown. An IV is taped to her hand.

Eventually, after a failed jejunostomy tube (a feeding tube inserted directly into the jejunum), I transitioned to a PEG-J feeding tube (tube inserted directly into the stomach), which I still rely on. It not only feeds me but also helps me stay hydrated, deliver medication, and manage symptoms. It’s given me the ability to enjoy some foods again.“

How are you now, and can you tell us how gastroparesis impacts your everyday life?

“I won’t sugarcoat it. Living with gastroparesis is hard. I still deal with daily nausea, fatigue, and emotional strain. Many days feel long, lonely, and never-ending. The hardest part is that it’s invisible.

Rachel is smiling confidently with her long red hair. She has a nasal tube secured with decorative bee-patterned tape. The background is plain and light.

To many, I don’t look sick, which makes things feel even more isolating. People have mistaken my feeding tubes for oxygen tubing, thought they were a fashion accessory or assumed I had an eating disorder.

Note: If you are struggling with an eating disorder, support is available from BEAT.

Strangers stare, whisper, and make assumptions about my body. Some believe I don’t need a feeding tube because I’m not extremely thin. But malnutrition can happen at any size. This judgment and misinformation add another layer of difficulty to an already exhausting experience.

Rachel is smiling and holding a starfish in her hands inside an aquarium. She is wearing a white sweater. She has a nasogastric tube secured with butterfly sticker on her cheek.

The mental toll is real – food anxiety, fear of eating, stress about being unwell in public, and worrying if I’ll have the energy for simple things. But slowly, I’ve learned to live around my condition instead of letting it control me.“

How has living with gastroparesis affected your work life and daily routine?

“Employment and chronic illness aren’t talked about honestly enough, especially when symptoms are unpredictable. Over the past six years, I’ve lost count of the times I’ve had to take time off.

Rachel is sitting on a stone wall in a park, surrounded by autumn leaves and lush greenery. She wears a vest, sweater, and hiking boots and is smiling warmly.

Finding a supportive employer is difficult, but so important. I’m lucky to have found one who understands. Their support makes carrying my feed backpack and taking medications at work manageable, even normal. Work has become my outlet, a place of respite. When my body feels out of control, having structure and purpose makes all the difference.“

Is there anything you’d say to someone with digestive symptoms or conditions?

“If you’re newly diagnosed or silently struggling, I see you. It’s okay to feel scared, but things can get better. There is help. There is community. Keep advocating for yourself. Keep pushing for answers. Your story matters. You are not invisible.“

Rachel is running happily on the grass. In the background, large colorful letters spell out 'PLUMS' near a food truck.

Why are you sharing your story today?

“What’s helped me most is the community. I’ve met amazing people with similar conditions – people who lift me up and understand me in ways few others can.”

Why do you want to support Guts UK charity?

“I’d be lost without Guts UK. They’re a UK charity dedicated to supporting and funding research into gut, liver, and pancreas conditions.

Rachel is standing in a sunny field, holding a #GUTSelfie sign that reads: "This is my #GUTSelfie." She is wearing a navy blue Guts UK t-shirt and black shorts. The #GUTSelfie temporary tattoos are seen on her thighs.

Their #GUTSelfie campaign is one of the most heartwarming things I’ve ever been part of – a space where people with digestive conditions share, uplift, and connect. It’s made me feel seen, validated, and never alone.

The team provides vital information and statistics that can guide you through diagnosis and help you advocate for yourself. They are like a team of gastrointestinal cheerleaders!”

“We’re getting to grips with guts”

Guts UK is the charity for the digestive system from top to tail. Our guts have been underfunded, misunderstood and undervalued for decades.

We’re proud to have funded stem cell research into achalasia and gastroparesis. With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Guts UK’s research leads to earlier diagnoses, kinder treatments and ultimately, a cure.

Help the UK get to grips with guts by donating today.

Guts UK’s brand illustration characters of a man and a woman hiking. They have walking sticks, and the man is waving a Guts UK flag, wearing Guts UK t-shirts and trousers.

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A person wearing beige trousers, a white top and a cream jacket is sat down on a sofa. They are holding their hand over their stomach.