Sarah’s Story – Gastroparesis
Sarah has a condition called gastroparesis. This is a condition that affects the stomach and the name means stomach (gastro) paralysis (paresis). Sarah is sharing her story today to raise awareness for hidden disabilities and to give others, like her, hope.
Tell us a little about yourself
I’m Sarah, I live in Bristol and I’m 38 years old. I love paddleboarding, swimming and anything water-related! I love music and play the oboe. When I’m not so well, I’ll build Lego and listen to audio books. I was a primary school teacher but wanted to make a change to the education system, so I did my masters in Psychology of Education and have set up a consent-based learning community for young people.
When did your symptoms begin?
My mum explained that my symptoms began as a new-born. I’d vomit a lot and I was prepped for surgery at 14 weeks old but they tried medication instead. Mum would have to breast-feed me constantly to keep my weight on, even after I was vomiting.
Through childhood, I remember vomiting undigested food, bloating and burping. But this was my normal, and Mum said I’d be happily skipping down the road, suddenly vomit, then continue skipping.
Throughout my adult life, these symptoms continued and I still struggled to keep my weight stable and remain hydrated. I experienced repeated kidney stones due to dehydration and my energy levels were low.
When did you first seek help?
I mentioned that Mum fought really hard for me over the years, and I sought help in my adulthood too. I had always been told that I had acid reflux, but the medication didn’t help. Eventually, they decided to prepare me for surgery for acid reflux. The hospital finally did a 24-hour pH monitor test on me, which measures how often acid enters the oesophagus. They found that stomach acid didn’t enter my oesophagus very often at all, which prompted further tests.
How did you feel when you were finally diagnosed with gastroparesis?
After being told I had gastroparesis for the first time, I remember looking at the symptoms and I just thought – ‘it’s me! These are all of my symptoms on paper.’ My stomach is paralysed – it all makes sense! It was like reading about myself. When I had my first appointment with a dietitian, she said, “You’ve done such an amazing job to get to this point in your life with no help or support. You don’t have to do it on your own anymore”. I burst into tears.
My mum understandably felt a lot of anger. She had been banging her head against a brick wall for years trying to get the right help for me.
It wasn’t until later that I felt a little scared. I had always imagined that one day, someone would work out what was wrong with me and fix it. But discovering that there is no fix and there is no cure was frightening.
How does gastroparesis affect you?
Last year I had a bad virus for three weeks. Everything I usually did to help or retain my weight wasn’t working. I lost over 20% of my body weight. My dietitian took one look at me and sent me straight to hospital. At this point, my gastroparesis diagnosis was still quite new so hadn’t been updated on my personal details. A consultant said to me, “We see a lot of young women like you. You just need to go home and eat”. It wasn’t the insinuation that I had an eating disorder in this comment that upset me. It was the fact that even if he thought I did have an eating disorder, I still wasn’t being offered any help. It was very dismissive and dangerous.
Since last year, I have had to be admitted to hospital multiple times for IV fluids, to try different medications and eventually to be fed via a tube. I recall having a feeding tube fitted that goes through my nose straight into the jejunum (an NJ tube, which bypassed my paralysed stomach). Though I was very scared and reluctant to have it done, it was the first time in my life I had felt what proper nutrition was like and without any gastroparesis symptoms.
They also tried injecting a part of my stomach with botox to help let food through. Eventually, I had to have a PEG-J feeding device fitted (a tube that goes into my stomach and through to my jejunum and can be managed at home) and I was strong enough to be discharged.
How are you doing now?
Now, after a recent blip where my old tube caused stomach ulceration, I have a new PEG-J feeding device and am doing better. I recently celebrated getting through my first ever Winter without getting poorly! I have put on weight and I’m trying to get back to building muscle mass again by swimming.
Why have you chosen to share your story today?
I feel there’s a lot we can do in society for those with hidden disabilities. When I had to travel by plane for a funeral, I asked for extra help with my feeding equipment at the airport. I was shouted at, “You’re not disabled, you don’t have a wheelchair!” I shut down. It was humiliating.
When I was diagnosed, no one around me had heard of gastroparesis, so raising awareness is important to me. I found Guts UK when I discovered their stem cell research into gastroparesis. I felt hope for the first time. I can hope for a life that doesn’t rely on a feeding tube forever more.
“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.