Jessica’s Story – Gastroparesis

Jessica has a condition called Gastroparesis. This is a condition that affects the stomach and the name means stomach (gastro) paralysis (paresis). Jessica decided to share her story with Guts UK to help others:

Tell us about your symptoms at first and your journey towards diagnosis

Everything seemed to begin on my honeymoon. My husband Wayne and I had just got married so we travelled abroad for our honeymoon (we adore travelling). But on the second day, we both fell ill with gastroenteritis. Wayne recovered after a few days, but I was kept in hospital for 10 days and never really felt right since.

I went back and forth to various specialists for years, trying to get to the bottom of things. Years on, I was diagnosed with a number of conditions that helped to explain some of my symptoms, but not all of them.

At the time, any food that I was eating, I would vomit back up and I was really bloated too. It kind of felt like my food was stuck in my throat. I knew something was wrong.

I had hunger pains, but felt so full. I started feeling really weak, and pretty alone too.

Why were you admitted to hospital?

My mental health was poor at the time, so I called an ambulance, as I had also collapsed a couple of times. It was a cry for help really. They saw me and took me straight to hospital, they said I  looked malnourished.

How did you feel after you were diagnosed with gastroparesis?

In hospital within the gastroenterology ward, I was finally diagnosed with gastroparesis, which means that my stomach is paralysed. It was such a relief to know the cause of my daily suffering and 3 stone weight loss. At the same time, I felt scared of the unknown and what my new life with gastroparesis would have in store for me.

How does gastroparesis affect you daily?

Every day I suffer from at least one episode of severe vomiting, accompanied by hot flushes, acid reflux and severe stomach pain. I have to be very careful with what I eat and that can be extremely lonely. So much of our social life seems to revolve around eating or drinking out, but, as much as I may want to go out and eat normally with my friends and family, it often isn’t worth the anxiety of worrying my food will come back up.

There’s a real medical lack of understanding surrounding gastroparesis too. I often find myself (a non-medical professional) explaining to medical professionals what gastroparesis is and how it affects me, which can feel quite isolating.

What attitudes do you experience towards your condition?

Overall, the support that I have received has been overwhelmingly amazing, from the NHS staff, to other patients and the team at Guts UK. My husband Wayne is incredibly supportive, I’m not sure what I’d do without him! I feel so blessed. However, on the very odd occasion, people have asked me if I’m ‘making myself sick’.

Unfortunately, I have also been challenged on my using a disabled toilet before because I ‘don’t look disabled’. In these instances, I try to remain as positive and optimistic as I can and instead of shaming people, educate them on my disabilities. Not every disability is visible. Life comes with daily struggles and we’re entitled to have a wobble from time to time, we’re only human at the end of the day.

Why do you wish to support Guts UK’s work?

There are so many patients like myself living undiagnosed and they should never suffer alone. Digestive conditions should be talked about and we shouldn’t feel embarrassed, we are all in the same boat.

I was delighted to hear of Guts UK’s STEM cell research into gastroparesis and I have made raising awareness and fundraising for Guts UK a priority. I’m always telling people about Guts UK, whether it be in-person, on social media or even when the press contact me about my story!

The team at Guts UK have spent time with me on the phone, helping me understand gastroparesis and answering my many questions. They listened to my experiences and reminded me to put myself first sometimes (as I’m good at forgetting to do that!) After speaking with them, I felt much more at peace with gastroparesis and knowledgeable too.

Thank you for reading my story today. I hope that this story helps people feel less alone with their struggles and I also hope it encourages you to think about how you can spread the word or fundraise for Guts UK’s research, awareness and expert information.

“We’re getting to grips with guts!”

Guts UK is the charity for the digestive system. Our guts have been underfunded, understaffed and undervalued for decades.

We’re proud to fund 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.