Paul’s Story – Gastroparesis
Paul has a condition called gastroparesis. The name means stomach (gastro) paralysis (paresis). Paul is sharing his story today to help other people feel less alone and to encourage conversations surrounding our guts.
Tell us a little about yourself
I’m Paul, I’m 30 years old and I live in the town of East Kilbride in Glasgow. I’ve lived here my whole life and currently live with my mum, sister and my little nephew (and best friend) Leo. My mum and I often care for Leo whilst my sister works. We have a dog, Chase and a cat, Millie. I love go-karting and F1. I’ve been all over the place to follow my passion, including a 20-hour drive to Austria. This is, hands down, one of the best things I have ever done!
When did your symptoms begin?
In 2014, I experienced a lot of gastric problems. These included bloating, diarrhoea, vomiting and feeling generally run-down. I couldn’t eat without vomiting and was losing weight rapidly. These were the first symptoms I had, and doctors suspected causes such as gastritis and stomach flu. However, the treatments weren’t effective. I began to feel hopeless. I felt like giving up on my health because I wasn’t getting anywhere. I was losing the will to fight.
When did you receive your gastroparesis diagnosis?
Six relentless months later, I was diagnosed with type 1 diabetes. They told me that my high blood sugars may have damaged nerves in my stomach. Two years on from this, I finally received a gastroparesis diagnosis after a gastric emptying scintigraphy (GES).
How did you feel when you were finally diagnosed with gastroparesis?
I felt contradicting emotions; relief for receiving the diagnosis and on the other hand, a lot of dread. I asked myself “how do I deal with this?” and my mind went into overdrive. I experienced anxiety and depression. This felt like another thing to add to the list, alongside my type 1 diabetes.
I noticed a stark difference between the accessibility and availability of medical professionals to talk to in diabetes care compared to there being very little help or information available for gastroparesis. It felt like everyone knew diabetes and how to deal with it, but nobody wanted to touch gastroparesis or try to understand. This was the worst period I experienced in my gastroparesis journey.
Talk us through your day-to-day, living with gastroparesis
Seven years down the line, I am finally starting to get more to grips with it. I keep a food diary to identify my triggers. It’s a balance between knowing when to take my insulin alongside considering my slow digestion.
My worst days are rough. As soon as I wake up, the bloating begins. Then diarrhoea sets in following running backwards and forwards to the toilet all day from my bedroom. On these days, I can’t stomach anything because I know the vomiting will then begin. It’s tough trying to manage my blood sugar alongside my gastroparesis. All I feel like doing on these days is hiding in my bed.
On my better days, I still feel a bit rubbish, but I can have breakfast (toast and tea), have a shower, and get ready. I can make plans which often involve seeing my friends, karting, and having adventures with Leo! I feel able to look after him on these days and quite chatty. Eating comes easier on these days. I try to have four small meals a day. Gastroparesis controls my life and can be unpredictable, but I try to not let it get me down.
Talk us through your treatment. How has this been for you?
Today, I don’t really have a treatment plan for gastroparesis. I have had to try get to grips with gastroparesis myself. When it comes to diet, this is the biggest factor for me. Routine and smaller meals more often is my way of dealing with gastroparesis.
What advice would you give to someone who has just been diagnosed?
You’re not the only one out there, even though it feels like it on some days. We are all in it together. Hopefully by sharing these stories, I can help other people. This gastroparesis awareness month, reading others’ stories on Guts UK’s social media has really helped me.
Always ask questions. Get help from Guts UK. I know the medical professionals don’t always understand it, but you never know what advice a medical professional might be able to offer you or refer you on to. You deserve to be supported.
Keep positive and don’t let gastroparesis define you. If you’ve just been diagnosed, then please don’t give up. You’re going to have good and bad days but that’s normal, living with gastroparesis. It will be trial and error at the very start but begin with smaller meals and gradually build up and keep a food diary. All in all, remember that you haven’t failed, even on your bad days.
“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.