Rachael’s Story – Gastroparesis

Gastroparesis is a condition that affects the stomach and the name means stomach (gastro) paralysis (paresis). Gastroparesis is a chronic (long lasting) disorder where the stomach does not empty the contents in a normal way, without there being an obstruction or structural abnormality.

Tell us a little bit about yourself

“I’m Rachael, a children’s nurse from Yorkshire, now living in Manchester. I have a number of illnesses, one of which is gastroparesis. In my free time I do gymnastics, arts and crafts and spend time with family.”

When did you first start experiencing symptoms?

“In 2016, I had a number of cardiac arrests which resulted in organ failure. I found that after I left intensive care and returned to a normal ward, I was unable to keep food down as I could before. I was given a feeding tube in hospital, and after three months in hospital, the feeding tube was removed and I returned home with build-up milkshakes.

For the next two years, I was constantly in and out of hospital with weight loss and vomiting. I would feel full very quickly, I was bloated and in pain.

One doctor told me I was anorexic and asked if I was making myself sick on purpose. Over this two year period, the lack of answers I was receiving made me wonder whether I was somehow doing this to myself. Was it all in my head?

Upon one visit, I saw a different consultant who wanted to test me for gastroparesis. Tests confirmed that I did in fact have gastroparesis. Months prior, I had met someone in hospital who had gastroparesis too and I had thought our symptoms were similar.”

How did you feel?

“I felt instant relief to have answers for my poor health, but I was aware of the friend I’d made in hospital and his struggles. I was aware there was no cure and there were few treatments. I was scared of what I might face next.

I feel lucky that my journey to diagnosis took 2-3 years, as I have since connected up with others whose journey to diagnosis was an awful lot longer than my own.”

How does gastroparesis affect your life?

“Three years on, my symptoms still affect my daily life. Feeling sick and being sick are a regular occurrence for me, as is pain, heartburn and bloating.

I have had a gastrojejunostomy (surgery to connect part of my stomach to part of my small intestine) and a feeding device alongside, allowing me to drain vomit and feed at the same time. This does improve my vomiting symptoms, and I have a liquid diet. I have learnt to feed via my feeding device overnight, so I spend time in the evenings preparing my medication ready to administer overnight. This becomes more difficult if I’m on a night shift, but I’m good at managing my current situation.

More recently, I had life-threatening bowel blockages and gastro-intestinal failure. I awoke from surgery with an ileostomy stoma bag (part of my small intestine diverted out of the belly). As a nurse myself, I knew I hadn’t been told or prepared for this as a possibility during surgery, so I was angry and very shocked. My ileostomy was however later reversed.

There were times I was very underweight, and so malnourished that I ended up in intensive care. Thankfully, I am resilient and good at coping. Naturally, there are times I struggle. I noticed that the longer I spend in hospital, the more my mental health deteriorates.”

What attitudes have you experienced towards your condition?

“When I still had my feeding tube in through my nose, I nipped to the supermarket to get a drink. I am not underweight, but I have lost a lot of weight and at the time was malnourished. A man who was very close by said “I can’t believe she’s left the house with that tube hanging out of her nose, she’s clearly not anorexic.” I informed him that it’s my stomach that’s broken, not my ears. Perhaps I wasn’t so polite at the time, but I didn’t feel like being polite.

People ask me how long I’ve had cancer, to which I explain that there are a huge number of medical conditions which require nutritional support, not just cancer. I will happily speak with people who are curious and inform them of my condition. But like many others with chronic illnesses, I can find myself growing tired or becoming uncomfortable during situations – especially when being stared at for a disturbing length of time!

However, I have a great support system around me which makes dealing with multiple illnesses easier. My friends are understanding and will adapt outings or get togethers if necessary. My little sister is my best friend and a huge support. My dad educates himself on every illness I have. He spends time researching each one, attends training days and just cares so much. He even joined a local group to improve the mental health services in my area, at a time when I was struggling.”

How did you feel about finding Guts UK and discovering #GUTSelfie?

“When I was taking my #GUTSelfie, I felt weird about getting my scars and belly out in front of potentially thousands of people! It felt different to my usual family and friends seeing me in a bikini on Instagram. There have been times I’ve been made to feel as though I shouldn’t show it. But a bikini body is a body with a bikini on, and it shouldn’t be defined by anything else.

Once I’d taken the photo, I felt very differently. I felt like I was doing the right thing – I was meant to be doing this and raising awareness.”

Why are you sharing your story today?

“It’s important that more people know about gastroparesis and the symptoms. Too many people spend too long undiagnosed, struggling alone. I want people to know that there is help and support out there, and they can always reach out to me to talk via Guts UK if they want to connect up.

I work with really poorly children. I see horrific things at work, yet I see people come right through to the other side. I heard a saying that really resonated with me; ‘I don’t want my struggle to make me a victim, I want my battle to make me someone’s hero’.

Where I can, I try to find the positive and find the laughter. It helps.”

Guts UK can only continue helping and reaching people like Rachael with your support. Please donate to Guts UK today. Together, we will get to grips with guts! Thank you.