Julie’s story – Functional dyspepsia and IBS

Tell us a little bit about you

I’m Julie and I live with my husband, Simon, and our cat Stoker in Todmorden. I’m a healthcare professional by background and spent around 15 years in gastroenterology. In my spare time, I love to explore and love photography, especially nature and food photography.

When did your symptoms begin?

My symptoms began in 2003. The abdominal pain was one of the main symptoms, accompanied with constipation. The pain was constant but worse during menstruation. I went to the doctors and was sent down two different routes for investigations. Gynaecology referred me for a laparoscopy which led to an endometriosis diagnosis. I was experiencing symptoms long before being started on prescribed opioid medication for endometriosis pain but started vomiting once I started taking this. Nobody recognised the medication had stopped my stomach from working.

In 2007, I had a hysterectomy. This sorted out the endometriosis symptoms, but I was still experiencing abdominal pain and constipation. Even when I stopped taking prescribed opioid medication, I was still experiencing the symptoms. I also had my gallbladder removed as doctors thought gallstones may have been the problem. Again, the symptoms continued, and I started experiencing what I thought was acid reflux.

Talk us through your journey to an Irritable Bowel Syndrome (IBS) diagnosis

After investigations in 2008, I was diagnosed with IBS-C (irritable bowel syndrome with constipation). I also had tests for coeliac disease, Inflammatory Bowel Disease (IBD) (Crohn’s disease and ulcerative colitis) and bowel cancer, which all came back negative. My gastroenterologist discharged me back to my GP without any information or advice. Thankfully, unlike some people’s experiences, my GP was very kind and supportive.

It’s hard to know what caused my IBS, but I’m sure it wasn’t my lifestyle, as is often the case with IBS-C.  I’ve always ensured I’ve had plenty of fibre in my diet and have enjoyed being active.

Some people do worry that the symptoms could be cancer but that wasn’t my concern. I was really worried about how I was going to live with the symptoms. That’s when I decided to learn more about it. Everybody’s thoughts on diagnosis are different so it’s important healthcare professionals ask their patients how it makes them feel.

What about functional dyspepsia?

I had a PH manometry test (a test where a thin tube is placed in your throat to measure acid reflux (liquid from your stomach moving into your oesophagus)) and endoscopy (a thin tube with a small camera on the end inserted via the mouth) to start with, in 2010. None of the tests showed acid reflux but nobody gave me any idea as to what else it could be. I started experiencing occasional swallowing problems then had a second endoscopy 10 years later which was clear.

It was my own knowledge and research that led me to think I had functional dyspepsia in 2015. For most people who don’t have acid reflux, it’s often functional dyspepsia. My doctor later confirmed that it was. It’s taken me a lot of years to process this, but I know that focusing on acceptance will help me to manage my condition.

How are you now?

I have been through a tough period since my diagnosis trying to accept it for what it is. I am of the mindset now where I won’t let my conditions rule my life. Everyone feels different about their diagnosis and dealing with two disorders of gut-brain interaction (DGBIs) can be a lot to get your head around.

I still have constipation and only have experience of one laxative working for me. Managing my symptoms can be difficult, but the pain from functional dyspepsia has got much better over time and I can manage it better. My experience is usually related to food symptoms (known as post-prandial functional dyspepsia), such as reflux and pain.

Are you on any treatments/medicines for either?

There are other things that I can try but this is something I need to investigate. I currently take prescribed anti-acid medication which helps.

What’s one thing you wish other people knew about functional dyspepsia and IBS?

If your symptoms are continuing or change, it’s important to get assessed. There are treatments out there which are effective and new ones being researched.

Why are you sharing your story today?

I want to make people more aware of functional dyspepsia in particularly and highlight our information on this at Guts UK Charity. Like with the IBS Priority Setting Partnership (PSP), I hope for there to be more research into functional dyspepsia as the causes are still very unknown.

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.