Lorna’s Story – Microscopic Colitis

Tell us a little about you

I’m Lorna, I’m 55 and I live in Glasgow. I am married and live with my husband and four daughters. I worked in the NHS in a nursing capacity until October 2023 and have an interest in sign language.

When did your symptoms begin?

Back in 2019, I thought I had food poisoning. I couldn’t eat without everything going straight through me.

Three weeks later, the symptoms tailed off, but I noticed I’d lost weight. Another four weeks later, I rang my GP and told him my symptoms. He prescribed me some medication but ten days later, things hadn’t improved so I went back to my GP. I had to provide a stool sample. My results came back fine and I was told I didn’t need any further investigations.

However, a few days later, I got a letter from my GP saying there was inflammation in my sample, and I was referred to gastroenterology. Over the next few months, I lost two and a half stone in weight. If I went out, I had to make sure I was near a toilet. I’d even wake up at night with urgency.

Talk us through your microscopic colitis diagnosis

Under the care of gastroenterology, I had an endoscopy (a camera down the throat) and a colonoscopy (a camera to check my bowels). After going home, I couldn’t move for a week and a half without soiling myself. I was passing pure watery stool and dreaded eating, even though I was so weak. I was also started on prescribed steroids and had times where I felt more okay, until I started to taper off them then my symptoms came back.

Four weeks later, the biopsy results showed that I have collagenous microscopic colitis. I was also tested for Helicobacter Pylori, and this was also confirmed. I was prescribed antibiotics for this. My symptoms continued. I had stomach pain above my belly button and the urgency increased. I felt so horrible, and I had scans to check for pancreatitis (which didn’t show pancreatitis). Again, it was confirmed with a sample that I still had Helicobacter Pylori. I didn’t want to go on antibiotics again and I felt at such a loss.

I was then told my consultant was leaving and was sent home after my scan with no plan. I waited for six months to see if hospital would follow this up. I chased the hospital for an appointment and met with my new consultant in May 2023.

Talk us through your treatment

I’ve on prescribed long-term steroids. The side effects from the steroids really impact my mental health. I get insomnia, but feel constantly exhausted, joint pains and have experienced weight gain.

I’m due to have repeat investigations and tests next month (in May 2024) to see if the steroids are helping. I’m really concerned I’ll get taken off them. Emotionally, it would destroy me.

How are you doing now and how do your symptoms affect daily life?

In 2021, I got Covid and had to have nine months off work. When I went back, I was trying so hard to balance my work and my health and was diagnosed with arthritis.

In October 2023, I resigned from my job. I just couldn’t bear not being able to give the service to my patients that I wanted to. It was like giving up a big part of myself. I still struggle to deal with my diagnosis.

What’s one thing you wish other people knew about microscopic colitis?

Everything needs planning. It’s like having a newborn. You’ve got to make sure you are equipped with everything to leave the house, including changes of clothes. When I’m having a flare-up, I can’t plan anything with anyone because it’s so unpredictable. My husband is a great support. I’ve found myself crying from feeling so embarrassed. I could be having a great day one day then tomorrow everything can flip on its head.

Why are you sharing your story today?

After my diagnosis, I was never given any information. I was left to learn about my condition myself. This is when I came across Guts UK charity’s information.

Microscopic colitis needs to be recognised more for what it is. I feel the professionals don’t know much about it and nobody picked up on the warning signs sooner. There also needs to be more awareness and support. I don’t want anyone to go through what I have and I’d love to help contribute towards more public awareness of microscopic colitis.

Awareness is vital to steer future research on microscopic colitis. It’s time to get to know this misunderstood condition so much more. This is partly why I’m supporting Guts UK by sharing my story.

Nobody knows your body better than you and it’s so important to remember that. If something isn’t right, don’t ignore it. Listen to your body and know that you’re not alone.