Victoria’s Story – Microscopic Colitis

It took 12 years for Victoria to finally be diagnosed with microscopic colitis. It wasn’t until she read Guts UK’s information on microscopic colitis, she knew she needed to ask for a biopsy to be taken during her colonoscopy.

Tell us about you

I’m Victoria and I’m 33 years old. I have a husband called Jon, a 17-month-old son called Theodore and a daft rescue dog called The Mooseman. I work in strategic finance, love acoustic music, hiking and travelling. Before covid hit, Jon and I managed to reach our goal of travelling to 50 countries pre-30 years old!

When did your symptoms begin?

When I was 21 years old, I was working at Wimbledon tennis in on-court security. I developed awful stomach cramps and urgency but wasn’t allowed to leave the court without cover. I couldn’t sit on the court, not knowing when someone could take over and ended up taking time off, feeling too poorly and anxious to work. I eventually went to A&E and after many tests, I was told it was ‘just Irritable Bowel Syndrome (IBS)’ and was sent home with no treatment plan.

My symptoms persisted for years but were just about manageable. Whilst the diarrhoea and urgency was frequent, it always seemed worse in the morning which made it possible to plan around.

When did your symptoms worsen?

I was around 26 years old when my symptoms started to become more difficult. I became scared of eating in case it triggered symptoms and flare-ups were becoming more frequent. I had a colonoscopy around this time, but no biopsies of my bowel were taken. I was told my bowel looked fine and that once again that it was ‘just IBS’.

Lockdown hit in 2020, and I felt a wave of relief rush over me. Finally – no leaving the house or worrying about finding the nearest toilet. But what started as relief became a crippling fear of leaving the house. I didn’t know it at the time, but I was deep in the depths of diarrhoea-induced agoraphobia.

In May 2022, I took my son out to a baby class and only just made it home to the toilet in time. This turned out to be the beginning of a very long flare-up.

What were your symptoms at this time?

From May 2022 onwards, a typical day for me was going to the toilet 10 to 15 times per day. I had watery diarrhoea, disabling stomach cramps and often worried about eating because of my symptoms. I’d often wake in the night to empty my bowels. On my worst days, I went to the toilet 30 to 40 times per day, which was so sore. I felt more tired than I’d ever felt in my life and completely hopeless.

How did you get your diagnosis of microscopic colitis?

Having a baby really changed my outlook. Until then I’d become almost resigned to the fact that this condition was ‘just me’. I didn’t want this to be Theodore’s life. My symptoms didn’t just affect me now, they affected him too. I felt horrible levels of guilt. I wanted to function normally for my child, and not be stuck at home with my baby in the bathroom with me.

I decided to see a gastroenterologist again and I booked a colonoscopy in August 2022. This time I asked for biopsies to be taken, as I’d read about microscopic colitis on Guts UK’s website. Several biopsies were taken, and all showed inflammation resulting in a diagnosis of lymphocytic colitis (‘LC’: a form of microscopic colitis).

How did you feel?

I’d lived for 12 years with an undiagnosed condition, with no treatment. I can’t deny that having a label that wasn’t ‘just IBS’ has helped me hugely. This makes me angry, because living with IBS can be crippling and should not be stigmatised. I’ve discovered that when I ask to use a toilet owing to LC, I’m welcomed much more openly than I was when I explained I had IBS. People take me seriously now. I’d been gaslighted for years and made to feel that because my illness wasn’t clinically worse, the severity and frequency of my symptoms and the impact on my quality of life didn’t matter.

What is your treatment plan?

Since diagnosis, I’ve had two courses of budesonide which has allowed me to function again. Though my toilet habits are still not ‘normal’ by other people’s definition, I feel like I’ve regained some semblance of normal. My gastroenterologist now wants to perform a SeHCAT scan to check for Bile Acid Malabsorption too.

What information do you wish you’d received sooner?

I wish I knew that microscopic colitis existed. It feels like the forgotten Inflammatory Bowel Disease (IBD). People know about Crohn’s disease and ulcerative colitis. Finding Guts UK’s information was amazing. I felt empowered. It allowed me to enter the room and finally lead the conversation with my gastroenterologist, and not to be led by them.

What advice would you give to people struggling?

Have the courage to talk. I spent years being ashamed, but the more you internalise these things, the worse they can become. Reach out to organisations like Guts UK and read the information that is out there. This is ultimately what empowered me to ask the right questions. And invest in a hot water bottle!