Caroline’s Story – Microscopic Colitis

Caroline was going to the toilet around 20 times a day and woke up in the night with it too. She was continually misdiagnosed until finally she was given the correct diagnosis of microscopic colitis.

Tell us a little bit about you

I’m Caroline and I live in Cornwall, so I love spending a lot of time on the beautiful beaches that surround me. I spend a lot of time with my family, go out for meals with friends or to the cinema. I work part-time in a customer service role at a local college.

Can you remember when your symptoms began?

I have memories from primary school where I’d cry on the toilet, complaining about my sore stomach. This continued into secondary school. When I was at college, I felt embarrassed about my symptoms. I’d think people were noticing how many times I’d leave class to go to the toilet.

It was during my late teens and early 20’s that my symptoms worsened. Most days I’d be running to the toilet with diarrhoea around 20 times per day. I would sleep and sleep, and had such little energy. I’d often wake in the night with the sudden urge to run to the toilet, and the pain would wake me too.

When did you see your doctor about your symptoms?

During this period, I was back and forth to the doctor all the time. They diagnosed me with Irritable Bowel Syndrome (IBS), asked me to try cutting out wheat and encouraged me to try peppermint oil too. Nothing helped.

How did this affect you?

I was a Teaching Assistant at my local college, which required me to spend the full day with a student. I’d often have to ask someone to stay with my student whilst I ran to the toilet. I would always feel fatigued too, with very low energy levels.

When I was around 22 years old, I lived in a house share. My friend watched me crawling out of the bathroom and said, “I really think you need to go back to your doctor”. Not long after, I called both my parents and asked if we had any digestive conditions in the family. This is when I found out that Inflammatory Bowel Disease has affected my dad’s side of the family.

I went straight to my doctor to tell them. They organised a few scans for me, but all of the results came back normal. How could I be normal when I felt so terrible? I was left to cope with my symptoms alone.

When were you finally diagnosed?

I’d lost two stone over the past few weeks. My mum was my advocate and really stood up for me. We went to see my doctor together and she asked for a second opinion. I was referred to another hospital this time. My first colonoscopy was very painful and unsuccessful, so I was given sedation the second time. They finally took biopsies of my bowel and that’s where they found it – microscopic colitis. I had the lymphocytic form of microscopic colitis.

The college I work for was really supportive. They allowed me to move from Teaching Assistant to a customer service role, which was desk-based and much easier for me.

How did you feel?

Relieved. I finally had an answer and felt like I wasn’t crazy. I’d been right all along. My friends and family who had known my struggle were actually congratulating me on my diagnosis, which is bizarre and funny looking back!

My friends and family have always been amazing. They’re always asking how they can help, which means a lot to me. The IBD nurses whose care I’m under are amazing too. I can call them at any time and they’re always there to help.

What treatment were you given?

Within days of diagnosis, I was on steroids (budesonide). I was finally able to eat as soon as I started taking these steroids. My diarrhoea improved and was nowhere near as bad as it used to be, but I still do experience diarrhoea and fatigue on a daily basis.

When I’m having a bad day now, I find sleep and rest are key for me. On a really bad day, I’ll allow myself to spend the day in bed and I tend to feel much better the following day.

Why are you sharing your story?

The thought of people going through what I did, misdiagnosed and struggling makes me so sad. This was a horrible time for me, and I want to try and help as many people as I can get the correct diagnosis and treatment.

To someone thinking they might be misdiagnosed, I’d tell them to not be afraid to push more. We know our bodies and we know when something isn’t right. It’s okay to question healthcare professionals sometimes.