Diane’s story – Microscopic Colitis

Tell us a little about you 

“I’m Diane, I’m 61 years old and I live in Felixstowe, Suffolk. I’m married and have four children and four grandchildren.  

I work full-time as an Importing Shipping Clerk for a large shipping company. In my spare time, I enjoy gardening, socialising with my friends, and days out with my mum.”

When did your symptoms begin and what were they? 

“My symptoms started in November 2024. I went out for dinner with friends and halfway through the meal, I thought ‘I don’t feel well, I think I’ve eaten something dodgy.’ It came on very quickly and I just made it home to the toilet. 

From the November to February 2025, things got worse very quickly. I had urgency to go to the toilet and had severe watery diarrhoea. Suddenly, I couldn’t go anywhere if there wasn’t a toilet in sight. There was no warning; I’d feel an urge to go to the toilet and within seconds, I’d be passing watery stools.  

In the morning, I’d go to the toilet between 8 and 10 times before leaving for work. I’d get in the car to drive to work, and I’d rush to the toilet as soon as I got there, just making it in time. I was scared to eat anything during the day in case I had an accident at work, and I’d have to take a spare set of clothes and wet wipes in my car, just in case.  

My symptoms were the worst at night, and I had to wear adult nappies to bed. It was horrendous. One night, I soiled myself and it took half an hour to clear up. That was a turning point. I thought, ‘This has got to stop, I need some help.’”

Talk us through your diagnosis 

“It took me four months to get diagnosed. It was the longest four months of my life. When my symptoms first started, I went to see my GP and they requested stool samples, but nothing showed up. I felt my GP didn’t listen to me and I felt like I was getting nowhere.  

In February 2025, I asked to be referred to the hospital. After initially being told the wait would be over a year, I was thankfully fast-tracked due to my age. I had an urgent endoscopy (a thin, flexible tube with a camera and light inserted into the body through the throat) and colonoscopy (a flexible tube with a camera inserted into the back passage to look at the inside of the colon), but they revealed nothing. I was flabbergasted and really upset, as I knew something was causing it. I was sent for a biopsy and three weeks later, I was diagnosed with microscopic colitis.”

Talk us through your treatment 

“I’d never heard of the condition before and had assumed it might be irritable bowel syndrome (IBS) or ulcerative colitis. I was referred to the gastroenterology clinic at the hospital where I was prescribed budesonide (a steroid medication). It was music to my ears when I was told it could be managed. In three days, I noticed a big difference and within five days, I felt I was back to normal.”

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

“I’ve been prescribed a three-month course of the medication and I’m hoping my symptoms won’t come back, but there’s no knowing. It’s a lifelong condition that needs to be managed and it can flare up.  

Once I’ve finished the medication, my GP will monitor me. I know there’s no cure. I will have flare-ups now and again and might need more medication in the future.  

After four months, I’d forgotten what normal is. At one point I thought, ‘If I have to live like this, I don’t know how much longer I can do it for.’ That’s how much it impacted me. 

Now I feel liberated. I’m back to myself and feel like I can live again. I can go out again and I’m thinking about going on holiday, now I feel able to travel. I couldn’t have thought about that before. I want to get on with my life and not worry about it. Since being prescribed the medication, everything has turned around. I hope it works long term.”

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

“I felt so isolated and alone because nobody I knew had been through it. Microscopic colitis is debilitating, and your life just stops. I felt ashamed, in some ways. You know when something is wrong. I know it might feel embarrassing and that might stop people from getting help, but know that help is there, and life can return to normal. 

I wouldn’t wish microscopic colitis on my worst enemy; it is truly awful.”

Why are you sharing your story? 

“I’d like people experiencing digestive symptoms to know that they can get help, and life can return to normal. I was Googling my symptoms, trying to find answers. I found Guts UK’s website and read other stories. I thought ‘that’s me’ and it gave me hope.   

I’d like people to know there’s help available. I was in a dark place when I got help. It gets you down but I’m in a much better place now. It doesn’t go away if you ignore it, it will stay with you. Get help; it’s there if you want it.”

About Guts UK

Guts UK is the national charity for the digestive system and the only UK charity funding research into the whole digestive system.

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.