Claire’s Story – Microscopic Colitis

Claire was diagnosed with microscopic colitis, even after her stool samples returned to the GP as normal. She shares her story in the hope that it may help give others the confidence they need to seek help:

Tell us a little about yourself

My name is Claire, I’m 48 years old and I’m a bit of a film buff, I particularly love old films. In my free time I like to go for cocktails with friends. I work as a teaching assistant.

When did your symptoms begin?

My symptoms began in October last year. I had been suffering quite a while on and off, and put it down to IBS. I had just started taking an anti-depressant too. But it became so bad that I was constantly going to the toilet, and often found myself having to rush too, with urgency. I was going to empty my bowel around 15 times a day, which is really exhausting. I found myself waking in the night to go to the toilet too.

I lost weight too, due to going to the toilet so much but also feeling ‘off’ and that made me not want to eat. I did have a cramping pain in my lower stomach too.

How did your symptoms affect your life at that time?

When I felt at my worst, I couldn’t even work. I didn’t want to leave the house, as I was so worried about having an accident on the tube. This would make me even more anxious, which I know doesn’t help. I am lucky to live in London with so many home-delivery services, as I didn’t even like going to the shops.

Did you go to see your GP?

I contacted my GP for the first time a month after the diarrhoea started, in November. They asked me to bring in samples which I did, all samples came through normal. I felt really disheartened, as I needed an answer for my symptoms. I later learnt that microscopic colitis doesn’t always show on stool tests, as the inflammation is ‘microscopic’.

All the while, my symptoms continued and I returned to the GP. I explained that I wasn’t feeling better. My GP invited me in for an in-person appointment, felt my stomach and said it did feel empty. I told her how much I was struggling. She put me on the cancer pathway in December for a colonoscopy.

In January, I had a colonoscopy. Ahead of this, I had done my own research. I had heard about microscopic colitis on Guts UK’s website, so I was going to ask the person doing my colonoscopy for a biopsy (as microscopic colitis can’t be seen, it can only be diagnosed by taking a small sample of tissue and placing it under a microscope).

Thankfully, the man doing my colonoscopy explained that he would be doing a biopsy, and that I would receive results later on this test. 

What happened when you were diagnosed with microscopic colitis?

The weeks were passing by without hearing of the biopsy results, so I called up again in early March. My GP looked at my notes and discovered that I hadn’t been told I had microscopic colitis.

At this point, the hospital had discharged me and I’m not sure my GP knew what to do to get me started on treatment. She explained she would refer me back to gastroenterology, but my appointment letter came through as October. At this point it was March, and the thought of having with no help with my symptoms was awful.

I returned to my GP and this time she began my treatment of budesonide in March. It was reading Guts UK’s information, and reaching out to them that gave me the confidence to go back. Luckily, I’m not afraid to challenge things now and again. I worry for the people who suffer in silence. 

How are you now? 

I am currently on a course of budesonide (steroids). I still have to rush to the toilet sometimes, I still go around 5 times a day, but my life is easier. My treatment course not finished just yet, I am only a week in and already feel better.

I was so pleased to hear that the treatment can be effective and I didn’t have to suffer with these same symptoms. I can manage them.

Why are you sharing your story today?

There are many people out there who may not be willing to push a little more, or don’t have the means to research conditions like microscopic colitis themselves. I want people to read my story and think ‘this sounds like me’. If you’re armed with a story like yours, or information, you can go to your doctor and say ‘I want a colonoscopy and a biopsy’.

About us:

Guts UK is the charity for the digestive system. Our guts have been underfunded, undervalued and misunderstood for decades. We exist to change that by funding life-saving research, raising awareness of digestive conditions and providing expert information for patients.

Together, we can bring about important chance in this neglected area of health. Please support Guts UK by donating £3 a month. With you by our side, we will get to grips with guts once and for all!