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HomeWellbeingColitis: Getting diagnosed and living with inflammatory bowel disease

Colitis: Getting diagnosed and living with inflammatory bowel disease

Maddie Ewins, 26, was diagnosed with ulcerative colitis nine years ago.

I’ve been diagnosed with ulcerative colitis for nine years now; however, I had lived with the disease for a year before that due to misdiagnosis.

My disease first started to become a problem when I was in college.

I started noticing blood when I went to the toilet and tried to ignore it in the hope it would eventually disappear. But I gradually became weaker and was tired constantly.

Getting a diagnosis

I decided to speak to my mum about it who then took me straight to the GP. At this point I was going downhill quite quickly, having to come home early from college due to stomach pain and fatigue.

My GP said it could be indigestion and prescribed me Gaviscon. I reached a point of desperation and my mental health had taken a big hit. Doctors were constantly asking if I had an eating disorder due to my very low BMI. I was offered counselling and anti-depressants due to my low mood but I had no real diagnosis. I felt I wasn’t being listened to. I was told I was ‘too young’ to be diagnosed with inflammatory bowel disease (IBD) when my parents suggested this after doing intensive research themselves.

Eventually, we decided to go private. I saw a consultant at a local hospital who said it sounded very much like IBD and suggested I had further tests. She recommended a colonoscopy. Luckily, we managed to get this done on the NHS. Immediately after I was diagnosed with ulcerative colitis. I was told had it been left much longer without treatment I would have ended up in intensive care.

Treatment for colitis

I then spent years going through cycles of steroids to fight off my flares. These would get it back under control but long term, they were not the right solution.

During the Covid-19 pandemic, I entered another bad flare which we couldn’t get back under control. My IBD team then suggested I try a new drug. I had to spend eight weeks shielding at the beginning of this treatment due to its immunosuppressant characteristics.

It’s been almost a year, and I finally feel it has been the best treatment yet for me. I self-inject once every two weeks which I thought I would struggle with but have quickly got used to this new way of life.

I still receive a lot of comments on my weight, many from medical professionals asking if I have an eating disorder. I feel like I am quite used to this now after hearing these comments most of my life but wish it wasn’t the case.

Living with IBD and colitis

I still struggle with fatigue and regular joint pain, but overall feel a lot better in myself than I have done for years. I feel like I am now in tune with my body. Mindfulness and yoga have been a real help to keep my stress levels low, as stress is one of my main triggers.

My main advice to anyone suffering from similar symptoms is to speak to someone before it gets out of control.

The symptoms

The main symptoms of IBD are diarrhoea, cramping pains in the abdomen, tiredness and fatigue, feeling generally unwell, loss of appetite and loss of weight, anaemia (a reduced number of red blood cells), and mouth ulcers.
For more information, visit: www.crohnsandcolitis.org.uk/
Charlotte Harding
Charlotte Harding
Charlotte is a journalist and the co-founder of The Women's Work Collective.
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