Skip to main content

Crohn's & Colitis
blogs, news & research

News

‘You never know when you might flare up, day to day life is unpredictable’


Young people share what daily life is like living with Crohn’s and colitis.

By

Both Crohn’s and colitis can affect anyone, at any age. James was diagnosed with colitis when he was 21.

‘I was vomiting, constantly glued to the toilet and I noticed blood in my stools – I knew something wasn’t right,’ he tells Metro.co.uk.

‘The whole holiday was a shambles for me as I wasn’t feeling well at all.’

Once back in the UK, James was referred to his local hospital for investigations and was diagnosed with ulcerative colitis.

‘My diagnosis was part relief, part fear of the unknown – as I had never heard of ulcerative colitis before,’ he adds.

James now visits the hospital every eight weeks to get medication – which he’s been on for four years, after other treatments failed.

But he still battles with the unpredictable nature of colitis. 

He continues: ‘I still struggle with fatigue and feeling constantly drained and tired. You never know when you might flare up, day to day life with colitis is unpredictable.

‘Often people don’t understand because they can’t see “colitis” – it’s an invisible illness. I wish people knew the physical and mental pain you and your body can go through, it’s life-changing.’

This is something also championed by 35-year-old Ruth – who lives with colitis.

‘Coming to terms with a chronic illness in my early thirties has been challenging. It’s given me the opportunity to grow in ways I didn’t consider beforehand,’ she tells Metro.co.uk.

‘I consider myself lucky to have experience and understanding of living with an invisible disability. I can bring things to the table, like compassion, flexibility, an understanding of coping techniques and a strong belief in equality and inclusion.’

Ruth has always had some form of abdomen pain – from as far back as she can remember. But it was when she was pregnant with her eldest son that she started noticing it getting worse.

The longer Ruth’s pregnancy went on, the worse her symptoms became – sometimes having uncontrollable accidents up to 14 times a day, which she describes as being ‘incredibly embarrassing and degrading’.

Shortly after the birth of her son, Ruth was diagnosed with ulcerative colitis and has received various drugs and medications to treat it ever since.

Ruth says that her diagnosis gave her a ‘sobering reality check,’ particularly as someone who likes to be busy within her community – as both the physical and emotional impact of colitis takes a huge toll on her life.

She adds: ‘While the physical symptoms of colitis are often staggering, the sheer determination and strength needed within, to get through life as it now is – with very different boundaries on time, energy and focus – is what I have found the hardest. 

‘It’s a grief, to the adjustments and sacrifices I’ve had to make to ensure I can be the best version of myself, without overdoing it, which will inevitably impact on my health. Despite being in remission, I still suffer with fatigue, which I find the hardest challenge. 

‘I also have to be vigilant with hygiene, so that I don’t pick up bugs. The adjustments and support my husband has had to make, in particular, have been many and I am very lucky to have him and some brilliant friends who help often.

‘I often find myself overachieving to compensate for any shortcomings of my IBD diagnosis – but surrounding myself with the right people, work place and self-belief, enables me to be kinder to myself and manage my symptoms.’

Ruth hopes that more people, of all ages, become more aware of their bowel habits. Particularly considering that bowel disease affects one in 210 people in the UK and, if left untreated, it can significantly increase the risk of bowel cancer.

But she also wants to reassure anyone going through a diagnosis.

Ruth adds: ‘Being diagnosed with bowel disease is not the end of the world and if you take control of your treatment and communicate with your inflammatory bowel disease nurses fully, you will find the right treatment and gain remission. 

‘If you have been diagnosed with IBD, it is so important to know that you are still attractive, worthy and wanted despite how rubbish this condition can make you feel.’

Read full article here.

Posted on: December 13 2021

Leave a comment

Your email address will not be published. Required fields are marked *

No comments found.

About the author


Crohns & Colitis