Living life with an Inflammatory Bowel Disease

One in 200 people in the UK live with an inflammatory bowel disease. Chances are, you know one of them. But do you know anything about Crohn’s Disease or Colitis?

The term inflammatory bowel diseases usually refers to one of two chronic illnesses, Crohn’s Disease and Ulcerative Colitis. One in every two hundred people in the UK suffer from one of these conditions and yet the general public seems to be mostly unaware of their existence. As the conditions affect a person’s digestive system and create bowel related symptoms, could it be that British sensibilities mean people are uncomfortable talking about them?

Both conditions are chronic illnesses and there are currently no cures available. Sufferers have to adapt their lives to incorporate the symptoms of their illness. And each sufferer will be affected in different ways. There is no ‘typical case.’ Potential symptoms include pain, fatigue, urgent diarrhoea and weight loss. Some sufferers may even have inflammation in their eyes or skin rashes.

Symptoms usually begin to present in the teens or twenties but it can take a long time to reach a diagnosis. As the symptoms of inflammatory bowel diseases are often similar to other illnesses, such as Irritable Bowel Syndrome, it can often mean months of frustrating GP visits and tests. 

Amber’s story

Someone who is familiar with this process is 21-year-old Amber Gamble from Buckinghamshire. Amber is currently studying Journalism and Hispanic Studies at The University of Sheffield and is on a year abroad working in PR in Spain. Her first symptom was a swollen foot. Then came pains in her stomach. “Eventually it got to the stage where I couldn’t hold any food because I would have to go straight to the toilet,” Gamble recalls. “Things got worse when blood and mucus started to appear in my stools. My Mum took me to A&E where I was seen by a very incompetent doctor, who diagnosed me with ‘abdominal migraine’.”

After more doctors’ visits and tests she was finally sent for a colonoscopy by a gastroenterologist and was diagnosed with severe colitis.

Amber, 21, Sheffield University student and Ulcerative Colitis sufferer

Amber is one of the estimated 2,700 people currently living in Sheffield and suffering from an IBD. She is now able to take medications which can keep her condition under control. However, medications are not a complete solution for those suffering from an IBD. The nature of Crohn’s and Colitis means that those with the conditions suffer from ‘flare ups’ which may lead to hospitalisation or even surgical intervention.

With the risk of flare-ups an ever present threat, sufferers have to learn to manage their condition and adapt their lives to take their illness into account. Amber says her illness affects her academic performance, her ability to exercise and, to an extent, her social life. “When I am in a flare up all of my energy is zapped, therefore doing exercise is out of the question, it also means my performance at University isn’t at the standard that it could be,” Gamble says. “With regards to my social life, regardless as to whether I am in a flare up or not I can’t really drink alcohol as like most people, but even more so in my case, as just one drink can make me extremely ill within a few hours and the next day. The pressures of drinking alcohol at my age are very high, if I’m not drinking on a night out people can’t understand why and call me boring etc., I don’t really want to go into a huge explanation as to why I don’t drink but sometimes it is necessary.”

Me and IBD—a youth campaign

As Inflammatory Bowel Diseases usually become apparent when sufferers are young, the leading UK IBD charity Crohn’s and Colitis UK is running a 2013 campaign focused on youth entitled ‘Me and IBD’. They’ve created a micro-site to support the campaign and have been working with Celebrity Big Brother winner and X-Factor contestant Rylan Clarke. 

Amber believes that raising awareness amongst young people and getting them talking about IBDs would help take away some of the embarrassment many sufferers feel. She says, “obviously due to the nature of the disease it is not something people would be comfortable talking about, but I think it’s so important to raise awareness amongst young people because when you are first diagnosed everything is extremely daunting, but, for example, if there were plentiful articles available to read about people’s experiences, especially of a similar age it would have put me more at ease.”


Support for sufferers

So where can sufferers in the area turn for support? The first port of call for someone newly diagnosed, or indeed an existing sufferer, should be Crohn’s and Colitis UK’s website. Visitors can access information, support groups and become members. Members will be sent regular updates on research and campaigns and a ‘Can’t Wait’ card.

This card carries the message: “Please help – our member has a medical condition which is not infectious and means they need to use toilet facilities urgently. Your kindness and cooperation would be much appreciated.

The card is intended for use if members find they need access to bathroom facilities in a public place. It does not guarantee access but confirms that you have a genuine need. Crohn’s and Colitis are publicising the card to make retailers and their staff aware of the need under a ‘good customer care’ policy.

Sufferers can also find support groups in their local area to meet others sharing their condition and provide an opportunity for discussion and interaction.

International IBD Awareness Day

May the 19th is International IBD Awareness Day and offers sufferers and supporters the opportunity to publicise the ways in which IBDs can affect someone’s life.

The only way in which sufferers of Crohn’s or Colitis are going to be able to feel more comfortable with their illness is if more people understand it and the taboo of a bowel related illness is removed.

Do you have an experience with an inflammatory bowel disease? Have your say in the comments section below, on Facebook or on Twitter.