Belfast Telegraph

Saturday 25 October 2014

Inflammatory Bowel Disease: Three people break their silence over living with the highly embarrassing condition

When TOWIE’s Sam Faiers fell ill on Celebrity Big Brother, it shone a spotlight on a highly embarrassing condition. Encouraged by the star’s openness about her diagnosis, three people here break their silence over living with IBD.

Former TOWIE star Sam Faiers
Ruth Kyle
Ever cautious: in remission, Ruth Kyle is still careful

It has to be one of the most socially embarrassing and debilitating long-term medical conditions to live with. Inflammatory Bowel Disease (IBD) is something that impacts on every area of the sufferer's life and more than 7,000 people in Northern Ireland are living with it.

Crohn's disease and ulcerative colitis – which are not to be confused with Irritable Bowel Syndrome (IBS) – are the two diseases IBD covers.

And while the majority of suffers are aged over 60, the disease can impact on children as young as three.

Cruelly, it mostly hits young men and women between the ages of 16 to 30 – at the time of their lives when they should be concentrating on their education, or establishing their careers or having a family.

Sam Faiers, one of the former stars of the scripted reality show The Only Way is Essex, was recently diagnosed with Crohn's disease after she appeared in Celebrity Big Brother earlier this year.

While the tabloids featured photographs of her extra slim figure and speculated on why the normally vivacious Sam seemed so quiet on CBB, only the 23-year-old knew of the intense stomach pain and crippling fatigue as well as persistent diarrhoea that lay behind her low-key appearance in the series.

Now, the young sufferers of this taboo medical condition are starting to fight back and to open up about how the incurable disease impacts on them.

We talk to three young people in Northern Ireland who are living with and fighting Crohn's.

'There's good days and bad days, and when it's bad, it's horrendous'

There's not a single day in my life that I don't wake up and wish that I didn't have Crohn's disease," says Christina West with feeling.

She's a young mum from Newtownards, Co Down who first noticed her symptoms of intense stomach pain and difficulty going to the toilet when she was just 16.

It became serious in the last trimester of pregnancy with her two-year-old daughter Karalee.

"I was losing weight and was constantly tired, with intense stomach pain and diarrhoea.

"This went on for a year and a half, even after I had the baby. My doctor just kept telling me I had Irritable Bowel Syndrome.

"But I knew something was badly wrong."

Christina was ultimately referred to consultant gastroenterologist Dr Grant Caddy at the Ulster Hospital in August, 2013, who diagnosed her with severe Crohn's.

On December 4, 2013, Christina became so seriously ill, she was hospitalised, requiring surgery to remove parts of her small intestine and colon as well as her appendix.

At 5ft 1ins, Christina's weight went down to under seven stone when she was at her lowest point and she was going to the toilet about 25 times each day.

She was unlucky that the operation did not bring about a clinical remission and her bowel is still badly inflamed.

Christina has also become intolerant to the immunosuppressant drugs offered to her and is hoping that she will be soon prescribed with expensive biological medication Inflixmab or Humira if funding is approved.

The 23-year-old calmly relates an truly embarrassing incident that happened to her that sums up the social humiliation that comes with Crohn's.

"Just recently my husband was out and I had to go and get nappies for Karalee. I thought that I would be able to make it but as soon as began to walk with the pram, it came on and I started to lose control of my bowel.

"When I got to the pharmacy, I told the pharmacist that I had Crohn's and desperately needed to use their toilet. But she asked me could I not wait? So even health professionals don't really realise how bad this condition can be."

Unable now to hold down a job because of her condition, Christina and her husband Paul do their best to maintain a good family life for their toddler daughter and their 15-year-old foster daughter Sarah.

"There's good days and then there's bad, and when it's bad, it's horrendous.

"Paul says that while I might be the one with Crohn's, our whole family has to go through it, watching me suffer from it. Karalee just keeps saying 'Mummy with the sore stomach'.

"What kills him is knowing that there's absolutely nothing he can do for me."

She adds: "It's a very hard illness to describe as nobody wants to talk about how many times they go to the toilet, or their bowel functions. It's very stigmatised. People look at you and say, 'Oh you don't look sick' or 'You've lost so much weight, you're looking great, you must be doing well.'

"But if you could turn my body inside out, you would see that I'm not doing well. There is something seriously wrong with me."

'I'm so lucky that my girlfriend stood by me'

Chris Dougan is a handsome young joiner who thanks his lucky stars that his girlfriend Eimear McKay chose to stand by him when he had to have an ileostomy last year – a fitting of an external bag on his stomach to collect his body's waste products – due to his Crohn's conditio

The 25-year-old from Maghera, Co Tyrone, was told recently that he should be able to have the procedure reversed in several months time.

It's an operation that he's praying will definitely happen sooner rather than later.

"It's looking good, but there's nothing definite about it," says Chris, the second eldest of five brothers and son to Geraldine and James Dougan.

"I'm still feeling very, very tired after having the operation, but it's definitely a great difference to what it was. I've come to accept my condition, but it's been very hard. I wouldn't been able to cope as well if I hadn't been told it could be reversed. That's what has kept me going, that and the support of my family and friends.

"I had only been seeing Eimear a few months before I needed the operation. But she's stood by me, she's been great, a real support.

"It would have been very hard to have found a girlfriend to accept my condition after I had the bag fitted."

Chris had been working in the Isle of Man when he experienced severe stomach pains.

"I just thought it was another flare-up. I could hardly stand up with the pain of it. It was a nightmare being away from home. When I went into hospital, I was told that my bowel had perforated in three places."

Chris first experienced symptoms of severe stomach pain when he was 14 or 15.

His mother kept taking him to his doctor and the hospital, insisting that more tests be carried out. He was eventually diagnosed with Crohn's at the age of 16.

"When I was first told that I had Crohn's, I'd never heard of it and didn't know anyone with it. I just kept thinking, 'Why me?'"

Before the operation Chris had been taking up to 16 tablets a day and even then, they would have often made him unwell. Sometimes the tablets worked to keep it at bay, but other times, I was really bad with it. I'd be sick and really tired and had bad diarrhoea. I had to stop playing [Gaelic] football as I just had no energy, it just didn't make sense to carry on."

However, he's philosophical about his condition and wants others to know more about Crohn's.

"Personally, I've found that once people know how it can affect you, they are grand, particularly my friends and my operation. Even when I was able to work, my employer was also really good about it."

'Fatigue is still a factor, there are times that I'm too tired to go out'

Ruth Kyle is one of the more fortunate of Northern Ireland's Crohn's sufferers as she's currently in remission and has been for the past five years.

The 30-year-old, who was diagnosed with Crohn's in January, 2003 when she was 18, is also currently able to work as an administrator in a software firm in Antrim.

"At first I thought I had just a tummy bug but when it continued on for months and I started losing weight, I knew something wasn't right. I didn't feel like eating and when I did, I would be sick.

"I had just got my A-Levels and had started a childcare course at Belfast Institute of Further and Higher Education. I had hoped to train as a teacher in a nursery school, but that wasn't possible because I was so ill

"I was lucky that the day after I had my colonoscopy, I was diagnosed with it very quickly so was put immediately onto immunosuppressants and steroids.

"We knew nothing about Crohn's. Back then, the information available on the internet wasn't what it is now, and what I found out online turned out to be quite scary. It was also hard to explain what was wrong with me to my friends.

"When it did at first hit me, it was very aggressive and my weight went down to six stone. I also had the rare side-effect, possibly from the tablets, of losing my hair, which is not what you want at 19. It took me a good four years to fully get back on my feet.

"Everything needs to be planned when you have a flare-up with Crohn's. There are days when I think that it doesn't impact on me much but if you are going out, you always need to know where the toilet is. Even in remission, there's an urgency – when you have to go, you have to go.

"It still affects my social life as there are times when I'm too tired to go out with friends. Fatigue is always a factor so I definitely will be using the new fatigue scale which is being launched as a means of assessing how bad symptoms are."

Towie Sam supports campaign

Ex-Towie star Sam Faiers is supporting a major new development that will help those living with Crohn's disease or colitis to better recognise the major symptom of fatigue.

A new fatigue scale to be used by sufferers to assess their symptoms has been developed after a four-year research project.

The work has been done by medical research and patient support charity Crohn's and Colitis UK, with support from the Big Lottery, and aims to highlight what is regarded as the 'most over-reported and under-managed' problem for people living with these debilitating medical conditions.

This fatigue scale was developed in partnership with researchers at King's College London, University College London and the Addenbrookes' NHS Trust.

Sam is helping the charity to fight IBD fatigue by improving awareness of this 'hidden symptom'.

She says: "The exhaustion I experienced was horrible, life-limiting and a typically untreated symptom for people with Crohn's or colitis.

"This new fatigue scale is a breakthrough and will make talking to my doctors much, much easier."

Helen Terry, director of patient support and information at Crohn's and Colitis UK, adds: "We are asking everyone with IBD to make sure that they have told their healthcare professionals about this under recognised symptom and suggest that they use this IBD Fatigue Scale to enable them to formally discuss their fatigue with their medical teams."

The fatigue rating scale is now available on the Fatigue in IBD microsite (www.fatigueinIBD.co.uk) and has a self-scoring facility.

For more information about Crohn's and Colitis UK, visit www.crohnsandcolitis.org.uk. The charity provides an information line (daytime), tel: 0845 130 2233, which is available to members and non-members alike who have queries about all aspects of this disease.

Diagnosis is just so difficult

Dr Graham Turner (40), is a consultant gastroenterologist who treats IBD patients at Royal Victoria Hospital, Belfast and Belfast City Hospital. Over the last 20 years, some 90% of sufferers would have required surgery for this incurable condition but today with improved medication to heal the bowel, this no longer the case.

He says: "You can't say that Crohn's is worse than colitis, both conditions can severely affect the sufferer but in different ways. Sufferers tend to be very stoic people and over-compensate at work – when they are able to – as they feel guilty about their condition.

"The cruel thing about Crohn's is that it's a completely random thing – there's nothing that sufferers have done to have caused this.

"IBD is a spectrum condition, everybody will have a different range of symptoms. Some people may have one part of the bowel very badly affected while others won't.

"Some people will be in remission when people can feel quite well, while others will have flare-ups.

"There are multiple, possible links, the first being genetic, then bacteria in the bowel and a possible environmental aspect to it. While there was some concern in the recent past about dietary factors causing it, there is no evidence to suggest that.

"Smoking also increases the symptoms you get with Crohn's.

"Crohn's can be difficult to diagnose but we would we would worry about a change in bowel habit, along with very bad diarrhoea with weight loss and bad ulcers or abscesses in the mouth and severe abdominal pain.

"Some of the symptoms are invisible and many times the sufferer will look very well but they will be very fatigued and tired. I think the fatigue scale will be very useful as this can be a very difficult topic to discuss with doctors."

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