Shropshire Star

When disease wreaks havoc

Physical symptoms of an illness can be life-changing and frustrating, but in some cases the invisible effects can be just as hard to deal with.

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For sufferers of Crohn's and Ulcerative Colitis, both types of Inflammatory Bowel Disease, physical symptoms are bad enough.

The unpredictable effects can wreak havoc on daily life, and force patients to rule out social events, or even work.

But for many, the invisible symptoms of the disease can be just as bad, if not worse.

Alongside the unpredictable cycle of flare-up stages and remission stages, patients can suffer from serious fatigue at any time.

And for many, this has an immense impact on daily life.

Barbara Latham, of Shrewsbury Road, Hadnall, was diagnosed with Ulcerative Colitis around the age of 40.

She said: "When you're having a flare-up you really can't carry out any normal activities, because you're in such pain or rushing to the toilet.

"You can't function as you normally would at all, and it has a massive effect on your life."

At the age of 51, Mrs Latham had to take early retirement from her role as deputy headteacher at a primary school because of the illness.

She said: "I struggled on at work for 10 years, but because of the illness I just couldn't keep going.

"Obviously we were on less money because I'm on to my health pension, but my quality of life is so much better now and it's easier to manage my illness."

Now 61, Mrs Latham continues to deal with the fatigue as a factor in her everyday life.

"The fatigue can happen even when you have quiet times and are in remission," she said.

"It is really difficult. It's hard to plan for social events and different things because I really just have to see how I feel on the day."

Supporting charity Crohn's and Colitis UK has revealed that the two illnesses affect about 260,000 people in the UK. IBD fatigue alone affects 70 per cent of patients during flare-up periods, and 50 per cent of people when in remission.

Mrs Latham said: "Hopefully, I'm in remission at the moment, and sometimes if you think a flare-up is coming on then you can try and prevent it by taking medication, but that doesn't help the fatigue.

"The problems come when you push and push yourself, and that's the worst thing to do in that situation – when you have a bout of fatigue, you just have to rest."

Despite being such a common symptom, there is little that can be done to combat it, and so sufferers must try to fit a normal life around it.

"There are many things that we have to work around, because as well as the fatigue, my joints become inflamed," Mrs Latham said.

"Most of our children live further up north now, and it becomes very difficult to visit them as I can't sit in the car for more than 20 minutes without being in pain."

Supported by her family and husband Martin, Mrs Latham says that the illness doesn't just affect her, but also those around her.

She said: "Social events like Christmas are very hard, because I can't cook for everyone and host family – although last year they did cook for me, which was nice!

"They are so supportive, and without my husband I would really be lost."

While many understand that the disease causes inflammation of the colon, rectum and gastrointestinal tract, many do not realise the serious effects of fatigue.

Mrs Latham said: "Nobody quite understands how I can be ill. Sometimes I'll look fine on the outside. I make the effort to look good because it makes me feel better, but it doesn't mean I'm not exhausted.

"It's hard to explain to people, especially those that don't know me so well; they just think I'm fine."

But now, Crohn's and Colitis UK has targeted this symptom specifically and is trying to raise awareness of this effect.

Christian Rogers, spokesman for the charity, said: "It's one of the most common yet least understood symptoms of IBD.

"Described as the invisible symptom, doctors – in particular GPs – find it hard to discuss IBD fatigue with patients, unlike the more visible symptoms such as abdominal pain or diarrhoea which they can look into and treat."

So to combat this obstacle, the charity with support from the Big Lottery Fund has developed an online Fatigue Rating Scale.

Now people with IBD will be able to determine what level their fatigue is at and take this information to their GP.

Mrs Latham said: "I think it's very useful; it means that you can measure the fatigue and it will tell you if you should seek help.

"The IBD nurses are very helpful and can give advice when you're having a flare-up, but this will now give the needed help for anyone with fatigue."

For more information on Crohn's or Colitis, visit the charity's website www.crohnsandcolitis.org.uk or call 0845 130 2233. And to use the Fatigue Rating Scale, visit www.fatigueinibd.co.uk

Coping – Carrie Grant

TV's Carrie is winning her battle against illness

TV personality Carrie Grant has had Crohn's disease since she was a teenager.

The mother of three and voice coach still has excruciating stomach pains that stop her from eating for weeks.

"It makes me smile when I hear of people not eating for a few days," she says.

"A couple of years ago I didn't eat for 90 days. Some sufferers can go for months without symptoms but I suffer constantly from stomach ache and diarrhoea.

"I live with low-level pain most of the time, although if I'm struggling I take paracetamol.

"I've lived on nutritional drinks, but I haven't had to do that for the last two years, which is great because they taste horrible."

Carrie says coping with the disease is more of a mental battle than a physical one, but one that she's winning. "Crohn's never goes away but I feel a lot more in control of it now than when I was younger," she says.

"It used to really get me down, which just made me more ill, but now I'm a lot more positive.

"As I get older I find that having a positive frame of mind really helps. If I wake up with no pain I think, 'isn't this great' and really appreciate it."

Carrie is one of about 90,000 people in the UK who have the disease, which causes inflammation, ulcers and scarring. Carrie, who lives in north London with husband David and their daughters, Olivia, Talia and Imogen, started feeling ill in November 1983.

"I had diarrhoea and was losing blood," she says. "Blood tests showed nothing, but the symptoms persisted for two years. By then I was getting skin rashes, lumps down my shinbones and mouth ulcers.

"Then I saw an item on TV about Crohn's disease. I knew it was what I had. When the consultant confirmed it, I felt relief because I thought I may have had cancer."

It was devastating news for Carrie, who thought her life and career were over. Around this time she met her future husband David.

"Tests showed that I had damage throughout my large and small bowel," says Carrie. "The Crohn's had left certain sections or 'strictures' withered.

"This left me unable to absorb food through the bowel lining, which caused the diarrhoea and pain. I was put on anti-inflammatory drugs.

Surgery

"My bowel was in a terrible state, so the next step was a food elimination diet. I was intolerant to dairy products, pineapple, nuts, lamb and caffeine. But my bowel was so damaged that in May 1989 I had to have bowel surgery."

It was the worst time of Carrie's life. Eight inches of her large bowel was removed, and doctors found that her bowel was a lot narrower than it should have been, which is why she was in so much pain.

"I needed colonoscopies every three months to try to alleviate the problem," she says. "There were times when the hospital gave me painkillers, which stopped working after two hours. I knew there was still had two hours before they could give me my next injection, and it's agony."

Ten years later, in January 1999 after a colonoscopy, part of Carrie's bowel split and she was rushed to hospital for an emergency blood transfusion.

"It increased my determination not to let it ruin my life," says Carrie. "I'm just grateful for every day when I'm not in too much pain.

"Of course it can be hard, especially with family and friends. I sometimes find it difficult to watch David eat.

"And if we're out with friends, I have to sit there with a glass of water, smelling their food."

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