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My stomach pain was crippling - but the solution horrified me

By Isla Whitcroft for MailOnline
Updated: 17:45 EST, 3 October 2011

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'Everything revolved around my colitis,' said Caroline Bramwell

Caroline Bramwell was 39 and three months pregnant with her second child when she started having stomach cramps.

‘My GP suspected I had a food intolerance or possibly coeliac disease, but the tests came back negative,’ she says.

Over the next few months Caroline felt increasingly unwell.

‘I started to suffer from stomach bloating, I was going to the loo more often and my stools contained mucus,’ says Caroline, 45, a PR and marketing consultant from Ilfracombe, Devon.

Concerned, her GP referred her to a gastroenterologist, who diagnosed ulcerative colitis, but she had to wait until the sixth month of her pregnancy to have the definitive test — a colonoscopy.

It revealed that a major portion of Caroline’s lower bowel was affected with ulceration.

Ulcerative colitis is an inflammatory bowel disorder that affects 120,000 Britons and is caused by the lining of the large intestine becoming inflamed and ulcerated.

Experts believe it’s an auto-immune condition, in which the body turns against itself and starts to attack the bowel lining.

Once the process of inflammation has begun, the immune system becomes even more aggressive, resulting in more irritation. The condition tends to appear between the ages of 15 and 30.

While pregnancy is not a cause, the weakening of the system that occurs while a woman is carrying a baby can result in a worsening of the condition, as Caroline experienced.

Half of sufferers have only mild and occasional symptoms, such as uncomfortable bowel movements and low-grade cramps, and for these people a short course of anti-inflammatory drugs such as steroids is enough to calm the flare-ups.

However, some cases are much more severe, with patients passing blood or mucus in their stools and suffering severe cramping and constant diarrhoea.

Caroline’s specialist told her that though there is no cure for ulcerative colitis, once she had given birth she would be put on a low dose of steroids that would calm the inflammation.

But almost immediately after her daughter Natasha was born in April 2005, Caroline suffered a flare-up.

‘Everything I ate went straight through me,’ she says. ‘It was not unusual for me to go to the loo up to ten times a day.

'It was not unusual for me to go to the loo up to ten times a day,' said Caroline

'As a result my body was not absorbing any nutrients. I tried to breastfeed Natasha, but I had hardly any milk.

‘In two months I lost two stone — I suffered terrible fatigue and was in dreadful pain. But I had a baby and a two-year-old, Robert, to look after.

'Luckily, my husband Craig shouldered the lion’s share of looking after them.’

Her doctor then put her on steroids.

‘It was meant to be a temporary measure,’ she says. ‘Instead, I ended up on them for the next four years and my life became a juggling act around my drug regime.

‘The side-effects were awful. My face was puffy and I went from a size 12 to a size 16. Looking in the mirror made me cry. I also had terrible mood swings.’

She continued to suffer with chronic diarrhoea which left her housebound.

‘Everything revolved around my colitis,’ says Caroline. ‘I felt I couldn’t take my son to school or leave my office to go to client meetings, so I was losing business.

‘I had to wear incontinence pads day and night because I was terrified I was going to have an accident. It was a wretched time.’

Up to 40 per cent of those with ulcerative colitis eventually undergo surgical removal of the inflamed area of the bowel.

For some this means having an ileostomy — where the end of the small intestine is brought out through an incision in the stomach, meaning they must use a colostomy bag.

Repulsed by the idea of wearing a bag, Caroline refused to discuss it when her consultant first suggested surgery.

‘I was worried it would make a noise in business meetings, and I wouldn’t be able to swim, have sex or wear slim-fitting clothes anymore.

‘All I could think was that I was a young woman in the prime of life and that I would never feel attractive again.’

But Craig, 46, a graphic designer, was desperate for his wife to get better and began to research the operation. Slowly, Caroline started to come round to the idea.

‘I thought: “What am I doing?” ’ she says. ‘I was miserable, ill and felt I was failing as a wife and mother. I needed to do something about it.

‘I told my consultant and he was relieved. Drugs weren’t working for me and he felt he had run out of things to try.’

Experts believe ulcerative colitis is an auto-immune condition, in which the body turns against itself and starts to attack the bowel lining

The consultant suggested a temporary ileostomy — keeping the colon and rectum in place and diverting the small intestine on a temporary basis in the hope the inflamed tissue would heal without the constant irritation of food passing through. But he admitted this was unlikely to work.

‘In the end, after talking it through with Craig, I decided I didn’t want to go through a series of operations that might or might not work. I just wanted to get my life back as quickly as possible,’ says Caroline.

In March 2009, she underwent a full ileostomy — her entire large bowel and rectum was removed using keyhole surgery.

In a world first, the surgeon used only one incision rather than the usual four, and then fitted the bag over it.

‘I don’t have a single scar, and I went home just three days later,’ says Caroline.

Best of all, after five years of cramps and diarrhoea, she is free from all symptoms.

‘I woke up after the operation and panicked because I hadn’t taken my drugs. The anaesthetist said: “Caroline — you don’t need them any more.”

'That was a wonderful moment. So was realising that I was pain-free for the first time in years.

‘It took six months for the steroids to get out of my system and my body to get back to normal.

'Now I am a size 12 and love buying clothes. I have energy to play with the children and can go out with friends at any time without worrying.’

And she’s so busy enjoying her new life that Caroline hardly notices her stoma bag.

‘The bag sits flat against my stomach and the children don’t even notice it when they cuddle me. I was shy about Craig seeing me with it, but I just treated myself to some lovely nightwear and he seems very happy.

‘I don’t go around telling people about it, but if someone asks I am happy to talk. A stoma bag is nothing to be ashamed of.’

Caroline is now in the process of organising an exhibition early next year showcasing products and treatments available for people with ulcerative colitis.

‘Despite thousands of people having them fitted every year, people are too embarrassed to talk about stoma bags, let alone admit they have one,’ she says.

‘As a result, all these myths have grown up around them, and people hold out against having them — just as I did. I wish I’d had my bag years ago. I’ve finally got my life back.’

For more information on The Good Digestion Show, go to www.thegooddigestionshow.co.uk