London - When Justin Hansen was told his gut condition meant he’d have to follow a severely restricted diet for the rest of his life, he was devastated. But then he learned exactly how it would be restricted.
“Apparently, burgers, chips, chocolate, full fat milk, cakes, biscuits and sausage rolls are all ideal foods for me,” says Justin.
“The dietician recommended I boost my calorie intake with snacks such as sugary doughnuts, crisps and treacle pudding.
“I could hardly believe it. I’d have to eat almost exclusively junk food to stay alive.”
Justin, a 51-year-old former IT consultant who lives with his girlfriend in Brighton, has Crohn’s disease, an inflammatory bowel condition affecting 60,000 Britons.
Crohn’s causes symptoms including pain, diarrhoea, vomiting, weight loss and fatigue, but in some cases, such as Justin’s, it leads to a complication known as intestinal failure. Here, the inflammation destroys the tissue of the bowel so badly that surgeons must cut out sections of the intestine. Patients can live without a complete bowel, says Dr Simon Gabe, a consultant gastroenterologist at St Mark’s Hospital in Harrow, London, who treats 300 intestinal failure patients a year.
“The average gut varies in length between 3.5 and eight metres and the critical amount you need to stay alive is one metre,” he says.
The problem is that when the intestine is shortened, food passes through so quickly that its calories, nutrients, fluids and electrolytes (salts) are not absorbed into the body.
Only half of the nutrients will be absorbed, so generally a patient needs to eat 50 percent more food to make it up. If the bowel is very short, as Justin’s is, they must eat more.
What’s more, going against all received wisdom about nutrition and health, patients must avoid high fibre foods, which pass through the gut quickly, and stick to carbohydrates, fat and sugar.
“We recommend eating a high calorie, but low volume diet,” says Dr Gabe. “Fatty, high salt, refined carbohydrate foods such as white bread and cakes are best because they are calorie dense and low in fibre.
“Patients can eat as much as they can manage, and they certainly won’t develop a weight problem. If they can’t consume enough calories, they will lose dramatic amounts of weight and waste away, so they are also given daily intravenous nutrition into a vein through a central line in their chest to ensure that they are getting adequate calories.
“The liquid food passes directly into their bloodstream. Patients are taught to administer this and most do it overnight for eight hours, sometimes every night.”
Every year 4,000 people in Britain are put on this diet as a result of a short bowel. As well as Crohn’s, intestinal failure can be caused by mesenteric infarction, where a blood clot blocks the gut and the colon has to be removed by surgery.
Another cause is intestinal dismotility, where the gut loses the ability to propel food and becomes blocked, sometimes as a result of a stomach virus, or a complication of diabetes or stomach surgery.
Justin’s symptoms started in October 2001. Over the following months he developed swollen joints, hundreds of mouth ulcers and infected nail beds.
“I’d always been fit and healthy, but suddenly it felt as if my body was packing up on me - I was struggling to walk a short distance,” he says.
“At first, the symptoms were so random, no one could work out why - I visited my GP umpteen times. It wasn’t until 2003, when I had diarrhoea and was vomiting, that anyone took it seriously.”
Justin’s sister Lou, a nurse, sent him to A&E. An X-ray of his bowel showed his colon was in danger of rupturing.
Further investigations revealed Justin had Crohn’s disease. He had an emergency operation to remove part of his large intestine, and then an ileostomy to remove his bowel before being fitted with a colostomy bag.
“That was hard enough to deal with, but then a week after surgery complications developed,” says Justin.
“My bowel became ulcerated - I was desperately ill and spent nine months in hospital. I didn’t eat for five months - my bowel was falling apart.
“At one stage my weight dropped from 11½st to 6st (I’m 5ft 11in). A few times I closed my eyes and hoped I’d never wake up.”
Doctors stabilised Justin’s condition and after five months he began to eat and drink again. It was then he was told about the diet he’d have to follow for the rest of his life, with doctors advising he needed 4,000 to 5,000 calories a day.
“It was funny that I had packets of crisps on prescription,” he says. “But at first I struggled to eat even one bag.
“Gradually, though, I began to eat more. I always had one eye on the calorific content - I remember being so desperate to top up my calories I’d mix milk with powdered milkshake and ice cream.
“Ironically, I don’t like junk food or chocolate much. The foods I craved were things such as apples and salads, which are bad for me.”
A typical breakfast would be cereal with sugar, white toast with butter and jam and a full English of sausage, bacon, eggs and hash browns.
Recommended snacks for mid-morning include sugary doughnuts, crisps or a cream cake. Lunch can be sausage rolls, pasties or a sandwich with butter and/or mayonnaise.
In the evening, patients are encouraged to eat meat, fish or chicken with potatoes, rice or pasta, lots of salt, few vegetables and a creamy rice pudding, treacle pudding or tapioca with jam and cream.
Patients are also given supplements to ensure they get all the vitamins and minerals they need.
However, Justin struggled to maintain the calorie intake and after more complications and surgery had a permanent intravenous nutrition line fitted. He is studying for an MSc in occupational therapy and says his health has stabilised.
Alison Culkin, a specialist dietitian at St Mark’s Hospital who advises Justin, says: “These patients can find it very difficult to consume so many calories because they often have bowel problems, feel nauseous, have a fluctuating appetite or a colostomy bag.”
Researchers at St Mark’s are developing a grow-your-own bowel technique, which will potentially cure patients like Justin. Scientists aim to be able to take tissue from a patient’s bowel and use stem cells to grow new bowel tissue in laboratories - avoiding the problem of rejection.
Justin and a team of friends recently completed a kayak trip from Manchester to London to raise money for thehospital.
“I want to highlight the problems intestinal failure patients face and give hope to newly diagnosed patients that you can lead a normal life.
“I’m living proof you can do extraordinary things. I just wish my GP had diagnosed Crohn’s disease earlier. Maybe I might never have had to go through this.”
* To donate, go to gutlesskayaking.com or justgiving.com/justinhansen. - Daily Mail