Crohn’s disease: “The more we know, the faster we get to a cure!”
By Mirianna la Grasta (The Curious Youth)
“I discovered I had Crohn’s disease shortly after my 18th birthday,” says Federica Strippoli, student at the University of Bari, Italy. “It all started with abdominal pain, frequent diarrhoea and anaemia,” she continues, “after seven long months and a colonoscopy I was diagnosed with Crohn’s disease.” After the colonoscopy – a medical visual examination of the colon – the doctors realised that Federica’s condition was acute. In fact, the presence of inflamed ulcers in her intestine caused serious blood loss and made her go close to needing blood transfusion.
Although the name of this disease may not sound familiar to some people, Federica’s one is not a rare case: millions of people worldwide suffer from Crohn’s disease. This condition is more common in the “North” of the world, especially in urban areas, it affects mainly people of European descent, and it often appears in women.
According to the Health and Social Care Information Centre there has been a huge increase in the hospital admissions for the treatment of CD since 2003-4. English hospitals, for example, admitted almost 5,000 patients in 2003-4, and this number quadrupled after ten years. Overall, the disease affects at least 115,000 people in Britain.
Despite its seriousness and its growing spread, this syndrome is still underestimated by the worldwide community.
“Crohn’s disease is an inflammatory chronic condition, which can affect any part of the digestive system, from the mouth to the anus,” explains Richard Cohen, consultant colorectal surgeon at the University College London Hospital. The name of the disease comes from the doctor who reported it for the first time, in 1932: Burrill Bernard Crohn.
“It usually appears in the final part of the small intestine and in the colon,” adds Vito Annese – gastroenterologist at Careggi University Hospital, Italy.
From an anatomical point of view, the inflammation caused by the disease damages the inner wall of the intestine. Fabio Quondamatteo, Professor of Anatomy at the University of Glasgow, specifies that since the intestinal inner surface is essential for the reabsorption of nutrients, “its damage may have negative consequences on the state of nutrition of the affected person.”
Abdominal pain, diarrhoea, anaemia, depression, osteoporosis, weight loss, mouth ulcers, joint pain, fatigue and fistulas are just some of the symptoms offered in the Crohn’s disease “package”. “Yes, therapy can help you, but I am not totally positive about my condition,” Federica Strippoli confesses. She continues: “It’s not good news that I should rely on medications and injections for the rest of my life!”
Indeed, the main lack of CD is that, Vito Annese says, “its causes are still unknown” to the medical community, and therefore the affected people are bounded to a life-long condition, “with no possibility to recover”. As a matter of fact, a future cure could only be found if the doctors discover what the initial mechanism that triggers Crohn’s is.
At the moment, as Richard Cohen underlines, the only known thing is that “the autoimmune basis of the illness is given by a combination of the genes that a person inherits plus an abnormal reaction of his immune system at the intestinal level.” He adds that this uncommon immune reaction could be triggered by environmental factors.Fabio Quondamatteo
According to Vito Annese, other triggering causes could be smoke, the life-styles and alimentary habits of modern society, an excessive use of anti-inflammatory and antibiotic drugs, or an immune response to a common intestinal infection that evolves in an irregular way.
“Nowadays, the disease is dealt with by a multidisciplinary approach,” Richard Cohen explains.
“In most cases”, says Vito Annese, “the pharmacological approach allow us to control the patient’s symptoms, and to safeguard his quality of life.” He adds that a biological alternative is now available for patients and that other experimental cures are carried on in specialised centres all over the world.
Federica Strippoli, for example, has tested both therapies: “At the moment,” she says, “it seems that only the biological cure keeps my disease under control.”
However, there are subjects who do not tolerate any kind of approved cure and try experimental ones. Jeffrey LeVine, an American Crohn’s activist and blogger, found it difficult to heal his symptoms with drugs, as they caused side effects. “A thing that helped me,” he says, “was going on a Low Dose Naltrexone – an opioid antagonist, normally used to wean people off drugs.” Even though this is not an approved drug for CD, some researches show it fights the inflammation.
The second approach, surgery, is used when physical complications arise or there is lack of response to the therapy. Fabio Quondamatteo says that a protracted inflammation of the gut may determine “a narrowing of the intestinal tube”, which can potentially cause an intestinal occlusion: “This is an acute condition that needs to be treated surgically.”
“Unfortunately,” Vito Annese warns, the disease is relapsed, thus the risk of being treated surgically increases over the years.” Generally speaking, he argues, “after 10 years from the diagnosis there is a 30% risk of doing surgery.”
“I think we should not rely just on medications,” states Julia Balaz, – coach of the East London support group for Crohn’s and Colitis UK – “we are supposed to be natural beings, without chemical substances in our body.” Based on her experience, she strongly believes that stress and diet are two crucial factors that could cause Crohn’s disease and other Inflammatory Bowel Diseases. This is the reason why she changed her whole life, avoiding stress, doing meditation, focusing on sports and going on the Specific Carbohydrate Diet: “All this has helped me a lot, and now it is a year that I am without the medications.”
On the other hand, Jeffrey LeVine believes that the disease is not caused by diet of anxiety: on the contrary, “these are just products of the illness”. For instance, since he had CD, he developed a strong intolerance to gluten.
Federica Strippoli, instead, thinks that stress and diet could have a strong impact on the disease’s path. She argues: “I have learned that my mind’s state as well as eating sour foods and diary products lead to an easy inflammation of my intestine and, as a consequence, I start having symptoms.”
As it has been revealed by Professor John Hunter, a recognised authority on IBD, the foods that a person with CD does not absorb are fermented by his intestinal bacteria, and this activity could provoke Crohn’s autoimmune reaction. His study shows, thus, that a modulation of the diet reduces the bacteria’s activity and allows longer remissions.
In the 1990s, Prof. Hunter and a group of dietitians developed a diet for the treatment of CD, called LOFFLEX (Low Fat Fibre Limited Exclusion Diet). The latter has been updated in 2013. Ali Todd, a dietitian who worked with John Hunter, states that this diet is becoming “very popular amongst young people with Crohn’s disease”, as it is an effective alternative to the drug therapy and its side effects.
In the first place, this diet rests the patient’s gut. Furthermore, it allows him to discover which are the foods that trigger his symptoms, whose he should avoid to maintain remission. “The most common ones,” says Ali Todd, “happen to be gluten, corn, diary and yeast.”
“I know it is difficult,” says Federica Strippoli in an encouraging tone, “but anyone who has Crohn’s should stay calm and have faith in a future cure: we will go back to a normal life!”
Finally, Jeffrey LeVine argues: “Yes, it is a nasty disease, you might feel bad, spend a lot of time in the hospital, have no energy. But, there is a huge community out there to help you out to achieve whatever you want to.” “Never stay quiet!” he concludes, “the more we talk about the disease, the more people will know and learn about it. The more we know, the faster we get to a cure.”
For more information and support on Crohn’s Disease please visit: Crohn’s & Colitis UK.