The severity of Inflammatory Bowel Disease (IBD) among patients in India is growing due to late diagnosis and the government must set standard guidelines to check the health condition’s incidence and curtail the heavy cost involved in its treatment, experts said.
They also said that the guidelines should ensure early diagnosis of IBD, which, according to the World Gastroenterology Organisation, is a group of idiopathic chronic inflammatory intestinal conditions.
The two main categories of IBD are Crohn’s Disease (CD) and Ulcerative Colitis (UC). They both have overlapping and distinct clinical as well as pathological features.
Symptoms related to inflammatory damage in the digestive tract, include diarrhoea, constipation, pain or rectal bleeding, with bowel movement and tenesmus.
The current situation is such that neither India knows the real burden of IBD due to the absence of any registry or repository of data nor can it stop patients from reaching a severe stage of the condition due to wrong-treatment, the experts said ahead of World IBD Day on May 19.
They also said that a huge lack of awareness on the disease persists in the country.
"There is a need for standard guidelines for India on IBD urgently. It is a growing and emerging problem in this part of the world and we don''t know about the real burden," Dr Rupa Banerjee, a prominent gastroenterologist from AIG Hyderabad, said.
Banerjee, who has published several papers on IBD to study the disorder''s pattern, said currently the disease has a huge diagnostic delay in India.
"Every patient with the disorder at least visits five to six doctors for an average of two-three years only to realise he or she has IBD, and by that time it is too late, making it mandatory for them to prescribe to expensive drugs to keep it under control," she said, adding that 70 per cent of patients end up suffering complications.
The experts cited an example of how a 27-year-old engineer from Rajasthan, a patient of IBD, initially underwent medication for three years for what the physicians considered to be diarrhoea.
When the problem persisted and he came to the All Indian Institute of Medical Sciences (AIIMS) in Delhi. He underwent proper tests and he was told that he has severe IBD.
People in their 20s and 30s are affected the most by IBD due to their sedentary lifestyle and their lack of unawareness on the disease, professor of gastroenterology at the AIIMS here, Dr Vineet Ahuja, said.
“India has the highest burden of IBD in currently in Asia and that too the youth population in their 20s and 30s. They are the worst affected as it gets diagnosed late due to lack of awareness and is considered to be some normal stomach disorder, diarrhoea and others," he told PTI.
The disease’s prevalence in India is lower than in the West, with a population of over 120 million, the total IBD population in India being among the largest in the world.
It is not just about delay in diagnosis, but confusing IBD with intestinal tuberculosis. This is disastrous, said Ahuja, who has researched IBD in his over three decades of career at the AIIMS.
"It acts like intestinal tuberculosis. Many end-up having confusion between the two and take medicines, ending up in a disastrous health crisis," he said.
Ahuja said it is important to disassociate between the two. Proper early diagnosis is a must as on an average a patient with severe condition has to spend lakhs of rupees annually, which is not possible for everyone, he said.
"There certainly is a need for proper guidelines so that patients know what to do and how not to get mis-diagnosed," he said.
Talking about treatment of IBD patients in India, Dr Palaniswamy K R from the Apollo Hospitals in Chennai said India depends on drugs from abroad and research and development is not much advanced in the country.
"The problem currently in India is that not much of research and development is done here for medications. There has to be a policy for it since there is no awareness about it at the ground level," he said.