A 10-year-old, Durga, was recently brought to us by her parents from their village in Andhra for a consultation. They were worried that she was not thriving as well as her classmates and friends of the same age. She was pale, and had recurrent fever over the previous few months. She had also developed recurrent bouts of loose stools, sometimes bloody. Durga had lost a lot of weight and no longer resembled the child from a photograph taken during Diwali. She underwent a number of tests which revealed that she was anaemic and had raised inflammatory markers. An ultrasonogram of the abdomen showed thickened bowel walls with increased vascularity (blood flow). She underwent a diagnostic upper gastro-intensional endoscopy and colonoscopy, which revealed multiple ulcers in her intestines. Biopsies from various segments of her bowel helped confirm the diagnosis. Inflammatory Bowel Disease (IBD).
IBD is a chronic autoimmune condition where the white blood cells or the body’s soldiers mistakenly identify cells in the human gut as their enemy and decide to attack it, causing ulcers in the mucosa. As a result children may develop fever, abdominal pain, loose stools and at times bloody diarrhoea. These children may not absorb macro and micronutrients and hence lose weight, muscle mass, become anaemic and may have vitamin deficiencies.
I explained to the parents that there were two types of IBD — Ulcerative colitis which affects only the large bowel and Crohn’s disease which can affect any part of the gut from mouth to anus. Sometimes when we find it difficult to distinguish between these two conditions, we label itIndeterminate Colitis for a while until it evolves into one of the above conditions.
‘Why did this happen to my child?’
This calls for a longer answer. Almost 20 years ago when I trained in paediatric gastroenterology at Sanjay Gandhi Postgraduate Institute, Lucknow; this condition was considered very rare in Indian children. Our adult gastroenterology colleagues saw IBD patients more frequently than we did (pediatric gastroenterologists). It was only when I trained at the Royal Children’s Hospital, Melbourne a few years later that I found that IBD in Australia was very common in children too. Then, I wondered about the value of learning so much about a condition that is very common in the Western world but so rare in India. Next, I started to hear reports of IBD rising in incidence in children of Indian origin parents who migrated to the West. Gradually it became clear that IBD can affect children of all ethnicities and socioeconomic status. 15 years later, I now treat more than a hundred kids with this condition from all over India.
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But that was just a backgrounder.
There is no easy answer to the question ‘Why does IBD affect my child?’ Medical research is still ongoing to pinpoint the exact cause. What is known is that children who are susceptible to IBD often have a weak or dysregulated immune system which responds inappropriately to environmental triggers such as a virus or bacteria. There may also be genetic factors which predispose these children to IBD as sometimes it seems to affect members of the same family. The human gastrointestinal tract harbours millions of microorganisms; often referred to as gut microbiota, and this plays an important role in IBD. The gut microbiota of each individual is unique and influences health and disease. The nature and composition of gut microbiota can be altered by frequent antibiotics. Similarly, westernisation of food habits and lifestyle is also strongly linked to changes in the gut microbiota and a predisposition to develop IBD.
How can we treat and cure her?
IBD - Crohn’s disease can be treated with very effective medications that control the inflammation and suppress the dysregulated and overactive immune system. These medications include steroids and a new class of drugs called biologics. But it is also possible to control the inflammation in the gut and heal ulcers in some children with the milder variety of Crohn’s disease; without drugs using ‘exclusive enteral nutrition’. Once the inflammation or acute flare-up of the disease is under control, we aim to keep the disease under control (remission) for several years using milder immunosuppressant drugs and a special Crohn’s disease exclusion diet (CDED).
IBD – Ulcerative colitis is also treated similarly, though another group of drugs called ‘aminosalicylates’ are used to treat milder forms of Ulcerative colitis. Exclusive Enteral Nutrition has not been found to be useful in treating Ulcerative Colitis.
Both forms of IBD are often chronic and need several years of medical therapy. A small minority of children who have remained in very good control (remission) for several years continue to do well even after stopping medications. The larger majority of children seem to need medications to keep the disease in remission. Further, a small proportion of children who have uncontrolled inflammation develop complications requiring surgery. But the good part is that science is rapidly evolving and new medications are being developed to treat IBD. Besides the world is much better connected today than before making it easy for developments in research in one part of the world to reach another.
Durga listened to all of this in rapt attention and asked me if she had Ulcerative colitis or Crohn’s disease. I replied — Crohn’s disease. She then asked me if it was mild or severe; to which I replied that she had a severe flare-up. She understood that simple diet therapy would not work and the family agreed to medication. With every week, she grew stronger gained weight and achieved remission. She went on to receive milder drugs and continued to remain well for 2 months before yet another flare-up. She was disappointed; but ready for the challenge. She was then commenced on ‘biologics’ and remained in a very good remission for the next two years; after which they were stopped. She has now remained in very good remission for the last three years without any flares and wants to study to become a doctor.
Durga is one of several success stories treated at our outpatient IBD clinic, but many struggle due to financial constraints and the very high cost of ‘biologics’. Some suffered because of the lack of timely and proper diagnosis of IBD. This is possibly because IBD has protean clinical manifestations ranging from simple anaemia & failure to gain weight to fever, abdominal pain and loose stools. Patients as well as doctors often struggle to diagnose IBD and it is often mistaken for tuberculosis. There is, hence, a need for increased awareness of this condition, both among the general public and medical community.
(The writer is a senior paediatric gastroenterologist with a special interest in IBD at Kanchi Kamakoti CHILDS Trust Hospital, Chennai. The hospital recently hosted a national paediatric IBD conference to observe celebrate World IBD week — May 19 to May 26.)
