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Inflammatory Bowel Disease – decoding how it affects children

Symptoms of IBD include fever, vomiting, frequent diarrhoea (with blood/mucus), abdominal pain, weight loss, urgency, etc.

Inflammatory bowel disease (IBD) refers to a group of chronic inflammatory disorders that primarily affect the gastrointestinal tract. The two most common manifestations of IBD are ulcerative colitis (UC) and Crohn’s disease (CD). While CD can involve any part of the digestive tract, UC specifically affects the inner lining of the large intestine. The exact cause of IBD is unknown, but it is believed to involve a combination of genetic, environmental, and immune system factors.

According to a 2010 estimate, there could be over 1.4 million people living with ulcerative colitis and Crohn’s disease in India. This number has likely increased over the years. In India, the prevalence of IBD is second only to the United States, where approximately 3 million people live with these conditions (the number was 1.6 million in 2010). Although IBD can develop at any age, there is a significant proportion of children, adolescents, and young adults among the affected population. The peak incidence of IBD occurs between the ages of 15 and 30.

Diagnostic Issues

Symptoms of IBD include fever, vomiting, frequent diarrhoea (with blood/mucus), abdominal pain, weight loss, urgency, etc. Many symptoms of IBD are similar to that of many other gastrointestinal disorders, which cause a delay in diagnosis at the primary care level. This is also compounded by the lack of awareness among primary physicians about the incidence of IBD in India. IBD is also often confused with Irritable Bowel Syndrome (IBS) which can have similar symptoms, but completely different management.

Diagnosing IBD requires extensive testing including blood tests, CT/MRI scans, colonoscopies (a camera is inserted through the anus into the intestinal tract to examine the intestinal inflammation), and microscopic examination of inflamed intestinal tissue. IBD can be misdiagnosed even with extensive testing at times. Intestinal Tuberculosis (ITB) is a condition which looks extremely similar to Crohn’s Disease, even under a microscope. Tuberculosis being endemic in India, often prevents accurate diagnosis and treatment.


IBD is characterized by its chronic nature, as it lasts for a prolonged duration without a definitive cure. Historically, the focus of treatment has been on relieving symptoms and achieving a state of “remission,” where symptoms are absent, as well as preventing symptom recurrence, known as “relapse.” As advancements in drug therapies have emerged, treatment protocols have evolved, aiming to achieve “deep remission” where the disease remains undetectable even at a microscopic level. However, it is important to note that not everyone achieves remission or deep remission, and the level of recovery and frequency of relapse can vary from person to person. The experience of IBD can differ greatly between individuals.

The drugs used to treat IBD often work by modulating or suppressing the immune system to reduce inflammation. However, these medications can also have significant side effects, including joint pain, osteoporosis, and an increased susceptibility to infections. Moreover, many of these drugs can be costly, imposing a financial burden. Aggressive disease combined with delayed or suboptimal treatment can lead to complications such as intestinal narrowing, fistula formation, and, in rare cases, intestinal perforation. Conversely, effective and timely treatment can induce remission and result in long periods without symptoms, improving the individual’s overall quality of life.

Apart from drugs, dietary interventions and psychosocial support can help improve quality of life and extensive research is being conducted to find out effective dietary and lifestyle interventions that can help reduce the suffering of those living with IBD.

Impact of IBD on Children

IBD in children (paediatric IBD) can be very different than adult IBD. Considering the chronic nature of the disease, the treatment approaches also differ. IBD in children can hamper proper growth as well. Dietary interventions such as Exclusive Enteral Nutrition (EEN) are often preferred over prescribing drugs. The invasive diagnostic modalities like colonoscopies and blood tests can sometimes be traumatic for children, and frequent CT scans are not optimal due to undesired radiation exposure.

IBD impacts children in many different ways that are not always medical. IBD causes urgency and partial incontinence at times, and this can be very difficult to deal with for a child, especially at school. This can cause anxiety and also lead to trauma. The fear of not being able to reach a toilet in time, especially at school, can significantly impact their psychological health. Many drugs also come with side effects such as acne, swelling of face and legs, mood swings, insomnia, etc. which can lead to distress for the child and reduced quality of life.

When medications and other therapies are not able to curb the disease, some children also have to undergo surgery to remove sections of affected intestine which can again negatively impact the mental and emotional health of the child. IBD can make it difficult for children to interact freely with their friends, effectively isolating them which can cause depression as well.

Children need to consume a proper diet to ensure proper growth of the child. However, with active IBD, that is not always possible. The pain and discomfort following consumption of any food item can lead to fear and anxiety associated with food. There is some evidence linking Crohn’s Disease and IBD to disordered eating behaviour.

As children grow, IBD continues to impact every aspect of their life. They face challenges in higher education and employment. Social isolation, depression, anxiety, body image issues, etc. negatively impact their mental health. An early diagnosis of IBD means continuously having to overcome challenges in all spheres of life.

Need of the Hour

IBD is an invisible, debilitating disease that is considered a disability in many regions of the world. There is a lack of public awareness about IBD in India. IBD affects not only the persons who are diagnosed but their families as well. People diagnosed with IBD require support in all spheres of their life.

In 2021, IBD Patient Support Foundation (India) – a non-profit, was constituted to advocate for and support persons living with IBD in India. It is the only non-profit in India dedicated to supporting people with IBD. It has been created by the patients, for the patients. The Foundation creates patient education resources, works to generate public awareness, provides medical/economic aid whenever possible, facilitates peer support groups, and provides free mental health support services for people living with IBD.

However, the existence of IBD Patient Support Foundation (India) is not enough. More multi-perspective partnerships are required. The government can help with select measures. It can include medications used to treat IBD in the National List of Essential Medications. IBD and conditions like IBD should be considered for inclusion in the list of legally recognised disabilities under the Rights of Persons with Disabilities Act. The government could establish advisory groups whereby a network of afflicted patients and practitioners managing IBD could share their experiences. People with proper knowledge of their condition have sustainable coping strategies which can help to produce better patient outcomes. The IBD population in India also needs a nationwide directory of IBD treating specialists and institutions across the country. A national IBD patient registry would help quantify the IBD population, provide essential statistics, and aid researchers as well. Insurance companies need to come up with policies for people diagnosed with IBD, instead of excluding them from coverage. All of the above mentioned measures can be implemented with the inclusion of patient leaders and non-profit organizations working on the grassroots level.

With proper coordination and collaboration between the government and grassroot organizations such as the IBD Patient Support Foundation (India), we can ensure a better future for our children who have to endure a lifelong battle with IBD.

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