Pediatric Inflammatory Bowel Disease: Unique Considerations And Management

Introduction 

Inflammatory bowel disease (IBD) refers to Crohn’s disease and Ulcerative colitis. This article will be looking at paediatric IBD - when IBD presents in patients under the age of 18, and considerations that are to be taken when managing paediatric IBD. 

What is inflammatory bowel disease?

IBD is an umbrella term for diseases that cause inflammation of the bowel. The two main diseases in this group are Crohn’s disease and ulcerative colitis. Crohn’s and ulcerative colitis are two distinct diseases. Ulcerative colitis causes inflammation and ulceration of the colon (large intestine and rectum). It can affect any part of the large intestine, but it doesn’t necessarily affect the whole large intestine at the same time. It affects only the inner surface of the colon.

Crohn’s disease can affect any part of the digestive tract from the mouth to the anus, but most commonly the end of the small intestine. Crohn's disease also causes inflammation and ulceration. Crohn’s disease can affect the full thickness of the GI tract. 

IBD is a relapsing and remitting disease, meaning there are periods of no symptoms (remission) and flare ups (relapses). There is no time schedule as such to when the flare-ups come, and how severe they are. IBD is a chronic disease, there is treatment, and there can be periods of wellness and no symptoms, but there isn’t a cure.

There is no known cause for IBD, but it can run in families. In recent years, IBD has been increasing in incidence in children. It is thought to have both a genetic and environmental component. Many of the children who are diagnosed are also obese, and the rate of childhood obesity is going up as well. One theory is that it is due to the microbiome (the population of microorganisms that lives within the gut). Those with IBD tend to have fewer microorganisms than the general population. 

It is worth noting that IBD is not the same as IBS (irritable bowel syndrome). IBS can result in a change of bowel habits - constipation or diarrhoea and sensitivity to certain foods, but there is no inflammation of the bowel like in IBD. 

Symptoms of ulcerative colitis are usually abdominal pain and bloody diarrhoea which can contain mucus. There may also be bleeding from the rectum. Crohn’s disease also presents with abdominal pain and diarrhoea (which may or may not be bloody), but is often accompanied by extraintestinal symptoms of fatigue, fever, weight loss and reduced appetite. 

Treatment of IBD

IBD, being a chronic disease, does not have a cure, however, some medications are available to control flare-ups and maintain a state of remission. 

•  Common drugs include aminosalicylates such as Sulfasalazine, and corticosteroids, both of which are for reducing inflammation and are mostly used during flare-ups
• Immunomodulators, e.g. methotrexate. Used to maintain states of remission
• Biologic therapies target certain molecules that are part of the inflammatory process. These can be very effective at controlling flare-ups. Common drugs that are used are Infliximab, Vedozulimab and Adalimumab. Surgical intervention, i.e. removal of the part of the affected intestine can be an option in some cases, especially if medication has been tried and not been enough to manage a flare-up
• A colostomy (removal of the colon or the large intestine) can work for children with severe ulcerative colitis. The part of the small intestine that most commonly flares up in Crohn’s disease called the ileum- can be removed in a surgery known as an ileostomy. Enteral Nutrition therapy is also used in paediatric IBD. This involves a nutritional liquid that is either the only form of intake for the child or used as a supplement for the diet. This can help to give the digestive system a “break” from breaking down food and allow it to heal. The liquid contains adequate calories, protein and vitamins so it is good for children to give them adequate nutrition even when they are having flare-ups

Paediatric IBD considerations 

About a quarter of IBD cases are diagnosed before the age of 18 years, with the peak of incidence towards late adolescence and early adulthood. Below are some of the considerations when managing paediatric IBD. 

Growth failure 

Children are also at risk of malnutrition especially those with Crohn’s disease and who have been on steroids. Biological treatments have been shown to have improvement in growth in children, along with enteral nutrition.¹ Generally speaking, the better the disease control, the better the growth of the child.²

Psychological effects 

Psychological effects of IBD can be experienced by the child and their family. Hospital stays and flare-ups can be stressful, not only because the child is unwell but also because parents have to miss work, and children have to miss school. It is not just hospital admissions, but also outpatient appointments, tests and home care that take up time and energy. The child with IBD may miss out on school and opportunities to socialise as a result of their illness, which can reduce their overall quality of life. One study found that because of the lower health-related quality of life, children are at an increased risk of depression.³

Risk of cancer 

Both adults and children with IBD are at an increased risk of colorectal cancer (bowel cancer). The risk of cancer goes up along with the number of years since diagnosis. In one large study, colorectal cancer risk in ulcerative colitis has been reported to be 2% after 10 years, 8% after 20 years, and 18% after 30 years of disease. Therefore, when IBD is diagnosed in childhood the patient will be at an increased risk when they are an adult. There are “surveillance endoscopies” which are screening measures. Guidelines on frequency depend from country to country but generally start 8-10 years after initial diagnosis, and then every 1-3 years.

There are other types of cancer that those with IBD are at an increased risk of getting, although the main one is colorectal cancer. These are small bowel cancer, cholangiocarcinoma (cancer of the bile duct) and intestinal lymphoma (cancer of the lymph nodes that are in the area of the bowels). 

Moving to adult hospital services 

Transferring to adult services once the child grows up is also a known risk for relapse. This can be for a number of reasons. This can be from the break of continuity in care, or other life changes that may be happening at this time, such as moving away from home, starting university, a new career etc. This can lead to a lack of attendance at appointments or a lack of compliance with medication. Also, the parental role in care shifts significantly from child to adult care, where parents may have been the ones advocating for their child, and now the child may have more of a role in advocating for themselves. Having some form of a structured transition programme from child to adult services reduced the risk of relapse during this time.⁴

Novel treatments

With the incidence of paediatric IBD increasing, the incidence of patients who are no longer responsive to existing treatment is also increasing. Around one-third of patients (both adults and children) are becoming unresponsive to biological treatments and immunomodulators. Most clinical trials for new drugs involve adult participants, as there are many more issues around trialling new drugs in children. Some new treatments are already licensed for adults, which are having some initial positive results in children. These include Vedolizumab, Ustekinumab and 

Tofacitinib, all of which block various inflammatory pathways.⁵

Summary 

IBD has a number of considerations when it is present in children. IBD is a relapsing and remitting disease, so there are periods of flare-ups when the disease is active, and times of remission with no signs or symptoms. Management of IBD is by using drugs and/or surgery. There are drugs which reduce the inflammation during a flare-up and others which help to maintain periods of remission. Other factors for consideration in children are the risk of colorectal cancer when they are adults, transferring to adult care and their nutrition to ensure adequate growth. Managing IBD can be stressful for the children themselves as well as their immediate family. Overall, the better the disease is managed, the better the outcome for all involved.