Managing Ulcerative Colitis in Children

What to Know and Expect as a Parent

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Ulcerative colitis is a common form of inflammatory bowel disease (IBD). It is an immune-mediated disease that affects the large intestine by causing ulcers and bleeding. However, signs and symptoms of the disease may occur in other parts of the body.

While IBD is often diagnosed in young adults, ulcerative colitis can also be diagnosed in children. Ulcerative colitis in children is being seen more frequently, especially in kids under the age of 5 years.

A teen lays in bed holding her stomach with her cell phone nearby.

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Children with ulcerative colitis have different needs than adults. Some of the challenges include being different than peers, such as missing school for appointments or needing to eat different foods. Working with schools and teachers in a new way is also a factor, which may impact the entire family. 

Learn more about how this disease affects kids and the unique ways in which pediatric ulcerative colitis is managed. 

Ulcerative Colitis Symptoms 

The signs and symptoms of ulcerative colitis can include:

  • Abdominal cramps
  • Abdominal pain
  • Blood in the stool
  • Diarrhea
  • Mouth ulcers
  • Mucus in the stool
  • Urgent need to move the bowels (tenesmus)
  • Weight loss 

People with ulcerative colitis may also have symptoms outside the digestive system. Delayed growth can occur in ulcerative colitis, but it is less common than with the other main form of IBD, Crohn’s disease.

These are called extra-intestinal symptoms and could include: 

Emotional Aspects of Symptoms

Kids and teens with ulcerative colitis may find the symptoms to be embarrassing. Having to limit food choices or go to the bathroom more often than friends can be difficult to explain.

Parents may want to role-play with their child to learn how to cope with these problems. Offering kids some language around symptoms and a simple explanation of ulcerative colitis may be helpful and empowering.

Caregivers may also want to talk with classroom teachers and parents of their child’s friends about symptoms and bathroom needs.

Causes

Ulcerative colitis is considered an immune-mediated condition. It is thought that the disease could be caused by a connection between genetics, environment, the immune system, and the bacterial makeup in the digestive system.

People with IBD are shown to have a different makeup of bacteria in their digestive system than people who don’t live with the disease.

There are more than 150 genes found to be associated with IBD. However, not every person who has the genes will go on to develop a form of IBD. It’s not fully understood how all the factors involved lead to a person developing ulcerative colitis.

Diagnosis

For children with ulcerative colitis, the first signs that might make a parent take them to a doctor include bloody diarrhea and abdominal pain. Several different types of tests might be used to diagnose the cause of the signs and symptoms.

Lab tests include:

Imaging tests can include:

Treatment

Treatment for ulcerative colitis in kids can include medications, lifestyle changes, adjusting diet, and surgery. Some treatments for adults might not be considered for use in kids, such as medication that comes in the form of suppositories or enemas.

A pediatric gastroenterologist will help select the best type of treatment for each child with ulcerative colitis.

Medications for ulcerative colitis will be prescribed based on a number of factors. Some of these could include patient and parent preference, the severity of the disease, the age of the child, and cost and access.

Some types of medications are prescribed for a short period of time to help get inflammation under control. Others are used long term to prevent a future flare-up of ulcerative colitis.

Some medications that might be used include:

Kids with IBD also need to have their nutrition carefully monitored. As many as one-third of children with ulcerative colitis may lose weight. For that reason, working with a dietitian as well as a gastroenterologist to keep on top of diet is important.

No official diet is recommended for people with IBD. A plan that is often used is the Mediterranean diet, which can be adjusted with the help of a dietitian.

Surgery might also be used to treat ulcerative colitis in anywhere between 8% and 26% of children in the first five years after diagnosis. A colectomy, where the colon is removed, is the surgical treatment used.

Patients may opt for an ileostomy, with the placement of a stoma (a small piece of the intestine that is brought through the abdomen). An appliance is worn over the stoma to collect stool.

Another option available to some patients is an ileal pouch-anal anastomosis (IPAA). In this procedure, commonly called j-pouch surgery, the last part of the small intestine is used to create a structure like a rectum. It is then attached to the anus so stool can leave the body. This is usually completed over either two or three separate surgeries.

Surgery for Ulcerative Colitis in Kids

Talking about having surgery to treat ulcerative colitis can be difficult for kids and parents. However, surgery can be a good treatment option for some patients, especially when there is severe disease that’s causing complications or a low quality of life.

Having surgery that’s planned, rather than emergency surgery, gives a better chance at a good outcome. It may help to talk early on with a gastroenterologist and a colorectal surgeon about having surgery. They can answer your questions and help you make decisions as a family about when surgery should be considered.

For kids who have severe disease or complications, being treated in the hospital is a possibility. There, medications might be given intravenously, along with fluids. Extra-intestinal or intestinal complications might also be managed with other treatments or procedures.

Prognosis

The incidence of IBD is, unfortunately, increasing around the world. However, the treatments available are becoming more effective. Patients don’t always have access to medications, particularly with more expensive options (such as biologics).

With a greater understanding of ulcerative colitis and more treatments becoming available, there is more hope to get the disease into remission and have a better quality of life. Work is being done to understand which patients might do better or worse based on a number of factors about their disease.

Parents may want to ask their child’s physician about the research done to predict the potential for severe disease or complications in children.

Coping

A diagnosis of ulcerative colitis is difficult for a child, as well as for their family and caregivers. IBD is stigmatizing and tends to leave patients feeling alone and isolated. For these reasons and more, it can affect a child’s mental health.

Managing Life With Ulcerative Colitis

Things to try:

  • Consider a summer camp for kids living with IBD or other chronic illnesses.
  • Kids and caregivers may benefit from connecting with support groups for patients and families.
  • Talk to family and friends about how family life will change to ensure a healthful environment.
  • Ask healthcare professionals or a mental health professional about stress-relieving techniques such as meditation or mindfulness.
  • Designate one person at school to communicate with regarding absences or accommodations (such as the school nurse, social worker, or counselor).

Kids and teens with IBD have a higher rate of depression and anxiety than is found in kids who live with other chronic conditions. Having symptoms of active disease, sleep disturbances, and medication side effects can all contribute to depression and anxiety.

Working with a mental health professional might be recommended. Some clinical psychologists are specially trained to help people with digestive disease or other chronic illnesses work through issues related to their condition.

Kids and families touched by ulcerative colitis may find working with a psychologist or other mental health professional can help in processing the significant changes to their lives.

Parents and guardians will also want to consider implementing accommodations at school. This could be in the form of a 504 Plan. Some things that could be in the plan include bathroom access, handling time off from school for treatments, or a need for extra help or tutoring.

The child who is living with ulcerative colitis should be part of this planning and help decide who at the school has information about their illness and when they are told.

Summary

Ulcerative colitis is being seen more frequently in children than in the past, especially in kids under the age of 5 years. Bloody stools, abdominal pain, and abdominal cramps are common symptoms. Diagnosis may include physical exam, lab tests, and imaging. Treatment is with lifestyle changes, medication, and sometimes surgery.

A Word From Verywell

IBD is often called a “family disease” because of the way it impacts the various parts of not only the life of the patient, but also their caregivers and siblings. One of the important parts of managing ulcerative colitis in kids is working to get the disease into remission and preventing future flare-ups.

There are still many unknowns about IBD, but the understanding of how it affects kids has been a major research focus in recent years. Gathering the best healthcare team possible, including a pediatric gastroenterologist, a dietitian, and a mental health professional, will help.

Frequently Asked Questions

  • Do children outgrow ulcerative colitis?

    All forms of IBD, including ulcerative colitis, are chronic and lifelong. Symptoms may come and go with treatment, and patients may enter into long periods of remission (with few to no symptoms). People who live with ulcerative colitis will need to see their healthcare professionals on a regular basis to manage symptoms.

  • Is ulcerative colitis hereditary?

    The genes for ulcerative colitis are passed down in families. However, there are more than 150 genes discovered so far, making it a complex disorder. The risk of a child having IBD when one parent has a form of IBD is low and estimated to be about 3%. 

  • When is ulcerative colitis typically diagnosed?

    Kids and teens make up about 20% to 30% of new patients with IBD. However, some studies show that ulcerative colitis in children may be increasing in recent years. The biggest increase is being seen in kids younger than 5 years old.

  • What can a parent do to help their child’s UC?

    Parents can help their kids who live with ulcerative colitis by helping them take their prescribed medication, making sure they eat a diet that supports their growing bodies, and providing emotional support.

    IBD is associated with stigma because the general public may think it is a disease that is only about going to the bathroom. Parents can listen to their children’s concerns and advocate for them with healthcare professionals, school administration, and friends and family.

    Taking cues from the child on how they would prefer their IBD to be discussed (e.g., keeping some things private) is also important.

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