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There are many ways you can help children and their families get the care they need.
Depending on the severity of symptoms, treating ulcerative colitis often requires a combination of approaches, especially at first:
1. When UC is First Diagnosed
Most of the time, children are having severe symptoms when they are first diagnosed. If your child feels unwell, the first thing we will do is get her symptoms under control as quickly as possible. How we do this will depend on the extent and severity of the inflammation and the best clinical approach in discussing available options with your family.
Occasionally, children may need to be hospitalized to make the diagnosis and get things under control quickly. Either as an inpatient or shortly thereafter, you and your child will meet with members of your child's IBD team, all of whom have expertise in working with children with IBD and their families. Besides your child's primary gastroenterologist, you may talk with:
2. Managing ulcerative colitis
Once your child's symptoms have subsided, we will likely start her on a course of maintenance medicine to keep her well. Anti-inflammatory medications may help with abdominal pain and diarrhea, and if your child has a more severe case of IBD, we may prescribe more steroids, antibiotics, or drugs that suppress the immune system (immunosuppressants). It may take a while to figure out which medications work the best for your child. While UC is a lifelong condition, our goal is to keep it in remission for as long as possible – meaning a “normal” life for your child, with few to no symptoms.
3. Dealing with “flare-ups” of UC
Flare-ups happen when your child again begins to experience symptoms of IBD, or is feeling especially tired and unwell. If this happens, it's a good idea to check with your child's primary care doctor, who can refer you to us at Boston Children's if need be.
If your child is having a flare-up, we may treat it with rescue medicines—a short course of strong medications to again bring about a remission. We'll also monitor her closely to determine what may have caused it and whether any changes should be made to her treatment plan.
What are common medications for ulcerative colitis?
This is a brief summary of some of the medications used for inflammatory bowel diseases and ulcerative colitis. Please discuss specific medications—and your child's individual situation—with your doctor.
Antiulcer/H2 blockers, including:
What if surgery is recommended to treat my child’s ulcerative colitis disease?
While we almost always start treatment for IBD with medication, sometimes a child may not respond (or may stop responding) to medications, and be a good candidate for surgery. The decision to have surgery is a joint one, made between your child, your family, your child's gastroenterologist and the surgeon.
About 20 percent of children with ulcerative colitis eventually need surgery, most often a proctocolectomy (removal of the large intestine). Since the disease lives in the lining of the large intestine, removing it often dramatically improves the quality of life and reduces the symptoms of IBD. This procedure frequently happens in two stages:
Stage 1: The surgeon removes the colon and rectum, and uses a small section of your child's small intestine to create a “J-pouch” to replace the rectum. The surgeon also creates a temporary ileostomy, a small opening in the abdominal wall where the tip of the lower small intestines (ileum) is brought to allow the drainage of waste.
Stage 2: About two or three months later, the surgeon removes the ileostomy and attaches the ileum to the rectum. This allows the child to again have bowel movements in the regular manner.
Depending on your child's condition, sometimes the procedure is done in three stages, and sometimes only the first stage will be done.
What are follow-up treatments like for my child with UC?
Lifelong follow-up is crucial with IBD, since it allows your child's doctors to:
We also recommend bone scans (to monitor bone density and prevent bone weakening) and eye exams.
How often will my child with ulcerative colitis need follow-up appointments?
This depends on your child, her treatment plan and how she is feeling. If your child is doing very well, and experiencing few to no symptoms, your child's doctor may want to see her every six months. If your child is on immunosuppressant medications, there's a higher risk of complications, and we'd like to see her every three months. If your child is not feeling well, she will come in every four weeks or so.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”