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There are many ways you can help children and their families get the care they need.
Learn about clinical care for ulcerative colitis. Why are follow-up appointments with clinicians important? What kind of routine will the clinician develop? Should you discuss vaccinations, flu shots, or screenings?
During follow-up visits, clinicians will often speak with a patient and their family about how he or she is doing in school and with extracurricular activities. Discussing these aspects of a patient’s life allows the clinicians to insure that the patient is adjusting well to having ulcerative colitis (UC) and doing well clinically.
Medical follow-up is an essential part of UC care. During outpatient visits, the patient’s list of medications and health status are reviewed. Members of the IBD team will also address any special concerns, such as remembering to take medications or difficulties following treatment plans.
Patients should try their best to remember which medications they are currently taking and the dosages of these medications. It may be helpful to write them down on an index card and keep them in a wallet or backpack for easy reference. Also it is important to let clinicians know if any vitamins, supplements, or alternative therapies are being taken as they may interact with prescription medications.
Although yearly flu shots are part of routine care, the patient and family should check with clinicians before receiving other vaccinations; live vaccines are generally not recommended. Also, if a patient is taking immunosuppressant medications, it is critical to make sure to visit the pediatrician at the first sign of a fever or infection.
A flare of the disease is typically characterized as the same symptoms that were present at the time of the initial diagnosis. Abdominal cramping, diarrhea, and fatigue could be signs of a flare and patients should check with their doctors if any of these symptoms are present. A outpatient visit or testing may be recommended.
Bone density scans, or DEXA scans, should be done regularly to check for low bone density. Also, regular eye exams are important to check for medication side effects or eye inflammation related to the colitis.
The bulk of care for UC is done as outpatient care. Good communication is key. Nurses and doctors can sometimes assess a patient’s condition and make minor adjustments to the treatment plan simply by speaking with the patient over the phone.
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.”