Advocating for Children with Crohn’s Disease and Ulcerative Colitis (page 4)
Many children are afflicted with gastrointestinal diseases such as Crohn's and ulcerative colitis. Crohn's and ulcerative colitis are both inflammatory bowel diseases that infect the digestive tract. Crohn's disease irritates the gastrointestinal tract more deeply that colitis, and it causes inflammation anywhere from the anus to the colon. Ulcerative colitis is an autoimmune disease restricted to the colon.
Many children and adults with inflammatory bowel disease often experience an urgent need to use the bathroom. Unfortunately, having bathroom access depends on the situation and location. In addition to tolerating the physical discomfort of these conditions, children must learn how to advocate for themselves in public places, namely stores and schools.
Ally's Law: The Restroom Access Act
You and your child are not alone in coping with gastrointestinal diseases. Other families and lawmakers have taken strides in gaining access to public restrooms in medical emergencies. Ally Bain, an Illinois adolescent living with Crohn's disease, suddenly had to use the bathroom at a retail store. Ally was denied access to an employee-only bathroom, even after she explained her medical condition to the store manager and presented a medical card. Experiencing abdominal pain and an accident in the store, Ally and her mother fought to make sure no one else would have to experience this humiliation again.
With the help of family, friends, and Illinois State Representative Kathleen Ryg, Ally pushed to have a law passed requiring retail establishments to provide bathroom access to those afflicted with gastrointestinal diseases and other bowel conditions. Kentucky, Minnesota, Washington and Texas followed in passing similar laws. Connecticut, Maryland, Oklahoma, Michigan, Florida, Georgia, Ohio, Tennessee, Pennsylvania, New Jersey, New York, Delaware and Massachusetts still have bills pending. Ally and other lawmakers are on a mission to pass this law across the country.
Restroom Access for Medical Conditions in Schools
While the Restroom Access Act ensures bathroom use at stores, children may be denied bathroom access at a place where they spend most of their time: school. Many teachers limit how often students can use the bathroom. A common classroom rule is that only one student can use the bathroom at a time. Teachers may discourage, and even deny students use of bathrooms during class, instead leaving passing periods and lunch for bathroom breaks. But not all children can time or choose their bathroom visits.
Children with gastrointestinal conditions often feel obliged to follow their teachers' rules regarding bathroom use. However, you need to make sure that your child knows it is ok to go to the bathroom when he or she needs to go.
Self-Advocacy in School for Crohn's and Ulcerative Colitis Patients
Children with Crohn's and ulcerative colitis should learn to advocate for themselves in school. Here are some easy steps to follow for how to talk with your child and his or her teachers:
- Have your child's doctor write a note to the school staff verifying your child's medical condition.
- Many doctors send a standard letter that educates teachers about inflammatory bowel disease.
- The doctor’s note will likely explain your child’s need to use the restroom often.
- Have your child communicate his or her needs to the teacher when handing over the doctor’s note.
- Keep in mind that your child may feel uncomfortable discussing this medical condition with his or her teacher.
- Offer to talk to your child's teacher if your child does not feel comfortable doing so.
- Make an agreement with the teacher that your child can leave class for the bathroom at any given time during the class period.
- Continually asking permission to use the bathroom and following the class procedure for going to the bathroom may lead to embarrassment.
- Children with inflammatory bowel diseases may not have time to follow procedural formalities in a medical emergency. Instead, have your child and teacher choose a hand signal to communicate your child's need to use the bathroom.
- Tell your child that he or she should not abuse the privilege of unlimited bathroom access; otherwise, he or she may not be given bathroom access when he or she really needs to go.
- Ask the teacher if your child can use the bathroom:
- without asking permission
- without using a bathroom pass
- even if another student is in the bathroom
- Depending on the severity of your child's medical condition, and if your child encounters difficulty gaining easy access to the bathroom in school, you could ask to have a 504 plan developed. Section 504 of the Rehabilitation Act and the Americans with Disabilities Act both provide for accommodations to include those with physical limitations in all publically funded schools.
By following the above steps your school will likely accommodate your child. Communication between yourself, your child, and the school will likely be all you need to help your child feel comfortable and healthy. Open discussion and understanding can prevent a potentially embarrassing and unhealthy situation.
Support for Children with Crohn's and Ulcerative Colitis
Teaching your child to communicate comfortably about his or her disease is one way to help him or her become an effective advocate. Caring gastroenterologists such as Dr. Mel Heyman makes that support possible. Dr. Mel Heyman, a physician and advocate for children with inflammatory bowel disease, is the chief of Pediatric Gastroenterology, Hepatology and Nutrition at the University of California, San Francisco Children's Hospital and a Professor of Pediatrics at the University of California, San Francisco School of Medicine. He says that while children with inflammatory bowel disease live in pain, they need not live in isolation.
Dr. Heyman founded and runs Camp Gut Busters, a week long, free overnight camp for children with ulcerative colitis and Crohn’s disease. Children with inflammatory bowel disease go to the camp to have fun and relate to other children with inflammatory bowel disease. Besides participating in typical camp activities such as boating, horseback riding, and wall climbing, campers are also provided medical and emotional support. Campers find comfort in sharing stories with peers who also have inflammatory bowel disease. Campers also learn to communicate comfortably about their condition, a skill which can help them better advocate for their needs in school.
Below are Resources for Crohn’s and colitis camps:
- Camp Gut Busters http://ibdcamp.org/new_design3/IBD-SITE/index.html
Camp Gut Busters is located in Livermore, CA in the San Francisco Bay Area.
- Crohn’s and Colitis Camps across the U.S. http://stores.camps4us.com/-strse-Crohn%27s-&-Colitis-Camps/Categories.bok
The Crohn’s and Colitis Foundation of America provides many camps across the country.
While Crohn’s and Colitis summer camps provide children with inflammatory bowel disease a supporting environment away from home, it is important to teach your child to advocate for his or her needs in all environments. Encourage children diagnosed with inflammatory bowel disease to feel comfortable with their condition and openly communicate with family, teachers, and physicians. Your child’s ability to speak knowledgably about the disease will result in greater understanding and support from others.
- Dr. Mel Heyman http://www.education.com/profile/mheyman/
- "Inflammatory Bowel Disease." The Nemours Foundation. http://www.education.com/reference/article/Ref_Inflammatory_Bowel/
- "Public Health (410 ILCS 39/) Restroom Access Act." Illinois General Assembly. http://www.ilga.gov/LEGISLATION/ILCS/ilcs3.asp?ActID=2726&ChapAct=410%26nbsp%3BILCS%26nbsp%3B39 2F&ChapterID=35&ChapterName=PUBLIC+HEALTH&ActName=Restroom+Access+Ac
- "Restroom Access Act - Ally's Law." Crohn's and Me. http://crohnsandme.com/thescoop/advocacy_old/default.asp
- "Restrooms on the Go." Interstitial Cystitis Association. http://www.ichelp.org/LivingwithIC/RestroomsontheGo/tabid/613/Default.aspx
- "Ryg Receives Award for Bill Sponsorship." Illinois House of Representative, State Representative Kathy Ryg. http://www.kathyryg.org/press_releases/apr_07-26-05.pdf
- The Crohn's and Colitis Foundation of America http://www.ccfa.org/