Despite the challenges of living with a chronic disease, your child can have a normal, happy, productive life. Doctors and scientists are working hard to find the causes of and the cure for inflammatory bowel diseases (IBD). We will be focusing specifically on Crohn’s disease and Ulcerative Colitis. While there is not yet a cure for these chronic diseases, appropriate therapy can control the chronic inflammation that is a hallmark of IBD. This will help achieve long-term treatment goals, including elimination of chronic gastrointestinal symptoms, restoration of growth, and a normal quality of life.

Crohn’s disease and Ulcerative Colitis are the two most common types of inflammatory bowel diseases. While these conditions produce similar symptoms and use similar therapies, they are
not the same.

In Ulcerative Colitis, only the colon is affected; of the multiple layers of the intestinal wall, only the innermost lining of the colon, the mucosa, becomes inflamed in ulcerative colitis patients. Ulcerative colitis also spreads proximally, meaning it starts from the rectum and can spread continuously to the rest of the large intestine (colon).

Crohn's Disease, on the other hand, may affect any part of the gastrointestinal (GI) tract, from the lips to the anus. Unlike ulcerative colitis, Crohn's can skip large segments
of bowel before reappearing in others. The areas most often affected, however, are the lower part of the small intestine (ileum) and the large intestine (colon). Also, in Crohn's patients, the inflammation doesn't stop at the mucosa (tissue lining) and may burrow through the thickness of
the bowel wall.

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AccoMOMdate88 Omaha, NE
#whatisibd It is so frustrating for me when my son comes home upset about not being able to participate in activities. I never know what to say to his teachers. The suggestions about making accommodations is super helpful!

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Worrieddad92 Denver, CO
#whatisibd My son is entering fourth grade in September, and he was just diagnosed with Crohn's Disease this summer. How can I empower him to not be afraid of speaking up for himself?

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Worriedteacher88 Cleveland, OH
#whatisibd Any suggestions on activity substitutions if my student isn't feeling well on a day where recess is outside?

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AnonymousUser856>Worrieddad92
Tell him that health is more important than school! And that nobody knows his body better than he does. If he doesn't feel well, he MUST speak up!

TeacherfromNY>Worrieddad92
The teacher will learn to understand if he or she does not! There is a huge learning curve, and they are equipped to deal with every situation.

This is an anonymous forum where parents and teachers can ask and/or answer questions, yet still maintain confidentiality. Your information will not be disclosed elsewhere.We only ask
for your email to notify you of a response to your question.

Despite the differences between Crohn’s disease and ulcerative colitis, both cause similar symptoms when
active, all brought on by chronic inflammation. Patients
may have one or more symptoms, including: persistent diarrhea, abdominal pain and/or cramps, fecal urgency, intestinal bleeding, fever, and weight loss.

Children also may be affected by a delay in growth and sexual maturation. In fact, a significant number of pediatric IBD patients are diagnosed after reporting growth delays.

This primarily affects Crohn’s patients because of the
direct effects on bone growth and decreased absorption
of nutrients. However, it can affect all pediatric patients
if pain or other symptoms result in reduced appetite.

It is important to understand that these symptoms can vary significantly from patient to patient and do not have to be persistent. Such symptoms are only present when IBD is active and can be eliminated by inducing and maintaining remission and avoiding flare-ups (active symptoms) of the

disease. Symptoms may appear suddenly and severely and may seem to be triggered by stress or a viral or bacterial illness; they may also build slowly over time.

In addition to having symptoms in the GI tract, some people also may experience a variety of symptoms in other parts
of the body associated with IBD. Signs and symptoms of the disease may be evident in: eyes (redness, pain, itchiness), mouth (sores), joints (swelling and pain), skin (tender
bumps, painful ulcerations, and other sores/rashes), bones (osteoporosis), kidney (stones), liver (primary sclerosing cholangitis, hepatitis, and cirrhosis)—a rare development.

All of these are known as extraintestinal manifestations
of IBD because they occur outside of the intestine. In some people, these actually may be the first signs of Crohn’s disease, appearing even years before the bowel symptoms. In others, they may occur right before a flare-up of the disease. Your child should continue to see a pediatrician
to help monitor their physical development and make sure they are up to date with vaccinations, including annual flu vaccines. Make sure this physician is fully informed about your child’s medications, as children on immunosuppressive or biologic therapies should not receive live virus vaccines.

As the lining of the intestine becomes inflamed and ulcerated, it loses its ability to adequately process food and waste or absorb water, resulting in loose stools (diarrhea). Most
people with Crohn’s disease or ulcerative colitis experience
an urgency to have a bowel movement and have crampy abdominal pain. Inflammation can cause small sores (ulcers)
to form in the colon and rectum. These can join together and become large ulcers that bleed, resulting in bloody stools. Blood loss can eventually lead to anemia if unchecked. The symptoms of IBD vary from person to person, and may change over time. Symptoms can range from mild to severe. People with Crohn’s disease and Ulcerative Colitis often go through periods when the disease is quiet with few or no symptoms present, known as remission, alternating with times when
the disease is active and causing symptoms, known as flares.

An estimated 50,000 children (under age 20)in the United States have IBD, representing 5% of all IBD patients. However, the number of children with IBD appears to be increasing in recent years. In children, Crohn's disease occurs twice as frequently as Ulcerative Colitis. Slightly more boys than girls develop IBD (especially Crohn's disease) in childhood. When IBD is diagnosed in childhood it may be more extensive and follow a more sever course than when it is diagnosed in adulthood.

In approximately one-third of children with Crohn’s disease and one-tenth of children with Ulcerative
Colitis, their final adult height is less than expected because of their IBD.

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Worriedteacher88 Cleveland, OH
#whatisibd Any suggestions on activity substitutions if my student isn't feeling well on a day where recess is outside?

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AnonymousUser856>Worrieddad92
Tell him that health is more important than school! And that nobody knows his body better than he does. If he doesn't feel well, he MUST speak up!

TeacherfromNY>Worrieddad92
The teacher will learn to understand if he or she does not! There is a huge learning curve, and they are equipped to deal with every situation.

The diagnosis of a chronic illness can be a tough blow for anyone, but for children, it can be especially difficult to bear.

Still developing a sense of themselves both emotionally
and physically, young people now must face an extra hurdle of chronic illness, which can pose a threat to a child’s sense of well-being and security. Because of the unpredictable nature of the disease, it’s easy to feel helpless. As a result, children with IBD may become anxious, depressed, clingy, dependent and agitated. Remember that these reactions are a response to their disease, and not its cause. The emotional support provided by healthcare professionals can go a long way toward reassuring your child. At times, a counselor or child psychologist may be helpful in enabling your child to regain the self-confidence that is affected by chronic illness.

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Worriedteacher88 Cleveland, OH
#whatisibd Any suggestions on activity substitutions if my student isn't feeling well on a day where recess is outside?

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AnonymousUser856>Worrieddad92
Tell him that health is more important than school! And that nobody knows his body better than he does. If he doesn't feel well, he MUST speak up!

TeacherfromNY>Worrieddad92
The teacher will learn to understand if he or she does not! There is a huge learning curve, and they are equipped to deal with every situation.

Because children spend most of their waking hours in school, adults who tend to your child at school should be told about your child’s illness for several reasons, including:

IBD may lead to more frequent absences or hospitalizations; make-up work and other educational needs may need to
be addressed.

Children with IBD may have a greater reliance on bathrooms and thus need open bathroom passes or access.

Certain medications may need to be taken during the
school day.

Plan to establish a Section 504 plan or individualized education program (IEP) for your child. Section 504 of the Rehabilitation Act of 1973 provides that disabled students cannot be denied benefits of any public program including education. Within an IEP, your child can benefit from special “accommodations” that help to improve the quality of his or her educational experience and ensure social interaction with other students.

Requesting a meeting with administrators and teachers to discuss the illness and your child’s needs is a proactive way of dealing with potential future issues caused by IBD.

While informing the administrators
and teachers about your child’s needs
is necessary, your child may feel embarrassed about letting others
know. Because it may be important
to him or her, let your child decide
with whom and when to share that information with others.

In the Classroom,

the teacher should encourage the child to go about his or
her daily life as normally as possible, pursuing activities
as they did before their diagnosis. There’s no reason for
your child to sit out on things that he or she has always enjoyed or has dreamed of doing one day.

Make sure the child follows his or her doctor’s instructions about taking medication. Even when he or she is feeling perfectly well, your child should continue to take their medication. Maintenance medication can help your child
to maintain remission of disease activity and symptoms, allowing them to experience normal growth, development and a somewhat normal childhood.

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Worriedteacher88 Cleveland, OH
#whatisibd Any suggestions on activity substitutions if my student isn't feeling well on a day where recess is outside?

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AnonymousUser856>Worrieddad92
Tell him that health is more important than school! And that nobody knows his body better than he does. If he doesn't feel well, he MUST speak up!

TeacherfromNY>Worrieddad92
The teacher will learn to understand if he or she does not! There is a huge learning curve, and they are equipped to deal with every situation.

Informal (verbal arrangement with a teacher) and formal accommodations (items covered under a 504 plan or IEP)
for a child may help them reach and maintain their academic potential. Here are some formal and informal sample accommodations that may be helpful for your child.

Accommodations should be requested as soon as possible, preferably in the beginning of the school year, so that
there is time to make necessary arrangements and formalize plans.

Remember: even if your child is perfectly healthy at the start of
a school year, they may still need some of the accommodations below in the course of the year.

Unlimited Bathroom Pass

"Stop the clock" Testing

Ability to Hydrate

Supply Bag

Tests & Project Limits

Rest Period

School Absence

Alternate Seating

Medications

Tutoring & Support

Extra-Curricular Programs

Physical Education Class

Students with active disease symptoms may need to use the bathroom many times per day—often urgently in order to avoid fecal incontinence. Student and teacher should work out an appropriate bathroom signal to help avoid drawing attention to the student’s frequent bathroom breaks.

When taking an exam, the student may need to take a break due to pain or bowel urgency. Their test time will be extended by the amount of time that the student is away from the exam.

Frequent bowel movements and medication contribute to loss of fluids. Students should be allowed to carry and drink fluids throughout the day.

Student will be permitted to carry and eat small snacks, candy (to treat dry mouth), wet wipes, and other supplies throughout the day and use as needed.

Student will be permitted to carry and eat small snacks, candy (to treat dry mouth), wet wipes, and other supplies throughout the day and use as needed.

School nurse will provide a location as needed for students to lie down, or a private place to change clothes.

After a specified number of days absent from school, the student will receive in-home or hospital tutoring.

To accommodate easy access to classroom exits, the student’s seat may be changed.

The student, parent, and nurse will meet to discuss and establish a medication schedule.

If the student is absent for more than “x” days from school, he/she will have an opportunity to make up or get assistance with assignments. Students will be allowed to have an extra set of books at home.

The student will be allowed to participate in programs and events without penalty due to absenteeism.

The student should be allowed to self-monitor his or her energy level to determine if he or she can participate in physical activities.