Crohn’s Disease & Ulcerative Colitis: A Guide for Parents
You recently learned that your child has Crohn’s disease or ulcerative colitis. Now you’re taking an important step: learning about these conditions, how they’re treated, and how your child can learn to live with IBD.
The purpose of this information is to start you on an educational path—to inform you of some key points about Crohn’s disease and ulcerative colitis, and what you may expect. You won’t become an expert overnight, but gradually you’ll learn more. And the more you know, the better you’ll be able to become an advocate for your child. Most important: You’ll be an active member of your child’s healthcare team.
IBD: The basics
It is important to note, first and foremost, that inflammatory bowel diseases (IBD), specifically Crohn’s disease and ulcerative colitis, are chronic but treatable conditions. Doctors and scientists are working hard to find the causes of and the cure for IBD. Despite the challenges of living with a chronic disease, your child can have a normal, happy, productive life. While there is not yet a cure for these 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.
Signs and symptoms
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
- weight loss
While these symptoms are the same in children and adults, 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 IBD patients if abdominal 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.
You can learn more about signs and symptoms through the following brochures offered online at www.crohnscolitisfoundation.org:
- Living with Crohn’s Disease
- Living with Ulcerative Colitis
- Managing Flares and other IBD Symptoms
Beyond the intestines
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, and 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.
Who gets IBD?
Approximately 1.6 million Americans have either Crohn’s disease or ulcerative colitis. That number is almost evenly split between the two conditions. Here are some quick facts and figures:
- More than 1.6 million Americans have IBD.
- One in ten IBD patients are under the age of 18.
- On average, people are more frequently diagnosed with Crohn’s disease or ulcerative colitis between the ages of 15 and 35, although the disease can occur at any age.
Causes of IBD
No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe there may be several factors that work together to lead to the development of the diseases, including:
Genes—Studies have shown that 5.0 percent to 20.0 percent of affected individuals may have a first-degree relative (i.e., parents/child, siblings) with one of these diseases. Your genes clearly play a role, although no specific pattern of inheritance has yet been identified. This means that right now there is no way to predict which, if any, family members may develop IBD. A number of genes have been identified as possibly playing a role.
Environmental elements—Viruses, bacteria, and other factors have been studied with no conclusive results. Researchers are now focusing on microscopic elements.
Inappropriate immune reactions—Scientists continue to study whether a glitch in patients’ immune systems—perhaps launched by an environmental prompt—may result in the body attacking itself.
While researchers continue to study possible causes, some have been ruled out, including tension, anxiety, personality traits, or dietary factors. Also, the diseases are not considered to be contagious.
Because Crohn’s disease and ulcerative colitis are considered chronic, meaning that they can flare up after an initial remission, the goal of treatment is to achieve and maintain remission. These treatments can include prescription medication, over-the-counter medication, nutritional therapies and surgery.
While there is no medical cure for IBD, there are a number of drug therapies that can help your child. It is important to understand that just as the disease impacts each patient differently, medication regimens change from person to person, sometimes from flare to flare. For example, one individual may have few symptoms and may respond well to mild drug therapy during one flare but may require different, stronger medication during a more severe or prolonged flare.
As with all medications, you should know the risks and benefits of these medications and discuss any concerns with your child’s doctor. For more information about medications and their side effects, download the brochure Understanding IBD Medications and Side Effects from www.crohnscolitisfoundation.org.
Over-the-counter (OTC) medication
Prescription medications reduce intestinal inflammation and form the core of IBD treatment. Even so, these important prescription medications may not eliminate all of your child’s symptoms. Naturally, you may want your child to take over-the-counter medications in an effort to make him or her feel better. Before doing so, speak with your child’s doctor, or other healthcare professional. Sometimes your child’s symptoms can indicate a worsening of the inflammation that may require a change in prescription IBD medication or other course of treatment.
Optimal nutrition is a goal for well-being and development in all children, but in those with IBD, this may be difficult to achieve without intervention. Nutrition therapy may be as simple as regular visits with a nutritionist to ensure dietary goals are being met. The nutritionist may prescribe higher calorie and protein foods and liquid supplements. Because IBD, especially Crohn’s disease, may improve with nutritional support, it may be necessary to provide nutrition by delivering a nutrient-rich liquid formula directly into the stomach or small bowel. Known as enteral nutrition, this type of feeding is given overnight through a tube, most commonly from the nose to the stomach. This is called a nasogastric (NG) tube. This method ensures that patients receive nutrition while sleeping. In the morning, they remove the tube and go to work or school and generally pursue their normal activities. In this way, patients receive all the nutrition they need and are free to eat normally—or not—throughout the day. Enteral feedings can also be given through a gastrostomy tube (G-tube). A gastrostomy is a surgically created opening through the abdominal wall, leading directly into the stomach. The feeding tube is passed through this opening. The feedings are most commonly given overnight, but they can also be given intermittently throughout the day. Some patients prefer this approach because it avoids the discomfort of passing a tube down through the nose.
Total parenteral nutrition (TPN) is delivered through a catheter placed into a large blood vessel, usually one in the chest. Although it bypasses the intestine and thereby allows the bowel to rest, parenteral nutrition may create more complications than enteral nutrition. It is also more expensive than the other methods of nutritional support and requires more specialized training to use.
To find more information on nutrition and IBD, be sure to download the brochure Diet and Nutrition from www.crohnscolitisfoundation.org.
No parent ever wants to have their child undergo surgery. In the treatment of IBD, all medical efforts are aimed at preserving the intestines, especially in children.
But there are circumstances when surgery is the best option or the only alternative. In fact, many Crohn’s patients and a significant percentage of ulcerative colitis patients will reach a point where surgery is the best intervention.
The reasons for surgery include:
- unsuccessful medical control of the disease
- life-threatening colon conditions known as fulminant colitis and toxic megacolon
- fistulas and abscesses that are uncontrolled or not healed by medication
- strictures and obstructions, especially those caused by scar tissue
- perforation of the intestines
- colorectal cancer or risk of it
In ulcerative colitis, the condition is cured with the surgical removal of the colon and the lining of the remainder of the rectum, which is not the case in Crohn’s disease. In many cases, a pouch can be reconstructed. There is no cure for Crohn’s and the disease may reoccur at the site of the surgery. In Crohn’s surgery, however, the patients usually feel much better after the diseased segment of intestines is removed and may be able to reduce their medications as a result. It is also important to note that newer, minimally invasive surgical techniques help patients to heal faster, allowing them to return to their normal activities more quickly.
There are a number of surgeries that are performed in specific circumstances in IBD patients. To learn more about these surgeries, please download the brochure Surgery for Crohn's Disease and Ulcerative Colitis at: www.crohnscolitisfoundation.org
With IBD, there may be some adjustments you need to help your child make, including altering his or her diet as necessary or preparing them for daily activities.
Diet and nutrition
Every child needs good nutrition to help him or her grow and develop. While most children with IBD require relatively little or no change in diet, there may be times when modifying the diet can be helpful, particularly when their disease is active. A few different diets may be recommended during different times by your child’s physician, including a diet with no lactose (a sugar found in milk and milk-based products) or a diet with low amounts of insoluble fiber.
Some children with IBD may become deficient in certain vitamins and minerals (including vitamin D, B-12, and C; folic acid; iron; calcium; zinc; and magnesium), which may be supplemented. Children with IBD may have trouble tolerating iron taken orally; your child’s doctor may prescribe intravenous iron in special cases.
Other supplements your child’s doctor might recommend are known as probiotics and prebiotics. Probiotics are “good” bacteria that restore balance to the enteric microflora—bacteria that live in everybody’s intestine. Prebiotics are non-digestible food ingredients that provide nutrients to allow beneficial bacteria in the gut to multiply. They also stimulate the growth of probiotics. Mounting evidence suggests the use of probiotics—available in capsules, powders, liquids, and wafers—may represent another therapeutic option for adults with IBD, particularly in helping to maintain remission. Before adding these to your child’s regimen, you should ask your child’s doctor about these supplements as he or she may specify specific supplements for your child.
Two things you should remain vigilant about are your child’s weight and growth rate. Since weight loss is a symptom of a flare-up, any loss in weight should be reported to your child’s physician. Similarly, growth may slow or cease during periods of disease activity. If you child’s growth seems to slow considerably (wears the same size clothing for more than a year, seems smaller than other children of the same age, etc.), bring this to the attention of the child’s doctor.
For more information, visit www.crohnscolitisfoundation.org to review the material below:
- Diet and Nutrition
- Living with Crohn’s Disease
- Living with Ulcerative Colitis
- General Healthcare Maintenance
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.
Now that your child has a disease that causes a greater reliance on the bathroom, you should plan for more time in any activity schedule for bathroom breaks. You may also want to encourage your child to review bathroom locations in malls, playgrounds, movie theaters, or other regularly used areas outside of your home. Doing so can help your child feel more in control about their condition.
Some states have created laws that allow access to “employee only” restrooms in businesses open to the public. Call your local CCFA chapter to see if your state has passed the Restroom Access Act. If so, make sure your child has the required physician’s note describing your child’s need for immediate bathroom access any time he or she ventures out. During times of flare-ups, it may also help to pack a spare change of clothing and some moist wipes in a backpack for your child to carry.
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.
- Establish a Section 504 plan for your child. Within a 504 plan 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. (See “School accommodations”)
- 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.
- Access other related resources that may be helpful to you at www.crohnscolitisfoundation.org:
- A Guide for Kids and Teenagers
- A Guide for Teachers and Other School Personnel
- Pete Learns All About Crohn’s and Colitis
- IBD & Me Activity Book
If your child is falling behind in school, or requires special accommodations to maintain their academic performance, he or she may benefit from a 504 plan.
- 504 Plan: This comes from Section 504 of the Rehabilitation Act of 1973. This act requires recipients of federal education funding to provide children with disabilities appropriate educational services designed to meet the individual needs of such students, to the same extent as the needs of students without disabilities are met. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity to perform at the same level as their peers, and might include such things as blood sugar monitoring, an extra set of textbooks, or home instruction. A Section 504 plan involves an evaluation of the child’s need for accomodations and develop a plan, which is known as an individualized educational plan (IEP), for satisfying any medical requirments.
Informal (verbal arrangement with a teacher) and formal accommodations (items covered under a 504 plan) 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. It is always best to plan ahead! These are some potential accommodations—others may be added to meet the needs of your child.
- Unlimited bathroom pass: 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.
- “Stop the clock” testing: 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.
- Ability to hydrate: Frequent bowel movements and medication contribute to loss of fluids. Students should be allowed to carry and drink fluids throughout the day.
- Supply bag: 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.
- Tests and project limits: Medications and active disease symptoms may contribute to sleep deprivation and fatigue. As a result, the number of tests and projects can be limited to one to two per day. Test and project deadlines can also be extended without penalty.
- Rest period: School nurse will provide a location as needed for students to lie down, or a private place to change clothes.
- School absence: After a specified number of days absent from school, the student will receive in-home or hospital tutoring.
- Alternate Seating: To accommodate easy access to classroom exits, the student’s seat may be changed.
- Medications: The student, parent, and nurse will meet to discuss and establish a medication schedule.
- Tutoring and support: 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.
- Extra-curricular programs: The student will be allowed to participate in programs and events without penalty due to absenteeism.
- Physical education class: The student should be allowed to self-monitor his/her energy level to determine if he or she can participate in physical activities. The physical education teacher will notify their parents if there is ongoing non-participation in gym class.
To learn more about school accommodations, please call our IBD Help Center at 888-694-8872.
Young people with IBD should be as active as possible. Outside of the physical benefits, including building stronger muscles and bones, these activities provide an outlet for stress and can help build confidence.
Generally, there is no reason not to participate in sports, dance, or other physical activities, even if the disease is flaring up. But some modifications may be necessary if strenuous activities cause fatigue or aggravate abdominal pain, arthritis, or other symptoms. You and your child should also be vigilant about maintaining proper hydration.
Furthermore, prolonged high-dose steroid therapy may make bones more susceptible to fracture during contact sports, such as football and wrestling. In these instances, a modified exercise program may be advisable.
Emotional and social support
The diagnosis of a chronic illness can be a tough blow for anyone, but for children, it can be especially hard 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.
As a result, children with IBD may become:
It is important to 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 sometimes affected by chronic illness.
Children can also find peer support and education through a number of avenues, including:
- Justlikemeibd.org—A Web site for older children and teens with IBD.
- Camp Oasis—A CCFA-sponsored summer camp for children with Crohn’s disease or ulcerative colitis. Learn more: www.crohnscolitisfoundation.org/kidsteens/camp
- CCFA Support Groups—Support groups can be especially helpful. The best help, advice, and understanding will come from interacting with people who know what you or your child is going through from personal experience. Find support groups in your area by contacting your local CCFA chapter.
- ibdu.org—A Web site for older teens and young adults.
Stress is impossible to avoid in life. Since stressful situations can precipitate a flare-up in some individuals, it might be helpful to teach your child techniques for coping with or relieving stress. By using these techniques, your child can stay calm, maintain perspective, and avoid anxiety. Encourage your child to try several different approaches and stick with ones that work for him or her. These can include:
- relaxation and breathing exercises
- practicing yoga or tai chi
- cognitive behavioral therapy
- books, recordings, guided imagery, etc.
Realize that others in the family may also be suffering emotionally from the diagnosis. If there are other children in the family, they need to understand their sibling’s condition and the impact it’s likely to have on their lives. It’s important to reassure them that you still love them and want to be as involved in their lives as you’ve always been, although you may have to devote more time to the child who is ill.
You, your child and the rest of the family may find comfort and support by participating in educational, social, and fundraising activities sponsored by your CCFA chapter. Annual walks, Camp Oasis, educational seminars, and fundraising events build a sense of community among those diagnosed with the disease and those who love them. To find out what is happening in your chapter, go to www.crohnscolitisfoundation.org/chapters.
It may be difficult and stressful for your child to accept that he or she has Crohn’s disease or ulcerative colitis. As time goes on, this will not always be the case. In the meantime, try not to hide your child’s condition from family, friends, and co-workers. Discuss it with them and let them help and support you and your family. You’ll learn that there are numerous strategies that can make living with IBD easier.
Coping techniques for dealing with the disease may take many forms. For example, attacks of diarrhea or abdominal pain may make your child fearful of being in public places. But that isn’t necessary. All it takes is some practical
advanced planning. You may want to help your child incorporate some of the following steps into his or her plans:
- Find out where the restrooms are in restaurants, public parks, theaters, and on public transportation.
- Carry extra underclothing and toilet paper or moist wipes when traveling. When venturing further away or for longer periods of time, speak with your child’s doctor first. Travel plans should include a long-term supply of medication, its generic name in case your child runs out or loses it, and the names of doctors in the area he or she will be visiting.
- Encourage your 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.
- Help your child learn coping strategies from friends and other supportive individuals. Your local CCFA chapter offers support groups as well as informational meetings. It helps your child and you to share what you know with others, too.
- Develop a support network of family and friends to help you and your child manage the disease. Bring a family member or friend to your child’s doctor’s appointment for support.
- Join CCFA’s free online community at www.ccfacommunity.org for yourself or ucandcrohns.org for your older child or teen to get the support they need through participation in discussion boards, personal stories, chat rooms, and much more.
- Make sure your 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.
- Maintain a positive outlook. That’s the basic—and best—prescription!
While Crohn’s disease and ulcerative colitis are serious chronic diseases, they will not affect the life span of your child. There’s no doubt that living with IBD is challenging—your child will have to take medication and, occasionally, make other adjustments. It’s important to remember that most people with Crohn’s disease and ulcerative colitis are able to lead rich and productive lives. Remember, too, that taking maintenance medication can help your child to maintain remission of disease activity and symptoms, allowing them to experience normal growth and development.
Hope for the future
Investigators all over the world are devoted to research to find the causes and cure for Crohn’s disease and ulcerative colitis. That’s good news when it comes to the development of new therapies for these diseases. It is a very exciting time in the development of new therapies. Researchers are uncovering the culprits involved in IBD, and technology is making it possible to target them and block inflammation. With many experimental treatments for IBD in clinical trials, experts predict that a wave of new therapies for IBD is on the way.
With an ever-increasing number of clinical trials of potential new IBD therapies, there is an even greater need for patient participation to see if these experimental therapies work. To locate clinical trials in your area, go to CCFA’s Web site at www.crohnscolitisfoundation.org/trials/ or call 888.MY.GUT.PAIN (888-694-8872).
For further information, call Crohn's & Colitis Foundation's IBD Help Center: 888.MY.GUT.PAIN (888.694.8872).
The Crohn's & Colitis Foundation provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization's resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.
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Published: August 17, 2016
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