Inflammatory Bowel Disease (IBD): Treatment and Lifelong Support

Finding the right resources and support needed to make day-to-day living easier

Inflammatory bowel disease (IBD) is a chronic disease of the bowel affecting approximately 80,000 children ages 3 to 18 years old in the US alone. About 1.5 of every 200 people in North America has IBD.

Although scientists are not exactly sure what causes IBD, there are some predetermining factors. A person is 3-20 times more likely to develop IBD if a first degree relative (mother, father or sibling) has IBD or Jewish descent, very early childhood infections of the intestines, smoking, could also play a role in getting IBD.

There are mainly two kinds of IBD: Crohn’s disease and ulcerative colitis. Crohn’s disease affects any part of the bowel, from the mouth to the rectum (rear end) and ulcerative colitis only affects the colon (large intestine). Usual symptoms of this disease are: frequent stools with blood, loss of appetite, nausea/vomiting, weight loss. Especially in children, slowing of their growth is a significant symptom to watch for. There are periods of increased activity of the illness, called flares, and periods of fewer or no symptoms. Overtime, if untreated, the disease could lead to significant problems like infections inside the abdomen (belly) and permanent narrowing of the bowel. Additionally, in children, short stature (being short for life) and brittle bones could result. Current treatments can prevent these from happening.

There is no cure for IBD currently, however there is excellent treatment available, which should return children to their normal life and growth and decrease or stop the symptoms. Treatments for IBD aim to calm down the inflamed bowel and keep the inflammation from coming back. Treatments may include not eating solid food, but drinking nutritional supplements only for several weeks, steroids and other medications that lower the immune system and sometimes surgery to remove part of the inflamed intestine. Although some of the medications used have been known to cause unwanted effects, these are relatively rare. The benefits from these medications by far outweigh the risks for most children.

If you or your child are diagnosed with IBD, you’re in good company. Celebrities with IBD include: LA Lakers forward Larry Nance Jr, NFL Quarterback David Garrard, golfer James Morrison, actresses Amy Brenneman and Shannen Doherty, 4-term Boston mayor Thomas Menino and President Dwight Eisenhower among others.

If your school has 200 students or more, it is almost certain that there is at least another student, or teacher/staff with IBD.

Most children with IBD will have to spend part or all of their teenage years dealing with the disease. This could be particularly hard given that these are years of many changes both in the body and mind. Including when teens try to navigate their way through middle and high school, form their identity and make plans for their future. A diagnosis of IBD during these transitional years can often involve spending time in the hospital, regular doctor visits, taking daily medication and feeling ill at least for some of the time.

It is important to remember that informing the school officials and securing accommodations, such as free bathroom privileges, excuses for absences due to illness, make up tests and help catching up with courses is not only very helpful, but also your child’s right. Your gastroenterologist can assist you and the school in making a medical-educational or 504 plan ahead of time each year to help you being comfortable and successful in school.

It is up to you if, or with whom you select to share information about your illness with among your friends, relatives or teachers.

Chronic illness can take an emotional toll on you and your family. If you find that it is becoming increasingly hard to cope with your feelings or losing hope and interest in many things, you are not alone. Studies have shown that at least 25% of children with IBD have serious issues with depression and anxiety that is related to their diagnosis. It is important that you let your doctor or parents know, so that you can find the necessary help to overcome these feelings.

On a personal note, I have been caring for children with IBD for nearly two decades. I have witnessed almost miraculous changes in the treatment of this disease happening over this time span, and as actively involved in research, I can tell that many more life changing treatments will become available in the next few years. As a doctor, an IBD specialist, and a researcher, I am constantly amazed by the resilience of young patients with IBD and their families, their fighting spirit and their inspiring willingness to donate their time to research to find better treatments and a cure.

For more information about IBD, visit the Crohn’s and Colitis Foundation site at IBD patients can find the right resources and support needed to make day-to-day living easier, including discussion boards, hear personal stories, ask questions to experts and much more.

Dr. Helen Pappa is the Medical Director of the Inflammatory Bowel Disease Center, an Assistant Professor of Pediatrics at Saint Louis University School of Medicine and a practicing Pediatric Gastroenterology SLUCare physician at SSM Health Cardinal Glennon Children’s Hospital.

Learn more about SSM Health Cardinal Glennon’s nationally ranked gastroenterology team here.

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