Inflammatory Bowel Disease (IBD) - Pediatric

Inflammatory Bowel Disease (IBD) consists of two different but related conditions.  These conditions are Crohn’s Disease (CD) and Ulcerative Colitis (UC).  In both conditions, there is inflammation in the lining of the bowel or intestine that causes the symptoms of the disease.  CD can occur anywhere in the gastrointestinal (GI) tract, from the mouth to the anus.  UC is typically limited to the large intestine or colon only.

You or your child has recently been diagnosed with IBD.  We have included several pamphlets from the Crohn’s and Colitis Foundation that will provide you with excellent information on many aspects of IBD.  These include information on the disease itself, medications used, diet, and working with schools.  Other resources are also available in a variety of areas.  Please ask your provider or the clinic staff if you desire more information.

The purpose of this handout is to help you better understand the role of our clinic in the care of you or your child.

How is IBD diagnosed?
There are a variety of symptoms that can suggest to your doctor that IBD may be present.  These include diarrhea, bleeding, weight loss or failure to grow, abdominal pain, or many other problems.  Usually your primary care provider will refer you to a pediatric gastroenterologist for further evaluation.  The final diagnosis is based on history, physical exam, radiology studies, laboratory or blood tests, and the results of endoscopy/colonoscopy. One of our providers will talk with you once a diagnosis has been made.  If treatment was not started at the time of the endoscopy/colonoscopy it will be started then.

When do I come to the clinic after the diagnosis?
Once a diagnosis of IBD has been made, you will most likely return to our office within the first few weeks for a follow up visit with one of our providers.  At that time we will evaluate how well the treatment is working and try to answer any questions that you have.  There may be follow up tests to evaluate the effectiveness of the treatment.  Periodic follow up visits will be necessary to monitor overall health and the effectiveness of the treatment.  Adjustments to treatment may be needed as your child’s condition changes.

Certain medications require more routine laboratory monitoring.  Often these tests can be done at your primary care clinic and you do not have to travel to our office for these tests.

What if there are problems or I have questions in between appointments?
At any time that you have questions or there are changes in your child’s condition that concern you, you should contact our office. The support staff will take down your information or questions and speak to your child’s provider. The support staff will call you back with any changes in the treatment plan or other information after they speak with your child’s provider.

You can help this process by providing as much detail as possible about your child’s condition when you call.

Specific information that is helpful includes:

• What problem your child is having (e.g. diarrhea, bleeding, pain, fevers, etc.).  Please be as specific as possible, including such things as number of stools per day, location of pain, specific temperatures, etc. 
• When the problem started or how long it has been going on.
• What medication your child is taking and any recent changes in medication.
• Anything else that concerns you.
• Be sure to leave your child's name including spelling, date of birth, and what provider they see.
• Having this information at the beginning will save time and phone calls, helping us to treat your child as quickly and appropriately as possible.

What are some other resources that are available?
You can find a wide variety of information available about CD and UC, particularly if you have access to the Internet.  We must caution you that some sources are more accurate than others so you should evaluate information carefully.  Enclosed is a sheet with some additional resources, including websites, support groups, and books.  This list is not exhaustive but is a good starting point for you as you begin to learn more about managing IBD. If you have any questions or concerns, please contact our office at 612-871-1145.

For More Information on IBD:

Crohn's and Colitis Foundation - Minnesota/Dakotas Chapter
Offers a variety of support groups in the Twin Cities and throughout Minnesota, sponsors summer camp for kids, and other activities. Their website can be found at www.crohnscolitisfoundation.org/chapters/minnesota/ 

2277 Highway 36 West, Suite #170
Roseville, MN 55113
Phone: 651-917-2424
Toll Free: 1-888-422-3266
Fax: 651-917-2425
E-mail: minnesota@crohnscolitisfoundation.org 

Crohn's and Colitis Foundation
This is the national organization that is involved in education, fundraising, research and advocacy for IBD. Their website has a variety of information relating to IBD.

733 Third Avenue, Suite #510
New York, NY 10017
Phone: 800-932-2423
Internet: www.crohnscolitisfoundation.org/ 
E-mail: info@crohnscolitisfoundation.org 

National Digestive Diseases Information Clearinghouse (NDDIC)
This website provides information on a variety of digestive problems, including CD and UC.
Internet: www.digestive.niddk.nih.gov

Books:
The First Year---Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed
by Jill Sklar
ISBN# 1-56924-532-0

Crohn's Disease & Ulcerative Colitis
by Fred Saibil
ISBN #1-55209-114-7