Medicine United with Surgery in Caring for IBD Patients (MUSIC) | Patient Resources

Learning how to cope is easiest when parents, children, and health care professionals work together as a team. Child life specialists are available to help reduce any fears surrounding this experience.

Reason with your child appropriate to their stage of development. If your son or daughter has questions, always answer them honestly so they will be prepared for what will happen. Children often sense when their parents, doctors, or nurses are hiding something from them.

Decide appropriate "advance notice" time. Some children prefer to know well ahead of time what's coming, and some do better knowing closer to the time of the event (for example, when a tube is going to be removed). You know your child better than anyone. Keep in mind that giving them too much advanced notice of events may make them unable to focus on anything else. Many parents prefer to share information when medical team members are present. If your child is a teenager and expresses interest in speaking with their doctors or nurses, respect their wishes.

If age appropriate, ask if they would like any comfort objects such as stuffed animals or musical tapes during the procedures.

Psychosocial support for you and your child is available during the hospitalization. Parents often feel sad, fearful, or helpless, even if your doctor assures you that your child's prognosis is good. Some may feel guilty thinking they may have done something to cause the disease or should have been able to do something to prevent it. Although these kinds of questions are both common and normal, try to remember you are not to blame for your child's illness.

Don't hesitate to ask to meet with a social worker to discuss any concerns you may have. We also recommend the following resources.

• ostomies: a guide to ileostomies and colostomies
• ostomy diet guidelines
• home care instructions for changing an ostomy pouch (bag)

• Crohn's and Colitis Foundation of America (CFFA): 1-800-932-2423, ext. 212, www.ccfa.org
  • surgery information for Crohn's disease and ulcerative colitis
  • understanding the J-pouch surgical procedure
• International Foundation for Functional GI Disorders (IFFGD): 414-964-1799, www.aboutkidsgi.org
• National Digestive Diseases Information Clearing House (NIDDIC): 1-800-860-8747, www.niddk.nih.gov
• United Ostomy Association of America (UOAA): 1-800-826-0826
• Wound, Ostomy & Continence Nurses Society: 1-888-224-9626, www.wocn.org
• Youth Rally is a four-day camp for kids ages 11 to 17 who have had a bowel and/or bladder diversion: 856-854-3737, www.rally4youth.org