Laparoscopic Total Colectomy and Ileoanal Pullthrough Program Patient Resources

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Learning how to cope is easiest when parents, children, and health care professional 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 his doctors or nurses, respect his/her 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.

Important Information Guides:

Crohn's and Colitis Foundation of America (CFFA)
1-800-932-2423, ext 212

International Foundation for Functional GI Disorders (IFFGD)

National Digestive Diseases Information Clearing House (NIDDIC)

United Ostomy Association of America (UOAA)

Wound, Ostomy & Continence Nurses Society

Youth Rally
A four day camp in San Diego, California for kids ages 11-17 who have had a bowel and/or bladder diversion.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944