Information for Malone/ MACE/ Appendicostomy - Disabled Living

This document was produced following several discussions on various
online support groups about Antegrade Colonic Enemas and collated so
that parents considering this procedure for their child can make a
decision about whether this is something that may assist with the social
continence of their child. It is assumed that the medical health care
professional has discussed the surgical procedure with the parent, and
the parent has been informed of the possible risks and benefits. Parents
reading this document should not take any information from here as
medical advice. If you want or need medical advice, you should seek it
from a properly qualified medical health care professional. The
information in this document is purely anecdotal, and gathered with the
intention of sharing knowledge and skills.
Parents from Australia, New Zealand, USA, Ireland and Canada
participated and provided answers to the questions posed.
For confidentiality, no names were used and for ease of reading, the sex
of the child was male.
In total there were 29 participants, with children ranging from 3 and a
half to 17 years of age. Diagnoses were varied; Imperforate Anus, Spina
Bifida, Hirschprungs Disease, Intestinal Neuronal Dysplasia (NID).
The contributors were gathered from the following groups:
• The Pull-Thru Network http://www.pullthrunetwork.org/
• Imperforate Anus Information and Support Group for parents
http://health.groups.yahoo.com/group/IA-parents/
• NZ-Australia-ACE-and-BOWEL-Network
http://groups.yahoo.com/group/NZ-Australia-ACE-and-BOWEL-
Network/
• The VATER Forum http://www.thevaterconnection.com/index.asp
• VACTERL Network http://www.vacterlnetwork.org/
• VACTERL Network (Yahoo Group) related to the above group
http://health.groups.yahoo.com/group/VACTERLNetwork/
• Bowel Group for Kids (BGK) http://www.bgk.org.au/index.php
• Facebook : V.A.T.E.R.and/or V.A.C.T.E.R.L Syndrome awareness
VACTERL Association Support Group
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