Information for Malone/ MACE/ Appendicostomy - Disabled Living

What advice would you give to parents considering
this surgery for their child?
• I would highly recommend this surgery and it has been the best
choice for our child. I feel like it gives him much more privacy and
normalcy.
• If your life has become unmanageable and chaotic because of
incontinence and bowel back-up -- don't hesitate. It really made a
difference for our child and our family! He sometimes indicates
concern about possibly having to do this for his whole life -- and he
is bothered by the fact that he has to do it everyday -- but overall,
he seems much more at ease and happy with the predictability that
it gives to her life. Going to the conferences, and meeting other
children who have the same or similar surgeries, has helped as
well.
• Of all the stomas my child has had placed (colostomy, vesicostomy,
Mitrofanoff), the Malone has been the best and most problem free
of them all. Not really specific advice, just want to encourage
other parents by letting them know how wonderful it has been for
us.
• Go for it, but be ready to keep looking for advise on getting the
mix right.
• Ask the surgeon how many he has done and ask about bowel
cleanout before the surgery.
• If you think that your child will not succeed on laxatives and
enemas have worked well for at least a year...do it! Having an
elective surgery done is always a difficult decision, but it was a
great decision for our family.
• Go for it! It’s not a major surgery but it can make a huge
difference to your lives. It’s reversible. Everyone I know that’s had
it has been happy, despite the initial glitchy things that happen.
They are small and there is always a solution for them.
• It’s always a tough decision to make but the benefits are huge.
• I would not say that the ACE works for everyone. There are a
small proportion of kids with very serious NID for whom the ACE
doesn't work or is a partial success. Some of my child’s doctors
prior to the interferential therapy would have argued that his had
effectively failed because of the amount of time and energy we
were spending on care. 18 hours care at minimum a week isn't a
success story. No amount of tweaking and fiddling actually got his
bowel functional really. All I was doing was preserving the bowel
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