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Daughter needs an ACE

3 replies

Yummum19 · 04/04/2017 11:32

Does anyone have any experience?

My daughter's surgeon has advised me she will need this. (Has given me some time to get my head around it) She is only 4.

She had her colostomy reversal a year ago and since then has made no real progress with toileting and is almost always impacted. She was born with a rectovestibular fistula.

What exactly is it? How does it differ from a colostomy? And how would it affect daily life?

Sorry for the list of questions, just really worried and disappointed things still aren't working out for her! Sad

OP posts:
Are your children’s vaccines up to date?
Gooseygoosey12345 · 04/04/2017 11:40

Sorry I can't help as I have no idea but couldn't read and run. Have you spoken to your gp and found out all the info that's available? It might help to put your mind at rest as much as possible BrewCake

Yummum19 · 04/04/2017 16:02

Thank you Goosey

GP isn't much help sadly, this is part of a wider syndrome and he's admitted he can't help as doesn't know much about it. I've had some information from her surgeon but I guess I just wanted honest advice from people who have lived through it. The professionals never give every detail, they just always make it sound like it's an easy option.

OP posts:
DancingLedge · 04/04/2017 16:40

Flowers for you and your child.

No personal experience, but some links hope they help.

Except can't actually do proper links from this android, sorry.
www.shine charity.org.UK/spinabifida/ace procedure
www.gosh.nhs.uk. this one has quite a bit about possible problems and solutions
Thread on MN, from 2011 titled ACE/bowel problems in children

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