ACE/Bowel problems in children

[buzzgirly]

Hi

I'm not sure if this is the right place to post, but I was looking for some help. My daughter recently had an ACE procedure done to help her go to the toilet - she was born with an imperforated anus and has struggled with constipation and bowel control. We are struggling using the washouts - so I was wondering if there is anyone else in a similar situation? Or if anyone knows of any sites with support for children with bowel complaints? I have googled but not much has come up.

Thanks x

Hi buzzgirly

My DD (21mths) was also born with IA and has just had her stoma reversal. There is a stoma thread on here which has quite a few posters on it who have DC's with similar issues.

There is also a good support group on the web for VACTERL children and I'm pretty sure some people on there have had the ACE procedure. I also find the IA support group on Facebook really helpful - you have to apply to join both of those as they are members only.

HTH and good luck with the washouts - how old is your DD? Mine was born with IA and a rectovaginal fistula which she used for the first few weeks of her life until she had a colostomy - but it wasn't coping so we had to give her daily washouts/enemas which were horrendous so I empathise.

Rach xx

Hi Rachel

Thanks for your quick reply! My DD is 3, she was also born with a cloaca which I think may be similar to your DD's condition. DD had the stoma reversed at 15 months and it's been a bit of a rollercoaster since then. How is your dd now? I will look at the thread you mentioned - thanks for your help

I've no direct experience but wonder whether the Colostomy Association may have some help? (I know the stomas are not the same but I think they do have experience of [M]ACE stomas).

Best of luck x

Hi Buzzgirly

You're welcome - it's always nice to meet another IA parent! Yes DD has a partial cloaca as her urethra is out of position, also one duplex kidney and a slight spine curvature. She was also born with 2 holes in the heart and pulmonary stenosis - although thankfully all of the heart issues had rectified themselves by the time she was 6 months old. She is thankfully doing well so far post reversal - we're on an average of 8 nappy changes a day at the moment but I panic as soon as she has a day without passing much - like today!

Sorry to hear you've had such a tough time since the reversal - I am familiar with the ACE procedure but didn't realise they did at such a young age. I can imagine trying to get a 3 year old to sit on the toilet for so long to do the washout must be a nightmare.

Definitely recommend the facebook group - it is well subscribed with posters from the US and Canada as well as over here - and the responses are pretty quick. I can always introduce you if you can't find it - just PM me.

Rach x

Hi there i have a nine year old with an ACE , if i can help at all i will....We are in a slightly strange situation as she has a colostomy too but we still use her ACE.xx

Hi

thanks member I will also have a look at the colostomy association for advice.

PUMBA How is your DC coping? When did they have it done? I thought the ACE was going to be the answer to everything but it has been much trickier than we first thought.

hi everyone i have a 10 yr old boy with Ace stoma -we re having a few problems -would love sone advice !! he recently had to have the stoma dilated cos it narrowed but he s complainibf of pain still (2 weeks later ) anyone else experienced this? since the op 2 years ago site has bb sore, stoma scabs over a nd now he keeps a stopper in all the time. hospital keep telling me it shouldnt be hurting him, but he keeps saying its sore . any advice please? im so pleased to have found this thtead ive been looking for years for something like yhis ! any help i can give ask away -my son born with imperforate anus , he had colostomy , pull thro , reversal of colostomy, then laxative regime, then lower bowel wash outs and then Ace 2 years ago