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ACE stoma

(7 Posts)
figgy48 Wed 17-Jun-15 18:16:50

My 12 year old daughter had surgery for an ACE stoma 4 weeks ago. Her lowel bowel doesn't function, plus there's an issue with her muscles clenching when they should relax. She's spent years on huge amounts of laxatives but all that did was enable runny poo to dribble out (up to 7 hours on the loo).
She's still struggling post-surgery, not yet back at school and generally feeling crap. The wash outs cause very bad cramps that generally last for hours afterwards.
Could really do with talking to anyone who has been through similar! sad
Big thanks.

Iamaslummymummy Wed 17-Jun-15 18:33:46

My friend who has a son with an ace belongs to Breakaway who I know help her a lot

Iamaslummymummy Wed 17-Jun-15 18:35:28

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Iamaslummymummy Wed 17-Jun-15 18:35:42

lostlalaloopsy Wed 17-Jun-15 18:47:48

Hi figgy

My 6 year old dd has had her ACE for over 3 years now. She was born with imperforate anus and was missing her coccyx - which turns out isn't really as useless as people believe. She only has half a sphincter and so has little control, but has a really large colon so really struggles with constipation. She has VACTERL so has a few other issues - poor wee thing!!

The ACE has been great for us. We used have to do anal washouts which were a nightmare. We use about 750 mls of water and 2 sachets of movicol, she usually sits on her little toilet seat for around 30-45 mins. It usually works fine, but do have problems if she's had too much junk food or not feeling great.

Do you use movicol? Maybe she could take some orally to help with the cramps? Is there a bowel specialised nurse you could discuss it with?

I don't know if I've been much help!! I hope you're daughter is doing ok, it must be hard getting it at 12 which I'm sure is a hard age anyway. I've heard Breakaway are great, they run residentials for children and young people with bowel issues - it might be an idea to get in touch with them.

If you have any other questions, please let me know x

pudseypie Wed 17-Jun-15 21:31:10

I'm another Breakaway mum and thoroughly recommend them. There's a Facebook site you can ask to join then you can chat to other parents with kids with similar diversions and they also organise regional get together.

figgy48 Thu 18-Jun-15 09:27:21

Thanks everyone, I'm going to speak to Breakaway today.

lostlalaloopsy - she takes 3 movicol a day to keep things soft for the washouts. She was on 10 a day pre-op.

I'm concerned about how long it's taking her to recover from the surgery, she's really frustrated that she's still not back at school. She's year 7 so first year of secondary, it's a difficult time to be away.

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