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Anyone with Experience of an ACE procedure with their child please help!!!

(6 Posts)
becks130 Tue 13-Dec-16 19:36:01

Hi my almost 7 year old daughter has suffered from chronic idiopathic constipation for 5 years and we have been through hell with it😪. After years of constant high dosages of laxatives the Dr has said that the only thing that they can do to help is an ACE procedure. She is a very happy (when she's not in chronic pain) out going and active little girl so this worries me hugely. At the moment she is missing a lot of school and has between 2-4 leakages per day which means she has to wear pull ups, this has also led to her being bullied.

Has anyone else had a similar experience? How did the ACE impact on your little ones life? What was their recovery like after the operation?

Thanks in advance x

Tweedledumb0 Tue 13-Dec-16 19:38:59

Message withdrawn at poster's request.

Tweedledumb0 Tue 13-Dec-16 19:42:03

Message withdrawn at poster's request.

MyHeartIsInVirginiaBeach Wed 14-Dec-16 18:54:06

Hi. My 16 year old son has had idiopathic constipation for 4 years now. Tried cutting out gluten and dairy but this didn't help. He's tried most laxatives and has constant problems with his bowel not fully emptying. Tests at the Evelina hospital, London confirmed that he has slow transit time in his large bowel. ACE has been mentioned but he is now going to try Peristeen daily enemas from January. He has been referred for this by his consultant at our local hospital. This involves passing a small catheter into the rectum in order to pump some water inside. This causes the bowel to contract and emptying the contents of the lower part of the large bowel. It is a system that can apparently be successfully used with young and disabled children and adults. If you google it you can watch an animated video on the Peristeen website to show what is involved. We're hoping it will be successful as my son has so much time off school due to pain, diarrhoea and nausea/vomiting caused by his bowel not working properly. Maybe you could ask your daughters consultant about the Peristeen system?

becks130 Wed 14-Dec-16 19:50:50

Hi,
Thank you so much for you r replies. She is on a dairy free diet and and she naturally steers clear of carbs as they bloat her. Your sons experience sounds very similar to my daughters. We have also been referred for peristen but she has a sever medical anxiety associated with anything in the back passage. She had a awful experience with an enema which was administered by a brutal nurse and there's been no going back since. She tried it out once and was extremely upset so we were advised to leave it as this type of reaction is very common in children of her age. Your son will get on much better as he will realise the importance and be a lot more mature about it. I hope it works for him 😊

VerytiredbutVerynice2016 Sat 17-Jun-17 23:07:16

Hello! Was just wondering how things were progressing with your daughter? Any further forward?
We've just started using peristeen this week with my son and I've been reading old posts!

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