bowel problems and ACE (enema by catherter)

[sawjd]

Hello everyone,

 

sorry i have been off this site for some time but we have been extremely busy collating and copying evidence seeing consultants regarding getting help for our k as his tribunal is fast approaching. In the meantime we are now concerned as k is still not being able to feel the need to go properly and now the consultant has said that k is a 'good candidate' for a procedure called ACE. My question to you all is does anyone know what to be wary of when having this procedure.

 

I could have screamed at the consultant as he was saying its now a medical thing that k has and i said this situation developed as he was originally stool witholding which is why k's bowels have becomed so stretched that he now cannot feel bowel movements. Its behaviour as k sits in his messed pants and does not clean himself unless told to do so, so some level of supervision is needed. Its been a hectic week and we are concerned now as to what if anything does or is needed or who to inform about this procedure.

 

I have tried to google this but there is no connection between school and this procedure. Is it just a case of letting staff know. We have sorted to a degree about the use of pads from the continence service so that is up and running, but we will not get a lot and k does go through some pads per day. If anyone knows of this procedure or has experience we would be grateful if you could give us any advice or tips. Many thanks,

 

with regards

 

sarni

[Pest123]

Look up "Growing Up Different" on Channel 4 On Demand, not sure which episode but there is a girl with CP who has this done. It helped her loads but was hard to get use to, the episode shows her mum flushing her out and her saying "it hurts, it makes me feel sick" and I know someone personally who has an ACE and they are ASD. They hate it, again says it hurts and makes them feel sick.

 

I think there are a lot of things to consider, of course it can be reversed but in some ways once its there, its there. It is a direct tube to the bowel, usually they use the appendix as the tube (so I understand) so, it has to be kept clean and looked after to prevent things like infection. Its not like an open would but it is a direct tube to the bowel.

 

Not sure if you have seen this links

http://www.hirschsprungs.info/Information/literature/ACE.pdf

http://www.shinecharity.org.uk/uploads/media_items/antegrade-continence-enema-procedure.original.pdf

 

But thats two info sheets on them.