ACE procedure experiences

[Undertheboardwalk4]

My son has recently had surgery for the ACE stoma. He is 6 and hates it, he is on the autism and ADHD pathway so i thought he would be able to handle it as we can get into a good routine with it but so far he is not doing great with the washouts.

i dont know anyone else who has an ACE personally, but the few people ive heard of who have had one has since had it changed for a stoma bag.

its very early days with my sons ace at the moment so i know the issues we have been having are likely down to thing (things like the ALL fluid coming out 12 hours later and nothing in the hour he spends on the toilet).

i just wondered what other peoples experiences where? If the ace had to be changed to a stoma bag what were the reasons for this?

What are you using for the flush? We ended up using a litre of saline, bisacodyl and glycerine because he needed the volume as well as an irritant. Water is recommended but I don't know anyone who had success with just water!

Are you cathing him? Does he tolerate that? It's possible to get a Chait button or a MicKey if he struggles with the cath?

My son had an ACE for 20 years. It was a disaster in the last 5 years as the ACE stopped being continent and he needed a stoma bag. Because the stoma was flat, the skin excoriation was dreadful. His paed surgeon flatly refused to do an ileostomy but I finally found a colorectal surgeon who was happy to do the operation.

For us the ileo was the right decision. He no longer struggles with washouts--he has megacolon so we were doing washout every second day and a litre of movicol through a feeding pump then his normal washout once a month to flush retained stool. It was a nightmare situation. I think if he hadn't had the extra challenges we would have retained the ACE and just had a revision done. He's II and ASD and by the end he hated his ACE. We're facing another operation in the next few months and I want the ileo revised but my DH wants another ACE. Really not looking forward to the next consult with his surgeon.

Thank you so much for your reply. He has only had the ACE for 2 weeks so we're extremely early on. He was discharged from hospital on 50mls sodium phosphate and 200 mls saline but the stoma nurse has told us to increase it to 250mls. I have heard of a lot of people needing to change to an ileostomy afterwards and they have all said they wished they'd had that first. Because its still early days so naturally a difficult time adjusting, hearing this has made me feel a little worried that this may not be a long term solution. In the past when he has had enemas or laxatives they work great until they don't, and its like they have no affect at all so i am worried this will happen with the ACE.

I might not even need to worry about this and hopefully it will work fine. He currently still has the tubes but our hospitals procedure is to use a mickey button which im happy about because i dont think he would catheterise or
cope with it. He wont look at his tummy at all. But again, its early days.

He is also very early on with trying to get an autism and adhd diagnosis but i feel like his asd and adhd traits it may make the ACE a lot more difficult and i could have anticipated.

I'm hoping all this uncertainty i have is down to us being very early on, and possibly because not many people speak of positive experienced compared to when it doesnt work.

I hope your son's next operation goes well, it can be hard to know what to do for the best

2 weeks is very early days. It's odd because my son is the only person with an ACE I know who chose an ileostomy. I think when they are working, they can be much easier to live with than an ileo.

Did your son get a diagnosis or was the ACE done on the premise that his bowel just doesn't work? I think it is very unlikely that the ACE won't be effective longterm, they work very differently to oral or anal laxatives. Does he have megacolon? If he does, that amount of flush may not be enough. How are you putting it in? Syringe or gravity fed? We found gravity fed slowly worked much better than the syringing.

It will be much easier with a MicKey IMO than cathing daily. The cathing was the bane of my life for a long time. The length of his lumen meant we had to use a Chait and it was very problematic. Our surgeon preferred cathing to indwelling buttons.

Still really really early days, hang in there. My daughter had an ACE which unfortunately never worked from the beginning.

But I've heard so many positive stories about the procedure, it's really 50/50. We now have a colostomy but glad we gave the ACE a go.