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ACE/MACE Stoma

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Posted 7/7/2011 1:53 PM (GMT -5)
Im having surgery to creat an ACE stoma (one end of the appendix is connect to the begining of the bowel and the brought out to creat a stoma, the bowel is then irrigated by inserting a catherter into the stoma) to treat my severe dysmotility.

Ive found it hard to find others who have this other than kids with spina bifida so would really appreciate hearing from anyone who had ACE surgery as an adult.

Thncx
Posted 7/7/2011 6:21 PM (GMT -5)
Hi,

I can only talk about my daughters experiance with her ACE. She had her ACE done for motility issues, she was 6 years old, when we had that done. We fought a good fight for 5 years trying to make it work...all kinds of flushes, from go-lytly,saline mixed with various things, along with her taking oral meds,and being on special diets etc...It never worked the way it was meant to. Our whole life centered around the flushes , and getting them to work !! It was a nightmare !!

So we decided to do a partial colectomy(left side) to see if that would help make the ACE better...still a nightmare. So after another year we went back in and took out the rest of her colon and rectum(which is another long nightmare...)tried to reconnect everything didn't work, after several addmissoins and being very sick Drs finally agrred to an Illeo...BEST thing that ever happend to her as far as "poop" issues...but as like many other people on this forum we are finding out that her motility issues are progressive and she now has problems with her bladder system, small intestine, and her GYN system.

She does have friends with the ACE with motility issues and it works great. They do their flush, it works and they go about their day. I know of some of them also that don,t have to do it daily either. I think its a good option for some people. Its just with motility issues they just don't know, they are learning as they go...

Hope that helped. Feel free to ask me any more questions. My daughter is 14 now.

Krista
Posted 7/22/2011 8:38 PM (GMT -5)
Our daughter is 16.  She had a cecostomy (Chait tube) when she was 5 and it worked very well.  They used her appendix for hers also. She is immunocompromised due to an inherited disease and her stoma stayed infected.  Otherwise it worked great.  They removed it after 2 years.  Definitely remember to get your home health company to bring you a pole.  We kept hooking it on things in the bathroom and it wouldn't run right.  A pole allowed us to take the height up or down to adjust how it went in.  The faster the fluid goes in the more you might cramp. Too much volume too quickly.

She has just completed another motility workup to reasses and will start Amitiza.  If it doesn't work then she will get another cecostomy.

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