Need Ace Malone Bowel Management Program

[Citabria]

Hello. I’m new to this board and grateful for the resource. My now 41 year old wife was injured in an automobile accident 8 years ago which resulted in paralysis. She had the Malone Ace procedure done here in Mississippi 6 years ago. To this day we have never met a Dr. or other medical professional having ever seen a patient who has undergone this procedure. We desperately need to have help with her bowel management program. After 2 hours of straining to support herself on the toilet pretty much daily my bride is exhausted. The UTI’s are one after another. Our local doctors show no interest in figuring out where to refer us. My inquiries to Cleveland Clinic and others having experience with this remain unanswered with the response being to make an appointment (with a Dr. who may or may not have any experience with the Ace). Surely, there is somewhere we can see an experienced Dr and figure out a flush protocol which will have her on and off in an hour or less greatly improving her quality of life and help with the UTI’s. Our local Dr’s will gladly make the referral if we only knew to whom. With a plan to go somewhere, be seen by a Dr. and stay for a reasonable number of days to work out the flush protocol would be approvalable by work comp. Any recommendations are greatly appreciated. It would really be nice to communicate with others having had this procedure. Thanks and God Bless, Linwood

[Diane C]

I'm sorry to hear about your wife's accident and difficulties. I've had a MACE since 2000 and it's been quite easy to handle. I'm probably facing more ostomy surgery but not because of the MACE.

This procedure is somewhat standard at this point. Usually, it's performed by pediatric surgeons so you may want to contact that kind of doctor. However, I don't know that doctors would be that useful in offering you a program to follow. You might see a wound care or NT nurse instead although many don't have backgrounds with the MACE.

The Cleveland Clinic in Weston, FL has a colorectal department that's well aware of the MACE surgery. I happened to go to the U. of Illinois at Chicago Hospital in 2000. It was not done by laparoscopy then and is now.

My MACE is easy to manage. I insert an 8 French catheter into the small stoma of my navel and pump plain water through. I happen to have a colostomy so the stool comes out in an irrigation sleeve. I've never gotten a UTI from my MACE. Perhaps the surgeries are different. Anyway, I encourage you to contact a colorectal department and speak with a pediatric surgeon.

Good luck.

Diane C.

2000 MACE
2002 Colostomy