noisy ACE

[gillian]

Hi, I have a question....I just got my ACE January 1st and everything is going pretty good (besides the stoma starting to close ). Recently gas has been coming out of my stoma and it is really loud and smells (sorry guys!). Is this normal? Does it happen to anybody else? Are there ways to prevent this?? Thanks so much!

[deblb]

Hi Gillian,
My daughter also has an ACE which can be a little noisy. It also expells an odor, fluid and gas daily. The way that she deals with it is to put on two 2x2 gauze pads taped over the stoma. This helps, especially when she is in school. It would be rather embarrassing to have uncontrollable noises and smells coming from her stomach in the middle of class. She has had this problem for over a year now, but the wraps have really helped. Good luck.
Deb

[sheri, Cameron's mom]

My son's ACE doesn't do this. I know his surgeon said that they do the Malone now that includes creating a valve made out of tissue so that when you remove the cath, it closes. No smell, no gas and no liquid comes out of Cam's Malone site (knock on wood...it's been just less than a year since he's had it). BTW, I hear people say stoma, but Cameron's is just a little pin hole in his belly button; do others have something else stoma-ish like a colostomy?

Also, I have the email address of the person who sells the ACE Plugs to keep the hole from closing. They're not available in the U.S., she's from NZ and we've purchased a few and love them. Email me if you're interested.

Sheri, mom to Cameron 6 w/HIA (VACTERL) now has an ACE Malone

[gillian]

Hi! Thanks for the responses! I talked to my surgeon about it, and she said that it is because I keep my catheter in all the time ( I have to because it closes, but I'm getting a MC-KEY tomorrow). I have the valve too, but it is kept open because of the tube. My stoma is small, too. I'm not positive, but I think all ACE's stomas are smaller than one for a colostomy. I can't wait until tomorrow to get this catheter out--yay!!

[Rosemort2004]

that's me! thanks Sheri
My daughter has an ACE, we don't find a problem with gas, but if she leaks it's always a sign that she's getting blocked up. Even though the flushes are still going through it's very easy for them to still be blocking at the same time.
So a stronger recipe or more frequent flushes can often cure the leakage problems.
Plugs, my email is aceplugs@gmail.com

Cheers
Rosemary
NZ