Malone (M.A.C.E / A.C.E) procedure. What plugs, buttons, etc

dothackers · Post by **dothackers** » 2008-09-06 01:01:47

Hi. I was born with an imperforate anus and had to get surgery to somewhat fix it. I had a colostomy bag for the first few years of my life. Is there any way to remove the scar? For the next couple of years I just lived w/o it and had surgeries every couple of years to keep my anus from closing and emptying my insides out. Then when I was about 12, I got the malone procedure done.

I have a 14fr sized "button" that goes in the right side of my stomach that has a balloon at the end to hold it in. It never comes out. I change it when it gets really dirty and I remember.. i haven't changed it in years.. and i order it online. I irrigate it every 3 days with 400cc's saline solution (1tbsp non-iodine salt + water) and I wait an hour over the toilet and it all just comes out with a BANG! I never really played with the amounts of liquid/salt etc.. only thing i changed was iodine to non iodine cus nothing came out with iodine.. or maybe cus it was the beginning. My anus is sort of aimed sideways so the toilet sorta gets messy.. I wonder if there is a solution to that..

Is there any solution out there that I can do that I don't need this tube? I have some control of my bowel movements.. but nothing ever comes out! or the pieces are too big and my anus is too small.. If they make it any bigger it'll leak and stuff. When I try to close it now I can feel the end not closing all the way.. like only the inside..and I can push somewhat.. So it is like a finger size. Any stem cell research to finish my anus/colon? any "pixie dust"?

I read you guys use buttons or something. I can't find anything in the states. Do you know where I can find a 14fr one in the states? how much are they? Can my insurance cover them? How do you guys use the plugs? Just slide the plug in? Is it flat? My button gets caught on things easily so i'm ALWAYS worried of it popping out..and it getting caught on things with the balloon inside hurts! So you take the plug out and stick in what? when you are irrigating? I don't get much mucus or anything but I think that is because the balloon is blown up.

So to sum it up.. How to fix colostomy bag scar? Where to find 14fr plugs and how to use it? Thanks!

jules^ · Post by **jules^** » 2008-09-08 18:09:04

hi i have a feeling i have replied to such a message on a different forum ...however my take on your situation is this...

Is there any way to remove the scar?
a scar is a scar.....i am sure there are lotions that people would con u in to buying ...but once as scar is there its there, in time they fade, but its there and its part of you and something u should be proud of!!

I never really played with the amounts of liquid/salt etc.. ...if u maybe slowed the solution down going in a little it may not be quite as explosive lol

[/i]I read you guys use buttons or something. I can't find anything in the states. Do you know where I can find a 14fr one in the states? how much are they? Can my insurance cover them? How do you guys use the plugs? Just slide the plug in?

firstly i would say ...is there a reson your surgeon opted for u to leave a cath in with a ballon or is it a mickey button?
We live int he uk and have the option of uising an ace stopper...(i will post a link to a pic below) you just put it in and cover it with a band aid until u need to put a cath in . the idea of an ace stopper is simply to keep the stoma patent. However i am not sure if these are available in the usa. Also b4 u were to use one if u could get hold of them u would have to cjeck with your surgeon as there maybe a very good reason u have a "button" left in your ace (mickey or cecostomy button).

Maybe some on in the usa would be of more help to you in your quest lol....... but really maybe your forst stop is with your surgeon to ask him ......if you have had your ACE along time then maybe you dont need to have anything in it? just a thoughtx

Hope you find the answers that you need
best wishes
Juliex[/u]

jules^ · Post by **jules^** » 2008-09-08 18:11:02

http://www.medicina.co.uk/stoma-care.html

if u scroll down that page it shows u what an ACE stopper is xxx
Julesxx

sheri, Cameron's mom · Post by **sheri, Cameron's mom** » 2008-09-09 22:41:29

Hi there,I can you give you the experience of our 6 year old son. He was born with IA. Colostomy on, off, on again, off by the time he was 2.5 years old. As for the scar...Cameron's is still there but is fading to a thin line. I've heard about maderma as being a good option to help fade scars.At 5 years old, he had his Malone placed. His is a hole in his belly button about the size of a pencil tip. You cannot see it unless you're really close and looking for it. There is no button or permanent tube in it. We introduce a feeding tube daily and flush his system with 600 ml saline, fleet and glycerine, then take it out. When he first had the procedure, we did purchase an ACE plug from a friend in NZ. Please pm me for her contact info if you'd like it. It's fairly flat, we used tegaderm over it. We used the plug every other day to keep the hole open, then we used it once a week. A year later, we don't need it at all. The Malone that our son has has an internal valve made of tissue that makes it so nothing comes out of the hole...no gas and no still or liquid. Other than finding a really good surgeon (Dr. Levitt in Cincinnati is ours) who can re-do your anus once and for all, I'm not sure if there is a solution to the sideways stool. I think it's a huge disservice to you that you've had surgery after surgery on your anal opening and it's still not right. Feel free to ask any questions!

Sheri - mom to Cameron 6 w/HIA, (VACTERL) ACE Malone

dothackers · Post by **dothackers** » 2008-09-10 23:15:32

I posted in the other forums but someone told me to post here for better responses and other people having the same stuff. I contacted Dr. Levitt about it about changing my mic-key to a malone in the belly button. That seems so much better. And maybe he can get my anus right! I don't know how I can go up there and stay there for many days to get checked out and have surgery during school. Got to find a vacation day and see how long it will last. Got to see if insurance covers it first. I never really researched this stuff 'till now since it's been bothering me mentally. Now got to try new things!

sheri, Cameron's mom · Post by **sheri, Cameron's mom** » 2008-09-11 08:39:09

Great news! I'm glad you've been in contact w/Dr. Levitt. If he can't fix it, no one can. You'll love the Malone. If your insurance co. denies you at first, don't be surprised and try again. I can't tell you how many people I know where their insurance denies them first but then gives the approval. It went that way with us.

You don't have to answer, but how old are you? Just because you said you're in school, so I thought you might be young. I wanted to say what a great step to take for a young person. I hope Cameron is his own advocate for his health when he's a young adult!

Even if you schedule it out for Spring Break or something, at least you know it's coming up. To have the anal opening revised and the Malone, it probably will be at least a 5 day stay. Are you far away from Cinci?

Sheri

dothackers wrote:I posted in the other forums but someone told me to post here for better responses and other people having the same stuff. I contacted Dr. Levitt about it about changing my mic-key to a malone in the belly button. That seems so much better. And maybe he can get my anus right! I don't know how I can go up there and stay there for many days to get checked out and have surgery during school. Got to find a vacation day and see how long it will last. Got to see if insurance covers it first. I never really researched this stuff 'till now since it's been bothering me mentally. Now got to try new things!

dothackers · Post by **dothackers** » 2008-09-11 16:23:17

I'm 17 and I live in Georgia. It's about a 7 hours drive.. Not sure if flying is cheaper.

I have been always looking for more information about my procedure ever since I got it but could not find much information on it. Then about end of last year I found another community of colostomy people then someone referred me to here. Then I emailed people about plugs and stuff and someone told me about going plugless! So now I'm trying to get Dr. Levitt (seeing that many other people got procedures done by him) to help me out. My insurance should cover it. Just need money/time to stay there! You guys have been a lot of help!

Rosemort2004 · Post by **Rosemort2004** » 2008-09-11 22:55:27

Hi again

I'm glad you spoke to dr Levitt and that you've had some more answers since we emailed. You can have a chat to him about whether you might need a plug or not. It's always hard to know with Malones till afterwards, some are fine with nothing, some tighten.
You'll love not having the MicKey in though. Is yours currently a right side placement? You can still have a Malone right side without a button, my daughters is. Did he say whether your current ACE is a Malone or cecostomy?

Cheers
Rosemary
aceplugs@gmail.com

dothackers · Post by **dothackers** » 2008-09-14 10:00:17

Mine is a right side but he said it is a cecestomy because it has a Mic-Key. And I forgot to thank you for all the answers through email! I was so caught up looking up the guy and asking him questions

Rosemort2004 · Post by **Rosemort2004** » 2008-09-14 15:12:37

Because you are in USA that may well be the case, but in Australia and New Zealand Chaits are frequently put in to Malone/appendix formed channels and sometimes Mic keys are used in this way as well. If that is the case they can also be removed but if it is a cecostomy they can't be. I guess your original dr would be the one to answer that question as i think there may be a few in USA that also do it that way, but it doesn't seem to be very common over there for some reason.

R

dothackers · Post by **dothackers** » 2011-09-16 04:01:35

Hey! Can't believe it's really been 3 years since I posted this. I just randomly wanted to look for anything new out there.
I got the Malone procedure done by Levitt about 1 year ago. Everything has been great since. Except I think I left in the tube too long at moments and the site is still is scaring. Slowly going away though! (Painful scar, makes it difficult to stick that tube in).

But yup. Much better than having a Mic-Key in me at all times. I barely remember having the key and can't imagine myself with it again! Crazy! Any crazy stem cell research that can completely fix it yet? ha. Anyways, all is good

I still am on the same irrigation plan. 400ml + <1 tbsp of salt every 3-4 days (twice a week).
When the scarring goes away.. it'll be PERFECT!

The old mic-key spot scar is barely visible but my old colostomy bag scar is still visible. I have been using ScarAway + Merderna and it's almost gone

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Malone (M.A.C.E / A.C.E) procedure. What plugs, buttons, etc

Malone (M.A.C.E / A.C.E) procedure. What plugs, buttons, etc

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Re: Malone (M.A.C.E / A.C.E) procedure. What plugs, buttons,