who all has the ace malone?

Teen_KarlyP · Post by **Teen_KarlyP** » 2007-06-21 16:33:56

I've finally "ventured" off just the Teen site. And started paying attention to this one.
I was just wondering who all has an ace Malone. I've had mine for over a year (Feb 2006) and I only know of 1 other person on here who has the malone.

KaRlY

HaileysMom · Post by **HaileysMom** » 2007-06-21 18:16:52

Hi Karly,

The doctors did tell me about M.A.C.E. The physicians in New York - actually my daughters pediatric urologist - along with another doctor does the procedure. He had told me to look into it; but I opted for another procedure. There is a doctor here in New York that from what I understand is the best in the country. His name is Alberto Pena.

I wish you the best of luck. How are you adapting to your procedure?

Lee

Rosemort2004 · Post by **Rosemort2004** » 2007-06-22 04:33:26

Hi Karly

Annas mum here, from New Zealand. As you know Anna has a Malone, still works really well!
Hows everything going for you?

Cheers
Rosemary

Rosemort2004 · Post by **Rosemort2004** » 2007-06-22 04:40:52

hey I read your post in the teen bit (but I'm way too old to reply to it there LOL). As you know Annas is also right side...she likes her belly button too LOL. If you want to avoid the scabbing over I can't remember if your Mum got an ACE plug from me or not? Anna has hers in most of the time (only cos she's too lazy to take it out, it's supposed to be just at night). But it might be good for you because the flat top on it also protects the stoma from things knocking or rubbing on it so might make jeans etc a bit more comfy. Get your Mum to email me if she wants one.

Cheers
Rosemary

jules^ · Post by **jules^** » 2007-06-23 17:26:33

My daughter hannah has the ace too :p all going well....if u need any ace stoppers plugs i have boxes of them ( good old nhs ) i could send u some xxx

~Katie~ · Post by **~Katie~** » 2007-06-23 18:14:07

Hey Karly,
I too have the ACE/Malone. I did not get mine in my belly button i got it on my right side lower so it doesnt show when i wear a two piece swimsuit or anything. I got it June 7 of last year so i havent had it very long. There are several kids at rally with them also, so im sure you will meet a ppl with it there which is always nice. There are a few counselors too! Well i g2g but i'll ttyl
Katie

Teen_KarlyP · Post by **Teen_KarlyP** » 2007-06-24 20:30:19

HaileysMom wrote:Hi Karly,

The doctors did tell me about M.A.C.E. The physicians in New York - actually my daughters pediatric urologist - along with another doctor does the procedure. He had told me to look into it; but I opted for another procedure. There is a doctor here in New York that from what I understand is the best in the country. His name is Alberto Pena.

I wish you the best of luck. How are you adapting to your procedure?

Lee

Lee,
I actually know dr. pena, i went to New York when i was like 6 to see him. He and his partner Marc Levitt are now in Cincy Ohio, and that's where i go for all my apts. Dr. Levitt did my malone last year, and i think pena may have been in the room when it was done, but i'm not positive. Their both GREAT doctors. They just started their big clinic thing in Ohio like 2 years ago, i was actually the first patient to visit most of the different doctors that are all tied together through this stuff with their clinic. They all do a very good job. I'm going to Cincy for the VACTERL conf. next weekend and while we're there i'm having my apts. they are just wonderful there, it's a really nice set up.

Karly

Teen_KarlyP · Post by **Teen_KarlyP** » 2007-06-28 21:44:57

if ne one has ne experiences w/ their malone please if you can say something, so we can learn from eachother, and if others have had the same problem, we can compare notes.

Karly

Teen_KarlyP · Post by **Teen_KarlyP** » 2007-07-15 22:16:10

hey everyone, I was just wondering if there were ne more m.a.c.e's out there that haven't said ne thing, I'd really like to know. And also if there are ne tips u've learned through experience, I would appericate hearing them. And i'm sure others would too

gillian · Post by **gillian** » 2008-01-23 09:01:08

Hi! I'm Gillian and I just got the ACE 3 weeks ago. So far it is going really well, but I don't know many people with it. What is an ACE plug and where do I get one? Speak to you all soon!

Rosemort2004 · Post by **Rosemort2004** » 2008-01-23 13:26:35

Hi Gillian

My daughter has an ACE, she is 13. you're probably finding it a bit difficult initially, but once everything settles down they are great.

I have ACE plugs available in 8fr, 10fr and 12fr. I've sent you a private email so you can contact me direct for details.

Cheers
Rosemary
New Zealand

Eric E · Post by **Eric E** » 2008-01-23 14:18:16

I've had mine for about 11 years. As I may have said before, anyone, feel free to PM/Email me if you have any questions or just want to talk.

Cheers,
Eric

Teen_KarlyP · Post by **Teen_KarlyP** » 2008-01-23 20:45:32

Gillian,
Welcome first off. Second, I'm glad to hear of another ACE person. I've had much contact w/ most people on here w/ the ACE and they are all wonderful people and are very helpful. We have gotten our ACE plugs from Rosemary, but I actually haven't been using them b/c I experienced some pain and such from them. I'm sure they are really good, and if my hole started closing again i could manage it, but for now i'm not using them. You may be having some troubles the first few weeks, and then again you may not be. Has your doctor had you take the cath out yet, or is it still in place? Is your's in your belly button of on the side? those are some things to talk about/change how things work and who can give the best imput on here. We all know what's up from personal experience, but also the closer the "systems" is to one another the better it is to help the others out. Feel free to PM me any time, w/ questions, or just chat. This board/teens/beyond/PM's are my life, some ppl never leave myspace/facebook/youtube, i never leave this.

Hope to hear from you soon, and hope everything is working well.

luv yalz
♥Karly

gillian · Post by **gillian** » 2008-01-24 15:28:10

Hi everybody! Thanks for responding. I got my ace on my lower right side. At first they were going to do it in my belly button, but I have a piercing, so they wanted me to be able to keep that

I got the tube taken out two days ago...i was so scared it was going to hurt, but it didn't at all! i've been having some trouble with the irrigations because the catheter and feeding bag tube keep coming apart and going all over. I'm going to try to use a different bag tonight. Do you guys know many people with the ACE? Talk to you guys soon!

jules^ · Post by **jules^** » 2008-01-24 17:04:14

hiya gillian .
my daughter got her ACE last year

and i love it lol
took a wee while to get used to it all and how it all worked but we have mastered it now ...my daughter is 6 btw

every now an again the cath shoots off the irrigation tube bit too with us.....i think sometimes maybe if i slowed the water down a bit it wouldnt do it ....if its flowing too quick then pop off it comes it has no where to go lmao til u get to know whats what get an old towel to the ready lol and keep smilling even whilst covered in the contents of the feeding bag ...u will get there:)

the ACE stoppers/plugs seems not all people use .....but really people in the us pm me if you want any i have a little stock pile LOL

love Julesxxx

UOAA Discussion Board

who all has the ace malone?

who all has the ace malone?

Hello Karly

Re: Hello Karly