MACE/ACE

tsal · Post by **tsal** » 2008-09-27 11:30:34

Im new to this site, but was really pleased to find somewhere to actually talk to other people about my problem!

i was born with an imperforate anus, & had a pull through operation when i was a baby, since then all the doctors had treated me for was constipation! Which involved lots & lots of oral medicine, which never reallllly worked, & mostly has caused me to feel really uncomfortable & having to have lots of time off school or work etc which i hate! Im 17 now, & am desperate to have a normal teenagers life, but feel constantly worried about accidents etc, as i am NEVER clean!! Iv managed to keep it a secret from nearly everyone in my life, which has made me quite lonely for a long time, so i was looking on the internet for some sort of treatment, & found the ACE procedure which sounds like it might be what i need! i have tried enemas but they dont work, & i really hate having to use them!

Anyway i was just wondering if there are any other people that have had it done, & could explain to me what its like, & if it really works? Im waiting for an appointment with my specialist, but im pretty nervous!

Thanks, tess x

jules^ · Post by **jules^** » 2008-09-28 16:44:19

yes lol it really does work !!! im sorry u are having a tough time atm ........my daughter is 7, she had her mace 2 years ago and its worked fine ever since.....ie no soiling...the best thing i can suggest is go speak to your docs, check its suitable for you ....if it is then go for it!!!!

~Katie~ · Post by **~Katie~** » 2008-09-29 23:50:26

Hey Tess!
My name is Katie, I am 19 and was also born with an Imperorate Anus. I had a ostomy when I was a day old, and then had a pull thru when I was under a year i think. I did the whole bowel management thing and enemas til i was 16. I never told a sole anything thing about what I had, it was kept a complete secret, which I agree can also be isolating. I started going to the Youth Rally at age 11 and was a camper until I was 17 for 7 years.It was a great outlet to talk to people who understood it whom were my age or older. I met several people with the ACE/Malone, but at age 11 the idea of surgery wasn't so appealing since It wasn't a necessity. So i didn't end up getting it... but i kept thinking about it and asking people at the Youth Rally what they liked adn disliked about it. I finally decided when i was 16 that it would make my life alot easier since I knew that college was approaching. I got the surgery a month to the day after my 16th bday, and I am sooo glad i did!! It has made my life so much simpler and it works really well for me! I would love to answer any questions you have! I would definitely consider it getting the ACE/Malone if your doctors think you are a candidate for it! I would love to answer any questions you have!

tsal · Post by **tsal** » 2008-09-30 13:22:34

Thanks for your replies! Katie, i suppose what i would like to kno is the good & bad sides of it? is it easy to do? & what the operation was like before & after?
Im getting so fed up of worrying about not being clean all the time its meant that i couldnt start college this year, its feeling like its stopping me from doing what i want to do in life! I just want to know if it really means that your clean all the time?
Thanks so much, cant explain how nice it is to speak to other people about it! Theres nothing like this in the UK that im aware of!
xxxxx

sheri, Cameron's mom · Post by **sheri, Cameron's mom** » 2008-09-30 19:56:39

Hi there,
My son has an ACE Malone. He is 6 years old and had his Malone placed when he was 5. He does great with it. There is no soiling unless he's sick, then we just line his underwear with a pad as a precaution. I tried to look around for the ACE in the UK (did a Google search) and it lead me right back here. It seems that Jules might be able to help you with that. Here is a link to a discussion a while back where she talks about the Malone, it appears that she is from the UK. http://www.uoaa.org/forum/viewtopic.php?t=3703

My son has been very pleased with the ACE Malone. It was his choice to have it done over the rectals he was getting previously. A week of surgery and recovery was well worth it!

Sheri

jules^ · Post by **jules^** » 2008-10-01 17:07:13

hiya tsal ......tis correct im in the uk ......i live in the midland , england! Where abouts are u? what hospital are you under, Hannahs had all her surgery done at Leicester..

Now then you say u are 17 Right? if u are interested in chatting to any other ostomates your ages (and some younger) ......i know a few your age group with the ACE ....have a look at this link

http://www.breakaway-visit.co.uk/
if u want any more details u can contact me through the websitex

The ACE has been the best thiung we ever did for Hannah ........her confidence after her op doubled....... let me know where in the uk u are ...and what consultant/hospital you are under

Take care
Julesxx

tsal · Post by **tsal** » 2008-10-02 10:27:18

Heya call me Tess

Thats so great that there is an actual group in the UK, i asked my doctor & he had said he couldnt find anything! Obviously didnt look very far!
Im in the south west, it would be derriford hospital, if they do it? but im not sure! My consultant is Ms Adams, but iv only seen her about 3times, i had been given rectal enemas to try, but they didnt really work & i HATED doing it, so im waiting for my next appointment now! I found out about this ACE op, & am thinking it will be right for me, im just a bit scared etc! Hate living in constant fear that some accident will happen, & especially as im 17 i want to be going out & not worrying about things like that! Thanks so much for your replies

xxxxxx

Rosemort2004 · Post by **Rosemort2004** » 2008-10-04 04:42:51

My daughter is 13 and has an ACE. It's great, she is clean 24hrs. None of the kids at school even know anything about it. She has even been on school camps too, with no problems.
Good luck
Rosemary
NZ