ace malone

[jules^]

hi all , my daughter was born with a condition called cloaca , she had a colostomy until she was a year old , then two weeks ago she got the "ace" (shes 5btw), this was an elective surgery to stop her soiling , she also had surgery on her prolapsed bowel. S o far it all seems to be working well , but she hates and i mean hates having the washouts, tis a screaming match just to get her to sit on the toilet . She has been a brave lil girlie ,but we still have the screaming !!!
she still has the cathater in for maybe another 8 weeks permanantly then we can think about getting it removed and insert it every night .
Tis very hard for me as a mother to imagine what shes going through ,the feelings she gets when she has the washouts i mean does it hurt???
i heard from a lil birdie that there are a few on this site that have the ace malone so here i am HELP !!!! LOL
love
Jules
PS my lil girlie is called hannah

[Melanie]

Hey.. I'm 17 and also have cloaca, but have a colostomy and mitrofanoff instead..

i chose to have the colostomy over the ace malone for my 10th birthday..

I cant really help, but i dedcided to reply anyway.. i mentioned this post to a person i know who has had the ace malone.. maybe she can help you...

Melanie

[~Katie~]

Hi Jules and Hannah,
My name is Katie and i like Melanie am also 17. I was born with an imperforate anus adn had a colostomy til i was about a year old, when I had a pull thru done. I did bowel management along with Enemas every other day for the next 16 years and decided last year that i wanted to go ahead and get the ace malone. I have met several people, from ages 11- 20+ who loved them at the youth rally (which is amazing btw!) who have one and loved it.My parents told me about it when i was 10 and i went to youth rally to meet other kids in similar situations and see waht they had and what they liked etc. But i decided i didnt want to have surgery, but as i grew older i began thinking how nice it would be not to do the enemas, and how college would be easier if i could just do the washout, So i finally decided that the ace was right for me and on June 7th of this year i had one done. So im still kind of new to this. I had a catheter in after surgery for only about a week and hten they took it out. and i had to insert the catheter everynight. As far as the screaming goes, im sure its annoying for her, i remeber when i was little having to do enemas and just not being to happy about that! as far as having an ace goes well i dont think its really painful. It can be kinda of sore at times, but i think thats just because its new, adn sometimes it can be uncomfortable and a cause some pressure but its not extremely painful. I know it must be frustrating as a parent to deal with all this, i know my mom was always busy and doing all she could to help me. Hannah and I are lucky to have mothers who care so much. And when she gets older she will be able to do it on her own and once i was able to do my enemas and all by myself it was much easier. I went to girl scout camp and did all sorts of things. I also got on a plane and flew to teh youth rally by myself every year for 7 years from the time i was 11-17. I know shes still very young and 11 seems a ways off, but when she gets old enough i definitely suggest the youthrally, its amazing to meet kids who are going through the same thing, and i really cant describe what that camp has done for me its amazing! Well i guess i wont make this post to much longer, but if you ever have any more questions i will do what i can to answer them or see if i can find someone who will know the answer. Good Luck! Its nice to meet you and your daughter!
Katie

[jules^]

wow ty for the quick replys!!! we live in the uk so i think maybe camp would be impossible and very expensive lol , tis a shame there is nothing like this here in the uk ..............maybe i could start one LOL
tis nice to here that we are not alone on this trail .....
katie , u got your cathater out after 1 week? wow hannah will be happier im sure once the cathater is out and she can move about more freely....since she had the op we have been using 200msl water and .5 mls bisycodal , and appart from one lil accident with soiling it seems to be working ok im sure its the bisycodal that is giving her the cramps , she says" mummy my tummy is bubbling" guess its just all filling up....tis early days and we will get there
i just pray for the day her stubborness lessens and it isnt so much of a battle , now i know what her surgeon meant when he said , julie, she is very very young for this operation she NEEDS to co operate else it wont work !!! lol wasnt he right
xx
jules

[Bren]

Hi, I'm Brenda. My granddaughter Jasmine lives with me and just turned 4. She was born with a sacrococcygeal teratoma, or SCT. This is basically a tumor which was attached to her tailbone. Some of this tumor was also in her pelvic region and was removed the day after her birth. The damage to her nerves and muscle was either caused by the tumor itself or the removal of it. It also turned out to be cancerous so she has gone through 8 rounds of chemotherapy and I can thankfully say that she is today, cancer-free! She is scheduled for surgery at the Children's Hospital of Philadelphia on the 22nd of Jan. for a mitrofanoff and ACE. ( Her urologist called it a MACE?) I'm to say the least a little nervous and any info or suggestions would be great. Thanks in advance!!
PS What a great site!

[jules^]

hi bren hannah got her ace /mace ( tis the same thing) 3 weeks ago ..............she has recovered really well , the hardest bit has been to get her to co operate with the washouts.its taken 3 weeks but im pleased to say we now have "peaceful" washouts lol no screaming hahaha hannahs surgeon made it very clear b4 she had the op that we neded to prepare her and make her fully understand , very hard with a 5 year old so that she would co operate !!! im glad we stuck it out thought cause in three weeks we have only had one little accident go for it bren the only thing i will say is get books toys anything in your bathroom so that she will sit happily until the washout is done xxx
jules

[Bren]

Thank you so much Jules. I am really nervous about this and the encouragment helps. I am worried about the operation itself but I'm also wondering how the recovery goes. Jas' urologist said that she would spend about five days in the hospital and a month to recover completely. That seems like such a long time! She attends pre-school four days a week so I don't even know when she will be able to return. I wonder what her restrictions will be?
I'm glad to hear that Hannah is doing well with her ACE. Does she also have a Mitrofanoff?
Take care and thanks again!
Brenda

[jules^]

hi , hannah has managed so far without a mitroffanof :(sp) she was in hospital about 10 days 5 weeks to let it all settle and then about another 5 getting the ace to work . ie getting the right amount of fluid in it for all the poo to come out . I think the way she reacted in the begining ie a screaming tantrum didnt help the procedure, hannah is due to go back to school next week , but to avoid pe and too much physical stuff for another few weeks . Im not sure about your system cause im in the uk but hannahs school have been great , i mean i will be on hanfd at hone incase anything goes wrong but hopefully other than re applying a bit of tape to keep the cathater attatched to her body instead of dangling no one need really touch it .
sp far as the recovery hannah was out of bed the next day , shuffling like a little old man lol i would say after about 5/6 days she was up and about walking like normal , im sure as hell i wouldnt have been if they had done that to me lol
julesx

[jules^]

jez i cant type just re read this she was in 10 days 5 days snot weeks to let it settle LOL
JULESX

[Rosemort2004]

Hi, i'm new here, my daughter has an ACE/Malone. She's 11 now and does all the washouts herself.
She recently went to girl guides camp for the first time away without me. She handled it all herself (the leaders just made sure she had time and an appropriate space). So even a normal camp is possible for kids with an ACE.
The ACE is great, she has a normal continent life 23hrs a day (the 24th is spent sitting on the toilet

[Linda YouthRallyCommittee]

Just a couple days after you finished posting on this topic, the UOAA opened a new Discussion Board just for PARENTS. You can see it by going to the Index -- it's #2 on the list.

Thanks so much, Melanie and Katie, for adding your own experience for the benefit of Hannah and others who read this in the future. You are showing how you've really internalized the Rally way of sharing!!

Linda