Questions about ACE/Malone (appendicostomy)... Anybody???

[~Katie~]

Okay so i just talked to a nurse about my appendicostomy which i am getting next week on the 8th, I am getting some conflicting information. How long is recovery time? How long til i can swim, drive, be crazy and active like i usually am, dancing and running etc? When can i use my appendicostomy? I know that only a doctor can give me an answer, and even they can't give you an exact answer cause every one is different but i would really love to hear everyones input/story/tips... anything, i am getting really nervous. The nurse says that she doesnt think i can swim for 6-8 weeks, but she doesnt really seem to know what she was talking about and has only seen one other case, and that was with a different surgeon. So i was really just wanting your guys input experiences, Im really nervous and wanting any information, Thanks!
Katie

[baglady]

Hi Katie;

You may want to try to post under Continent Diversions on this site.

Good luck I hope you find some answers.

Baglady

[Glenda J Simmons]

Hi,
I don't know if this will help you much but I had a PEC procedure in the UK for 2½ years, it's what you might liken to a Cecostomy but in UK they use a feeding tube and put it into the sigmoid colon on the left where a colostomy goes and then your irrigate the bowel every day through it and that then gives you continence for some 24 hours+. PEC stands for Percutaneous Endoscopic Colostomy. It took about 6 - 8 weeks for the tract to 'set' during which time I did not go to work while it was healing and forming but I used it to irrigate through one day after it was put in. It was quite painless to use and then I just taped the tube to one side with a small gauze dressing over it for the rest of the time, it will weep and be warned it may have faecal leakage around the tube/stoma on your tummy. I never went swimming, but my friend has the same procedure and she swims quite regularly by putting a colostomy pouch over the site and that's fine. I wouldn't swim for at least the 6 - 8 weeks of the tract 'setting' . You may well be able to be 'normal' after this amount of time, but you will have to be guided by how your own body reacts, some people heal a lot quicker than others. I was told I would only need 3 weeks off work, but in fact I needed 7 weeks.
I could e-mail you a document on the ACE as a word document if you wish, I will ask this site to notify me if you reply so I can send it. Regards, Glenda in UK

[Diane C]

Hi Katie,
I haven't visited here for awhile.... just saw this. I'd be glad to help you if you email me. I had my MACE done in 2000 in Chicago... back then, healing time was about 6 wks... it really took less. I didn't have it done via laparoscopy which is now done often. Are you? If so, healing time is sooner.

Since 2000, this procedure has been perfected, I believe. Also, I do think you were led to a site with more info.

I'm an adult... there are a few of us who've undergone this... but I STILL needed an ostomy which I can explain later or just to you if you'd like. (How old are you? Reasons for MACE?)

Anyway... I'm sure it'll go well and I hope you get the info you need. I'd be glad to give you more info, too.

Diane C.

[~Katie~]

Thank you baglady, Glenda and Diane!
I am 17 years old, as of today!!! I am having it done via laparoscopy as well Diane. This is not a mandatory surgery for me i have been debating about it for over the past 7 years. I was just alot younger and the idea of surgery was not to appealing if i didnt need it, over the years i have talked to several friends at the youth rally that have undergone it and seem really happy... and Now that college is around the corner, i think that this would make life much easier when sharing a bathroom etc. I currently have no ostomy. i had one when i was an infant, then had a pull thru around the age of one and a half, and have had it that way ever since. My reasons for doing this are just to make managing things go smoother. I was just wondering if anyone had had any new information, and you guys helped me alot, thanks for responding so quickly i appreciate it aton!!!
Katie

[matthewf]

Hi,
I don't know if this will help you much but I had a PEC procedure in the UK for 2½ years, it's what you might liken to a Cecostomy but in UK they use a feeding tube and put it into the sigmoid colon on the left where a colostomy goes and then your irrigate the bowel every day through it and that then gives you continence for some 24 hours+. PEC stands for Percutaneous Endoscopic Colostomy. It took about 6 - 8 weeks for the tract to 'set' during which time I did not go to work while it was healing and forming but I used it to irrigate through one day after it was put in. It was quite painless to use and then I just taped the tube to one side with a small gauze dressing over it for the rest of the time, it will weep and be warned it may have faecal leakage around the tube/stoma on your tummy. I never went swimming, but my friend has the same procedure and she swims quite regularly by putting a colostomy pouch over the site and that's fine. I wouldn't swim for at least the 6 - 8 weeks of the tract 'setting' . You may well be able to be 'normal' after this amount of time, but you will have to be guided by how your own body reacts, some people heal a lot quicker than others. I was told I would only need 3 weeks off work, but in fact I needed 7 weeks.
I could e-mail you a document on the ACE as a word document if you wish, I will ask this site to notify me if you reply so I can send it. Regards, Glenda in UK

Hi Glenda, what hospital did you get this procedure done? I have seen this procedure as an alternative for a colostomy.