Question for others with appendicostomy/Ace/Malone procedure

[Cassie1031]

I am a 19 yr old female with an appendicostomy. I had the procedure done about 4 yrs ago after every other option was exhausted. I was never formally diagnosed. But, they said that my condition is similar to Hirschsprung's disease. I was treated at the Cleveland Clinic. I have had my diversion for a while now, but have never gotten the results that I was initially told I would get. My health is GREATLY improved and I am so thankful for that. But, I spend about an average of three hours doing the flush and still don't get the results that are desired. I have seen other posters who say that they add other things to their water. But, I was just told to use tap water. So, that's all that I have ever used. Its very hard to get answers where I live because there are no doctors within an hour radius of me who have even heard of this procedure. Let alone treated someone with it.

So, my question is for others with an appendicostomy. What do you use in your water? What do you recommend for this problem? And how long and how often do you do your own flush?

Thanks!

[jules^]

Hi cassie,
My daughter uses about 2 mls of bisicodal in approx 450 mls of water, she is 7 years old and i guess it prob takes about 3/4 hour start to finish . This rountine works great for us.
I have heard of many things ebing used in the washout...hopefully someothers willb e along soon to advise you hun.
Also when hannah gets a lil bunged up we use good old olive oil ....put it in her ACE let it swill around for a few hours and wash it all out lol and that really works!!

If i can help any more give me a shout!!
Love
Julie

[sheri, Cameron's mom]

Hi Cassie,
My son was born with Imperforate Anus and has an ACE Malone. We use a cocktail of 600 ml saline, 12 cc of glycerine and 1/2 adult fleet everyday for a cleanout. We do this everyday, it takes about an hour total, we skip Fridays though. Because I don't know your situation, I wouldn't recommend that you try anything new w/out a surgeon's ok. But, I would HIGHLY recommend that you contact the doctors at the Colorectal Center at Cincinnati Children's as I see you are not too far away from them. Although you are not a child, I know for a fact that Dr. Pena and Dr. Levitt see young adults as well and I'm confident that they could help you. They run bowel management clinics. I'm not sure if I'm allowed to post their website or contact info, but you can pm me for it if you're interested.

[Cassie1031]

Thank you both for the info. I have an appointment with my general physician tomorrow. I am definitely going to find out what she thinks about trying something new. Hopefully something works! Thanks so much.

Another question: Has anyone heard of someone just using tap water for their flush?

Thanks again!

[naynay1990]

hey cassi, i am renee! i am just wondering i am about to at some stage get a appendicostomy i am just wondering is it helpful and does it give you quality of life? i hope i hear back from u soon

[leeluongoleannenadia]

My grandaughter, 7, had an appendicostomy on 8/10/11..after 4 years of encopresis.
She has been having many issues with regulating the amount and strength of golytley and inserting the tube for nightly irrigation. She resists which makes the muscles tense up and makes it hard for the tube to be inserted. The procedure itself, works, as she is accident free until the next flush. Has anyone have a child with this procedure..We need support and can't seem to find it. Any help or info would be greatly appreciated. thanks, Lee

[leeluongoleannenadia]

my grandaughter, 7, had an appendicostomy on 8/10/11...she had to do many combinations of the flush...what works for her is: 3oz of fleet enema first in the bag, then add 360cc of golytley...let us know if this works....we are hoping she can do every other night if her colon shrinks and she can go on her own...please reply..good luck!!Lee ps..this is not an easy fix!!!

[dothackers]

I have been just using 400ml water + ~1tbsp of salt or less. Swish it around and push it in! <1hrs on the toilet. I haven't really experimented much, Glycerin seems to push soft stool instead of watery stool with the saline solution. But it's troublesome to get glycerin and just having a tube + bag + salt is much easier!

[brwntley_cox]

Im 14 years old. My surgery was done in Little Rock, Ar. I was the 6th person in the world to have this procedure done. I use 30 ml of glycerine, and 30 ml of saline.

[bcirray]

bewntley
You are answering a very old post/question. you may want to PM the person who originally asked the question. just a suggestion.

Ray