
Spina Bifida Support Group
Spina bifida describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malformations of the spinal cord. The spinal membranes and spinal cord may protrude through the absence of vertebral arches (called clefts).
I wanted to say Hello and ask a Personal Question

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I just found this sight today and so far I'm enjoying the good people's comments. I hope to be of help to others and I hope to get help from others.
My question is aimed at the adults with Spina Bifida. I have incontinence issues every single day and it has caused my relationship to end (1 reason it did). I've struggled my whole life with this. I wear depends underwear but mostly with bowel issues nothing helps. I can be just standing there talking at work and bam! my bowel empties all over my clothes. I've never found a solution to this and fear I will be alone for the rest of my life because of this - does anyone else have this problem? Is there any help out there? I've tried all the treatments and nothing works. I'm considering the "Button" procedure. Has anyone heard of this and what do you think?
I hope I didn't ask a too personal question I just really need help on this issue - I'm at my wits end. I just want to hibernate and I can't. What do you recommend?
My question is aimed at the adults with Spina Bifida. I have incontinence issues every single day and it has caused my relationship to end (1 reason it did). I've struggled my whole life with this. I wear depends underwear but mostly with bowel issues nothing helps. I can be just standing there talking at work and bam! my bowel empties all over my clothes. I've never found a solution to this and fear I will be alone for the rest of my life because of this - does anyone else have this problem? Is there any help out there? I've tried all the treatments and nothing works. I'm considering the "Button" procedure. Has anyone heard of this and what do you think?
I hope I didn't ask a too personal question I just really need help on this issue - I'm at my wits end. I just want to hibernate and I can't. What do you recommend?
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Hi - Yes I would love any information you might have. My doctor doesn't know anything about this so she is sending me to a specialist who might know. I have to lose weight for the surgery but I sure pray it works. Any info would be greatly appreciated.
Thank you very much! Cat
Blessings, Angelunaware
ACE Surgery
Page 1 of 2
Antegrade continence enema
(ACE): Surgery
What is an antegrade continence
enema?
ACE is the everyday term for antegrade
continence enema. An enema causes a
bowel movement by flushing the bowel with
liquid. During surgery, a tube is created
inside the body to allow this type of enema.
During surgery, a tube is made using tissue
from your childs own body: the appendix or
a small piece of the intestine. The surgeon
makes a stoma (small opening) at the belly
button or the lower right side of the belly,
and tunnels the tube from there into the
bowel. A catheter is passed through the
stoma, and into the bowel.
Through the catheter, normal saline (a salt
water solution) will be given into the bowel
as a daily enema, causing a bowel
movement through the rectum about 30 to
60 minutes later. The surgery allows most
children to give their own enemas,
increasing their independence.
What can I expect before surgery?
Your doctor may want your child to follow a
special diet before coming to the hospital.
The day before surgery, your child may be
admitted to the hospital to start a bowel
clean-out, called a bowel prep. (See the
education sheet Bowel prep in the hospital
before surgery.)
During the bowel prep your child cannot
have anything to eator drink. After the
bowel prep, your child can have only clear
liquids.
What should I expect after surgery?
The surgery will take 2 to 3 hours and is
often done with other surgical procedures
your child may need. After surgery, your
child will go to the recovery room for a
short time, and then back to a regular room.
See the education sheet Post-Anesthesia
Care Unit (PACU).
Your child will have an intravenous line
(IV), as well as a catheter in the ACE.
There may also be a nasogastric (NG) tube
leading from the nose into the stomach, to
keep the stomach empty. The NG tube will
stay in place for a few days, until the bowel
has healed enough to start working again.
Your childs vital signs (blood pressure,
temperature, heart rate, and breathing rate)
will be monitored and pain medicine will be
given.
After the NG tube is taken out, your child
will progress from drinking clear liquids to
eating solid food as tolerated.
The hospital stay may last 2 to 7 days,
depending on what other procedures have
been done at the same time.
ACE Surgery
Page 2 of 2
How should I care for my child?
Gently clean around the tube every day with
water and pat dry. Soap is not needed. If
there is a bandage, change it daily.
Your child will have a catheter in the ACE.
The catheter allows the tube and the stoma
to heal. You will need to put a small
amount of normal saline into the catheter
each day; this is called irrigation. The
amount of normal saline is increased on a
regular schedule until your child has a good
bowel movement.
Before you take your child home, your nurse
will teach you how to irrigate your childs
catheter, and will give you a schedule for
when and how much saline to give each day.
See the education sheet Antegrade
continence enema (ACE): Irrigation.
You will need to keep your child on the
bowel program used before surgery, until
the new irrigations work well.
What can my child eat?
At home, your child can eat as usual,
including fiber and plenty of liquids.
How active can my child be?
Your child may bathe or shower.
Because your child will have a catheter in
the stoma, limit activity. Avoid any stress
to your childs abdominal (belly) area.
While the catheter is in, do not let your child
play actively: no bike riding, swimming,
digging in the sand, or recess play; no sports
or gym class.
What else do I need to know?
Your childs catheter will be taken out at an
appointment a few weeks after surgery.
The doctor or a nurse will teach you and
your child how to pass the catheter into the
stoma.
You will be given a prescription for
catheters to fit your childs stoma.
When should I call the surgeon?
if the catheter falls out
temperature of 101.5 F or higher
more than just a little bleeding at the
stoma
unable to irrigate the ACE
Questions?
This sheet is not specific to your child but
provides general information. If you have
any questions, please call your clinic.
For more reading material about this and
other health topics, please call or visit the
Family Resource Center library, or visit our
Web site: www.childrensmn.org.
Childrens Hospitals and Clinics of Minnesota
Patient/Family Education
2525 Chicago Avenue South
Minneapolis, MN 55404
2/07 Copyright