Discuss this article on the forums. (1 posts)

This article is a compilation of information from messages from the old SB-Parents Yahoogroups email list about the ACE procedure for bowel management.

Message 38120

RE: [SB-Parents] Bladder issues

Hi,

I know EXACTLY what you are going through. From day one the doctors put our
daughter (now 16yrs) on antibiotics. We still rushed her to the emergency
room every month for severe UTI, bladder and kidney infections. Finally we
met an AWESOME doctor who is genuinely concerned with these kids. He did a
bladder augmentation/ACE/Mitrofinoff when she was 7 years old and it has
made a HUGE difference.

Our daughter leaked all the time as well and the infections were apparently
caused by the fact that the bladder had no 'muscle' to it to empty it
completely. Her bladder was the size of an apricot. The doctor took part
of the bowel (which grows) and put it on the bladder. Her bladder is now a
strong, normal size one.

She has not had one infection since this procedure was done nor does she
take antibiotics for it.

What I would do is ask your doctor knows about these procedures. Be very
careful though because not just anybody can do them. Do research on the
doctors. Ask for references from the families which the doctors have done
this for.

Our daughter wears underwear during the day and pull ups at night (just
because of her bowel program) and sometimes when she is sick, having
constipation issues or taking medications that might mess up her digestive
tract.

Just curious....what state do you live in?

Let me know if there is anything I/we can do to help.

As for your daughter having no desire to cath herself.....we were told that
the way they look at it is "why bother? I'm going to still have to wear
pull ups anyway" and they don't feel anything so really to them it is a
waste of time. Hope this helps.

Natilee

Re: Mitrofanoff/Bladder Aug./Sphyncter Surgery Aug.28th

My first advice would be to skip Children's downtown and go to
Mott's Children's Hospital at U of M in Ann Arbor and have Dr. Park
do the surgery but since it's this month its to late.

I would also ask that they do an ACE procedure for bowels while they
are in there it only adds an hour to the surgery and is so worth
it. Both of my girls have had the mitrofanoff bladder augmentation
and ace. The youngest one's surgery is kind of a blur since she
also had her right kidney removed at that time and it was 5 years
ago. The oldes one had her surgery done the last week in June so
everything is still fresh. When he comes home he will have a super
pubic catheter that goes into his side and into the bladder. This
will be connected to a bag that will need to be drained several
times a day and also flushed with normal saline. He will also have
a capped catheter in his new mitrofanoff that you will need to
remove the cap and flush the saline through.

I don't know how much you son weighs but I can say it was much
easier when my 3 year old had it then when my 16 year old did
because I could just pick her up and move her unlike her sister.


Cindy