Information for Malone/ MACE/ Appendicostomy - Disabled Living

Information for
Malone/
MACE/
Appendicostomy
Notes written by parents, for parents!
Collated by Bridgette Liedtke
1

This document was produced following several discussions on various
online support groups about Antegrade Colonic Enemas and collated so
that parents considering this procedure for their child can make a
decision about whether this is something that may assist with the social
continence of their child. It is assumed that the medical health care
professional has discussed the surgical procedure with the parent, and
the parent has been informed of the possible risks and benefits. Parents
reading this document should not take any information from here as
medical advice. If you want or need medical advice, you should seek it
from a properly qualified medical health care professional. The
information in this document is purely anecdotal, and gathered with the
intention of sharing knowledge and skills.
Parents from Australia, New Zealand, USA, Ireland and Canada
participated and provided answers to the questions posed.
For confidentiality, no names were used and for ease of reading, the sex
of the child was male.
In total there were 29 participants, with children ranging from 3 and a
half to 17 years of age. Diagnoses were varied; Imperforate Anus, Spina
Bifida, Hirschprungs Disease, Intestinal Neuronal Dysplasia (NID).
The contributors were gathered from the following groups:
• The Pull-Thru Network http://www.pullthrunetwork.org/
• Imperforate Anus Information and Support Group for parents
http://health.groups.yahoo.com/group/IA-parents/
• NZ-Australia-ACE-and-BOWEL-Network
http://groups.yahoo.com/group/NZ-Australia-ACE-and-BOWEL-
Network/
• The VATER Forum http://www.thevaterconnection.com/index.asp
• VACTERL Network http://www.vacterlnetwork.org/
• VACTERL Network (Yahoo Group) related to the above group
http://health.groups.yahoo.com/group/VACTERLNetwork/
• Bowel Group for Kids (BGK) http://www.bgk.org.au/index.php
• Facebook : V.A.T.E.R.and/or V.A.C.T.E.R.L Syndrome awareness
VACTERL Association Support Group
2

What is the best thing about having a Malone?
• Less mess, less intrusive and that they will be able to do this on
their own eventually.
• No more worry about unpredictable incontinence. Having peace
of mind -- knowing that his colon is getting cleared.
• I believe giving a retrograde enema is less traumatic for
everyone involved and less intrusive. I always clean him out
each day (no more bowel back-up).
• The ease of doing retrograde enemas. It felt uncomfortable
giving my son a rectal enema. With the MACE, my child can sit
on the toilet with a blanket over him for privacy and it just
feels so much less invasive. He sits on the toilet for 50 minutes
watching a DVD or doing homework and it's just part of our
everyday routine. His sister often keeps him company. It also
means that my husband is as comfortable giving the enema as I
am.
• The comfort in knowing most or all of the colon is cleaned out all
at once.
• Not intrusive to private parts (my son didn't like the rectals).
• Independence, continence, no soiling etc
• It's so much "less invasive" if you will, than rectal enemas. My
child loves it and he sits on the potty in the family room when
he does the enema and it's much more private.
• We definitely are able to clean him out and keep his undies
clean 98% of the time with the flush (that's the language we
use at home - we reference it as his flush.) Before, when we
were working with oral laxatives, we could not achieve
consistent results. We might have a string of several days
where they would work; but they were not reliable. The flush is
reliable for us. (Oh, and rectal enemas were completely
traumatic for him & our whole family. Just never worked for us.)
• My child’s life and the lives of all family members have been
completely changed positively due to the Malone. My son
suffered not only from severe constipation, but also repeated
strictures, fissures, and severe pain daily!
• Independence. I set up the formula and my son takes over
from there. It was getting very difficult to do a rectal enema
on an older child. Plus, there used to be a great mess - poop
3

everywhere. Much cleaner now. The poop used to drip out, or
fly back out at me as I was doing the enema, etc. Also, it was
hard to find a place large enough for him to lie down
comfortably as he got older, and now his flushes are done
upright on the toilet.
• Set up time is cut down. It is so much more comfortable for
him.
• We decided to get an ACE/Malone last May. The ACE has
changed our lives! We no longer have to wonder, guess or
strategize anymore -- we just know that he is cleaned out -- and
we know that we have to do it each day. Although the ACE
involves inserting a catheter, the ease of administration and the
open stoma make it a nice option.
• It shaved off 20 minutes of total time. He is in and out in 40
minutes... although sometimes he wants to stay longer because
he is in the middle of something.
• I've just been really pleased with the Malone because,
generally, we only have to deal with bowel movements once
a day, and that's made life so much easier for us.
How has it helped your child and/or your family?
• I sit my child on the potty and then we start the flow of the
solution. It has given him such confidence and he feels like
every other child who has to go potty. No laying on the floor
like with the rectal enemas. Even my oldest daughter sits in the
bathroom with him and they watch a movie together and she will
help hold the tube in.
• Our lives are more predictable and my child seems to have much
more energy without the constant bowel back-up.
• My child isn't in pain any longer, which he always was either
from a sore bum before the op or from a hellish few months
after the op trying to get the meds mix right with little or no
help from his team. That put enormous strain on us as a
family.
• Independence (to some degree).
• Being able to plan when he has to be on the toilet and time it to
not interfere with his busy social calendar.
4

• It's given my child his dignity. He didn't like laying face down
on a changing pad while his toddler brother was being potty
trained.
• No fear and anxiety over soiling at school. No staying home
from school as he did when soiling was bad. For me, not having
to have a plan in my head of where every public toilet was
situated on outings. Not having to even think about it when going
places and taking underwear, clothes etc. Having a happy ‘new’
child, one that wasn’t grumpy and tired from being blocked up.
• It's just more pleasant all around. It did not change the time it
takes to complete an enema (something we had hoped for), but
it's just great and my child likes it.
• Keeps him clean! He has (KNOCK ON WOOD) never had an
accident at school, which was my biggest concern. We do the
flush in the evenings; and he goes to school from 7:30 to 2:00.
This is his third year of being at school & he's never had an
accident there.
• My child will become independent with regard to his bowel
management and be able to keep washouts private. At the
moment he is 4 and often removes the catheter himself and
wipes his own bottom.
• My child got his MACE at 3 and a half, so he will grow up with
this routine as normal to him.
• Having a MACE means that in the future it will be easier for
other adults such as grandparents (or a teacher/school nurse on
school camps) to assist with washouts.
• We are now able to go on vacations and my child can stay clean
during the day.
• It has helped our child have the freedom to wear underwear
instead of nappies – he was very excited when we bought his
first jocks. No accidents - therefore no smell, no reason for any
teasing or negative comments from anyone. No problems
swimming in a public/school pool – no fear of accidents. No more
constipation which translates into no UTI infections.
• He is able to live like a normal teenager the other 23 hours of
the day.
5

How old was your child when they could
manage independently?
• My child had his Malone done fairly young so we still help him
with it. He is 4 years old and he had the surgery done a few
months before he turned three.
• He got his Malone eight months ago (he is ten years old) -- he
does most of the care himself -- with some supervision.
• My child is 7 and still doesn't mix his own meds.
• 8 years old - being the control freak I am, I didn't try
earlier...he insisted at 8 that he go into the bathroom, shut the
door and "poop in privacy like a normal kid".
• He had it done at 10yrs and could manage independently quite
soon after that (ie. @ 10 yrs)
• I set up the kangaroo bag with the formula and then he does
the rest himself and is 14.
• My child is 6 years old and he can do the Malone and
Mitrofanoff, with supervision. We've never let him do this stuff
independently.
• Except for the pouring of the glycerin & saline into the gravity
bag, my child who is 8 yrs old is capable of doing the rest
himself. I can imagine how, when he's older, he'll be able to do
that measuring part, as well. But for now, I want to make sure
the recipe is made correctly.
• He is eight and I still help him get started and get on the
potty. He has been finishing on his own occasionally.
• It is a very, very good thing. He is newly 5 and
has already started figuring out how to put the tube in, etc. He
definitely feels more normal.
• He was 13 when he got the Malone, and he became independent
about 8 months later.
• He is not 100% independent yet at 8, I mix the solution. He has
been putting in the tube for a few year now... maybe since he
was 5.
• My son got the malone at age 15. He is independent as far as
inserting the tube. If my husband or I are home (most
evenings) we mix the solution and set everything up. If we are
out together than my son does everything alone.
• Mine is almost 12 and we still mix the flush for him but after we
hang the bag, he's on his own to insert his tube, connect it to
the bag tubing and start it.
6

What problems did you encounter and what
tips/tricks did you use to address them?
Stenosis:
• Taping a smaller size catheter in place or putting in a smaller size
plug for a day or two, then replacing with correct sized cath/plug.
I used the plug every night for a good month. Then tapered down,
just like dilatations of the anal opening.
• My child’s hole did look pretty stretched out during our frequent
plug use but it now looks like a pencil tip sized hole, yet it's
stretchy enough for us to easily insert the tube. After a few
months of plug usage on a regular basis, we did not need it at all.
It's been at least a year, maybe 2, since we used it.
• Keep tube in place over night at least once a week. He
has tactile defensiveness so the need to tape (ACE) plugs in place
did not work out, for some reason the tube hanging out is easier
for her to tolerate
• Truly, it's like a pierced ear, it needs to be dilated. The ACE plug
is a must or leaving the original tube in longer than 2 weeks. No
problems after we started using the plug on occasion. Now we
never need it.
• We use a 10 gauge MACE plug, and 10 gauge catheters (we started
out using size 8). We take the plug out for swimming. If we forget
to replace the plug we use a 8 gauge catheter for the washout and
the 10 gauge plug goes in fine after that.
• We have a “night” catheter that we have cut and tied a knot in so
it is occluded. We wrap an ace bandage around the abdomen to
keep it in place. Sometimes it falls out, but no big deal b/c
catheterizing it stoma more frequently has really seemed to help.
Plug popping out:
• Taping an “x” of micropore over the plug, we double the tape over
at each end to form a tab making it easier to remove the tape.
We use flesh coloured micropore so it is less conspicuous.
• We have found the 3cm length plugs the best length for our child.
He is 4 years old and we have found that the longer plugs seem to
push themselves out with increased activity (we lost one at a
playground) and the shorter 15mm plugs can work their way out
under the micropore.
7

Granulation:
• Granulation often looks like and is confused with a small prolapsed
of intestinal tissue. You hear it described as looking like cauliflower
on the net but I have never seen it look like that. All the cases of
granulation that I’ve seen personally look like a smooth bulge of red
intestinal tissue poking out. It’s not though so don’t panic. Kenalog
is great for getting rid of it if you get it on quickly enough. Blob it
on, don’t rub it in.
• We do sometimes have a problem with granulation tissue which is
easily fixed with silver nitrate. We also keep gauze around the
tube so it doesn't cause to much granulation tissue. His tube is
always taped down so it doesn't catch and so he doesn't touch it.
Skin Irritation:
• Using 3M No-sting Barrier Wipes.
• Bepanthan, Vitamin E or other such barrier/diaper (Nappy) cream.
• Rotate band aids, gauze with tape.
• White paper tape to cover the stoma during the day - it is not
harsh on the skin, and it protects both the stoma and surrounding
skin from irritation brought on by clothing or during play.
• I did use a steroid cream, but this caused the skin to thin. Find
prevention using the Allevyn Thin plasters is much better than any
cure.
• Initial healing is tricky too. We avoided dressings, which just hold
the acid ‘tummy gook’ against the skin. Air time was best, with
frequent cleaning (warm water and a little tea tree oil) and
bepanthen nappy rash crème to protect the surrounding skin.
• We don't have any skin irritation problems, but we keep the area
clean and put mederma gel on the scaring every day.
• My child kind of lives all the time with some permanent redness
around his navel. I know that is due to the fact that he keeps the
plug in 24 hrs a day. BUT, that's how it needs to be. One thing
that helps a little is we alternate where we place the tape (durable
clear is what we use) over the plug, to give different parts
breathing room.
• Once in a while the clothes rub on either the Malone or
Mitrofanoff and that makes the area sore. We just tape some
gauze over the area and that works great. We don't want to use a
bandaid since that might keep the opening overly moist.
8

• We use latex free bandaids, but had to find the right ones. Not all
latex free are the same.
• We found a great tape—Mefix, and got insurance to cover it. It’s
rather expensive.
• Sometimes the feeling tighter is actually some irritation or scab at
the malone site. We usually apply a warm wash cloth for 10 minutes
or so prior to inserting catheter for the enema. We are also using
a little betamethasone cream at night to the site to reduce the
inflammation.
• If a scab forms, we just use a warm wash cloth to remove it and
the tube goes right in.
Flow Rate:
• I open the gravity bag to its fullest capacity, so the flow is much
faster than 10 minutes - I'd say the whole bag (we're at 500 ccs
of saline + 25 of the glycerine) runs into him in less than 5
minutes. I feel like the days when I walk away & the gravity bag is
"stuck" - for some reason not draining - and the total input time is
longer, like 15 or 20 minutes, that he's more likely to leak. The
stool will still get removed; but he will have water leak into under
an hour (or two hours or even three hours) later.
• I learned the long and hard way is to slow down the flow. Now that
we have done that, it works so efficiently. When I was shown how
to flush through the Malone, they showed me to open the kangeroo
bag completely and let the solution flush in. This would mean that
all the solution would be in within 5-8 min. We tried everything
under the sun to keep him accident free and finally when we slowed
the flow down, we have success. I have the kangeroo bags with the
slider ball so you can control the flow. I let it go in over 20 min and
in total my child sits for 50 min on the potty and we are done and
accident free. It took me almost a year to work this out.
• We have experimented with how fast the solution is administered
and have found that a very slow flow (we use syringes) results in a
better washout for my child. If the solution goes in quickly
he often gets a hard ball of poo plugging his anus which
requires manual removal and is uncomfortable for him. We have
also found that slow flow seems to reduce the likeliness of soiling
in the hour following a washout.
• Sometimes if it goes in too fast and comes out too fast the
solution is cutting around the edges of blockages and leaving the
9

Misc:
solid stuff behind. Particularly if what is coming out is smooth
liquid without much texture. I would suggest you slow it down going
in, by putting in say a quarter of the flush then waiting a few
minutes, then another quarter and so on. Putting in a smaller
amount to start with will hopefully give a bit of soak time so that it
softens it all up before the rest comes along and takes it all
through.
• I also agree that it might be helpful to have the child try to
squeeze and hold for as long as they can when the flush is starting
so that the saline has time to soften the stool throughout the
colon.
• Little trouble with the flow backing up or stopping in the tube...we
learned to start the flow going in the sink or bathtub before
hooking it up.
• My child’s recipe is 20ml of glycerine with 80ml of saline drawn
up equally into two 50ml syringes. Prior to connecting the end to
the catheter we hold the syringe tip up and pull the plunger down
to add air to the syringe. The air pushes all the solution through
the catheter. If the syringe tip points down after adding air and
before it's connected to the catheter the solution will drip out.
Mucous usually indicates that the bowel is empty, I then put
through a 20ml 'chaser' of saline. I flush the toilet at this point.
This means the toilet is less smelly and he doesn't mind the toilet
being flushed while he's sitting on it.
• Certain foods e.g. popcorn, corn, oranges caused my child to block.
Unfortunately I had to learn what foods by studying his stools!
• My child started with a Chait in the Malone channel (it’s an
Australian/New Zealand thing), which can be hard to open. My
solution was to put KY on the stalky bit every time I closed it.
• When we put the catheter into the Malone, we find the hole (we
can't actually see it), gently push the catheter in, remove it and
get a little more lubricant on the tip, and put it in. We often do
this a few times and it makes it easier and the catheter slides
easier.
• Our biggest problem was his extreme fear of having the catheter
inserted. He was afraid it would hurt and would fight us. We ended
up, during those first six-eight weeks, working with a child
psychologist, who specializies in children with medical problems, to
come up with some strategies for calming him & getting him to stop
10

fighting us. We also started using ACE plugs, so that he knew that
the hole would never have a chance to close up. Those helped
tremendously. Even now, he worries a lot about the hole closing up,
or narrowing so that it will hurt to put the catheter in. We have
him dip the tip into KY jelly before he inserts it - he feels like it
helps.
• Sometimes he has cramps – I usually go and rub his belly. I think
just having an adult with him helps.
• When my child had diarrohea from antibiotics, I figured he didn’t
need an enema since he's going anyway. WRONG for more than one
reason. I let it go a week without giving the enema while he was
having diarrohea and the hole started to close. I couldn't pass the
tube, so back to surgery for a revision and this time we kept the
tube in 3 or 4 weeks. Now, I know that for whatever reason I
decide not to give the enema at least pass the tube in every other
day. Also, now I know that when he starts with diarrhea that I
immediately start the enema to flush him out. It saves on diapers
and diaper rash.
• I use a large band-aid on it at all times. You never know when a
leak is going to break out. I know all about the constipating diet. I
have opted not to go through that right now as my child is a very
picky eater and as long as he's eating I'll deal with the
consequences. Actually, he doesn't have leakage often, but I like
to be ready just in case, and also to save from potentially staining
clothes.
• The biggest problem was leaking and this was helped by Deflux. He
would tape gauze pads on over the stoma every day.
Unfortunately, this caused skin break down. He’s allergic to
latex. Since the Deflux, he’s only had to cover it about 5-6 times in
a year!!!
• Ensure you have EVERYTHING you need in terms of supplies,
including stuff to cover emergencies, i.e. if a chait button were to
get pulled out, have a replacement on hand. Often small hospitals
will NOT have the expertise or equipment to help. Get good advice
on what to do if you live far from a hospital with trained staff. Get
staff to show you what to do before you leave hospital. Join an
internet group with others who share similar interests. People at
the coal face every day are the experts or are striving to be
experts!
11

What do you wish you had known prior to surgery
that you had to learn the hard way?
• Don't expect to get the flush perfect for several months so
anticipate them wearing pull-ups until all the kinks are worked out.
• I wish that we were more aware, when he first got the Malone,
about the possibility of it closing up and/or having pain when trying
to insert the catheter. We had to learn the hard way that the skin
can heal very quickly -- We had to go down to a 6 fr feeding tube
(taped on) for our irrigations and work back up to a 10 fr. Once he
was back to 10 fr, we obtained the ACE plugs and we haven't had
any problems since! (Saved us from having to do a revision!)
• Stomas are very vascular. It takes very little irritation to cause it
to bleed, and it takes a while to get it to stop. Make sure and keep
it covered (we like to use white paper tape), so that the stoma
stays nice and protected.
• That it wasn't a quick-fix solution. Our surgeon let us believe that
we could go straight home and everything would be wonderful
immediately. However it took us 18 months to finally get things
working smoothly and that only happened because I found this
network. I am really glad I didn't give up on the MACE though as I
was tempted to when the going got tough.
• Insist on total bowel cleanout before the surgery, even if this
requires hospital admission the day before.
• The new tract will want to close up. Keep a tube in place at all times
for the first several months.
• That it would be a gunky, goopy messy wound site.
• That the recipe is everything and it doesn’t pay to stick with what
the doctors recommend if it’s not working. Just saline rarely works!
The Mums at the coalface are much better at recipes.
• That it’s not as straightforward afterwards as the surgeons lead
you to believe. The surgery is the easy bit, it’s getting it running
properly and all the little teething problems that you don’t expect.
• Nothing really except we are glad that the Malone my child has is
larger than most we saw while we were in hospital. My child uses a
size 12FR catheter. Many of the kid’s catheters are tiny. We like
the larger size and wonder if it's less prone to closing.
• It took us several weeks - maybe six? - to figure out the recipe.
That was hard for us. We were just using plain saline, with no
12

glycerin, the first week or so, and he ended up getting VERY
backed up (stool was coming out the tube, when we'd stick it in the
ostomy). So we messed around with glycerin & doses for quite
some time. I got very discouraged at first, very worried that we'd
made a terrible mistake. But the nurse we were working with was
extremely supportive & optimistic & accessible - she'd walk us
through every dose change, until we finally arrived at relative
continence.
• Our child's Malone was placed low which means he still needs to be
lying down during the flush. It took a while to learn the best
positioning, but even so, I wouldn’t go back.
• We wished that we would have known that it wasn't going to
automatically work without any problems. Our child did not know
what it was like to push, so we spent months teaching him to push.
Whenever we were anywhere but home, he had problems emptying,
so we made sure that we were always home, at the same time,
every evening. This was very limiting for us as a family.
• It can sometimes leak. My child required 2 revisions. The second
one was with Deflux, which is great. It won’t withstand another
revision.
• That the “recipe” that was given to us might not work as well as
had been suggested by the nurse educator.
• Our surgeon told us that 1 in 10 will need a revision.
13

If you were doing every other day (second daily)
rectal enemas, did you need to change the
frequency once the Malone was in place?
• We were able to continue daily and skip every Friday.
• Rectal enemas were only sporadic (and unsuccessful). We did daily
flushes with the ACE.
• NA - we've always done daily enemas.
• We skip either Friday or Saturday pretty regular now with no
problems... we never skipped with rectal enemas (at least I don't
remember).
If you were doing rectal enemas, did you need to
adjust your recipe?
• We needed to increase the saline solution once we switched to
retrograde.
• We did. Not sure if it was inevitable anyway due to growth spurt
(we increased and in the end changed to a whole new recipe due to
the dangers of fleet).
• Our recipe is exactly the same. With both we have done, and
currently do 700 mls saline + 30 mls glycerine.
• We learned that after the surgery, there is so much change going
on the body that it is hard to determine what recipe to use. I
switched it all over the place and after months ended up with the
same recipe we had for the rectals. So my advice would be keep
everything the same for several months until the body has had time
to regulate itself and then if you have to change things, do so at a
later time to save yourself some frustration.
• Yes it needed to be stronger. We added fleet. We have been able
to take the fleet out and have been using Castile soap.
14

How long did it take to establish a working recipe or
routine?
• 3 months? But as he grows we have to adjust it anyway. It's always
a work in progress. The routine he adjusts immediately to though.
A much happier way to spend the morning!
• Several months.
• A couple of months. My child had surgery in early July. He was
perfected in time for school in September.
• 1 month. Would have been faster but in those days I thought I
needed to stick with Dr’s orders!
• Probably just a few days. What we had to learn was to really slow
down the rate of flow of the solution. We need that solution to
take about 15 minutes to go in or she doesn't get a good cleanout.
• About 2 months for us.
• Not long – we almost nailed it from the beginning.
• Haha...about 9 months. The first month was hell. I kept thinking,
"WHAT HAVE WE DONE?!"
• About 6 months. The recipe worked great at the hospital and once
we got home it didn't work, so had to return within days for more
assistance and lots of visits until the recipe was right. We still
adjust it ourselves when the results aren't there that we expect.
• It took about 8 months of tweaking until it was set.
• The routine that works for us now probably took us about 9
months. Mind you, that included 3 months in intensive care and we
had little control over that period, so I would say 6 months.
• It took about 4-6 weeks for our flush to work and keep him clean
for 24 hours.
15

How long did your surgeon suggest the initial
catheter remain in place for? Would you have
changed the time frame?
• After the surgery the tube (catheter) stayed in for three weeks.
I found it beneficial to keep it as open as possible. So we used only
two bandaids to secure the catheter and let the wound heal. It
oozed some fluid for several weeks so when it was completely
covered it would get more irritated. Ours was in for three weeks
and we had no problems with that afterward. We did pass the
catheter morning and night for a few months afterward to ensure
it healed properly.
• About two weeks -- would have preferred longer to possibly avoid
closure issues.
• Two weeks. Then we used the plug for several months, as it did the
same thing as leaving a catheter in for a longer period without the
hassle of having a tube hanging around.
• 2 weeks. That was ok, but from what I gather, most people then
need a stopper for a longer period of time. My child needed a
stopper (ACE Plug) for a few months.
• Not long enough. Yes leave it in place for several months. It is so
scary when it starts to get blocked.
• Supposed to be at least 2 weeks. Due to scheduling issues, we had
to have the tube removed 10 days later. I would say 3 weeks might
have been better. Still, I recommend having a plug on hand.
• No initial catheter. Had a Chait placed in the channel during the
ACE surgery.
• My child’s doctor kept the Malone and Mitrofanoff initial catheters
in place for 7 weeks. That's typically what he does and for us, that
was great. The area was completely healed and we have had no
problems.
• 3 weeks - really just until we were able to get back there - looks
perfect and works perfectly!
• I believe it was four to six weeks. No.
• 4 weeks, Nope
16

What other tips/tricks have you found that you
would pass on?
• One thing I thought to share that the Drs have highly stressed to
us is to get your rectal enemas working perfectly with no accidents
before you ever consider the Malone. The Malone will not work
better that the rectal enemas, it is just a different way of
administering them.
• Take the foley catheter out as soon as the enema is finished
running in. Doing so will ensure that there is no water/stool left
near the stoma after the child gets off the potty. Otherwise, you
may experience a small amount of leaking later in the day. I've also
found that if you do experience leaking not related to the foley
catheter being left in too long, it could be an indicator that an
accident might occur soon. In my child’s case, it is usually
something that he ate that is going to run through him too fast.
He's hypermotile, and it will show up in his Malone first a few hours
before he has an accident. It helps to be prepared.
• Use a soft comfortable toilet seat as it is a long time to sit on the
toilet.
• Don't be discouraged if it's not perfect at first. It takes time.
Probably stick to your original recipe for a good chunk of time
unless the child is becoming backed up. Tolerate accidents as the
body adjusts to the new system. Let the child be an active
participant in daily flush.
• There are so many things it’s hard to know where to start. Flushes,
timing. I guess one of the things that makes a really big difference
to being able to predict potential blockages before they happen is
collecting the output (we used a plastic ice cream container in the
toilet) . What it looks like (before it hits the water because once it
does, you can’t tell) in terms of texture, colour, quantity tells you
exactly what’s going on and where you are heading.
• Remember that rectally, you had to keep the solution in place for
8-10 minutes or so, prior to deflating the balloon/removing the
rectal cone and sitting on the potty. This is the same thing. If the
solution doesn't stay in the colon for at least that amount of time,
and for us longer, the colon doesn't get the irritation it needs to
clean out. If you let the solution go in too quickly, it just pours out
the other end without cleaning.
• I was one of those people who didn't want a TV in our bedroom.
BUT, we have one now, as the bathroom our child uses to do his
17

flush has a toilet w/ access to our bedroom. So flush time is now
when the kids watch TV - usually around 5:00 pm or so - while
hubby & I are starting on dinner. Hubby found a table with wheels,
so we wheel that in every night and he can do homework or color or
eat snacks while he sits there. His sibling sits on our bed, so they
talk about what they are watching, etc. I'm glad it's a very "family
friendly" event, considering its frequency. Oh, and, I don't know if
you have other children - but we have a rule that our other child
can't be outside with the neighbors/friends during flush time, as
that made the one doing the flush feel left out.
• Use of Movicol/MiraLax 12-24 hrs prior to washout helps my child
have a better result.
• If I don't think my child’s washout has been very effective I mix
another 5ml of glycerine with 45mL of saline and put that through.
• I usually sit on the toilet floor while administering the solution and
stay there chatting to him while it takes effect. I encourage him
to 'push' once the poo has started (and at several intervals during
his toilet sit). I can see the stool go into the toilet and note the
colour and consistency of it. I can see how much poo there is and
use this to gauge the effectiveness of the washout.
• When my child starts having diarrhea the Malone starts leaking.
Enema or not. I figured that if I could leave a Malone Plug in that
I could leave the feeding tube used to give the enema in and just
cap it. So, when he has bad leakage, instead of irritating his skin
w/ the constant change of the band aid, I just put the tube in
and cap it. Also, they left it in for several weeks after surgery, so
I figure a few days couldn't hurt.
• Invest in a mini DVD player. Try to keep to a routine, but don’t
feel totally bound by it. You and your child should try to live as
normal a life as possible. We move the enema to adjust to other
activities in our lives and even up the solution if we have to go 48
hours between times. Usually we have a pretty regular routine
though.
• Don't change your recipe often. You should have the same person
mix the recipe so it is always consistent.
• When travelling, buy a stick-on hook for the bathroom. They’re
great for hanging the bag, so you don’t have to hold it. It works at
home, too.
18

Catheter tricks/tips:
• Once the tube is inserted for the flush we place a piece of cut
gauze over the tube and secure it with paper tape. This keeps the
tube in place during the flush.
• We generally insert the catheter about 8-10cm. We found
measuring 10cm and marking it on the catheter to be very helpful
to know how far to insert it. If it's not inserted far enough,
solution will come out of the MACE around the catheter.
• We use a #10 Fr tube for the flush, but he inserts a #8 first to
open up the tract. I recently purchased a #6 to have on hand if the
#8 is not going in easily, and it already came in handy this week.
• Make sure you order the firm catheters as they are easier to
insert than the soft ones.
• Make sure you don't leave hospital without a spiggot or two. We
still use ours. We leave the catheter in during the toilet sit time
and spiggot the end (because stuff can come back out of it). It
just helps keep the MACE nice and open (This ensures that the plug
will be easy to insert after showering). My husband had to cut the
tip off our spiggot and fill it with glue to shorten it to fit the
catheter end.
• I like using an Ace bandage around my child’s belly to keep the tube
in. At first we were taping it in but the skin started to get rough.
• We replace the tube weekly and the bag monthly.
• 1st of the month I change bags and feeding tube.
• We've been using each catheter (12Fr) and bag for about a month
before switching. We've not noticed any problem and wash them
both after and hang them to dry.
19

What advice would you give to parents considering
this surgery for their child?
• I would highly recommend this surgery and it has been the best
choice for our child. I feel like it gives him much more privacy and
normalcy.
• If your life has become unmanageable and chaotic because of
incontinence and bowel back-up -- don't hesitate. It really made a
difference for our child and our family! He sometimes indicates
concern about possibly having to do this for his whole life -- and he
is bothered by the fact that he has to do it everyday -- but overall,
he seems much more at ease and happy with the predictability that
it gives to her life. Going to the conferences, and meeting other
children who have the same or similar surgeries, has helped as
well.
• Of all the stomas my child has had placed (colostomy, vesicostomy,
Mitrofanoff), the Malone has been the best and most problem free
of them all. Not really specific advice, just want to encourage
other parents by letting them know how wonderful it has been for
us.
• Go for it, but be ready to keep looking for advise on getting the
mix right.
• Ask the surgeon how many he has done and ask about bowel
cleanout before the surgery.
• If you think that your child will not succeed on laxatives and
enemas have worked well for at least a year...do it! Having an
elective surgery done is always a difficult decision, but it was a
great decision for our family.
• Go for it! It’s not a major surgery but it can make a huge
difference to your lives. It’s reversible. Everyone I know that’s had
it has been happy, despite the initial glitchy things that happen.
They are small and there is always a solution for them.
• It’s always a tough decision to make but the benefits are huge.
• I would not say that the ACE works for everyone. There are a
small proportion of kids with very serious NID for whom the ACE
doesn't work or is a partial success. Some of my child’s doctors
prior to the interferential therapy would have argued that his had
effectively failed because of the amount of time and energy we
were spending on care. 18 hours care at minimum a week isn't a
success story. No amount of tweaking and fiddling actually got his
bowel functional really. All I was doing was preserving the bowel
20

from surgery. He's not the only kid I know of who didn't have a
success story with the ACE. If we had had a nuclear transit study
done prior to the ACE, my expectations would have been more
realistic and if I could I would push to have this done so that you
know where in the bowel you have issues. We never had leakage
issues at all, ever until we had the stoma formed and it occasionally
leaks.
• Thinking about it some more there are a few I know that it hasn’t
worked well for. On the whole though, I think even those people
are still glad they did it, as compared to how things worked before
the ACE they have still been better off, even though they haven’t
had great success.
• Do it. These kids need to have the "liberation" of the Malone.
• Make sure your child understands, as much as possible, what is
going to happen and why. And make sure you have easy access to
great follow up care - a nurse or the surgeon himself/herself who
will be available to help you figure it all out post-operatively.
• Was the best thing we ever did!
• Do it – if constipation and continence are out of the question
without enema, this is definitely a great option.
• In our situation, I wish that we pushed harder at an earlier age to
get the Malone. Our child got his Malone at age 9 after years of
failed bowel management, experimental treatments (Botox,
Nitropaste), biofeedback, etc. We don't regret having done these
things -- but in retrospect, we wish that we put the Malone in a few
years earlier -- because as he got older the stress of having backup
and unpredictable incontinence was difficult for him going to
school each day and for our entire family.
• Things prior to the ACE were completely unsustainable. We were
offered the ACE after all other forms of management had failed.
I think a colostomy or ileostomy was on the cards. I know of a
couple of kids as sick as my child who had their colon removed.
• Get the facts and decide for yourself. Don't let anyone pressure
you into it. EVER.
• Find a good support group; moms and dads going through the same
thing, otherwise you will drown. Also, don't be afraid to tell people
no and adjust your daily life so your kid's poop schedule comes
first. If you don't, your house will be in chaos and everyone will be
stressed. There are certain things we can and cannot do (preschool,
play dates, etc.) because in the mornings and evenings we are tied
to the house. That said, I would never choose to go back to the
21

colostomy. It's worth the normalcy for my child, and he looks
forward to his potty time alone.
• DO IT! Be an advocate for your child. Our surgeon believed that 5
years old was too young and wanted us to try lots of different
things. We insisted on this and said we would go elsewhere and
then he did it.
• Do it! We love the malone. My child was 3 at the time... I doubt he
remembers anything different.
• Bring lots of Kleenex, bring a journal, cry a lot, laugh a lot, it's all
worth it.
22