... by Wim's mum
Wim is our third
child, now aged 16. He is a frequent
flyer at the Royal Children’s Hospital in
Melbourne, so much so that I have a sheet of
co-morbidities that I take with us whenever we
attend. Thirteen items on this list are
not gut-related, and nine of them are
gut-related. These are what this article
From when Wim started
solid food, he has had constipation.
Like his sister & brother, dairy played a
large part so was eliminated early.
We tried him on many different laxatives, on
the advice of many doctors. We could
have started a pharmacy with what we had in
our medicine cabinet. Over time, they
Colonlytely washout (by naso-gastric tube) was
at 18 months of age. He was in a
cot then of course, and they are quite
high. My mother & I were sitting in
armchairs, & as we are both short we
couldn’t actually see the cot mattress.
But we heard Wim sitting up & going
splash, splash, having a lovely time.
What a good result that washout had!
At age 3 ½, once
again he was very ill, vomiting &
feverish. He had to be transported by
ambulance to Box Hill Hospital. At my
request, they did a plain abdominal
x-ray. The look on the doctor’s face
when he came back was shocked. He had
never seen a child so full. It took 5
days of naso-gastric Colonlytely washouts to
clear him out. He was started on 1
sachet of Movicol when he weighed just 20kilos
– the half dose was not around back
then. Even so, it took a full sachet
daily to keep him emptying properly.
Over the next few
years, he had semi-regular naso-gastric
Colonlytely washouts. On one memorable
occasion, the washout was not emptying.
He just got fuller & fuller, until I
stopped the staff putting any more in.
Fortunately this happened just before he was
due to have a minor procedure done under
general anaesthetic, so he was emptied out in
theatre. He never had his hands bandaged
to prevent him pulling the tube out. The
trouble came when nurses tried to remove the
tube (or I.V. line). They had given him
this thing which helped him get better, &
then they wanted it back!! He still gets
upset at having to give them back.
It was decided that
his anal sphincter was very tight (was he
consciously holding on? In my opinion,
NO! Not if the sphincter was still tight
when he was under anaesthetic!). Wim had
Botox injected into his anal sphincter, which
made him faecally incontinent. As he was
still in nappies anyway due to urinary
incontinence, it didn’t really matter.
Botox is not permanent, & it eventually
wore off. A second injection was not
Wim had a transit
study, which showed a megacolon. The
surgeon wanted a more precise picture, so Wim
had a barium enema. Afterwards he was
placed on a toilet to get rid of the
barium. I said, he can’t get rid of it,
that’s why he’s here! It took 3 weeks
for the last of the barium to pass.
The barium enema
showed that Wim’s gut had stretched due to his
constipation. He had a redundant
loop. The surgeon decided that removing
this loop would fix the problem. Ten
centimetres of gut was removed. By this
stage Wim was 9.
The partial colectomy
did not solve the constipation, it merely
removed his holding dam. He became
sicker over the next few months, with frequent
admissions for naso-gastric washouts.
Colostomy was discussed, but the surgeon
wasn’t convinced that Wim would tolerate
wearing a bag, due to his intellectual
disability. I said I would make sure he
tolerated the bag, as I felt it was his last
option. By the time the surgeon was
convinced, he was due to go on 4 weeks’
leave. Another surgeon did the procedure
(a Hartmann’s stoma, retaining his rectum and
anus) after 5 days spent in Care by Parent
administering daily Microlax enemas (which
didn’t work). During this time I also
managed to get Wim continent for urine.
Wim had been under
the care of a dietician, because he had not
grown or gained weight in 3 years. After
the stoma was made, he grew 10cms & gained
6 kgs in 6 months. Without that stoma, I
am sure Wim would not still be with us.
He had annual minor
revisions for the next 2 years.
By the time he had
had the stoma for 2 ½ years, I knew something
was wrong. The stoma was severely
retracted, he seemed to be in pain (he has
very poor communication skills). Without
seeing him, the surgeon said he must need to
lose weight as abdominal fat was probably
causing the problem. This child who had
trouble keeping weight on??
We saw a different surgeon in clinic who said
immediately that as the stoma had been made
for constipation, & he had had 2 years of
good bowel function, the most likely cause was
that the bowel had shrunk & was pulling on
the stoma. Some sense! Sure
enough, that was the problem. His
splenic flexure was mobilised during
laparoscopy, the stoma was revised and all
settled down. Wim regularly had blood
tests done when he had surgery, as getting
bloods any other way has always been
difficult. This time he had a RAST test
for peanut allergy, as his older brother is
allergic to peanut. The result was so
high that Wim is now considered anaphylactic
to peanut, & carries an Epipen. How
that happened I don’t know, as there was no
peanut at home or at school.
Wim’s other problems
caused the paediatrician to order a spinal MRI
(under GA). This showed that Wim has a
cyst on his spinal cord. The surgeon
said that yes, some of his patients who have
bowel problems have spinal cord cysts.
In 2013 no-one in the
family had any hospital admissions – the first
time in 10 years!
Gradually we had to
increase the dose of Movicol to 4 sachets
daily to keep Wim’s gut moving. He had
several washouts in early 2014 & no-one
really knew what was going on. His older
sister was diagnosed as gluten intolerant at
that time, so we decided to take Wim off
gluten to see if that made any
difference. Several weeks later he was
accidentally given gluten, and had very smelly
diarrhoea. So, no more gluten.
Over the next few
months, his alertness and communication slowly
improved, but his gut did not. We had so
many visits to Emergency with Wim clogged
again. I said I felt something was
pulling the stoma in, as had happened before.
surgeon agreed to a laparoscopy to see what
was going on. The Registrar said “I hope
you’re wrong”. Well, I was right.
The appendix was adhered to the wall of the
descending colon (which is apparently not as
rare as you would think!) and blood vessels
were wrapped around the colon. As soon
as they were detached, the stoma popped
out. Surprise, surprise!
Over the next 24 hrs.
he seemed to be recovering well. Then he
fell in a heap, obviously in severe pain,
restless and febrile. The night staff
worked in him to get another IV line in &
do blood tests to see if they could figure out
what was wrong. 48 hours after the
original surgery he was back in theatre, where
they discovered that his bowel had been
perforated. The surgeon was unable to
repair the colon, so he pulled it out through
the stoma past the torn part, and refashioned
the stoma. Wim was a very sick young man
indeed, with peritonitis and
septicaemia. We were in RCH for a month.
In March 2015 it was
decided to do another transit study.
Blow me down, this showed Wim has rapid
transit! So why does he have
constipation rather than diarrhoea??
What a mystery. We stayed in Care by
Parent for the duration of the study, in case
he had a negative reaction to not having
laxatives for 8 days. After the last
picture was taken in Nuclear Medicine, we went
back to Care by Parent for breakfast.
Wim had apple juice for the first time in a
week. About 30 minutes later, he was
vomiting & had massive output via his
stoma – the first output in a week.
X-ray showed his gut was totally empty after
this clearout from both ends. So he
hasn’t had fructose since then, & we are
waiting on a fructose & lactose breath
test to see where we go from here.
Life is certainly
The above article
was provided to Y.O.U. Inc for publication
co-morbidities are available, contact Lilian.
Young Ostomates United Inc