Here's a little story
about my experience with stomal surgery, with
exaggerations and elaborations courtesy of an
overactive imagination. Note that the
following, story should not be taken as
(completely) gospel, let alone fact.
Everyone has a unique story and not everyone's
body reacts the same. But maybe it will
allay some fears... and introduce others.
It all began back in
early 1998 <insert tacky flashback
sequence>. I had been suffering with
recurring and recalcitrant perianal abscesses
and fistulae. The colorectal surgeons
had been trying to keep the cavities draining
freely by inserting "setons" (loops of
surgical thread). This form of treatment
was enjoyed and celebrated by the whole team
of surgeons, interns and students, who poked
and prodded with the splashing of "oohs" and
"aahs". The teams were especially
entertained when after one particular session
in theatre; some sick sadist had used tape
instead of a "T-Bind" to hold the combine
dressing in place. My hairy butt did not
appreciate the joke.
Despite being a new
and interesting procedure for colorectal
surgeons, the seton treatment didn't do
anything for me. Things were getting
worse. The surgeons admitted that they
were stumped, so I packed up my bat and ball
and went off to find someone else to talk to.
After much seeking, I
found an ancient Chinese herbalist, who
pottered around asking me to snatch a pebble
from his hand. This wizened old man
brewed me up the foulest smelling concoction
he could find and instructed me to drink one
third and sit in the remainder. This
"tea" was made from the offal of a dragon from
the Ming dynasty and the obligatory bamboo
shavings, and tasted worse than Dilmah.
I stuck at it for two weeks. It didn't
work but I would have been kicking myself if I
hadn't at least given it a go.
I was in a lot of
pain, particularly in the mornings and had
been off work for over six months. As
anyone who has been on long-term sick leave
can testify, this is not easy, and presents a
number of issues. Depression,
frustration, anxiety and anger are just some
of the problems, as well as mental dullness
and memory loss (yes folks, it's not just you,
memory loss is quite common amongst the
chronically ill). It helped to try to
establish some sort of routine, to keep my
mind off things. I had a daily routine
of being depressed, frustrated, anxious and
One of the most
difficult issues for me was an increasing
feeling of financial insecurity. This
sparks off a number of other issues, such as a
feeling of failure as a provider, low
self-esteem and enormous pressure on other
family members. With being off work for
so long I was anxious about whether the job
will still be there when I return. I was
even questioning whether I would ever be fit
enough to return to work. Even if I did
get back to work how long would it last?
When the revolution comes and it was time to
assess people's productivity, I would not be
very high on their list. Luckily, my
employer was very supportive, and a large
enough company to absorb the cost and develop
a "back to work" plan to ease me back into the
office. I also think it helped that I
kept in regular contact with my boss keeping
him updated on my progress and asking how he
was going in the footy tipping.
After six months of
being off work, eight months of progressively
worsening infections and a new litter of
colorectal surgeons, I was starting to get a
little fed up. This was beginning to become a
real pain in the posterior.
The advice from the
senior surgeons was that I would require a
permanent colostomy and full
proctectomy. I had tried a number of
lesser treatments and various pharmaceutical
cocktails, to try to avoid "stomying" my
"colo", but now it was time to make a
decision: either to continue to put up
with the perianal infections and survive on
painkillers, or to have the surgery to give
the area a rest and see if that helped.
I was particularly anxious about having a
proctectomy due to the very delicate apparatus
down there and I had heard that there is about
a 10% risk of impotence after such an
However, the new
surgeon presented some other options. He
was relatively young and not so set in his
ways and was willing to take things one-step
at a time. He advised first trying a
temporary colostomy and see if that helped and
then to try a "rectal advancement" and see if
that helped. This sounded much
better! So I bit the bullet and booked
in for surgery.
Despite having plenty
of warnings of this surgery, doing plenty of
research and having plenty of time to get used
to the idea, I was still very anxious. I
would find myself thinking about it
constantly. I borrowed a few "Dealing
with Worry" books from the library and while
they were all very nice and have lots of good
ideas, I was still worried. I guess this
was one of those situations where no matter
how much you sweat over it, the bottom line is
you'll just have to accept it. The
future was a big unknown and I would just have
to trust in my own ability to adapt.
Finally, after an
agonizing wait, I went in to hospital to have
the surgery. Now, I was a "veteran" of 3
bowel-resections, so I knew pretty much what
to expect. But for those that have not
had surgery before, I can understand that it
can be more than a little daunting. So
here's a little insight for the
uninitiated. Don't be put off by the
gory details - remember that it is only a
relatively short period in your life.
I had a bad
experience once with the Draino.
Since then I have learnt to drink some cordial
(or other salt-replacement fluid) while taking
the stuff. And another tip: don't draw
smiley faces on the stoma site markings ...
the rest of your body is fair game,
though. And make sure that they have one
of those handles above your hospital bed so
that you can pull yourself up when your tummy
muscles aren't working.
Day 1. I was
given a PCA (Patient Controlled Analgesic) to
administer morphine to control the pain.
I chose PCA mainly so that I could get mobile
as quickly as possible. That is my
secret to an early recovery: Get
moving as soon as you are able (under
supervision, of course - you are just "testing
the boundaries" and don't want to overdo
it). There was general soreness around
the abdomen. It is pretty hard to do
anything, so lay back and enjoy the sponge
baths and general pampering. Being
bedridden, I needed a catheter to empty my
bladder, and warfarin injections to prevent
unwanted clotting. DON'T SNEEZE!
Coughing, laughing and sneezing hurts.
At first, the cough is pitiful (like the sound
of a cockroach sneezing, magnified 50 million
times), but it gets stronger over time.
Try not to laugh and ban all joke-telling
visitors for a few days. Sneezing is
nasty. It can take you unaware and be
very explosive. Try violently pushing
your nose into your face. It doesn't
help, but it can offer the nursing staff a few
laughs. With all of these, fold a pillow
in half, and hold it against your tummy.
It might sound strange, but it does help.
Day 2. I
managed to stand for a few minutes. It
was enough to convince the staff that I no
longer needed the catheter and to stop the
Warfarin injections. I was glad.
It happened only once but I had a bad
experience after having a catheter. I
don't know how those razor blades got in
there! But this time, the nursing staff
gave me something found only in the mountains
of Europe to reduce the acidity of the urine
and there were no problems.
Day 3. I was
not only standing but I walked, albeit like
the Hunchback of Notre Dame. I had one
hand on my tummy and found it nice to have the
other hand on my lower back. To mess
with my mind I dressed in my street clothes,
trying to fool my brain. It worked.
Day 4. Walking
a bit more. My lower back was hurting a
fair bit. Applying heat packs (e.g.
wheat) helped a lot. The stoma had
started to roar into action and I was
disconnected from the IV. It still hurt
to cough and sneeze but I managed to develop a
sinister laugh that wasn't too painful - so I
called the in joke-telling brigade and invited
them to do their worst.
Day 5. Now I
was doing laps of the ward and getting to know
my fellow inmates. I don't know whether
this was normal for a colostomy but it hurt
whenever the stoma started to work. So I
was still taking a regular dose of codeine.
Day 6. Things
just kept on improving. Walking,
sneezing, and stoma-ing were all getting a lot
easier. There was some redness around
the staples (yes, I had staples instead of
stitches) due to them tugging against my
Day 7. I proved
to the Stomal Therapy Nurse that I was a
Master of the Poo Pouch and was sent
home. A day later I received a big
basket of goodies from the suppliers.
And this is how I started to get my life back
I went back to the
doctor's again about 3 days later and got the
staples removed. Two out of the twenty
hurt a bit when they were removed. But
it felt so much better afterwards! The
pain had gone apart from the expected
tenderness after major abdominal
surgery. Even that settled down over the
next 6 weeks but until then no lifting, and no
operating heavy machinery! That includes
cars. They are extremely hard to
lift. Hernias come easily to those whose
tummy muscles have been weakened. I told
myself to be patient and to take things
slowly. It wasn't long before I was back
mountain climbing, parachuting and wrestling
Of course, with such
a change to a primary function of one's life,
there was a period of adjustment. I
remember the first time I saw the stoma, it
was pretty off-putting. It looked like a
mound of squashed raspberries. The
Stomal Therapy Nurse reassured me that it was
still fresh and swollen but that it would
settle down. And sure enough, it has
changed. It is now more like a pink
little brain. And the smell! It
was stronger than I expected. Again, the
Stomal Therapy Nurse came to the rescue with
these magic drops - I was sceptical, but they
actually work! However, I still put the
exhaust fan on in the bathroom.
It was an experience,
too, having a shower and watching the stoma
after getting warmed up, in action. Bed
was another weird experience. Try to
imagine going to bed with a beach ball!
Actually, it's not that bad. But it did
take a few weeks before I stopped cringing at
the thought of being touched. A month
later, my wife told me that she doesn't even
realize that it's there. It's not an issue.
I had been warned to
expect "the usual teething problems".
Nobody actually explained what problems to
expect so I imagined all sorts of catastrophes
and faeces-filled moats, but I didn't end up
having any major problems. Nothing
unmanageable anyway. The colostomy
output is still erratic and often very
loose. So loose it clogs up or even
leaks out of the bags filter. Bandaids
didn't help. I called the supplier's
hotline (they are great and are more than
willing to help with advice or to send freebie
samples). I decided to change to a
non-filtered bag until things firm up. I
am still waiting for things to firm up.
While I was still
tender after the operation, I chose to use a
two-piece system with a "floating flange" (one
that I could get my fingers underneath so that
I wasn't pressing so hard on my tummy).
The suppliers hadn't heard of this happening
before but I had a bit of trouble with the
flange splitting when it should have been
floating. So I changed to a non floating
The only other little
problem was with noise. The stoma has a
malicious mind and will always wait until the
quietest, most inconvenient moment to start
trumpeting. My only advice is to
maintain a sense of humour. It may help
to give your stoma a name. Mine is
called "Pete", after a good friend of mine ...
'Ave a Good One!
Reprinted from the
"Thoughts of YOU" membership folder.
Most stories were written from the early to
Young Ostomates United Inc