From Pain to the Pouch
I've just got back
from a 10k ride. Up and down the roads
and the trails of Silvan Dam's park and
bushland on my mountain bike. I'm back
to full-time work, back to the footy, the
movies, the park with my two children, taking
them for long walks. I even get to go
Mightn't sound like
much but given where I was not that long ago,
they're all "little victories" that mean a
Perhaps if I walk
back through time ...
Four months ago
... pacing up and
down the corridors of the colorectal
ward. The second stage of the
procedure and the "three to four day" stay
in hospital is blowing out to ten days
because the new "works" aren't yet
working. Did I do the right thing?
Should I have kept the bag? A few
weeks prior to this, my surgeon asked me
whether I could cope with living with the
bag if they couldn't complete the
procedure. No worries. Life with
the bag was a hundred times happier and
healthier than life with the disease.
Now I had pause to think, "Had I made the
right decision?" I have a J-pouch;
it just isn't functioning for the moment.
Seven months ago
... did anyone get the licence plate of that
truck! The excruciating pain that I
expected to experience post-op never
came. The post-op depression that I'd
never knew about hit like a KO punch.
Day five it struck and the memory is still
vivid of lying in my hospital bed thinking,
"I've got no fight left in me - I
quit!" Not once whilst fighting my
disease did I think like this. I had
remained positive even whilst the disease
was raging at its worst but now, for the
first time, this was gone. Calm,
compassionate responses from a nurse and
then my ex-wife starting me back on the
not-too-long road to mental recovery.
Quality medical care had already set me on
the road to physical recovery. I
have just had a total proctocolectomy and
ileo-anal anastomosis. Prior to this
... I had ulcerative colitis.
Nine months ago
... my gastroenterologist tells me what I
already knew to be true. Mike,
I've done for you all that I can do.
I'm sorry but medication is not going to
help. We've tried everything that we
currently have at our disposal and none of
it has got you near remission. These
may not have been his exact words but I was
neither surprised nor ill prepared to hear
them. I knew I couldn't survive on the
doses of prednisolone that had kept me going
until now. Since my first major flare
up twelve months earlier I had experienced
periods where things "weren't too bad" but
not a day where things were "good".
I had deteriorated
to the stage where I couldn't really keep
working (so my redundancy was fortuitously
timed), I couldn't leave the house without
severe stress - doing a simple task like my
grocery shopping was a too vivid nightmare -
and I couldn't even take my children on the
twenty-minute trip to school without
stopping off once or twice at one of many
public toilets along the way. My life
revolved around toilets and drugs. I was
very much shutdown into survival mode.
Toilets - if I knew
the route I had to take then I had them all
memorised. If I didn't know the route,
I'd get out the map or use the facility on
the net to work out where I had to go in an
emergency ... and you could count on an
emergency. At my worst I was going
twelve to eighteen times a day; when the
need to go hit me I knew that I may have a
few minutes if I was lucky, often I had
seconds to make it; the pain at times was
close to the limit of my ability to endure;
and the blood was just prolific.
Drugs - I'd always
preferred not to take any drugs if I could
avoid them. I'd rather the headache
disappeared of its own accord than having to
take a paracetamol and I'd never want to
take stronger than that. My IBD necessitated
Salazopyrin replaced by Dipentum, Imuran and
Ciproxin. The only one that brought
any positive response happened to be the
only one that brought side effects -
half-a-dozen of them that grew more
pronounced over the fifteen months that I
took it. The corticosteroid kept me
going for a time but was not sustainable. I
wanted to be drug free.
As an aside, one
thing that struck me was the stream of
well-meaning advice I'd receive from family
and friends who had absolutely no idea about
the disease. Drink aloe juice, eat
bananas, don't eat bananas, eat cold
hard-boiled eggs, don't eat nuts, drink
comfrey tea, drink pro-biotics, don't
drink cold drinks, try these tablets -
they're natural - it can't hurt.
Many of these folk would get well into their
advice before saying something like "this
helps with irritable bowel syndrome".
Perhaps I had mumbled earlier when I'd
mentioned my disease.
ago ... hazy recollection. After
three or four really bad months, I'm now
just coming around after my third
colonoscopy in the last seven years.
Did I hear the gastroenterologist correctly?
"Ulcerative colitis"? Never heard of
it. Fortunately he wrote it down for
Thus began a
journey of trying to educate myself as much
as I could, trying to have some control over
a matter that seemed to be spiralling
out. I asked questions/listened to
answers, joined ACCA, surfed the web for
hours on end to try and get my head around
how, what and why? To this day I
haven't found answers to all of the
questions that arose - how did I get UC?
- though I did find enough to gain some
further insight into myself, assisting me to
move forward with confidence that each
decision I made was the best that I could
Nine years ago
... I looked down into the toilet
bowl. Blood. Shouldn't be
there! Better get that looked at.
I commenced writing
these recollections a few weeks ago.
I still go to the
toilet fairly often but the pain is gone, the
bleeding has gone, and I've got good
control. I'm drug free. I'm
disease free. All things considered, I
How did I get from there
to here? ... the support of my
family, my employers, the gastroenterologist
and the STNs; the exceptional skill of the
surgical team; the after-surgery care;
well-wishes from friends; my children's
smiles. I've already thanked these
caring people personally. My own
otherwise good health and the knowledge gained
by those who went on before me were invaluable
- the surgeons, specialists and patients prior
to me, most of whom I'll never meet, though I
owe them my thanks.
However, prior to
surgery I chatted with a lady from ACCA with
direct experience of bowel surgery, met with
one member of YOU (by chance a good friend of
my daughter's teacher) and spoke to another,
both of whom had had surgery for UC.
Whilst convalescing after stage one I spoke to
yet another. These last three people were the
first three people that I'd ever spoken to who
had UC. My conversations with them were
some of the most important of all ... and
maybe in time I can assist someone facing the
imposing "mountain" that bowel surgery is like
Mick, Ros and John assisted me.
Good health and best
"Just for YOU" (Volume 13 - March 2003)
Young Ostomates United Inc