When I met
the surgeon at St Mary’s Hospital, I was not ready for her sucker-punch.
“We have to
cut it out. All of it.”
“All? The
whole large colon? Does it have to be all?”
“Yes, and
the anal canal, as well. Up to and including the rectum.”
Only three
minutes before she had said reassuringly, “You do not have cancer yet in your
colon,” So far so good, I thought.
“But,” she
continued remorselessly, “you have high grade dysplasia cells (what??) along
the whole length of the large colon. According to past practice, these cells
will almost inevitably become cancerous. It has been building up over the past
year or so because the inflammation of your colon has lasted for so many years.
As you know you have had Crohn’s Disease, or ulcerative colitis, over the last
twenty-five years. The cells are now too weak to resist a cancerous growth.”
“What other
option do I have?” I asked.
“Well, you
can do nothing at all, and continue with your current treatment, but then
the NHS can do nothing prevent you from getting
cancer.”
As I reeled
from this information, a sudden alarming picture emerged. “Then, do I have to
wear a colostomy bag?” She nodded.
How long
for? “Forever”.
It was like
a death sentence. I only knew a couple of distant acquaintances who had worn
stomas, but I did not know the details of how they lived and had never
discussed it with anyone in the past. Living with such a bag seemed like some
kind of life changing disaster, like going blind or losing a limb. This may
have happened to other people, but, thank the lucky stars, it was not supposed
to happen to me or someone close to me.
This was
like a bolt out of the blue. I had merrily continued with my Crohn’s Disease
over the last decades. I had been told that the disease was incurable, but
manageable. It was an irritant, but at least it was painless, despite its
uncertainties. The condition had caused me to undergo infusions every six
weeks, and the pleasure of a colonoscopy every two years, but this way of life
seemed acceptable and bearable in the long run. I could imagine it continuing
in the same way unchanged into the future.
True,
Crohn’s could be treacherous at times, with its occasional urgency taking you
by surprise, especially when your self-control might relax as you neared a
restroom. It left me embarrassed every now and again, as on a bus, or on the
high street in Tunbridge Wells, or in the middle of the Alexanderplatz in
Berlin, but I had become a past master on clearing myself up to disguise the
mishap. In fact, I described living with Crohn’s Disease with a certain relish
in my travel journal “Chasing Phileas Fogg: 80 Days on the Borealis”. I am 77
years old, but the Crohn’s did not
prevent me from working for a Chamber of Commerce two days a week or
having a very busy schedule for my work in the Polish community.
However, in
November I saw the head of the Gastroenteritis Clinic in Hammersmith Hospital
for what I thought would be another routine appointment monitoring my progress
with the Crohn’s. He looked kind of sad and shook his head gloomily. “I’m
afraid,” he told me, “I have given you this treatment as long as I could, but
now we need to find more drastic solutions. We have observed the possibility of
cancer, following the results of the latest colonoscopy samples we have taken.
This may require some surgery,” he said
ominously. He recommended an appointment
for me at St Mary’s in Paddington with a surgical team. And so, I found myself
in the presence of this lady surgeon with her alarming announcement.
The new
advice was such an unexpected body blow that I was left with the dilemma.
Should I take this radical step to prevent a cancer which had not yet invaded
my cells? Or should I tough it out and carry on as before. Many of my friends counselled against surgery, although
my wife felt that perhaps the surgical option had a certain logic to it.
I read up
the literature on it. What did wearing a stoma, or colostomy bag, entail? My
rectum would be sealed, my large bowel would be removed, and my waste would
pass through the same small bowel directly into a little plastic pouch attached
firmly to my body, which I would empty when necessary and change every other
day or so. It would be a lifetime commitment. There would be a stoma unit at my
local hospital to supervise my progress and arrange for my supply of fresh bags
and other necessary accessories to make those regular changes. It sounded
dreadful.
What were
the dangers, apart from the obvious? An operation is always risky, there would
be an uncomfortable stay in hospital. The brochure helpfully listed the risks,
whether common, less common, or rare. Most were rare but these could include
hernia, wound infection, nerve injury, sexual dysfunction (oh dear!),
significant bleeding, blood clots, abdominal fluid collections, and finally
something headed briefly as “death” .
On the
other hand, the operation, which is helpfully called a laparoscopic
panproctocolectomy, would remove the
risk of developing colon cancer. There
would be no chemotherapy, no long-term pain or risk of eventual death from
cancer. For the surgeon it was a fairly standard operation, under general
anaesthesia, and she would normally be able to perform it through keyhole
surgery. She would slowly remove my infected large colon through my right side
until she reached the link with the uninfected small bowel which would be
allowed to protrude for an inch or so. She would then place the stoma over
that. I had this weird image in my mind of the surgeon slowly pulling out my one and a half metre
colon, hand over fist, wondering when she would finally reach the link to the
small colon.
Some
200,000 people in the UK have a stoma, including famous singers, comedians, and
athletes. It would not prevent them from being active. I was told that I should
be able in time to continue my work and my community activities as before.
After all, Napoleon had a permanent colostomy bag following a gunshot wound,
and it did not prevent him from continuing quite a busy lifestyle, including
coronations, mistresses and staging quite a few battles all over Europe.
I took a
deep breath and said, “Alright, let’s do it!”
Some of my friends urged me to wait, but I saw no need to delay. I asked
the surgeon to give me a date that would allow me to have a book launch for my
latest publication describing my 80-day cruise around the world with my wife.
After that I was committed.
The
operation in Charing Cross Hospital lasted 7 hours. Staying in hospital for 8
days was a drag, but one I had expected. Initially I was linked to various
12-hour infusions, with a so-called Robinson’s bag draining my single kidney (I
had once donated the other kidney to my wife), a cluster of cannulas on each
arm, while my poor willy was intimidated into submission by a catheter
collecting my pee. My stomas were being drained regularly by the ever-patient
nurses. Within a few days the staff had removed the catheter and the Robison’s
bag.
Emptying a
stoma, and sealing it up afterwards, proved child’s play. The real problem was
to learn how to drain the stoma yourself and then how to change it. My initial
two attempts, supervised by a special stoma nurse, left me so stressed that I
nearly fainted each time. However, I realised that this was something I had to
overcome as I would be responsible for this procedure for the rest of my life.
So, I lined up the necessary accessories. These included the new bag cut to
size to fit the stump of the protruding small colon, the ice-cold spray to
remove the old bag glued to my side, the bowl of warm water, three or more
wipes and the black plastic bag to collect the debris at the end. I placed them
on my bedside tray in the order of their use with the opened black bag first.
Then I took a photo of it. After that I proceeded systematically to make the
change. It took less than a minute. I pressed down the sides of the stoma now
sticking to my body. I was the master now. Obviously, there was still a lot to
learn but my recovery was beginning. I was ready to leave the hospital and face
the world.
The initial
aim was to ensure that my waste was not too watery. Initially the contents
would just pour out, but as soon as I had recovered my appetite and had moved
on to more solid food, my output became thicker and left the bag grudgingly. In
time I had to squeeze it out, like toothpaste out of a tube. However, my diet
had to change. Still, I now had to cut the crust off my bread, and the skin off
my fish or potatoes, avoid stringy and high fibre foods, peas and sweetcorn,
raw fruit and veg, and items with pips like grapes and strawberry. I should
choose white bread rather than brown, corn flakes rather than weetabix, tea
biscuits rather than digestives, soft eggs rather than hard boiled. Apart from
that I could eat most foods but should learn to chew them and eat them slowly.
I should avoid driving a car for some 6 weeks, avoid strenuous exercise and
lifting any weights, but otherwise be active. Within 24 hours of leaving
hospital, I was out walking every day, buying newspapers, meeting friends in cafes, travelling on a bus. For her birthday we travelled for a 3 day "dirty" weekend in a riverside hotel in Maidenhead. We travelled there by Elizabeth Line. As for heavy shopping, my wife and I switched temporarily
to ordering our main food through supermarket deliveries. This was the new
reality.
I had
learned to change the pouch every day in the morning before breakfast so that the
procedure was not interrupted by sudden spills from the stump of the remaining
colon. By the way, the output was
normally odourless, unless you had eaten some pungent fish or curry. You would
not normally be embarrassed by its content when at work or in a pub or café, and the bag is not transparent.
(to be continued)
