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Patient Stories, Colin from Weymouth

Looking back, it seems like a bad dream, almost a nightmare, something I would far
sooner forget. However, if this proves to be of use to someone, then my words and
experience might be worthwhile.

It was late Autumn (2012), and here in Weymouth all the Olympic bunting had been
removed, the crowds had long gone and the town was beginning to settle down for the
winter. One day, the post brought with it an invitation. Not to a wedding, not to a party
but something completely different. If my memory serves me correctly the opening went
something like this:- Dear Mr H****, you have now reached the age when you are
eligible for Bowel Screening etc. Back in the envelope it went and I left in in my desk.
Three weeks later, they chased me up (for want of a better expression). I re-read the
original letter and decided to participate.

Less than two weeks later, I received a response informing me of an abnormality and a
further invitation was offered when I should attend a meeting with a bowel screening
representative who would explain options. It seems there were two. One was to do
nothing, the other was to have a colonoscopy when an exploratory tube would be passed
via the rectum which would allow anything to be seen ie polyps and removed. I elected to

Some days later this procedure took place and once completed (within ten minutes) I was
told that indeed there was something thing there which could not be removed due to its
size and it would require open surgery. The thing was referred to in several ways, a
mass, a tumour, a growth etc. It was suggested to me that to do nothing might mean the
thing would continue to grow and eventually block the bowel and perforation could
follow. They also informed me that an area of diverticulitis would be removed. My
understanding was that even if it proved to be benign now, if left, the chances were that
it would become a malignant cancer. Sleepless night followed with my mind asking the
question what if it is? what if it isnt?.

They would not know the answer to this question until the result of the biopsy came
back, however certain marks on the growth suggested that it might well be malignant and
because of that, they would speed up the process and I would have an operation within
days. It would be an open operation as against keyhole, due to the size of the growth.
They forewarned me that I may discover an ileostomy had been created but hopefully it
would be reversed.It seems that everything I was told, was preceded by it maybe or
it might mean or hopefully, they chose words so very carefully, which looking back, I
can fully understand now.

At this stage, things moved fast. So much to do, so much to think about. The fact that I
already had a urostomy of 25 yrs, they would need a urologist on standby as they
anticipated organs might not be lying where they should be.

Came the day and the need to attend at 7am. That in itself meant a departure from
home at 6.15am. After visits from the anaesthetist and surgeon they soon wheeled me

As I began to regain consciousness I asked if I had an ileostomy and was told yes.
It was in the days that followed, that I learned that it was not malignant but benign
and as such, I didnt have anything to worry about and all there was to do, was to
recuperate by relaxing.

I have to say that it seemed very strange with two pouches. Whilst my newly created
ileostomy was foremost on my mind, I needed to keep an eye on my urostomy and not
forget when it was due to be changed.

Yes there were issues which looking back were minor, such as finding it odd, sometimes
difficult trying to attach the appliance on what seemed to be the wrong side. I had been
issued with one piece appliances and for me personally, they are nothing short of a
nightmare when trying to apply. Thats probably because of my 25+ years using two piece
appliances, but, I overcame it.

Discharge day came and with it, an appointment to see the surgeon later, when a date
for the reversal of the loop ileostomy would be given.

All I can say is thank the lord for jogging trousers. They are loose, comfortable and the
waist band can be adjusted to accommodate ones need.

Being confined to home is frustrating so at the first opportunity my daughter took me

into town. I fancied breathing in the sea air and simply looking at the waves, even though
it was winter and cold. We stopped off at a shop first, but then I experienced horror. I
felt moisture and it wasnt my urostomy. How glad was I that the car was outside. There
isnt any need to follow this through,but to say I didnt see the sea and it put me off
going out for several more weeks.

Each and every persons experience of this procedure will vary, but in my experience, the
period of living with an ileostomy was far from favourable. Im not complaining as I know
the procedure from start to finish was not only necessary, but possibly life-saving as the
growth would have continued. In fact just prior to my experience, I had a friend who had
been through it all and it was plain sailing with no issues whatsoever.
The reversal of the loop ileostomy was carried out two months later and on discharge I
was told, thats all there is to it, no need for follow-ups.
Via email, I received information from Hazel Pixley (ua National Sec.) and Anne Demick
(ia National Sec.) who gave me contact numbers of members with double diversions. Then
there was much support and help from Dave Simmons (friend) who most of you will know
from his time on the Nat. Exec. He provided lifts to and from Dorchester County
Hospital, he kept in daily contact with not only my wife, but family as well. His support
made life at that time, much easier.

Yes I lost weight, in fact two and a half stones disappeared and I looked quite ill, it
didnt help because I seemed afraid to eat in case it aggravated output. However, it has
to be said that this was short-lived and I now eat for England and the weight is coming

The opportunity to participate in this exploratory procedure has only been available for
a few years I believe so it makes sense to say yes when your time comes, just in case.

Since submitting the above article, I wondered if it might be an idea to produce a six
months later update. The idea came to me as I am sure there may well be someone
somewhere that is about to undergo or has just undergone this type of surgery. (Just
realised I have used the phraseology of the UKs opening line, ah well, never mind, it just
goes to show it is still tattooed on my brain).

Remember this is MY experience and it must not be taken as the norm for such surgery,
we all respond differently. As I said earlier, I lost two and a half stone, I looked grey
and gaunt and felt dreadful. I ached from limb to limb and found it painful to do almost
anything, especially getting into and out of bed. My appetite was poor, I nibbled at food.
It was thought that I was afraid to eat anything due to the temporary ileostomy. My
biggest fear was that when the time came for the reversal of the ileostomy, they would
say for whatever reason, we cant do it. I know there are thousands more people that
have an ileostomy than there are that have a urostomy and no doubt each of them would
say, you get used to it and maybe so, but at that time, I could not fear anything worse.

As you have read above, the ileostomy was reversed, two months after the main surgery.
This in itself is not something cast in stone, some have it done sooner, some later.

So, how have I progressed since the reversal?. My appetite has returned. My weight is
increasing, not alarmingly but I will soon have to be careful not to balloon, as shorts on
the promenade and a huge tummy, are not conducive with an image I would welcome. The
greyness has been replaced by a healthy tan. Cheekbones have disappeared, and to all
intents and purposes, I appear fit, well and healthy.

So, to repeat. If you find that you are requested to attend a hospital as they are not
happy with the result of a bowel screening test and they offer you the opportunity to
follow through with investigations, yes, go for it. Whatever they wish to do, it only last
a few minutes, the inconvenience is short lived and you are soon on your way back home.

Should open surgery follow (I say open and not keyhole), then for a time in all probability
you might wish the time away, but its only a few weeks, maybe months. I am now back to
my old self, with people constantly asking how I am and saying you look exceptionally
well considering what youve been through. Off I trot, into the sunset, thinking to
myself, lets plan for tomorrow, because if I had not taken part in the bowel screening
program, there might not have been a tomorrow.