A second chance - My silly and philosophical look at the cure for Colitis

Wife's entry, 4 months after 1 step Jpouch surgery

2010-08-02T23:25:00.000-07:00

Hello All,

It's been a long time since either one of us has contributed to the blog and for good reasons, Steven is doing really well! We have been too busy living life again and it feels great to be able to take things for granted. Let me tell you what has changed as a result of Steven's last surgery.

First of all no more bag changes. This bi-weekly ritual of careful timing and anxiety is behind us. The agony of taking tape off an open wound is a thing of the past.

Second, there is no more need to conceal a balloon under Steven's shirt. The balloon would expand according to Steven's diet and in general takes a bit of fashion planning during business meetings.

Third, and possible the biggest news of all is that Steven is weight lifting again!. I remember when we used to see other people's blogs about how much they can weightlift now that they have a j-pouch. We of course thought they were lying and Steven has resolved that weightlifting would be a thing of his past but not his future. Well, not only is he weightlifting again, but he is cutting the grass, traveling and in general doing much better. While he still lacks the energy he once had, his waking hours are much more productive.

I just wanted to thank everyone who has been staying connected during Steven's journey. I know your support has meant so much to both of us. I think we really need to have witnesses during our life challenges so we have a sense of reality when the bad times go away.

Love,
the wife

No more updates

2010-04-28T20:45:00.000-07:00

I think its time to say goodbye. The surgeries seem to have worked and all is well again. 3 years of colitis and its time to move on.

I don't know how long the health will be here for. Noone does. But I will certainly make the most of it and invest my second chance very carefully. Its been one hell of a learning experience. Nothing remains the same when you stare death in the face.

Really cool news

2010-04-21T19:18:00.001-07:00

I forgot to mention some great news. I was on prednisone for about a year, at 40-80mg and had wicked diabetes (24 mmol). Now its down to 5-6 mmol! At least some part of yours truly is normal!!

Hohum

2010-04-21T19:13:00.000-07:00

Although I run to the can 14-20X per day life is kinda hohum. I'm lucid enough to work for myself and start controlling my own financial destiny rather than rely on others. Its cool to have that control. My nights are still sleepless and my joints are still achy but all in all, I really am not complaining.

The new plumbing really seems to respond to diet and timing. Here are the new rules:

-separate water from meals (the colon used to re-absorb water but when the colon is gone, the water comes through... it seems like 3-5X more water in the stool than before).. So if you separate the food from the water as much as possible, you seem to go less often.
-big meals take a long time to get through, up to 16 hours(!)
-smoothies run through in as little as 3 hours

I'm still trying to figure out just when to eat so that I can sleep that evening without too many bathroom breaks.
As I said, hohum stuff. It looks like a higher protein, higher density diet is more logical as less stuff runs through the system. Oh, and lots of yogurt may help (but who knows).

By the way, the running to the can is an exaggeration: there is little urgency and I can "hold it" unlike before. Basically, life with a JPouch is like like with UC except that the pain and bleeding are gone and there is control/continence. I think that anatomically that is quite accurate too as the inflamed, pained, crazy perilstasing tissue has been removed, the tenesmus is gone and otherwise everything else is the same as it was with UC: frequent BMs and only a small intestine doing its job.

Don't Complain.

2010-04-17T15:42:00.000-07:00

It could always be worse. Here's an example of a most kind and upbeat fellow who has it just a bit worse than than at least I do...

My Medical History!

Let’s start off with the ‘public health warning’! For those of you reading
this who are having stoma surgery, let me say that what you are about to
read here is very far from the normal or expected. I have been described as
‘Job’ from the Old Testament by the chairman of an Industrial Tribunal
because of the ‘if it can go wrong, it will’ situations. Please don’t
think that anything remotely like this will happen to you!

My first encounter with 'unhelpful' nurses came when I was four. I had
previously been in Nottingham Children's Hospital twice before for removal
of adenoids and antrum washout on the first occasion and an antrum washout
the second time. Following both of these, I was very sick on recovery in
the ward and the nurses were kindness itself, despite having to wash me and
change the bed on several occasions. On the third occasion, having been in
a ward at the front of the hospital near the top, I woke from the surgery
in a ground floor ward at the back of the hospital – I had been moved beds
without prior warning. All of my toys, including my beloved Teddy Bear
were in the upstairs ward. When I asked for my Teddy Bear, the nurse
belittled me for wanting it, saying I was too grown up to want a Teddy
Bear. That, together with waking in a completely different part of the
hospital was a terrible experience. My father got my Teddy Bear back for
me, but some child on the ward where I'd been had been allowed by the
nurses there to keep all the rest of my toys – not how the nurses should
have behaved, in my view.

My first major medical problem occurred in September 1967 while I was still
at school. I took my then girl-friend to Lincoln one Friday. On the way
home, I was overtaking a lorry when it suddenly turned right, knocking us
both off. A police car was coming the other way and, when I recovered
consciousness, the police and ambulance service were in attendance. A
doctor had come from his house opposite to claim his RTA payment and said
that my girlfriend was in shock and needed keeping warm. I therefore
removed my jacket to cover her! The ambulance crew loaded her, still
unconscious, into the ambulance and invited me to join them. I insisted
that I felt fine and there was no need for me to go to hospital. One of
ambulance crew managed to get me into the vehicle by saying that my
girlfriend would want me there when she recovered consciousness. I should
add that blood was pouring from a head wound over my face during this.

At Lincoln County Hospital, my girlfriend was taken straight in and the
ambulance crew told me to wait for them. They came back with a wheelchair
and insisted that I be taken in on that. By this stage, I was beginning to
feel rather unwell! My girlfriend was dealt with very quickly, but I was
left on my wheelchair in a corner of A&E for some two hours. The doctor
came over to me and asked who I was. I told him I was the RTA from the
A46. He said, “But you've been seen!” I assured him that I had not been
seen. He was furious with the nurse, saying that I should have been seen
much sooner. He then examined me and discovered that tapping my knees with
his rubber hammer didn't cause my knees to jerk. The same was true of all
my other reflex points. My soles of my feet did not curl in either
direction when stroked and my pupils were unreactive to light. I was sent
to X-ray where I ended up on a trolley next to my girlfriend. I was taken
to the nightingale ward where the nurses did quarter hourly neurological
observations. I slept in between these, but I was told that no-one else on
the ward did!

I had a sub-dural haematoma which, fortunately as this was pre CT scanners,
resolved without surgery, but a theatre had been prepared with the relevant
equipment that night 'just in case'. Some days later, a policeman brought
my crash helmet to me on the ward. He told me that he still did not
understand why he wasn't taking it to the mortuary. There was a 'T' shaped
crak, some 8cm long and 6cm high over my left ear. I had an RAC/ACU
approved racing helmet (not normal motor scooter wear!) and he told me that
if I'd been wearing a scooter helmet, I would not have survived.

I wore a PVC motorcycle style jacket which actually had burnt from friction
where I'd slid along the road. Later I was taken back to X-ray to
investigate a pain in my chest which turned out to be a fractured rib. On
arrival in X-ray, it was the same radiographer who had X-rayed me when I
first arrived. She greeted me with, “Hallo, Mr Gallagher. I didn't expect
to see you here again.” I didn't understand what she meant by this,
thinking she meant that I wouldn't need any more X-rays. When I said this
to her, she laughed, “No, when we saw you that first night, none of us
expected you to make it through the night!” That accident caused permanent
long term problems with my short term memory.

I had bladder obstruction problems caused by prostatic obstruction, but my
urologist considered that I was too young at 36 to have prostate problems,
so prescribed medication which made matters worse. At the age of 43, I went
back to my doctor who referred me back to the urologist who conducted the
same tests as before, with exactly the same result. However this time he
did think that I could have prostate problems and operated in August of
1993, carrying out a bladder neck resection. This was done using a spinal
anaesthetic. During its insertion, the anaesthetist caught a nerve and,
instead of withdrawing slightly and repositioning the needle, continued to
insert it, putting me through a great deal of pain. The anaesthetic was
very slow to take effect so that, when the anaesthetist sprayed ethyl
chloride on my legs, I was able to tell him which leg he was spraying and
do 'Tiller Girl' type kicks with my legs. He kept testing until a message
came for me to be taken into theatre as everyone was waiting. I still had
feeling in my legs and protested, but was ignored. Surgery started before
the anaesthetic took hold and I vowed never to let anyone use a spinal
anaesthetic on me again after these experiences. In the recovery room, I
heard someone's alarm go off and felt sorry for that poor person, whoever
it was, who was in trouble. Suddenly all the nurses descended on me, one
to increase the rate of flow of the saline infusion, another to lower me
head down and others to cover me with warmed blankets – it was my alarm
sounding for hypotension – my blood pressure had fallen through the floor.
This merely reinforced my decision to have nothing more to do with spinals
and I hate having epidurals inserted to this day because of the problems I
had back then. Fortunately most anaesthetists, aware of this, insert the
epidural under midozalam sedation.
Three months later, I was back on the operating table with the same
operation as I'd scarred over and almost completely obstructed. I was
actually in as a day case for cystoscopy under general anaesthetic using a
flexible cystoscope, but the registrar spoke to me before the surgery,
suggesting that I had scarred over, so he would perform the surgery
required at the same time as the cystoscopy by using the resectoscope. I
agreed, rather than have to have two admissions and further general
anaesthetics. He was correct in his provisional diagnosis. However, I was
admitted as an emergency to the urology ward as I was supposed to have gone
home the same day. The ward staff ordered up vegetarian food for me which
never came. I complained and the kitchen manager stated that I should have
been admitted to Harvey 2 instead of Lister 1 which is why the confusion
over my meals. When I pointed out to the management that I was a day case
and no admission to any ward had been planned, the kitchen manager was
caught out in his lie and had to admit that they just got it completely
wrong – a not unusual occurrence..
Over a six year period, I had six TURP/BNR (transurethral resection of the
prostate/bladder neck resection) - something of a record.

In December 1995, whilst recovering from one of these TURPs, I was making
myself a cup of tea when my left knee gave way. This has been an on-going
problem, even today, I have an attenuated (stretched) cruciate ligament in
my left knee which makes my knee joint loose stability and I have had
cartilage surgery to both knees. As I was carrying a kettle with three
pints of boiling water at the time, this was rather disastrous. I poured
the boiling water down the front of both legs, filling one slipper
particularly, and, as I fell, ended up sitting in a puddle of boiling water
on the floor. I got up, kicked off my slippers and rushed upstairs to
stand under a cold shower. Unfortunately, because I was shocked, I
showered my front, not realising that I'd also scalded the backs of my
legs. After 20 minutes, I put on a dressing gown and rang for an
ambulance. I left my wife a note to say what had happened (she was out
shopping and we did not have mobile phones back then) and got into the
ambulance. Cold water was poured on my legs which were covered with
absorbent pads to retain the water. When the ambulance drove off, I was
sitting in a puddle of cold water which sloshed around as we drove off. I
was using the entonox continuously as it hurt! We drove round the ring
road from Arnold, past the City Hospital and the Burns Unit to the Queen's
Medical Centre A&E. There the doctor looked, said I scalded myself badly,
gave me some analgesia and ordered an ambulance to drive me all the way
back again to the Burns Unit, back the way I'd come not long previously.
In the Burns Unit, the doctor looked at my buttocks, legs and foot and
announced that I could go home on the Friday as this was not serious (this
was a Wednesday). The nurses then wrapped my legs in Jelonet, gauze pads
and crepe bandages. On the Friday, the doctor looked at my legs again and
said that they were worse than he had originally thought, but I could go
home on the Monday. On the Saturday, I asked 'my ' named nurse, a
delightful lady called Debbie, for help as one of the bandages had come
loose. She looked at it, saying that she would change the whole bandage.
When she stripped it off, she immediately wrapped my leg in cling film and
summoned the registrar. He looked again, announced that I had, for some
inexplicable reason, continued to 'cook' and certainly was not going home
on the Monday as I'd be in theatre on Tuesday to have skin grafts. These
were applied to the back of both buttocks, thighs and one foot. The
scalded areas on my calves were deemed suitable to heal without grafting.
I had stabs of Plaster of Paris behind both legs from hip to ankle and was
lying flat with both legs raised on pillows to stop my moving and
disturbing the skin grafts. However, I was taken from theatre to a side
room as it had been discovered that I had strep B infection. When my wife
came to the Unit to visit me, she went to my bed and found it empty with my
name removed! A nurse came running over to tell her that it was all right
as they'd been busy, but wanted to catch her as she came onto the unit to
warn her that I was in isolation.
On the Friday I was back in theatre for the first dressing change.
Unfortunately the infection caused a grafted area on ly left thigh to drop
off. This took several months to heal and formed a keloid which required
further surgery later to excise. I was on iv. clindamycin and erythomycin
for the infection. One night, as none of the nurses had an iv certificate,
a junior doctor was called to set up the ivs. The nurses had drawn up the
antibiotics into syringes and put them by the bags of saline for him to
dilute. It was midnight and he'd never done this before. Instead of
asking, he just picked up the syringes, came into my room, flicked up the
port on my cannula in my right hand and injected the neat antibiotics
straight into my vein. I was drugged by the analgesics, so was not really
awake when he did this. As soon as he had injected the erythromycin, he
left. I was suddenly in agony., It felt as if I'd had petrol poured over
the whole of my body and set alight. For two hours I couldn't even move.
As this wore off, I fell into the sleep of shear exhaustion. I reported
this and Miss Bailie, my plastic surgeon, came to see me. She was a most
delightful lady – kind, considerate, so thoughtful and a brilliant surgeon.
She apologised most profusely for this mistake, saying the doctor was
receiving urgent training in both what he should have done and the need to
ask if it was a procedure new to him. I pointed out that it was not her
fault. I will always remember her reply. “Mr Gallagher, you are my
patient and my responsibility. Anyone, nurse or doctor, who looks after
you, does that in my name and I take full responsibility for it.” Wow! If
only more doctors could take that view.

I asked her how long I would be in hospital. I asked if I would be back at
school in time for the Spring Term. She gave a gentile little laugh, “Mr
Gallagher, your burns are going to take weeks, not days to heal and it will
be months, not weeks before you are back at school.” I then asked if
Spring Half Term was possible. Her reply was, “How about Easter, not
Spring Half Term.” She was right!
Most of the nurses on the Burns Unit were superb and they greet me even now
when they see me. A couple of the male nurses were not as good. I was in
a lot of pain and, when I had reported this to them, I was told to be a
man, stop complaining and put up with it. I now learn that I could have
had PCA pain control which would have stopped the constant pain I was in.
The kitchens did there usual incompetent job of getting me meals. The
nurses phoned up every morning to order them, and then phoned again at both
lunch and supper when the kitchens had forgotten to send me anything. In
the end, an HCA was sent to the local Co-op to buy a big block of
vegetarian cheese so at least the ward could do cheese on toast for me!
I wore pressure garments to flatten my scars. The normal time is a few
months – 3 to 6. I had to wear mine for 30 months. Various things had
been tried to flatten the angry scars and, in the end, Miss Bailie injected
them with steroid to shrink them. She demonstrated this,with my
permission, to a group of students. She told them that the limiting factor
as to how much could be treated was the patient since it was a painful
process so the patients usually called a halt after two or three
injections. After six injections, she laughed and said, “Go on, make me out
a liar!” I replied that I was prepared to put up with the pain to flatten
the scars. She said that she'd put me through enough and would do the rest
another day.
I was started on intermittent self catheterisation in the Burns Unit as my
bladder was atonic (muscle not contracting), was swelled to nearly three
times its proper size and not emptying properly. This caused bleeding and I
had several haemorrhages in quantity resulting in the emergency insertion
of a suprapubic catheter (a catheter inserted into the bladder through an
incision in the abdomen and held in place by the catheter balloon inflated
in the bladder) This was done in the ward clinic and is supposed to be a
simple 10 minute procedure under local anaesthetic, although some surgeons
carry it out in theatre under a general anaesthetic. Oh! how I wished my
consultant had done that. He asked his registrar to do the procedure,
saying to him that he’d leave him to it as it was so simple. He
subsequently apologised to both the registrar and to me for that comment!
The registrar cleaned my abdomen with antiseptic, draped it with sterile
towels, then injected lidocaine local anaesthetic where he was going to
insert the trocar – the cutting device designed to cut through the skin and
muscle and into the bladder to insert the catheter. This was to allow time
for the anaesthetic to take effect. He then tried to insert a normal latex
urinary catheter into my bladder to inflate it with saline so that he would
know when he was in the bladder because the saline would start to flow and
he wouldn’t punch right through with the trocar. The catheter merely
folded up inside my urethra. After several attempts, he bleeped the
consultant to come. He likewise had no success and so collected a set of
sounds – curved metal rods. The problem was that my prostate was blocked
with scar tissue so he literally had to force his way through the scarring
using these metal rods. In the meantime, I was holding onto the couch for
grim death trying hard not to scream with the pain! Having got a way
through, he still couldn’t pass the rubber catheter, so sent the registrar
to my bedside to get my stock of rigid pvc catheters, one of which he
eventually managed to pass into my bladder. My bladder was inflated with
the saline and the hole was punched, followed by insertion of the catheter.
That night, I completely obstructed due to a blood clot formed in the
catheter. One of the nurses was asked to flush my catheter through with
saline to free the clot. I remember this well because this was her last
night before she took maternity leave and was very pregnant. She found it
difficult to bend over to perform the procedure, but I was so grateful when
the clot shifted and my overstretched bladder could empty.
There were further problems including the hospital used an all silicone
catheter on me at one point. These should never be used for suprapubic
catheters because the balloon on the catheter doesn’t deflate fully so is
very difficult to withdraw. My district nurse attempted a catheter change
(the nurses came every nine weeks to change the catheter – infection risk
is lower if this is done at home rather than in hospital – what a
condemnation of hospital cleanliness!) She rang the hospital and arranged
for me to go straight over there. The out patient urology sister applied
some Instillagel (lidocaine, lubricant and antiseptic gel) around the
suprapubic stoma on my abdomen, cut the end off the catheter (bad practice
– she was supposed to suck the water out with a syringe first) and then
just pulled. All of the out patients thought murder must have been being
done from the yell I gave. She torn both bladder muscles and abdominal
muscles as the partly deflated balloon came out. I bled for a week
afterwards until it started to heal leaving me very sore.
One other incident of note was when a catheter balloon burst, leaving part
of the balloon inside me. The emergency night district nurses came to
change the catheter, but I had to go into hospital for a general
anaesthetic whilst my consultant went fishing for the burst piece inside my
bladder. This was a long and complicated process as it was supposed to
happen under general anaesthetic, but the registrar kept trying to arrange
for it to be done without anaesthetic as an out patient procedure. I wrote
to the consultant, but the registrar kept intercepting the letters. In the
end, I phoned during a ward round and insisted on speaking to the
consultant. He was not happy about the interruption to his ward round and
was furious when he heard what I had to say. However, he was furious with
his registrar for ignoring the letter the consultant had written some time
previously stating that all such procedures on me were to be done under GA.
Other events took place including getting mixed up and cancelled by a
consultant who had nothing to do with my case caused by confusion over
patients' names. I received a full and detailed apology with a promise
that procedures would be put in place to stop this happening to anyone
else.
Before my first colo-rectal surgery in 1999, I had suffered from digestive
problems for some years. In fact in 1987 I was admitted to hospital with a
bleed p.r. which resolved without surgical intervention. However the
consultant decided to carry out a whole series of tests to try to find out
what was wrong. He was very thorough as the tests included flexible
gastroscopy and colonoscopy. I attended an out patient appointment with
his registrar who had a junior doctor with him. The registrar started to
show the junior doctor details of my barium X-rays. The junior doctor
muttered to him and the registrar became increasingly annoyed. In
exasperation, he turned to the junior doctor to ask him what the problem
was. The junior doctor said, “Those aren't Mr Gallagher's X-rays: they're
of a female!” The registrar blushed bright red at this point and asked if
I'd had a barium enema, and, receiving an answer in the negative, set about
arranging that.
The barium investigation will for evermore stick in my mind for two
reasons: I had just slipped a disc in my back so was moving and walking as
if on eggshells – twisting and turning for the X-ray was rather awkward,
but the radiographers and radiologist were very patient with me; the other
reason was that the radiographer couldn't get the barium sulphate
suspension into my descending colon and down to my appendix. After several
attempts of increasing the height of the barium enema bag, and virtually
standing me on my head and feet alternately, he decided to give up and I
was asked to wait outside. He consulted with more doctors and came back to
me saying that there were two ways round the problem. One was to give me a
barium meal and a drug to hasten it through my digestive system to follow
it through and the other was a further barium enema. He opted for the
second so I had two barium enemas on the same morning!
The results of all these tests was that I was diagnosed as having irritable
bowel syndrome: the consultant was honest enough to say that he knew that I
had a problem, but the IBS diagnosis meant that he hadn't got a clue what
it was!
In 1993 I had another bleed p.r. which was, this time, diagnosed by barium
enema, as a polyp which was removed by colonoscopy. I suffered from faecal
leakage and diarrhoea with a food transit time of about eight to twelve
hours – rather rapid. I was told that I had no trace of diverticular
disease, however, and didn't suffer from any form of IBD either. The
second was right; the first definitely wasn't!
On New Year’s Eve 1999, I had bad stomach ache. I’d had this before, but
each time, I’d gone to bed, managed to get some sleep and woke better.
Despite it being New Year’s Eve, I went to bed early to try to sleep, but
the pain got worse and worse. Just after midnight (what a start to a New
Year!) I woke my wife as I was doubled up with the pain. She decided to
ring for an ambulance for me – bad move! Around New Year, the ambulance
service is rushed off its feet with drunks having fallen and knocked
themselves unconscious. Hence it took nearly two hours for the ambulance
to arrive. When I arrived at A&E (ER), I was put on a trolley (gurney),
triaged by a nurse who obviously hadn't listened to a word I said (I told
him I hadn't been drinking or over-eating, but was still classified as
non-urgent – can wait for hours) and wheeled to a corridor some distance
from A&E to join many other people lying on trolleys awaiting their turn.
My poor wife had to stand beside by trolley until a kind nurse brought her
a chair. As I lay there waiting, I was getting worse and worse. I had
pains of the type I'd imagine that a person gets with a heart attack – pain
in my left arm radiating up my neck, and I was finding it impossible to
take anything other than very small gasps of air. There were no nurses
coming out to check on us to see if we needed reclassifying and Ann, my
wife, didn't want to leave me.
Suddenly, a consultant appeared in the corridor, turned to me, saying to
the nurse next to him, “I'll take that person next”, pointing to me. The
nurse demurred, saying, “There are far more seriously ill patients to be
seen before him: he's low priority.” The consultant repeated his request,
then, after the nurse argued with him again, solved the issue by taking the
end of my trolley and wheeling it himself into A&E into a cubicle. There
he rapidly diagnosed peritonitis, saying that the breathing and heart
problems were caused by a huge bubble of gas under my diaphragm which was
compressing both my lungs and my heart; the former causing the breathing
problems as I couldn't expand my lungs anything like normally and the
latter pressure on my heart causing the heart attack type symptoms. He
sent me for an X-ray which confirmed his provisional diagnosis, showing the
huge bubble of gas. The surgeons were sent for: when they looked at the
X-rays, my immediate transfer to a ward to be prepared for surgery was
arranged.
I went back to A&E in May because the convex flange had cut into my stoma
and made it bleed a lot. It was the same consultant as January. When he
saw me, his first words rather surprised me. “Are you a Christian?” My
surprised reply was, “By God’s good grace, I try to be.” He answered, “I
thought so! I felt God calling me and he directed me to you. If I hadn’t
come to you when I did, you would be dead now.” Quite a humbling comment.

On the ward, my suprapubic catheter leg bag was replaced by a theatre bag
which allowed careful measuring of urine output, I was changed into a gown,
wrist bands put on my wrists and a trolley arrived to take me to theatre
(OR). Just as I was about to be taken down to the theatre, the surgeon
appeared to say that my surgery had been postponed as there had been a
stabbing which had taken precedence in the theatre (being New Year's Day,
there was only one theatre open). He did assure me that I was next no
matter what came through the doors of A&E. I was taken down to theatre
about an hour later, in a great deal of pain and discomfort, only able to
breathe in very short rapid breaths.

Here I should explain a difference between UK and USA practice: in the UK,
the patient is usually anaesthetised in a separate anteroom adjacent to the
theatre. This has three purposes: the patient is not so worried at the
site of the theatre with all the equipment; the anaesthetist, being in a
smaller room with plenty of storage all around, has all he or she (in this
case) needs to anaesthetise the patient; the theatre is cleaned while the
next patient is being prepared – greater throughput in the theatre – so
important in the NHS!

Because I was unprepped for surgery, it was explained that an ODA
(operating department assistant) would press on my throat to prevent me
from regurgitating my stomach contents as I was anaesthetised. She
injected thiopentone as the ODA applied pressure, then paralysed me with
sux while she tried to intubate me with an ETT – endo tracheal tube. I had
had surgery many times before (as you'll see later in the bladder
section!), so expected to be unaware of the passage of time during the
surgery, waking up, from my viewpoint, instantaneously in recovery.
However, I was aware of the passage of time and voices (hearing is the
first sense to recover) and immediately started panicking (well, you would,
wouldn't you!) with my first thought being that I was waking up on the
operating table. As I recovered more, I became aware of lying on my side
with a mask on my face. Opening my eyes, the anaesthetist said to me, “I'm
sorry, Mr Gallagher, but I couldn't get the tube down your throat. I've
called my consultant and she is coming to have another try.” She was a
registrar and her consultant arrived a minute or so after and the whole was
repeated: this time I woke up in recovery, having had the surgery: two
general anaesthetics for the same operation!

I will gloss over the first few days as I was in a very poorly condition,
made worse by the morphine for pain control: these days it is acknowledged
that I have an adverse reaction to morphine and the rest of that family, so
I get pethidine, fentanil or alfentanil instead. I stopped taking the
analgesia because it made me feel so ill, preferring to endure the pain and
discomfort. One night I started hiccuping and did so every ten to fifteen
seconds for eight hours. I got no sleep that night and no-one in the bay
with me (a bay of six beds) got much either, although, thankfully, they
didn't blame me. Eventually, the doctors found a drug which stopped them,
but, by the morning when they had stopped I was exhausted.

Later I developed MRSA which was given to me by a nurse. My wound drain
was a sterile 2 litre urine drainage bag with the nozzle cut off and
sutured into me. The nurse came to remove this, unclipped the sutures,
pulled on the tubing (ouch!) and removed it. She held a small dressing pad
to the open abdominal wound to soak up any leakage. When that rapidly
soaked through, she picked up the counterpane from the bed, covered with
dust and MRSA spores, to hold against my open wound. No surprise then when
my abdominal incision became infected and started to split open in places.
I was discharged after two weeks in hospital, home overnight and sent back
in the next day by my furious GP who was annoyed that I'd been sent home
with untreated MRSA and, even worse, neither the GP nor the district
nursing service (home nursing) had been told. She only found out when she
rang the hospital's labs for the results of wound swabs. The reason my
wife phoned the GP was that I was running a temperature of 40.8oC. I was
back in hospital for another two weeks receiving iv. antibiotics. This,
together with the erythromycin incident from 1995, was the start of the
large quantities of iv. antibiotics I received through hands, arms and feet
which ruined my peripheral veins, meaning that I cannot be peripherally
cannulated. Even if a cannula is got in, it will tissue immediately
anyway. One doctor was nicknamed '7 Mueller' by the nurse and me. This
JHO took, on average, seven cannulas before he would get one to work (for a
maximum of 20 hours even back then). After his first effort, he always
brought a box of cannulas with him., On one memorable occasion, he had to
ask for a second box as he'd wasted the first ten. On that occasion, it
took 13 attempts to get a working one.

Not strictly in chornological order, but cannula related, I explained in
2002 to a consultant anaesthetist that I was difficult to cannulate. He
looked at my hands and arms and said, “Rubbish. They're fine. I'll have
no problems at all!” I was anaesthetised and recovered in theatre (because
of the MRSA infection). He inserted a cannula in the back of my right hand
and said, “Look, I told you I'd have no problems!” I simply said, “You
haven't flushed it yet!” He did and it tissued immediately. “Oh dear!
Never mind, I'll breathe you down on sevo and get a line in once you're
asleep. The gas with dilate your veins and Ill have no problems getting a
line in you.”I woke to the sound of gentle laughter from the theatre nurses
and ODAs. I had nine lumps of cotton wool taped to hands and arms where
he'd tried, and failed, to insert a cannula before finally getting one to
work.

I was taught how to care for my colostomy by the stoma nurse who only
started teaching me when I was well enough to take an interest. Bear in
mind that I had emergency surgery, so the normal pre-operative counselling
hadn't taken place. In fact, the only counselling I'd had was the surgeon
just before the operation saying to me, “You may wake up with a colostomy.”
That was it!

At first, the nursing staff dealt with my colostomy and I didn’t want to be
bothered with it. Later the stoma care nurse came to see me to discuss
what I had had done and to encourage me to start coping with my own
colostomy. At first, it was rather swollen from the operation, but it soon
began to shrink down and wasn’t too distressing to look at or to deal with.
Gradually, I became proficient in dealing with my colostomy and became
self-caring.

The worst part, I suppose, of the procedure is that the gastrointestinal
system doesn’t start working for a few days, so drinking is impossible at
first. The nursing staff helped with mouth washes and swabs to keep the
inside of my mouth moist. Eventually, the first few sips of water were
allowed and this was heaven! As this was tolerated, gradually over the
next few days, fluid intake was increased with the introduction of ‘solid’
food like ice cream or ground rice pudding. Eventually, a low fibre diet
(post operative) was started. Once fluids were being tolerated, the tube
into the stomach was removed. When the wound drain stops draining, this
was removed. A dry dressing was placed over the drain site and this
closes over quite quickly. I wish that I could have said the same of the
main incision!

After ten days, the clips or staples were removed. To my surprise, this
was a painless process and less fuss than having sutures removed. I was
discharged home with the district nurse coming to dress the wounds, as
necessary. However, neither the district nurses nor I had been told that I
had MRSA and I was running a high temperature. The following day my GP
came to see me, took one look at me and sent me straight back again! I was
isolated for a further two weeks. During this time, it was discovered that
I had an abscess behind my bladder so I was taken down to have this drained
by ultrasound guided needle drainage. The doctor anaesthetised a small
area on the skin of my abdomen and then inserted this long hollow needle
through that area. That didn't hurt, but poking it around inside me
certainly did! In fact, one of the nurses held my hand because I was in so
much distress and discomfort. After the doctor had made three attempts to
drain the abscess, I whispered to the nurse that I would like her to tell
the doctor for me that I couldn't stand any more. She said she'd gladly
tell him. The doctor came back after examining the scans again and told me
that he wasn't going to put me through any more as he decided that I'd had
enough! He ordered that I should receive 30 minute obs on return to my
isolation room on the ward in case he had accidentally perforated my
femoral artery. The nurses did the first observation and then just
abandoned me, failing to do the rest. Fortunately my femoral artery had
not been damaged, but claiming that they were too busy to do these
essential observations is just not acceptable: when a doctor orders this,
it must be done.

At this time, I still had my suprapubic catheter which, one night, became
detached so I ended up very wet. I got up, washed myself and changed into
dry night clothes then rang for a nurse. I explained what had happened so
the nurse fetched clean sheets. However, she used the wet sheets to wipe
the mattress over, leaving it urine covered. I requested, politely, that
she wash the mattress over as it would have started to smell by morning.
She did this will ill grace and then, to teach me not to bother her,
deliberately did not wipe the mattress dry, but remade the bed causing the
bottom sheet to be wet all night. It was either sleep on this or not
sleep, buy this was another of many examples of poor care on this ward, not
all of which I have recorded here.

During this stay, my younger daughter was at Nottingham City Hospital
receiving chemotherapy and so was neutropenic and highly at risk of getting
my MRSA infection. My wife had asked about this and was told that it would
be safe if she visited my daughter first and then me, showering and
changing all her clothes afterwards. She was verbally abused by one of the
male nurses who criticised her for not visiting me often enough!

I returned to that ward twice again in the space of a few weeks with
pseudo-obstruction or paralytic ileus – a problem that still recurs from
time to time even now. The consultant had told me that I needed to be in
hospital as I dehydrated rapidly even then, so needed iv. fluids and bed
rest. However, on the second occasion the nurse who had given me the MRSA
told me off in a very unpleasant manner for wasting their time! She told
me that I should have taken a paracetamol, gone to bed and stayed at home.
I pointed out to her that the consultant had said that I needed to be
admitted, so she made a depreciating noise and flounced off. I rate her as
the worse nurse I have ever had the misfortune to encounter. I realise
that I had probably been a very demanding patient after the emergency
laparotomy and Hartman's Procedure, but I was extremely ill at the time and
feeling absolutely wretched.

There was stool left in my rectal stump, so this needed to be passed so
that the rectum was emptied. The district nurses had to come to administer
several enemas before my stump was empty: the stool inside had hardened as
left me with a feeling that I needed to ‘go’ all the time. The reason for
the stool being there was because this was emergency surgery, so I hadn’t
been prepared first with bowel cleansing solutions or washouts.

Reversal was June 1999. As part of the preparation for surgery, I was
given two bottles of Fleet Phospho-soda – one at breakfast time, the other
at lunch time. I was given a third bottle to drink the following morning
as I still hadn't been properly cleaned through. I spent most of the time
in the toilet as the pouch filled up almost as soon as I'd emptied it.
Also my rectal stump needed washing out. That was a real laugh!

In the ‘good old days’ of nursing, the rectal washout would have been
simple - a Higginson’s enema syringe or a douche can and tubing. (‘High hot
and soapy as my district nurse put it) Unfortunately, the ‘modern’ hospital
has abandoned such equipment as antiquated. Hence the poor sister who had
been called upon to perform this washout just had a rectal catheter and an
ordinary leg catheter bag which she’d filled with warm water.
Unfortunately, there was no way of connecting the two together. In the end,
I was able to help. We pulled the non-return valve out of one of my
catheter night bags so that the tubing would connect to the rectal catheter
and a hole was made in the bottom of the bag for it to be filled and used
upside down.

The student nurse assisting the sister covered the bed in piles of sheets
and I was advised to remove all of my clothes. Decently covered, lying on
my left side with my knees drawn up, the rectal catheter was inserted by
the sister whilst the student nurse held the catheter bag as high as
possible. The liquid stopped flowing when my rectum was full and, with the
sister holding the catheter in place with her gloved hand, she told me to
relax and let it flow out. It did - all over the bed and floor. As fast as
it was coming out, the nurses were putting more in. We were all laughing at
the wonders of modem medicine. It may be old fashioned, but bring back the
good old bucket, funnel, jug and rubber tubing. At least it worked!

I spent some time in ITU after the operation, having begged to be allowed
to stay an extra day in hospital since, on the planned day of surgery,
there was no ITU bed available. I was told that I should go home and be
called back again, but, in discussion with the anaesthetist, he admitted
that the same might well happen again. I pointed out that I really didn't
want to go through yet another bowel prep, get into my gown, rings taped
for theatre, only to be told that it was cancelled. He relented and said
that they'd try again the next day. Fortunately there was an ITU bed so
the surgery went ahead. I spent 24 hours in ITU during which time I had a
central line inserted because I'd had cardiac arrhythmia in theatre (rapid
and uneven pulse) which, whilst responding to increasingly large doses of
adenosine, the usual treatment, did not stop. In ITU, after the central
line was in, I was given amiodarone which stopped the arrhythmia and
potassium chloride as my potassium levels were low, probably because of all
the purging before the surgery.

Recovery went smoothly until the day of my discharge (literally!). I was
sitting, eating my lunch to go home afterwards, when I felt damp down
around my wound. I was sitting in a puddle of golden yellow fluid which
was leaking from my incision. It was MRSA infection. This required
dressing every four hours at first as it was leaking so much. The decision
was taken not to administer antibiotics (a poor choice I feel to this day)
and to allow me to heal and fight the infection myself. Once I could keep
a dressing on for 24 hours, I was sent home with the district nurses coming
every day to change dressings. The wound developed sinuses (under the skin
tunnels) which the nurses inserted probes into to find out how deep they
were and whether they were healing. In all, the nurses came for ten weeks
(I was discharged from hospital one week post surgery) before my wound
healed. At the post operative clinic, with my abdomen looking like a
relief map of the Rocky Mountains because the MRSA had dissolves fat and
skin tissues, my consultant looked at it, thought for a moment, then
remarked, “Mr Gallagher, it's a good job you don't wear a bikini!”

I regained continence immediately, but was very unhappy. Passing stool was
very, very painful to the extent that I nearly fainted from the pain on
several occasions. My consultant carried out an EUA a few months later
(examination under general anaesthetic) and several tests which all pointed
to problems, but with no conclusive evidence of what the problem was. The
following year, I was admitted to hospital for yet another obstruction in
the middle of January 2000 and was in for ten days, followed by another
admission of four days at the end of January for the same problem.

In March 2000, I was again admitted with obstruction, arriving at A&E just
after midnight on the Friday night. I was in a great deal of pain and 'my'
nurse in A&E stopped a junior doctor before I was examined to ask for pain
relief for me while I waited to be seen. The JHO agreed immediately after
looking at me so I was extremely grateful for the pethidine I received
which helped a little. Various tests were done on the Friday and Saturday
morning, including an unprepared barium enema where I wasn't purged to
clear my bowel before hand.

On the Saturday evening at 7.15 pm, despite the regular injections of
pethidine I was receiving, I was in agonies, so I asked a nurse if I could
see a doctor for increased pain control. She agreed and, at 7.20 the JHO
arrived. He took one look at me, then went to call the on call colo-rectal
surgeon. He arrived at 7.30 and, by 8.00 I was anaesthetised by the
Professor of Anaesthetics who had been called from home because of my
difficult intubation and opened up. I was told that I had toxic megacolon,
needed immediate surgery and would wake with an ileostomy. I insisted on
writing on the consent form that I wanted a 1” spout on my ileostomy to his
great amusement. He commented that he was surprised that I could think
about a thing like that when I was in so much pain and was so ill. My
response was that, since I was going to end up with an ileostomy, I wanted
one which would work properly. I got just that, thank you!

He performed a sub-total colectomy and ileostomy which is the 'gold
standard' for such a condition, leaving me with a rectal stump. My colon
was found to be gangrenous – literally dead and rotting – with the cause
suggested to be due to the excessive number of nerve endings in my colon
muscle wall which had caused the very fast transit time as well as the
chronic diarrhoea. My colon had literally used itself to death.

During my recovery period, whilst on pethidine PCA, the syringe had just
been refilled. I vomited what looked like, to me, coffee grounds. I
called a nurse to ask for assistance. I also requested that she save a
sample as I knew the doctor would wish to see it. All of the bedding and
my gown needed changing. She removed the syringe from the driver unit and
was about to push it, plunger first, through the sleeve of my gown.
Unfortunately, she had not closed the stop cok on the line so that, if she
had caught the plunger on my sleeve, she would have rapidly injected the
whole contents which would then have stopped me breathing. Fortunately, I
spotted this and stopped her before she could do this. When the doctor
came to see me, his first request was to see a sample of the vomit. The
nurse told him that she had thrown it all away, despite my asking her to
save a sample. This is hardly what one would expect from a long
experienced RGN.

Due to my abdominal surgery, my bladder was stuck to other organs, was a
strange shape and had a greatly reduced in capacity so that the catheter
tip rubbed very painfully causing bladder spasm. As a result of this, my
urologist decided to perform a partial pelvic clearance with formation of
an ileal conduit on the site of my former colostomy (so it is left sided
instead of the usual right - my ileostomy 'bagged' its place there first!)
I did discuss having a total pelvic clearance, removing my rectal stump as
well, but that was too risky as my rectal stump problems are benign and not
worth the risk of morbidity associated with the rectal removal.

Hospital admission was scheduled for 15 December with surgery on 17
December which meant that I would be in hospital over Christmas with
discharge, assuming no complications, around the new year. The infection
control nurse at the hospital organised for the district nurses to do a
final screen on Monday 10 December so that my actual status would be known
before my admission. Strangely enough, I was due to have a catheter change
on 17 December, so that worked out quite well.
On admission on Saturday 15 December, I was on clear fluids only to wash
out my digestive system. Laxatives, the normal bowel preparation for this
operation, cause severe dehydration and electrolyte imbalance for those
with an ileostomy. I was put on an i.v. overnight on the Sunday night and
was nil by mouth from 06.00 hrs on the Monday morning. On the Saturday
afternoon, the Stoma Care Nurse performed a rectal washout and marked the
stoma site.
Because of my ileostomy, the urostomy, or ileal conduit, had to go on the
left of my abdomen where my old colostomy had been. At about noon on Monday
17 December, I was asked to shower and change into my gown, replacing my
ileostomy pouch with a clear, non-vented one for surgery.
At 13.15 I was taken down to the anaesthetic room where an injection of
midozolam and fentanyl meant that I remember nothing after 13.30 when the
injection was given until I awoke in recovery eight hours or so later.
Unfortunately, I had previously been a grade 3 intubation with bougie. On
this occasion, the bougie kept ending up in my oesophagus rather than my
trachea. An attempt to use a fibre endoscopy to insert the endo-tracheal
tube (ETT) failed due to a 'red out', caused by some bleeding inside my
throat. An epidural tube was inserted in a puncture in my cricco-thyroid
membrane and fed out through my mouth. The ETT still would not pass and so
a naso-gastric tube was passed through my nose into my mouth, the epidural
tube drawn through this into my nose and the armoured ETT then passed over
this through my nose, over my vocal cords and into my trachea. Fortunately,
I was blissfully unaware of this. In future, I am to be considered a Grade
4 intubation which means passing the ETT under local anaesthetic whilst I'm
awake.
The anaesthetist then inserted an epidural for pain control, a central line
in my neck for fluids and pressure monitoring and an arterial line in my
wrist to monitor blood pressure. I was taken to main recovery at about
21.30 and transferred to HDU an hour later.
I was visited in HDU that night by my consultant who said that I had a good
spout (hurray!), and he'd been able to remove both bladder and prostate,
after battling his way through the adhesions. He'd also had to form two
anastomosies (joins in the intestines) as he'd had to remove a section of
ileum which was so stuck with adhesions that it couldn't be freed. His
registrar came and said that he was glad for me that my prostate had gone
as well. The normal way of detecting prostate cancer is urinary flow
problems. Without a bladder, the only way of detecting prostate cancer,
other than a PSA test, would be when it had spread to the bones and was
untreatable: I'm glad my prostate has gone!
In HDU, I discovered that I was wet from a leakage from my new urostomy
pouch. I informed the nurse who changed the pouch for me, as well as
washing me. Changing my gown and all the bedding. Unfortunately she
insisted on not drying my peristomal skin properly before applying the new
flange. I told her that this was necessary, but was brusquely told that
she knew what she was doing and that the flange would stick to damp skin.
Then minutes later, she was changing my pouch again, as well as washing me
and changing both bed and gown. This time she listened to me and dried the
skin first before applying the flange.
I spent two nights in HDU before transfer back to the ward. Unfortunately
my epidural had started to work on one side only rather than right across,
so I was switched to pethidine PCA. In addition, I didn't have the normal
naso-gastric tube as I'd got the ETT up my nose. My digestive system was
having problems restarting at my stomach end and sips of water were making
me feel nauseous. I asked for an naso-gastric tube and the registrar
agreed, on the basis that I'd been there before and would know what would
help. I hate having NG tubes passed and was very sick from a full stomach,
when it was. It is uncomfortable, but it got rid of the worst of the nausea
until my stomach started working with my intestines and I could tolerate
water. Once this happened, the NG tube was removed (hurrah!) And I built up
to free fluids: that first cup of tea was divine. I'd stopped using the PCA
by now and was sore rather than in pain.
The physios got me to do breathing exercises and I was sitting in a chair
by the second day back on the ward, albeit for short periods. I was wearing
the anti-embolus stockings and receiving twice daily heparin injections to
prevent DVT as is normal, but mobilising is the best preventative. I was
walked with a nurse on the ward and managed two shaky laps on my first
attempt. Soon I was walking up the long main corridor to 'Coffee City', a
coffee shop near HDU on the main corridor, to buy food supplies.
Meals were 08.00, 12.00 and 17.00 and, when I was eating again, I had a
snack at about 20.00 hrs, bought from the shop. Once I was on free fluids,
I started the gastric diet, having jelly for breakfast on Christmas Day, my
first solid food for ten days. (Actually, not quite true: my first ‘solid
food’ on Christmas Day was Holy Communion brought to me by the senior
hospital chaplain – that was a very special ‘first meal’) The build-up went
well over a three day period as I progressed to more solid food and my body
accepted it without problems.
I made excellent progress and was discharged on Saturday 29 December.
Normally people stay in at least two weeks post-operatively in the UK, (No
insurance companies wanting people out quickly to save money, but the NHS
tariff system may well put pressure on British Hospitals to discharge early
in the future) but I had done really well. Also I could care for the stoma
anyway. I've still got my stents in place (tubes through the stoma into the
ureters to stop the join between the ureters and the ileal conduit from
scarring over) and these will either drop out over the next few days or be
pulled out in clinic in a couple of week's time.
I was sore: of course, I've had major abdominal surgery with about 30 cm of
incision. However, I was sore rather than in pain and getting better. The
pain I'd had from my catheter and bladder had gone completely including a
'low level' pain that I'd not been aware of until its absence. I felt much
better and don't regret having the surgery (too later now, anyway!). I
won't need to have regular catheter changes and I can care for myself.
After my urostomy surgery, I had hoped that everything would be find and
I'd need no further surgery. Some people are lucky and things go well and
some people are... like me! I developed two problems with my new ileal
conduit. One problem was that, for no apparent reason, it developed a tear
near the skin of my abdomen which wouldn't heal and the stoma itself
prolapsed. For those not familiar with the concept, basically my nice new
stoma of about 2.5 to 3 cm in length (a suitably sized spout to go into my
pouch and to help to prevent leakage and soreness) grew to about 6 or 7 cm.
A visit to my consultant produced the expected outcome - "I'll book you in
for your stoma to be revised. It'll be a few months." (Well, this is the
NHS - what do you expect?)
I was hoping to be operated on before the end of August 2002, but I'd
already been in contact with the hospital's infection control nurse. With
my previous MRSA history, it has been agreed that I should be fully
screened, and treated if necessary, prior to admission, to avoid problems
for me and other patients in the hospital. It should mean that I was nursed
in an open ward, rather than barrier nursed in a side room.
Unfortunately, the screens came back positive for MRSA. MRSA was found in
my nose (again, again!) which is easy to treat with five days' application
of Bactroban ointment, but also in the tear in my ileal conduit. Ointment
can't get into the places where MRSA might be lurking so my consultant had
to consider options. Fortunately, the particular strain of MRSA in my ileal
tear was sensitive to oral antibiotics. I should also add that I'm allergic
to penicillins and cephalosporins which rather limits the choice of
antibiotics which I can be given. In this case, the MRSA was sensitive to
rifampicin (an antibiotic used mainly for tuberculosis and leprosy!) and
doxycycline. After five days of treatment with Bactroban ointment for my
nose, Aquasept whole body wash 'just in case' and the oral antibiotics, my
district nurses screened me again. To my great delight, the swabs came back
negative, so surgery was possible. To prevent the emergence of the MRSA
again, possibly this time resistant to oral antibiotics, it is necessary
for surgery to take place within two weeks of the screen results being
clear (three week window from the actual test date).
I was admitted on Sunday 28 July and taken to theatre in the afternoon of
Monday 29 July. In the anaesthetic room, I had two consultants, Dr John
Curran, Mr Bishop's current anaesthetist, and Dr Fitz Henry, the delightful
consultant who'd had such 'fun' with me at Christmas. She had dropped in to
say 'hello' and also to ask if I minded her junior watching. Dr Curran had
a junior as well and, of course, I said that I didn't mind. Dr Curran
inserted a cannula but then, after discussing with me, decided that
'gassing' me with sevoflurane would be the quickest way of dealing with me.
It saved drawing up lidocaine and propofol to inject to induce anaesthesia.
Sevoflurane has a pleasant 'apple' smell and is very quick acting. I'd been
'gassed' the previous year with my burst suprapubic catheter balloon and
for my right knee arthroscopy. These days, with modern anaesthetics and
being allowed to hold the mask oneself, a few good deep breaths and the
next thing you know, you're waking up in recovery - which is exactly what
happened. A cautious inspection showed a much shorter stoma and no
laparotomy. Mr Bishop, my consultant was hoping that the surgery could be
done from the surface without opening my abdomen up for the fifth time
(emergency laparotomy for peritonitis & Hartmann's procedure [temporary
colostomy], reversal of Hartmann's procedure [removal of temporary
colostomy], emergency laparotomy, sub-total colectomy and formation of
ileostomy for gangrenous colon, and partial pelvic clearance [removal of
bladder and prostate] with formation of ileal conduit). To my delight, I
didn't have an 'NHS zip' [the row of clips in an abdominal wound looks just
like the teeth of a zip, don't you think?], so convalescence should be
fairly rapid.
The surgery was straightforward. The stoma was cut where it joins the
abdomen, 'uncuffed' (it is pulled back on itself like a pullover cuff, or a
roll neck sweater) and straightened out. A suitable length was cut off and
the raw end pulled back over itself and stitched down to the cut edge of
the abdomen. The stitches used were soluble and the stoma was swollen for a
while due to its having been pulled about.
A joy in recovery was finding my recovery nurse was Yasmine who had nursed
me in Lister Ward about two years previously. It's great having a face you
know and a person you can relate to in recovery - modern anaesthetics mean
a very rapid return to consciousness.
I was in my bed in recovery and was soon taken back to the ward. I had a
pethidine PCA for pain control overnight along with a bag of saline and
another of glucose to re-hydrate me, but, by the middle of the night when
the buzzer went to show that the syringe was nearly empty, I decided that I
didn't need any more.
The next day I was up and out of bed having a shower. The cannula had been
removed as it had come almost out during the night. Nurses may only remove
cannulas with the doctor's permission unless, as in my case, they obviously
wouldn't work. The idea of trying to keep one in and working during
recovery is to have venous access in an emergency should the need arise.
When the medical team did its round, I learned that I had yet another
anastomosis! [I had two formed for the ileal conduit: one is normal, but my
second was caused by the need to cut away a piece of ileum so stuck with
adhesions that it couldn't be freed up safely other than by removing it.]
Instead of cutting the stoma where it joins the abdominal skin, the tear
had been opened to raw edges and stitched, but the stoma had been cut
higher up the ileum, a length of ileum removed and then re-stitched back to
the ileum attached to my abdomen. This healed quicker.
The stoma swelled up due to the bruising caused by handling it: this is
normal and expected. A new flange with a larger hole was applied and I
needed to check the flange at least weekly as it shrinks when the district
nurses come to care for me.
Home on the Wednesday morning (always much better than hospital, isn't it?)
To find my wife, bless her, had repainted the bathroom as a surprise for my
return home! The revised stoma is of a much better length. I've still got a
good spout so that it will drain into the pouch rather than over the face
plate. (I've noticed a tendency in America for surgeons to leave the stoma
proud of the skin by less than half a centimetre so convex flanges are
almost the norm - a two to three centimetre spout is much easier to deal
with.)
My stoma nurse arranged a support belt to stop me damaging myself when I
lift before I think. I know I've got a 50 lb weight limit, but habit often
finds you lifting something you've always lifted before without thinking!
I'm liable to incisional hernias due to the number of times I've had my
'NHS zip' so the support belt should help there. Unfortunately my abdominal
muscles are weak because of repeated surgery and attempts to build them up
could cause the very hernias I'd wish to avoid, so careful is the
watchword!
Having joked in the past with Ann that at least my heart is sound, my GP
spotted a heart murmur during an examination for another problem/ I was
referred to the cardiologists for investigation. After multiple tests
including echocardiogram and stressed echocardiogram (using a drug to put
the heart under stress) and two seven day ecg tracings I was diagnosed as
having an aortic valve lesion (the valve regurgitates or leaks back into my
heart slightly). Because of this, the anaesthetists were rather wary of
further anaesthetics in case of causing heart problems. However the
cardiologists were later able to reassure them. However, anyone who says
to me, “At least your .... is working properly” is every quickly told to be
quiet!

My rectal stump was left after the subtotal colectomy and ileostomy. It
was 15 cm (6") long and suffered from distal proctitis because it wasn't
used for its old job. I suffered from mucus build-up in the stump and
couldn't 'bear down' to get rid of it as this pushed the tip of my
suprapubic catheter harder into my bladder which hurt even more.
Initially, the district nurses came every three weeks to administer a
Micralax 5 ml enema to help get rid of the mucus. This wasn't very
successful, so was changed to fortnightly using Fleet Phosphate enema (128
ml). This was better for removing mucus, but I was having problems with
bleeding from the stump.
My consultant did an EUA and took biopsies to rule out cancer or other
nasties. He then asked me to try self-administered glycerine suppositories
daily and retain each one for long enough for it to drain without
straining. This could take a couple of hours and the bleeding worsened.
One night, I started passing blood with a vengeance and my wife took me to
the A&E. On arrival, I was sent straight into the main area and spoke to
the triage nurse there, explaining the problem. The look on her face said
it all, really. We could see that she thought that I was exaggerating the
amount of blood and that she thought it was probably only a tiny bleed from
something like piles.
By now, my stump had filled up again painfully and I needed to expel the
blood. I asked for a bedpan and was taken into a cubicle to use it.
Initially she suggested that I went to the toilet, but she fetched the
bedpan when I pointed out to her that she needed to see how much blood I
was passing. When she came back and saw the amount of blood (a half full
bedpan with just blood!), I was transferred straight into Resus and hooked
up to the monitors!
I was admitted to a ward at 4 o'clock in the morning and placed in a side
room because of my previous MRSA infections. I felt sorry for the young
lady in the side room who had to be moved onto the main ward and the people
in the main ward who had their night's sleep disturbed whilst the staff
played 'musical beds'.
In total I lost 2.5 litres of blood over a ten hour period and was given
blood transfusions to get my Hb levels back to a reasonable score.
Obviously the consultant abandoned the self-administered glycerine
suppositories and decided that I should have weekly washouts with 100 ml of
saline using a soft red rubber catheter.
The stoma nurse obtained a rectal washout protocol from the Royal Marsden
Hospital near London (a top cancer hospital) and came to my home to show
the district nurses what to do. I then rewrote the protocol for the nurses,
changing it as appropriate to fit with the actual procedures used. I hoped
that the rectal stump could go, then I wouldn't be dependent on the
district nurses once a week. However, I was told that the risk of dying
would be unacceptably high considering the circumstances, so stump removal
was refused.
One problem with a urostomy is the risk of infection as the valves which
prevent reflux from the bladder up the ureters to the kidneys are lost in
the urostomy surgery. I am very careful to try to avoid infection, but it
isn’t always possible. My first infection was in 2003 when we were on
holiday in Shropshire at a self catering cottage. Whether it was because
of the tap water, the fact that it was a different bathroom which I
couldn’t clean down like the one we’ve got at home, or what, but I
developed a UTI. I was in Marks & Spencers (a British department store
with a cafe and decent disabled toilets) with my wife and daughter (she’s
in a wheelchair with multiple problems) when I noticed that my pouch had a
thick layer of sediment – bacteria – in the bottom. Shortly afterwards I
developed really bad back pain over my kidneys. When we got back to the
cottage, my wife decided that I looked so awful that she’d take me to the
A&E Department at the Royal Shrewsbury Hospital – a hospital which was
awarded no stars for efficiency (out of three and I’d give it zero too!).
After waiting my turn, the doctor asked various questions and went away to
get advice. In the meantime, a nurse was sent in to take a sample from my
pouch. I knew things weren’t right when she had no idea of how to do this
– this is a regional centre for urology! The doctor had telephoned the on
call urology registrar who was too lazy to get the lift down two floors to
see me so diagnosed me at the end of the phone. The A&E doctor was
instructed by the urology registrar to offer me either nitrofurantoin or
trimethoprim and then basically to ‘s*d off’. The A&E doctor said that
much more politely, however. I pointed out that I knew that neither
nitrofurantoin or trimethoprim would be effective and I would need
ciprofloxacin. He told me I couldn’t have that as the registrar had said
nitrofurantoin or trimethoprim and the pharmacy was shut anyway! He
advised my wife that, if I was no better by the morning, she should take me
home to my local hospital which knew me.

The next morning, after taking the trimethoprim, I was far from better,
running a temperature of 40.8 oC with rigor. Ann bundled me into the car
and drove me the 90 miles home with me shaking violently all the way home
and feeling like grim death. I saw my GP who really didn’t want to send me
to hospital so gave me oral ciprofloxacin to take. I tried to convince him
that I should be in hospital, but he insisted that I try oral antibiotics
first. He later apologised and said he should have listened to me – at
least he was honest. The next day, I was no better so my GP arranged for
me to go to the local hospital. There I was put in iv. ciprofloxacin which
eventually cured the infection which, by this time, was septicaemia – blood
poisoning. My colo-rectal surgeon afterwards wrote me a letter confirming
I have short bowel syndrome and should be admitted for iv. antibiotics
initially, even if sent home later with oral antibiotics when the worst of
the infection is treated. Ann had to catch a train back to Shrewsbury as
we’d gone on holiday in two cars to carry us all and Catherine’s
wheelchair, then drive Catherine home.

I complained to Royal Shrewsbury Hospital about my treatment and was sent a
letter written by an A&E consultant and purporting to have been written by
the chief executive to say my case had been ‘investigated’ and the hospital
had done nothing wrong. (the consultant ‘investigated’ his own department
and, of course, found nothing wrong.) I read his letter very carefully and
discovered that he didn’t know what he was talking about. I had been given
the treatment for a simple lower urinary tract infection, which I couldn’t
have since that had been removed two years earlier, whereas I should have
been given ciprofloxacin – what I’d requested – for acute complicated
pyelonephritis – kidney infection. In fact government guidance suggests
that I should have been admitted at least for the initial treatment by
Royal Shrewsbury Hospital. I wrote back pointing out that the consultant
didn’t know what he was talking about and I wanted to go to the next stage
of formal review. The hospital panicked since this counts towards loosing
any stars the following year and asked if I would come to the hospital to
discuss this. I agreed, provided that the hospital paid the travelling
expenses.

At the meeting, it was a different A&E consultant as the first one was in
hospital following an accident. I decided to take control of the meeting
immediately and set out my case. To my amazement, the consultant agreed
fully with everything I’d said and asked for a copy of my documentation
which I’d prepared on how a patient with a urostomy should be treated if
they have a UTI. He said he was going to copy it to all his A&E doctors to
make sure they got it right in future. Later the hospital pharmacy
confirmed that the on call pharmacist would be summoned to provide
appropriate antibiotics in the future. Apart from paying out travel
expenses for that day (with half an afternoon shopping in Shrewsbury thrown
in as the meeting finished quicker than expected because of agreement, the
hospital also paid Ann’s train fare from Nottingham to Shrewsbury to go
back to collect Catherine and her car. I consider that a good result!

Having now got a letter from my colo-rectal consultant saying that I
definitely have short bowel syndrome, it does help in situations such as
that in Shrewsbury. However, I have had another episode of acute
complicated pyelonephritis which required hospitalisation. Before that,
I’d had two or three infections which I’d caught early and had been treated
with ciprofloxacin suspension (to aid absorption because of my short bowel
syndrome), but this was more serious.

I had further EUAs with two occurrences of obstruction – both of which
resolved by administration of a litre of saline to rehydrate me, an iv.
injection of 50mg of cyclizine for the nausea and 100mg of iv. pethidine
for the pain and to relax my ileum. Despite X-rays showing a kink in the
ileum caused by adhesions, the pethidine and cyclizine combination allowed
the ileum to relax and untwist itself without surgical intervention.
I was having the district nurses come weekly to carry out a rectal washout
to get rid of mucus and blood which I couldn’t expel (In the meantime I had
had urostomy surgery which meant that I couldn’t ‘bear down’ – that’s
described in another section). I had been tried on Colifoam to try to
reduce the swelling in the lining of my rectal stump and then Asacol foam
enema to keep that remission without the steroid side effects. It helped,
but the foam built up in my stump and so I needed assistance to get rid of
it. Another problem was that my anal sphincter tightened through lack of
use so that the district nurses couldn’t insert the catheter for the
washouts. I had a couple of EUAs to stretch my sphincter so my surgeon
also asked the district nurses to use an anal dilator each week to keep me
stretched. For various reasons, they stopped doing this, so in April 2004,
I was very ‘tight’ and tried to do it myself. Bad move! The dilator is
white nylon, cone shaped with a tiny rolled rim and nothing to grip it
with. I lubricated it with KY jelly and tried to insert it. It went in a
little but I felt resistance. Obviously I pushed harder when suddenly the
muscle stretched or torn and it went in rapidly – all the way with the rim
being useless to stop this happening. My surgeon has complained to the
manufacturers about the design asking for a larger rim to prevent this (I
am not the only person who has had this problem) and a loop or something on
the back to grab hold of. I tried everything I could think of to get it
out, but it got stuck each time with increasing amounts of bleeding. I
went to A&E where a junior doctor spent a very uncomfortable half hour
trying to remove it, but failing since there was nothing for the forceps to
grip on. In the end, he stood up, saying, “I’m afraid we’re going to have
to admit you to have this done under general anaesthetic.”
Once anaesthetised later that day, the surgeons were able to remove it,
leaving me feeling extremely embarrassed at the whole affair. Because of
my other medical problems (sleep apnoea, asthma, paroxysmal
supraventricular tachycardia and an aortic valve lesion) I was kept in
overnight and allowed to go home the next morning. This was appalling! I
had driven myself to the hospital, which the nursing staff knew, and was
being allowed to drive home 15 hours after a general anaesthetic. No one
had done any discharge planning when they would have found that my wife was
in Sussex to help my mother-in-law as my brother-in-law was in hospital and
he usually cared for her. Hospital protocols state that a patient must not
be allowed to drive until at least 24 hours are elapsed since recovery and
certainly not to an empty house within 24 hours of a general anaesthetic!
I was back again at the hospital in June 2004. I was at a church meeting,
feeling fine, as I’d been asked to give a short talk on ‘Science &
Christianity’. Suddenly my ileostomy pouch felt full, so I went to empty
it. It was full of fluid. Five minutes later, the same thing happened,
with nausea as well. I slipped out of the meeting after emptying again and
drove home, fortunately not far. Rushing inside, I emptied again so,
realising that I was dehydrating rapidly, took my ready packed hospital
case to the front door (with the number of emergency admissions I’ve had,
you can perhaps understand why I have a case packed! Why is it almost
always in the middle of the night when these things happen?) I telephoned
999 for an ambulance, explaining the problem. (In the UK, 999 is the
number of the emergency service – easier to dial as you just have to keep
pressing the same number! The ambulance service is separate from the fire
service and is very much larger.) The ambulance, on this occasion, arrived
swiftly. The paramedic listened to the problem and decided to get a line
in with a litre of saline immediately before taking me to hospital. On
arrival at hospital, I needed help from a nurse to empty again and this was
a regular occurrence every ten to fifteen minutes until I was literally
empty! The doctor decided to set up another line so, two hours after my
pouch first filled, I was lying in A&E with a drip running in each arm.
Discussions took place as to whether I was medical or surgical, deciding on
the former, so the decision was taken to transfer me to Nottingham’s other
hospital. The Queen’s Medical Centre has the A&E, also having the
colo-rectal department, whereas Nottingham City Hospital has urology with
no A&E, being a district general hospital.

A further ambulance was summoned to transfer me the seven miles to the
other hospital where I was put in splendid isolation in a side room in the
Medical Assessment Unit. In the morning I was transferred to the
Nightingale Ward, which is the isolation unit with only 13 beds. I was
wheeled through the double doors into my single room with en suite
facilities and air conditioning since none of the windows would open to
keep any infection inside the room. The double doors were bolted shut with
staff then entering and leaving by an ‘air lock’ style arrangement through
an adjacent side room where they could put on and take off plastic aprons
and nitrile gloves (no latex!) as well as hand washing. I spent 4 days in
isolation during which, in the first 48 hours, the fluid balance showed
that everything I drank ended up in my ileostomy and everything that went
in by iv. ended up going through my urostomy. The message here is that we
ileostomists can dehydrate with frightening rapidity and so need to go to
hospital for iv. rehydration soonest. It was put down to a viral
gastro-enteritis bug which I’d picked up from somewhere. I remember little
of the ambulance ride, the time in A&E and the stay in the MAU over the
first night: I gather I was rather poorly!
The next incident was in July, almost exactly one month later: this time
the ambulance service did not cover itself in glory – far from it. My wife
was back from Sussex, but was sleeping with our daughter who’d fallen from
a taxi while she struggled to get into her wheelchair. She’d spent a night
in hospital with bruising and in a lot of pain, so my wife, Ann, had
decided to spend at least one night with her to make sure she was all
right. My rectal stump was a real pain – literally! I also still kept
passing bloody mucus, or whole blood at times. It was late evening again
(proving my point about why is it nearly always night time when things go
wrong!). I went to the toilet because my stump was sending signals that it
needed emptying urgently. Whole bright red blood started pouring from me.
I rushed into the bedroom to grab a telephone and then rushed back to the
toilet for more blood to pour from me. I spoke to the ambulance control
officer, explaining the problem in detail. Twenty-five minutes later, and
still no ambulance, I telephoned again, saying that, if the ambulance
didn’t come soon, it would be too late, as I’d have bled to death.
Forty-five minutes later, and still no ambulance, I rang again to be told
that it had been dispatched and was on its way. The ambulance actually
arrived 46 minutes after my first call. I know this because I have friends
at the ambulance service since I am a patient representative form them on
various consultative groups. I spoke to the Operations Director who
checked the tapes (all calls are taped and the response times are also
recorded) and then came back to me about this. I was logged as a ‘Category
B – non life threatening call’ instead of, as it should have been,
‘Category A – life threatening’ which should have had a response time from
call to my door of 8 minutes. Further enquiries revealed that the category
software was incorrect, so a national upgrade has been carried out to
switch serious bleeding into the right category. However, the director had
the operators who took my calls literally on the carpet in front of him
whiles he severely reprimanded them. Whilst the software indicates the
category of the call, operators can upgrade at their discretion and, in his
view, the second operator very definitely should have upgraded the call.
When the ambulance arrived, the paramedic looked at the toilet filled with
bright red whole blood and huge clots, then rushed me out to the ambulance
where my trousers were removed and I was placed on incontinence pads. He
tried to get a line in, but I was so shut down that my peripheral veins had
collapsed. He then decided to ‘scoop and run’ – get me to hospital as
quickly as possible. On arrival at the hospital, two nurses were standing
to wait for another casualty in a different ambulance. The paramedic
grabbed one, saying, “I don’t care what you’re waiting for, but this
patient needs help now!” She came in with the two ambulance crew wheeling
me into Resus. There things became rather confused, from my point of view.
I had X-rays in Resus whilst on the trolley: two nurses were in constant
attendance, changing the inco pads and wiping me clean as the pads became
soaked with blood. I had a cannula put in my right external jugular in my
neck with saline run in so fast that I had to covered with warmed blankets
to reduce my shivering. Once my peripheral veins filled a little, another
line was put in with more saline going full bore, requiring yet more warmed
blankets. In all, I had three litres of saline and half a litre of
gelofusin in A&E before transfer to theatre. To get blood from me, the
doctor ended up having to carry out a femoral artery puncture – not the
most comfortable of procedures! – in order to obtain a sample.
At one point, everything started to loose its colour – a weird sensation.
It was like slowly turning down the colour control on the television until
everything was grey. Then things started to go dark as I collapsed into
unconsciousness. My thought was, “If I die now, my wife will kill me!”
What stupid things we think of at such times. I knew my wife would be so
upset that she hadn’t had the chance to say ‘good bye’ to me.
The registrar came down from theatre to see me. He asked that I be rolled
on my side so he could examine me. Seeing the amount of blood, he asked
whether this was the amount since I’d been collected by ambulance or since
I arrived in A&E? To his horror, he was told that I’d been rolled and
fresh pads put in every few minutes. He departed to prepare in theatre for
me whilst the anaesthetists were summoned. The doctor who had got blood to
type and cross match was told by me that I am O Rhesus D positive. He
asked how I knew, so I told him I’d been a blood donor with 54 pints to my
credit, so very definitely knew my blood group! He thanked me, saying that
he just had to cross match as it would save valuable time. The
anaesthetists came, looked at my notes (three very thick folders) and one
said that she gathered I was difficult with airway problems. I asked her
to look in a pocket on my case where I keep a file for anaesthetists with
details of previous anaesthetics and letters from the anaesthetists. She
opened the file, looked through and said to her colleagues, “This is great!
We now know exactly what works!”
I was taken up to theatre with the three anaesthetists with me and the
crash trolley to hand as well. In the anaesthetic room, I was given a
sedative to calm me – I was grateful for that - before I was breathed down
with a mask induction. To my surprise, I woke in recovery and was then
transferred into the High Dependency Unit where I spent some time. In all,
in theatre, I’d been given four units of blood.
To everyone’s amazement, I was up and out on the fifth day after my
admission. This was the Saturday morning. By Sunday evening, my
temperature was oscillating right up to 40oC, so my wife called the
emergency doctor service. After one hour, we received a call to say that
they were so busy, the doctor felt that I should get to hospital by
ambulance. My wife rang for an ambulance and, one hour later, still no
ambulance, so she decided to rig them up to cancel and take me herself.
She’d not wanted to do that in case I collapsed in the car on the way. On
arrival at the A&E department, I explained to the young girl at the
reception desk that I’d come out of hospital the previous day (showing her
my discharge form), that I was still anaemic and was feeling extremely
dizzy and unwell. I expected to be offered a trolley to lie on, but, no, I
was told to go to sit in the waiting area to be called by the triage nurse.
Twice my wife went back as I rapidly became more and more dizzy, with her
being told each time that I’d have to wait my turn and it wouldn’t be long.
As she came back the second time, with other patients waiting muttering to
each other that they thought I should be seen immediately, I did faint.
What stopped me hitting my head on the floor is the other people waiting
who grabbed me and started yelling very loudly for help (Ann filled some of
this in for me later). A group of nurses ran out of A&E with a trolley.
One of the nurses saw me, exclaiming, “Oh no! It’s the gentleman who came
in early this week with a serious haemorrhage. I hope he’s not bleeding
again!” I was lifted onto the trolley as my wife thanked those who’d
helped. I was taken immediately into Resus where a doctor saw to me
immediately. What happened is a real blur, but I do remember him taking
blood from my brachial artery and having several goes before he could get a
line in for some saline. I was taken up to one of the colo-rectal surgical
wards and put in iv. ciprofloxacin and metronidazole. Two days later that
was changed for one dose of gentamicin every 24 hours since it was
discovered that I had septicaemia which was responsive to gentamicin and
not ciprofloxacin and metronidazole (Cipro and Flagyl may be more familiar
names in the USA – in the UK, we use the generic name of the drug rather
than one of the brand names).
Whilst on the ward, I was very unwell, so was put on continuous monitoring
with the CCOT nurses checking me regularly, apart from the ward staff. The
CCOT nurses are part of the Critical Care Outreach Team which enables ill
patients to be cared for safely on a ward rather than in high dependency or
intensive care.
I had a CT scan to try to find the source of the infection. This was
misread as showing a dilated kidney and ureters, which would be a urology
problem connected with my urostomy, so I was shipped off to the other
hospital again by ambulance. There I was X–rayed prior to having an
excreting urogram to check for problems, However the basic X-ray showed no
problems with either kidney and close inspection of the CT scan from the
other hospital showed two kidneys close enough the same size and ureters
likewise. In other words, my kidneys were not the source of the infection.
All in all, I spent a further ten days in hospital. I was told by the
clinical nurse specialist for colo-rectal care that the bled had been
caused by an ulcer in my rectal stump which had perforated an artery and I
was very firmly told that the team in A&E hadn’t expected me to make it
through theatre.
In September I had another EUA for the state of my rectal stump to be
checked on: the first planned admission in 2004! This showed my stump to
be ischaemic – a very rare condition with only 39 previous cases of
ischaemic proctitis reported on the internet. I begged and pleaded with my
consultant to remove the stump, but he still refused. In November I had
another bleed, but much less serious, and was kept in for a couple of days
to make sure it had resolved. In December on a Saturday night (Again!) I
developed an obstruction, so my wife took me to A&E. because it was a
Saturday night (drunken yobbos everywhere) the staff remove the chairs from
A&E as they can be used as weapons against the staff by the drunks; what an
awful world this is becoming. Ann had to stand with me for seven hours
while I was sorted. It was the same doctor who’d dealt with me for the
same problem 18 months previously. He remembered me (once seen, never
forgotten?) and asked what he’d done last time. I told him, he said it
sounded fine and proceeded to do the same: insert a cannula [getting
steadily more difficult to impossible], put up a litre of saline to
rehydrate me, 50mg of cyclizine for the nausea and 100 mg pethidine. By the
time I was sent for an X-ray, everything had started to untwist: what
relief!
I again saw my consultant and pleaded the case for removal of my stump,
taking with me articles from USA hospitals saying that surgery was the only
option for ischaemic proctitis. He relented and agreed to do the
procedure. I was required to see his anaesthetist who would have the final
say as to whether surgery would go ahead. He tried to frighten me with
statistics showing the risk of surgery, so I collected a different set of
statistics which were much more favourable, and held in higher regard than
the scoring system he’d used! I convinced him by pointing out that either
risk scoring system doubled the risk if the surgery was done as an
emergency.
He decided that I would need an intensive care bed for at least one night,
with a high dependency bed just in case I didn’t need the ITU bed, as well
as six units of blood. No ITU bed, no surgery. I was admitted the day
before and, come the morning with just me as the consultant’s theatre list,
the trolley came to take me to theatre. There was an ITU bed!
Anaesthetising me took two consultant anaesthetists one hour fifty minutes
to insert the epidural (awake) the arterial line (awake), awake fibre
optic intubation via my nose and, once anaesthetised, a central line.
Awake fibre optic intubation is not fun, but I was sedated with midozolam
so can’t remember much about it. The theatre nurse came to me in recovery
to say how co-operative I’d been and what an excellent patient I was. The
anaesthetist did the same. I had to confess to them that I didn’t remember
it! I suppose that, wanting the surgery as much as I did, I was willing to
put up with nearly anything to get it done.
I also had two consultant surgeons: one worked through my abdomen and the
other between my legs. The NHS system is such that the second surgeon did
his part as a favour to the other! The colo-rectal team works very closely
together and they assist each other as needed. My stump, internally, I was
told, looked like red veined white marble instead of the dusky red-purple
it should have been. The histopathology came back as both ischaemic (which
we already knew) and necrotic. Next stage is gangrenous and emergency
surgery. My consultant did admit he was glad I’d bullied him into
operating when he did. Oh yes, I stayed a night in HDU as the bed was
booked anyway and I didn’t need a single unit of the six cross matched and
saved units available. Surgery was simpler than expected.
Pain relief was in the form of an epidural and a pethidine PCA. The reason
for the latter was that I’d been opened up from groin to diaphragm and the
epidural didn’t quite provide enough cover for pain control. With the two
together, I was effectively pain free, apart from when I was sick! Pain
relief for home was fentanyl patches to provide a background level of pain
relief with pethidine and cyclizine (the latter in case of nausea) tablets
to take if I needed more. I tended to take a pethidine tablet last thing
at night with a cyclizine as well as I would become sore by the evening and
the combination enabled me to get a good night’s sleep.
From previous experience of abdominal surgery, I knew that the best way to
recover was to set myself targets. As before, the physiotherapist came
once and decided that I would push myself probably harder than she would,
so I was allowed to carry on at my own pace. My first target was to walk
up and down the ward once, then twice, then down to the main entrance to
the shop there to buy myself a paper. Unfortunately things didn’t go
completely smoothly. As I started eating again, I developed terrible colic
which was very audible. This was accompanied by nausea and vomiting –
never comfortable after abdominal surgery! My consultant sent me for an
abdominal x-ray to look for obstruction: the X-ray showed dilation of the
ileum, but no obstruction. I went back onto iv. fluids to keep me hydrated
(into my external jugular as the anaesthetist couldn’t get access in any
peripheral veins. As I built up to eating again, I still had the colic,
but less nausea, so I was sent home.
In hospital I had a ‘Valley’ cushion with the two ‘hills’ to sit on and the
valley so that it didn’t press on my perineal area. AT home I was supplied
with an inflated cushion which is narrow air filled tubes which is
surprisingly comfortable! There are two ways of performing the surgery: to
sew the perineal area closed; to allow it to heal from the inside out. I
was sewn closed which meant that I didn’t have to wear any pads to soak up
leakage and healing was rapid. There are reasons why people may be left to
heal open so that the gap fills slowly with new skin. One benefit of the
‘open’ method is that the risk of infection, surprisingly, is lower. If
there is a pocket of infection in the sewn surgery, then the person may
need to go back to theatre to have the wound opened to allow drainage.
Fortunately I healed without any problems.
Once home, I realised that I had a urinary tract infection with my
urostomy, so my wife took me to see my GP. I was given my usual
ciprofloxacin suspension (because of short bowel syndrome) which didn’t
appear to be effective, so my GP insisted on sending me into hospital.
There I was given iv. gentamicin which resolved the colic shortly after the
first dose! It proved to have been an enterococcus infection which other
patients in the bay had.

It was January 2005 when I had my proctectomy in the Queen’s Medical Centre
(Hospital) and come out with an gastric enterococcus infection (causing
very painful colic), unbeknown to both my doctors and myself. This also
caused a UTI which, of course, resulted in acute complicated
pyelonephritis. I went to my GP for my usual ciprofloxacin suspension,
but, this time, it had absolutely no effect. I went back to report this
and she had no hesitation in sending me straight off to hospital –
Nottingham City Hospital, Nottingham’s district general hospital. On the
Surgical Admissions Unit (kidney infections are dealt with my the urology
surgical team for some reason), the admitting consultant asked his JHO to
get a urine sample for culture, then to put me on gentamicin (one dose
every 24 hours). A line was eventually put in after several attempts and I
had my first dose of gent. which also completely cured the digestive
problem after the first dose. I was transferred to my usual ward, Harvey
2, and each day had to have a new line put in as the slow iv. saline which
was supposed to run 24 hours a day didn’t as the nurses didn’t always start
up the next bag as soon as the first finished, especially in the night.
When there was a delay, my cannula invariably tissued, so a new one had to
be inserted. Each one was harder to get in, with more attempts being made
before one would work.

On the fourth day, a JHO came to see me to say that the lab results were
back and I’d be sent home with suitable oral antibiotic to complete my
treatment. He went away to check on the antibiotic recommended (I am
allergic to penicillins and cephalosporins which makes life rather more
complicated). He came back to say I was to go home with nitrofurantoin. I
told him straight out that he’d better think again as there was no way I
was going home with nitrofurantoin. He asked me why I was taking this
attitude so I patiently explained that nitrofurantoin is not concentrated
in renal tissue, so is completely ineffective against pyelonephritis. He
was rather put out by my speaking to him like this (I did know what I was
talking about as I’d researched this very thoroughly for my case against
Royal Shrewsbury Hospital). He went back to Microbiology where the consult
there gave him a right ‘ear bashing’ too. The microbiology consultant
complained that he should have been told I have a urostomy as the
antibacterial suggested, nitrofurantoin (Macrobid in USA is one brand
name), would only be suitable for a simple lower urinary tract infection
which I didn’t have any more. The next day, when all this was related to
the consultant, he burst out laughing, saying that giving me nitrofurantoin
for a kidney infection was about as much use as hitting me round the face
with a wet kipper! I did actually feel rather sorry for the poor JHO who
was suffering because his patient knew far more about it than he did – he
was still learning, though. I spoke to him later and pointed out that he
may well meet more patients like me in the future who are well read on
their condition and know more that he does, so he should listen to his
patients!

It turned out that the only two antibiotics I could have were gentamicin or
vancomicin, so obviously the hospital decide to give me the less harmful
gentamicin. Of course, having removed the cannula for me to go home, a new
one had to be inserted for my next dose of gentamicin. Since I was known to
be difficult, the registrar was summoned to try. After several attempts,
he gave up, saying that there was no way he was going to get a cannula in
me. The poor JHO was summoned to ring the anaesthetists to request that I
have a central line inserted. The anaesthetist he spoke to was very
dismissive about doctors who couldn’t even get a cannula in someone: he
came to report the conversation to me, and I was able to tell him the
results later which did make him feel somewhat better.

A lady anaesthetist came to se me with, “What’s this I hear about none of
the doctors being able to get a cannula in you? Of course, we can get a
cannula in you.” She sat on my bed for about ten minutes examining the
backs of my hands, all over my arms and even my feet. She then smiled at
me and said, “I’m going to book a slot in theatre for you to have a central
line inserted.” That’s exactly what she did, so I had a central line for
the rest of my antibiotics.

After a week of gent. I was sent home. A week later, I was still very
unwell with pain in the small of my back so my GP again put me on
ciprofloxacin suspension. Again it had no effect, so I went back to see my
GP again. Once more, she sent me straight into hospital. There, the
admitting doctor read my notes and decided I needed more gentamicin, so he
rang for an anaesthetist to insert a central line, rather than fruitlessly
wasting time trying and failing to get a cannula in. It was the same lady
anaesthetist who took the call and remembered me. She was going off shift
so asked a colleague to do the honours for me. He didn’t believe that I
could be so impossible to cannulate, so came to the SAU to insert a cannula
himself. He told me that it was stupid for people to say that I was
impossible to cannulate and would need a central line: he was going to get
one in, no problems! I mouthed at the (different) JHO, “No way!” He
looked at my hands, then said, “I’ve seen the letter about your veins and
heard from my colleague, but the veins on the back of your hand look
lovely.” He then put a cannula in, causing me a great deal of pain in the
process, drew back and got blood, then said, “See! I told you it was
easy.” I said quietly, “You’ve burst the vein.” “No I haven’t,” he
strenuously insisted, then tried to flush it with saline. My hand
ballooned up. “Oh dear! I’ve burst the vein!” I couldn’t resist saying,
“I’m not going to say that I told you so!” He then went off to arrange for
me to go to theatre to get – yes, a central line! After he’d inserted it,
he asked me whether I’d been hurt more by his failed attempt at cannulation
of the insertion of the central line. I replied that the failed
cannulation was much worse. His response was that he’d thought as much,
and then apologised again for not believing me, and, even worse, not
believing his colleagues!

I was in for ten days this time and came home. Fortunately I’ve been clear
since, although the anaesthetists have decided that I get a Hickman Line
next time I need iv. antibiotics.

As a sequel to this, in May 2005, I had double sided TMJ arthroscopy. The
consultant anaesthetist discussed my many anaesthetic problems with me,
including difficult cannulation. She said that she would put a cannula in
once I was unconscious, for the litre of saline, antibiotic and pain
relief, as the anaesthetic would dilate my veins, making it easier, with a
fall back position of putting a cannula in my left external jugular. I
woke with a very swollen right arm and two cannulae in the same vein.
She’d burst two veins trying to cannulate me and left the second on in
place as she succeeded higher up the same vein – hence the two cannulae in
the same vein. She came to see me to humbly apologise that she knew I was
difficult but hadn’t appreciated just how impossibly difficult I am: she’ll
know better next time!

I was nearly a week in hospital in November with ileus. That was a
terrible experience as the consultant requested that theatres insert a
central line – I am impossible to peripherally cannulate these days. I had
not absorbed any food and drink for 24 hours prior to admission, so was
very dehydrated. My urine output had ceased. The consultant expected me
to get my central line inserted no later than overnight. The next morning
I still hadn’t got a line in and was critically dehydrated. The surgeon
sent one of his juniors to chase up theatres which resulted in a deputy
theatre manager coming to see me at noon. Her opening words to me were, “I
hear you’ve been whinging that you haven’t got your line in yet.”
Charming! It was my consultant who’d complained, not me, but I spoke to
her and found out that I was classed still as low priority and it might be
a further 24 hours before I had a line put in. I pointed out that if my
kidneys failed, I would sue her personally, as well as the hospital, for
failing to care for me properly. She went away furious and exploded when
she got back to theatres. A consultant anaesthetist heard her and checked
that it was me she was talking about. He was furious and told her that I
would be critically dehydrated by this stage and was top priority for a
line. Another consultant anaesthetist was sent up immediately and, after
discussion with me, he was able to insert an external jugular line in the
side of my neck in my right external jugular. I complained and the
hospital admitted that it had got my care dangerously wrong. An action
plan was prepared to prevent this from happening again – if it worked,
which it didn’t the next time it would have helped.

My ‘taxi’ came to take me away on Christmas Day 2005 for a five day stay in
a ‘hotel’ – the taxi was large with a fluorescent stripe down the side and
a flashing blue light on top (an ambulance for those in the USA – the
Ambulance Service is separate from the Fire Service and is publicly run)
and the ‘hotel’ was the local hospital – I had what was then thought to be
a severe asthma attack – my first one bad enough for me to be in hospital.
I didn’t have a severe asthma attack after all! The respiratory consultant
decided that I was atypical for asthma as my wheeze was when breathing in
rather than out, which is what one would expect from asthma. He diagnosed
provisionally gastro-oesophageal reflux disorder which causes vocal cord
dysfunction. The stomach acid gets onto my vocal cords, which causes my
chronic cough as well as causes the vocal cords to close up so I can’t
breathe in properly.

In March 2006, I had leg surgery to deal with a benign nerve tumour. After
the leg surgery, the pain in my left leg, resulting form my scalding
accident in December 1995, has been very much better. However, the rest of
the year was ‘interesting’! In April, I was admitted overnight with
paralytic ileus. In September, my wife, our wheelchair bound daughter and
I went to Shrewsbury on holiday. We arrived late on the Friday evening and
by lunchtime on the Saturday I was in Royal Shrewsbury Hospital A&E having
a femoral line inserted because of another bout of paralytic ileus. I
spent four days of our holiday in that hospital. I was back in hospital in
Nottingham at the end of September for there days with paralytic ileus
again – caused by a combination of adhesions and parastomal and incisional
hernias.

In October, I spent a week in hospital with pyelonephritis. I was swapped
from iv. antibiotics to oral antibiotics so I could be sent home. A week
later, I developed a gastro-intestinal bug which caused severe dehydration
again. My wife took me into A&E where the first nurse I saw decided that I
needed to be in Resus and took me straight there. The A&E nurse realised
how serious my condition was, which is more than the doctor did. I pointed
out the action plan which he decided to ignore. He did, however, decide to
admit me. I was taken up to the medical admission ward and the A&E nurse
came with me. She made sure that the staff knew how serious my condition
was when she handed me over. The ward was mainly trolleys with curtains so
that they counted as ‘beds’ for the government four hour wait target.
However, shortly after arriving, I was taken off to a proper bed to be
hooked up to monitoring equipment, much to the disgust of other patients
who’d been waiting some hours for a ‘proper’ bed. The nurse moving me shut
them up, “This patient is seriously ill and you’re not!”

That night, with kidney output zero again, the junior doctor twice rang the
anaesthetists, as per the action plan, for them to come to assess me and
get a line in. Despite the formal action plan, her request was refused.
She came to me to say that she had to get a line in me somehow and I
suggested the one last vein under my left arm in a very awkward position.
She managed to get a line in and poured five litres through as fast as
possible. She managed to kick start my kidneys just before dawn broke.
Her consultant told me that she’s saved my life – I would not have made
morning if it had not been for her!

I was transferred to a main ward where I became very ill again (once more
critical) because my temperature soared. The kidney infection had
returned. I therefore had to have more iv. antibiotics until the infection
had gone. The consultant decided that, with my short bowel syndrome, I only
absorb enough antibiotic orally to develop bacterial resistance to the
antibiotic, so I need to have iv antibiotics from now on.

I complained again and the A&E doctor, as well as the anaesthetists who
refused to implement the action plan found themselves in a great deal of
trouble. I was back again in March 2007 with paralytic ileus again, but
this time the action plan worked and I got a femoral line for the fluids
before my kidneys failed again. I was fortunate in that one of the
anaesthetist on call that night knew me and my problems!

Also in March 2007, I was fitted with a Port-a-cath in my right chest wall
so I have a port which can give easy iv. access. I was told that both
local hospitals knew how to use it. I get it flushed every four weeks at
home from my district nurses. Next time I need one, I will get it done
under sedation. The doctor used local anaesthetic and, when he was tearing
the fascia muscle in my chest with his fingers, he hit an area which had
not been anaesthetised. It was not pleasant!

My gastro-enterology consultant had tried to perform gastroscopy on me
under sedation and failed, because I gagged too much. I arranged to have
this done under a general anaesthetic, an the surgeon also decided that he
should do a bronchoscopy at the same time. It was found that I had a urine
infection, so was sent in for five days of iv. antibiotics before I had the
general anaesthetic. I went home, showered and changed, then back to
hospital for the procedures.

Because of my grade four difficult intubation, I made the consultant aware
of this at my first consultation and then, at his request, faxed him
through all the letters form consultant and registrar anaesthetists about
how they had dealt with my difficulty. This was January. The consultant
anaesthetist was negligent and unprofessional, so I have reported him to
the General Medical Council. I signed the consent form on the ward to say
that I agreed to the procedure and the anaesthetist would come to see me
before hand to discuss my anaesthetic. To my horror, I was taken down to
theatre without seeing him. He didn’t even speak to me except to say that
he was going to anaesthetise me now. He hadn’t read the fax which the
consultant had given him from me the previous Friday nor had he even
bothered to look at my hospital notes, which have all this information, on
the trolley beside him. He made no attempt to discuss my previous history.
When I pointed out that I am grade 4 difficult intubation (so he wouldn’t
have been able to intubate me if I’d let him anaesthetise me), he started
to shout and swear at me. That is well out of order and he could have
killed me through his negligence. The procedure gave me a chest infection,
so I spent a further eight days in another hospital recovering from the
chest infection. I have reported him to the General Medical Council for
negligence and unprofessional.

I had a further four days in hospital (where I had to teach the registrar
how to use my Port-a-cath!) with paralytic ileus. I had been tried on
proton pump inhibitors to deal with the gastro-oesophageal reflux disorder,
but these had made little or no difference. I was referred for oesophageal
manometry and 24 hour pH monitoring. These showed that I had stomach acid
at pH1 reaching the top of my oesophagus, proving the cause of my vocal
cord dysfunction. The manometry also showed that I had oesophageal
nutcracker syndrome. I was referred to another thoracic surgeon who agreed
to carry out fundoplication using a thoracotomy approach. This wraps the
top of the stomach around the piloric sphincter at the base of the
oesophagus to reduce reflux by strengthening the piloric sphincter.

I was admitted quite quickly following his decision with a fall back date a
week later. I would need to spend a couple of nights in CCU, so the
surgery would be cancelled if there was no CCU bed available. I was
admitted on a Sunday into an isolation room initially because of my MRSA
history. I spent the following two days on clear fluids only (my decision)
so that I could hook my ileostomy pouch to a urine drainage bag since I'd
be nil by mouth for a while following the surgery so my ileostomy would
only produce fluid. This was to make my nursing care easier since the
nurses would not have to empty my ileostomy pouch.

On the Monday night, I was given oral medication to reduce secretions. On
the Tuesday morning, it looked likely that the surgery would be cancelled
as there were three people waiting for surgery (I was number three) and all
required CCU beds, with none available. Around lunchtime, a nurse popped
her head around the door to my cubicle and told me to shower and change
into my gown – there were enough CCU beds available.

I was taken down to theatre. In the anaesthetic room I was sedated with
pethidine via my Port-a-cath and then midozalam ensured I would remember
nothing of the awake fibre optic intubation and insertion of epidural. I
was told later that I was longer in the anaesthetic room being prepared for
surgery than the actual surgery took. I woke in CCU where I spent a couple
of nights. As I did not need one to one care, there were times when I was
left alone so a nurse put a Bionector in a plastic pot for me to shake to
attract attention when I was left alone and needed something. A nurse
later asked what it was and, when I told her, crossly told me that I would
never be left alone as there would always be a nurse between two beds.
This wasn't true as the nurses were sometimes 'borrowed ' to help with
other patients so we were left alone. This did surprise me as in the QMC
ITU, I had always been able to see other nurses even if they were not
around my bed.

I was then transferred to the ward's HDU which was at the end of the ward.
There, because I was in pain, my epidural was increased until I was
pain-free. However this caused excessive paralysis so the pain control
team were asked to review me. A delightful anaesthetist whom I knew well
from previous encounters came and suggested re-siting my epidural from
right to left side as my surgery was from my left side where a rib had been
removed. I was offered the choice of doing this, but I asked the
anaesthetist what she would recommend. She therefore booked me into
theatre for a left sided epidural. Bless her, she sedated me with
midozalam so I don't remember anything about its actual insertion. Ever
since my very painful spinal anaesthetic for the BNR in 1993, I have hated
spinals and epidurals. As a result of this, and previous epidurals which
were one sided, it was decided that I am one of the rare people who has a
division up my epidural space. So, in future, if I need a block on both
sides of my body, I will need two epidurals. Trust me to be different!

Nursing staff in the HDU section made comments about the length of time I
had been there (other patients came and went). This was not of my making
and I felt the criticism was unfair. The consultant told me that I could
start eating, but the nurses left the 'nil by mouth' sign over my bed so
the ward hostess refused to serve me with anything on the basis that I
wasn't allowed to eat.

Later, when I did start eating, I was having great difficulty in actually
eating anything. The liquidised food which I needed at first congealed on
the cold plates and was nauseating to try to eat. I asked to see the
dietitian to discuss this. She came while I was having a chest X-ray (a
daily occurrence following this type of surgery) and was told by a nurse
that I did not need to see her as I was eating with no problems. This was
grossly untrue. The same nurse, when I was feeling very nauseous after
trying to eat, initially refused to give me anti-emetic via my line,
insiting that I should have it orally – less work for her. I was written
up for several routes for the drug and I poted out to her that, if I took
it orally, it would not be well absorbed and would take ages to work – I
felt nauseous there and then and needed fast acting relief – injected.
Eventually, and with ill grace, she did this.

The same nurse, when I was transferred from epidural to fentanyl patches,
was asked to give me a top up injection of fentanyl, written up on my drug
card for break through pain – which I had. She had just changed my
fentanyl patch and told me that I didn't need anything for pain as she'd
put a new patch on me. She showed her ignorance of the way patches work as
the drug wouldn't be absorbed for 12 to 24 hours through my skin and I
needed pain relief there and then. Again, after arguing my case, and with
ill grace form her, I got my pain relief. I rate this ward as the equal
worst ward I have even been on – shared with the ward where I was when I
have my peritonitis and was given MRSA. When I later needed help emptying
my ileostomy oncve I'd started eating again, albeit very little, the nurses
of this ward showed they had no idea how to care of an ileostomy. They
wiped the outside of the tail of my pouch, leaving the inside, exposed when
the clip was put on, to soil the bed and my clothing as well as cause
odour. The nurses were not pleased when I requested that they did this
properly by wiping inside the tail of the pouch.

Later, I had my femoral line removed from my left groin. I had been told
to get up and walk more than I did by nurses who seemed unaware that
walking with a femoral line pulls the stitches and can cause a serious
bleed. This happened in Royal Shrewsbury Hospital as the nurses were not
familiar with femoral lines on the ward where I was. There, as soon as
this happened, I was told not to try to walk around. When the line was
removed, the tip was found to be bent back and removal was painful.
Shortly afterwards, my left leg swelled to about three times the size of my
right leg and my 'independent mobility' was compromised because my left leg
hurt so much and would not bend. The nurse whom I had had so much trouble
with could not be bothered to amend my mobility score – too much work, I
suppose.

There was also a large red patch which appeared on that leg which looked to
me very much like cellulitis. I told the doctors this and was informed
that I didn't know what I was talking about. It was cellulitis, by the
way. I was told that I might have a DVT and so I needed a Doppler
Ultrasound scan to see if I did have a blood clot. When I was taken to
Imaging, I had a venogram instead from a very unpleasant radiologist. He
was far from gentle inserting a butterfly into that ankle and then, when he
tipped the scanner table up suddenly without warning so I started to slide
head down off the end of the table, shouted at me for 'daring' to grab
hold. He found nothing.

I was left untreated for nearly a week with a very painful, badly swollen
leg which severely restricted mobility so that I had to drag that leg as I
hobbled – unable to move more than a few paces. Eventually, a doctor from
the thoracic team came to see me and pointed out a man on a trolley
opposite my bed. “See that man over there? If you don't go home today, he
won't get his operation as he needs your bed. If your GP is unhappy with
me sending you home like that, he can always send you back again!” (Doctor
laughs at his own self-cleverness t this comment)

I went home with no discharge planning whatsoever. No nurse bothered to
ask how I would get upstairs or manage to get to the toilet – perhaps
because the lazy nurse had left me as 'independently mobile' on my nursing
assessment – a bigger falsehood I cannot imagine. The only way I could be
got out of the ward was to be wheeled to the fire exit where a nurse helped
me from the wheelchair into my wife's car parked just outside the door. He
bothered to ask how I would manage at the other end, but was called away by
another nurse, angry that he was helping me.

At home my GP came to see me. He took one look at the cellulitis and very
swollen leg and, just as the stupid doctor in the hospital predicted (well,
at least he got that right), sent me straight back again. In the emergency
short stay unit, the register who saw me knew me from previous admissions.
She took one look at the red patch on my leg and pronounced that it was
cellulitis and needed vancomycin as it was a hospital acquired infection.
She also said that my leg was almost certainly DVT and ordered up a Doppler
Ultrasound. This showed a 'massive DVT' (in the words of the consultant to
my GP) which ran the length of my thigh, and showed my femoral vein was
completely blocked. The thoracic team were very fortunate, as was I, that
I hadn't suffered a MCI, CVA or PE (myocardial infarction – heart attack;
cerebrovascular accident – stroke; pulmonary embolism – blood clot on the
lungs) as a result of their failure to recognise and treat the massive DVT
in my leg. My district nurses also remarked that I was fortunate not to
loose the toes on that leg with gangrene as well due to the compromised
blood supply.

The ward I was sent to was very much better than the thoracic ward and
staff seems to be much more caring and helpful, as well as looking at the
whole of the patient's condition and not just focussing on thoracic issues
to the neglect of the rest of the patient's condition. One issue I did
have was that one nurse failed to read the drug card when she administered
the vancomycin. My drug card clearly stated that this was to be given over
2 hours. When she failed to set up a pump, I asked her why, to be told
that a pump wasn't needed as she was giving it over 20 minutes. I pointed
out that the drug card clearly ordered this to be given over 2 hours so a
pump was needed. She was far from happy about this, but reluctantly got a
pump and set it up properly.

As a result of the DVT, I had to self inject with Clexane Forte – high dose
low molecular weight heparin – for six months to help with the DVT and then
I have to use Clexane as a prophylatic for life to prevent recurrence of
DVTs. Normally warfarin is used, but my short bowel and absorption issues
mean that getting a stable INR on warfarin would be very difficult – the
injections are more reliable. Additionally, I have to wear compression
stockings for life to prevent varicose veins and leg ulcers.

The thoracic ward contrasted so poorly with the Clinical Nutrition Unit
where the staff were helpful and very caring. The thoracic ward left me
with the impression that the nurses were doing a job whereas the nurses on
the CNU had a real sense of vocation. The standards of care were chalk and
cheese. I was on the CNU for investigation of my high output ileostomy
which had caused dizziness, collapse and shaking. It was found that I have
a fluid deficit which has been treated with loperamide hydrochloride
(Imodium) and self administered sub-cutaneous fluids – a litre overnight.
Along with my 'handbag' (my stand for my night urine drainage bag), CPAP
machine, hospital electric bed and transfusion stand, my bedroom looks more
like a hospital ward than a domestic bedroom!

Surely there can't be more? Oh yes! My urology consultant this year
(2008) said to me that I collect medical conditions like other people
collect stamps! In January 2008, I started to get pins and needles
(paresthesia) in my right arm which would then become numb. I saw one of
my GPs who suggested that it would probably disappear with time. No – this
is me – that sort of thing just doesn't happen. As this was getting worse,
not better, I saw another one of my GPs later in the year who sent me for
an X-ray. This showed nothing (we were expecting some mild arthritis), so
she sent me to a shoulder specialist. Before I went in to see him, he
ordered up two shoulder X-rays and two neck X-rays. The shoulder X-rays,
when he put them on the viewer, looked fine to Ann, my wife and I, but we
could see a problem on the neck X-ray. The side on view showed a large
white lump on the side of one of the vertebra. The specialist said that
this was an osteophyte – a bony growth which, after discussion we agreed
was probably the result of a whiplash injury some 28 years previously – a
youth had run into me with his bike on the pavement from behind.
Accordingly, I was sent to a spinal surgeon. The referral letter described
the osteophyte as 'enormous' and also that the spaces between the lower
cervical (neck) vertebrae have collapsed as the discs between them have
aged!

The spinal surgeon poked and prodded me as doctors are wont to do. The
results of that were that I have limited neck movement, as well as neck
pain, reduced reflexes in my right arm as well as decreased sensation from
the pin prick test. All of those are classic signs and symptoms of the
nerve roots from my spine to my right arm being squashed. So I have had an
MRI of my neck and a radiologist is to inject just one of the nerve roots
with steroid to see if this improves my symptoms. If it does, spinal
surgery looks likely.

While all this has been happening, I have also been seeing a chronic pain
specialist. In the UK, these doctors are usually anaesthetists who have a
special interest in pain control. 'My ' consultant is a delightful lady
who has anaesthetised and treated me for chronic pain before. She has put
me back on fentanyl patches for the pain and is also going to try TENS for
the swollen intercostal muscles between my ribs where the rib was taken out
for the fundoplication surgery.

I had initially resisted going to the pain clinic as I didn't want to be a
'wuss' for complaining about the pain from that surgery. However, I was
considerably cheered up when I was told that it was the anaesthetist's
opinion that all people who had thoracotomy surgery with fundoplication had
chronic chest pain afterwards. That made me feel better!

Quick addition I did have the cervical fusion (C5-C6) last December and,
to everyone's surprise, I was going home less than 48 hours after I came
out of theatre. In June this year, I had some plastic surgery to help my
nightly fluids be absorbed better as the laparotomy scar (from diaphragm to
groin was particularly bad at the top and blocked the fluid from spreading
across the top of my abdomen.) I was supposed to be in several days with a
wound drain and I was out less than 24 hours from being taken from theatre
to recovery. The surgery was supposed to take 20 minutes, but I was
breathed down (because of my obstructive sleep apnoea I can't have the
injection to put me to sleep, I have to breathe the anaesthetic gas
instead) at 9.30 and woke in recovery at 12 noon!

Insurance for Ulcerative Colitis

2010-04-17T15:40:00.001-07:00

http://www.advisor.ca/advisors/insurance/life/article.jsp?content=20100413_142841_5512

Tattoo for us Jpouchers

2010-04-15T17:07:00.000-07:00

Tattoo for us JPouchers

latest results on JPouch resiliency study

2010-04-10T17:25:00.000-07:00

I like to test things. My wife loves and hates this about me.

My J-Pouch was connected in 1 step, nine days ago. Last night, in one of the tests that my wife is not so fond of, I ate a tub of popcorn, unpopped kernels and all. And then topped it off with full size 7 coconut macaroons. It wasn't anything special going in; it was definitely more fun when it came out. I'll spare you the details in-between but suffice it to say that my wife was not happy with this latest test.

I think she is right, perhaps it's time to tone things down a bit. Anyways, there you go. It IS possible to eat coconut and popcorn 2 days after getting out of the hospital!

BTW My wife says she will divorce me if I continue to experiment like this.
She already wrote her ebay ad.
"used husband likes to play daredevil with health; needs a good home and someone who is willing to spend time in hospital, should be independently wealthy, not have an issue with disrupted jobs, not need much sleep. "

Thank you Colitis.

2010-04-10T16:39:00.000-07:00

It was time to remove the glue from my backside. Copious amounts of the stuff had been spread across my buttocks to ensure that the various tubes would stay in place. Once I dried off from my heavenly shower I sat back and the nurse tugged at the coloplast, medical tape and whatever else was stuck there. She pulled off matts of hair and glue and skin in the process. I shrieked in agony but was still in joy from my minutes-ago shower.

Pain.

Things are good now, at least for the time being, but as I reflect on the last 3 years, especially the worst of the disease, I wanted to document this paradox of pain: In my post-shower bikini wax moment, I was in agony yet it didn't matter. The pain was local and fleeting and paled in the grand scheme.

Just like the Inuit have many words for the different types of snow, I see that there are many types of pain that can be better described. I can't say why a better description is helpful to a non-medical person like me, other than the fact that I find defining things further, to be fun. (Or perhaps that it makes me feel wise and I feel like I have a badge I can now show off. )

So, here goes..
There is local pain versus body pain, the latter being far worse. When body pain becomes bad enough you die. Local pain just hurts.

There is fleeting and continual pain, continual pain being annoying because, by definition it won't go away.

And then there is suffering. Suffering is the emotional add-on which pops in like an unwanted family member who won't go away and drains hope and seeks out optimism only to destroy it with glee. It is the psychological aspect of pain. It is the feeling of your hope being crumbled.

Suffering is the worst type of pain to have.. You can't escape it and it never seems to dwindle in it's ferocity. I think that's why depression is so painful, and in particular, why these auto-immune diseases are so horrible. Until you get over them and reset expectations, you more than feel pain, you suffer.
Personally, I've gotten to the point where I don't expect much anymore. It feels great. When things go wrong you take it in stride. When things go right you love it. What better way to live? Thank you Colitis.

Heaven

2010-04-08T10:54:00.000-07:00

I took a shower without bags or tubes or catheters attached to me. It felt like it took 10 minutes but probably was closer to 30+ minutes. I can't describe the joy of being unencumbered. It's not that the bag was bad to have. Not in the least.

This shower offered something altogether different: the sudden removal of the diverting tubes that shackled my freedom, the bag that reminded me of my illness, the IV drip that was my too often companion.

That shower felt so good it was worth a week in the hospital.

It works! I love it!

2010-04-06T18:45:00.001-07:00

How do I use this thing?

2010-04-06T07:14:00.000-07:00

The new plumbing is attached. Nothing comes out. How do I use this thing? Normal pushing doesn't make anything come out. Hmm...

Without a bang

2010-04-06T05:43:00.000-07:00

Thankfully, an uneventful night.

This morning they took out Alexander, my rectal tube. It slinked out without fuss.

I am no longer have a bag and things look good. Lets see how day one without any external appliances goes!

Giving it a shot

2010-04-05T11:39:00.000-07:00

The new plumbing was installed 6 nights ago. They removed George, my stoma, and wired up a pouch using my small intestine and connected it to my rectal cuff. I have been on fluids until now and things have gone surprisingly well so far!

15 minutes ago I took my first bite of food in a week. I am so excited to see if this egg sandwich will come out the other end, properly, without drama. I dream of being able to go less than 8X a day. Not having to run to the toilet or think about changing my appliance. I dream of not having more inflammatory bowel disease. I dream of not having my lungs and skin and whatever else be inflamed and battered.

I have no idea if this thing will work but am willing to give it a shot. If we can stay out of the hospital for a few more years, that would be a huge success.

My glass is half empty and probably broken too

2010-03-29T21:13:00.000-07:00

Off we go to the hospital tomorrow. Yawn. I feel so underwhelmed.

The only thing I dread right now is not seeing the pets for a few weeks. Unless my wife can fit the dogs into a suitcase and sneak them in, to say hi.

Other than that, I mildly dread seeing those shiny green tiles and all the gleaming metal everywhere. And when they lift me onto the table. Oh, and the sepsis I will probably get, and eventual flares and all the tubes to drain me and the inability to eat for a few weeks. And butt burn.

But think of all the people who will fawn all over me. :)

Signing out,
Steven the eternal optimist

One cool thing, BTW, is that here in Canada we don't have to directly pay. In the U.S. people pay $100k-$700k for this stuff. WOW!
http://j-pouch.org/eve/forums/a/tpc/f/2571085761/m/8021083962

Off we go to jpouch surgery, 3 more days.

2010-03-26T20:28:00.000-07:00

No fear yet. Its kinda weird. We can get used to anything.
I'll try to use my calmness to bring calmness to my hysterical family members.

Ciao!

Kinda sucks having a loving family.

2010-03-24T23:30:00.000-07:00

Now I know where that persistent stubborn cough is coming from. And I know why I have a skin ulcer that won't heal.

I learned a new word today: pathergy. "a condition in which the application of a stimulus leaves the organism unduly susceptible to subsequent stimuli of a different kind". In other words, get a surgery and the area that's cut may now develop ulcers, rather than heal nicely.

This IBD or UC really is a rotten disease and total colectomy (ie removal of the colon) is not a cure-all. At least the diabetes is gone..

Not sure what to do at this point. If I didn't have a loving family, whose company I adore... I would find some cool way to off myself. Instead I must endure this crappy set of genes. Thats why it sucks having a loving family.

RIP my little friend

2010-03-18T09:40:00.000-07:00

Bye bye little George,
I think you are going back inside

It was so nice to know you.

At first I was so scared of you
and didnt want to touch you

and then you saved my life
and I still didn't want to touch you

but you slinked and wormed around and explored the world
and kept saving my life

and were always there for me

even when I was at work
and everyone in meetings would hear you gurgle and snort

In truth, I will miss the attention you get me
all the loving care
when friends and family say that I should go to the bathroom
because they can see what you've been up to

You will be missed, my little friend

My new friend

2010-03-13T12:49:00.000-08:00

I was putting my flange on today, the Hollister variety because it lets me apply strong pressure to clip the bag to the adhesive flange. I was squeezing and squeezing but it wouldn't make that click sound. I tried it with different hands, from different angles. And then I realized. My stoma was caught between the part of the clip I couldn't see.

And, in shock, I heard myself exclaim "Oh my god, I had no idea you were there. I am so sorry". From that moment on, I knew I now see this little monkey of a stoma as a separate being. Still nameless but loved and a part of me. The little monkey bled quite a bit but I think he/she is OK. Let's call him George. And of course he's curious about the world. He does his own thing quite often and we get along pretty well. I wonder what other people name their little guys and gals.

A great attitude

2010-03-12T12:38:00.000-08:00

I always assumed a JPouch reversal would fail for me.
I still don't think it will work. I still imagine that I'll just get my old colitis back again and be living in the toilet.
But I'm willing to give it a shot.
If ever there was a good test for mind over matter, it's now as the mind doesn't believe. If things work out that would be very cool indeed.

We are locked and loaded for April 8.

This is what I will be looking like soon (under the blanket)

2010-03-11T16:20:00.000-08:00

that picture scares the *$*() out of me! I admit that a part of me wants to cry when I look at this picture.

The times are a changin'

2010-03-10T20:23:00.000-08:00

So I developed a big wound under my stoma. It makes having the bag on into a painful and difficult task. Today, my medical team advised me that the best course of action is to try to keep the wound under control until a corrective surgery can be done.

The corrective surgery is invasive and involves moving my stoma to the other side of my belly.

I opted for a JPouch instead. It would be nearly as invasive as the correction surgery. It turns out my surgeon thinks she can do it in one step. Why not try it, and the worst case is we revert to an ostomy...?

Here we go again, yet another adventure to go through. This time I am excited!

The bag isn't bad but if the JPouch works, how cool would that be?

The other problem with gluten

2010-03-10T12:48:00.000-08:00

Bread, everywhere.

Maybe the real problem with bread is that its so easy to eat. It is a food delivery system, almost like an evelope delivering your food message into your mouth. What a terrible analogy but you get the point. Bread is also a source of calories. A bringer of crunchiness. Sweetness. Moistness. Pizza. It is in just about every junk food too.
When you outlaw bread from your diet you are forced to become creative, and forced to reduce your fast food consumption. No wonder that even non celiac people benefit from reducing bread.

Ostomies are bad for literacy

2010-03-06T12:48:00.000-08:00

I miss reading like a normal person does.

I dont' read magazines while on the toilet anymore. There's just less time spent on the can, waiting for a loaf to come out.

With an ostomy, you are active, emptying and cleaning things. Your hands are busy.
My Spanish is getting worse and worse. My economics magazines are not getting read unless I make a concerted effort to get off the computer and actually (get this) sit down and read. Soon I will become illiterate thanks to colitis and my radical cure. Damn disease.

I wish I could make an automatic magazine holder and page flipper to help with this problem.

Ok, heres the plan. 2 weeks

2010-02-27T08:05:00.000-08:00

2 Weeks to heal these problems and try to avoid yet another surgery for God's new gift (Fistula):

-no wheat
-no dairy
-adsorbent charcoal

Lets see what happens.

I'll measure progress by the size of the irritated area. (God can keeping screwing himself in the meantime, I do this despite God. )