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Terry's Story - Part 2
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Note: This is an update of Terry's original story as he has now had urostomy surgery as well.
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Thanks for posting my initial story on your
page. I've now got an update as I'm acquiring a urostomy to go with my
ileostomy. Here's why:
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. Three months later, I was back on the operating table with
the same operation as I'd scarred over and almost completely obstructed.
Over a six year period, I had six TURP/BNR
(transurethral resection of the prostate/bladder neck resection) - something
of a record.
Whilst I was in the Burns Unit of the same
hospital (following a scalding accident) I was started on intermittent
self catheterisation 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)
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.
My rectal stump was left after the subtotal
colectomy and ileostomy in March 2000. It's 15 cm (6") long and suffers
from distal proctitis because it isn't used for its old job. I suffer from
mucus build-up in the stump and can't 'bear down' to get rid of it as this
pushes the tip of my catheter harder into my bladder which hurts 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 (examination under
anaesthetic) 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 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. When she came back and saw the amount of 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. (if anyone wants a copy of this protocol, please
email me on terry.gallagher@ntlword.com
for a copy). I hoped that the rectal stump could go, then I wouldn't be
dependent on the district nurses once a week. However, the risk of dying
is unacceptably high considering the circumstances, so it's just the partial
clearance and urostomy formation.
The hospital arranged for the district nurses
to carry out MRSA screening so that, if negative, I could be nursed in
an open ward for three reasons:
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 midozalam 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 cricothyroid 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 21.20 and transferred to HDU an hour later.
I had swabs taken of my nose, perineal area,
stoma, suprapubic catheter fistuala (also called a cystostomy) as well
as a CSU (catheter specimen of urine). Unfortunately MRSA was found again
in my nose, so the infection control nurse from the local hospital arranged
for the district nurses to help me with treatment. My GP was asked to prescribe
Bactroban ointment for my nose and Aquasept body was 'just in case.'
I used the medication as directed and it
cleared the MRSA. Pseudomonas infection was found in my urine and that
was treated with ciprofloxacin, the usual antibiotic when I got that infection.
 My urostomy, on the left because my ileostomy was already on the right side, is now three and a half weeks old. I've still got the stents in place (they show no signs of wanting to come out yet) and the urostomy bag is connected to my leg bag. The abdominal incision has been opened up three times now: Hartmann's Procedure, Sub-total colectomy and ileostomy and the urostomy operation. To the right of this scar, slightly under my ileostomy flange and visible just above it, is the scar where the Hartmann's Procedure was reversed. |
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. 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, 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 am sore: of course, I've had major abdominal surgery with about 30 cm of incision. However, I'm sore rather than in pain and getting better. The pain I'd had from my catheter and bladder has gone completely including a 'low level' pain that I'd not been aware of until its absence. I feel 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 (I'll still need the district nurses to do the rectal washouts). Two stomas to care for just take twice as long: I can cope and I feel better. I'm hoping that this will be the end to my abdominal surgery and I'm looking forward to continuing with my life. I'm in training to become a lay reader and hope to qualify in three years' time.
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