So there I was, lying in a hospital bed in
agony and vomiting bucket loads as my Mum cradled my 4 day old son. This can’t
be morning sickness. I was vomiting since I was 3 months pregnant which is
unusual as that’s when morning sickness is meant to subside but I’m always the
exception to the rule. I was quite poorly by the time I gave birth as I had a
very rough pregnancy, was told he was going to be small and my son was 10lb
when he was born!!
He was healthy but I still deteriorated even
after he was born. I was transferred out the maternity unit to the Western Infirmary which is an
adult hospital. I had x–rays, scans,
blood tests , you name it I had it and they finally took me to theatre 2 weeks
after giving birth. Here they had a good look around and washed out some blood
n free fluid in my abdomen. However nothing changed. Was still in pain and
being sick up to 10 times a day and remained on a drip and a cocktail of pain
and nausea meds. The surgeon I was under decided to take me back to theatre to
check my gall bladder and appendix. He removed my appendix but then told me
that it wasn’t my appendix that’s causing all of this but he took them out
anyway as you don’t need them and it’ll save me ever getting appendicitis!! Needless
to say I wasn’t very happy. After 4 months in hospital and weighing 6 stone 1oz
I was referred to a gastroenterologist. Straight away he said every test and
investigation was to be postponed as he wanted to deal with my symptoms and
control them much better before they proceeded further. I was put on a syringe
driver with cyclizine and morphine and this instantly relieved some of my
symptoms. He then explained that my stomach wasn’t tolerating anything and
they’ll do a gastric emptying study soon but in mean time he said I need to get
some nutrition as my blood works were pretty bad and I was very malnourished.
He placed a NJ tube in endoscopy and this bypassed my stomach and fed me
directly into my bowel. Slowly but surely my weight crept up as the feed and
rate was increased and I felt a lot better, but I was still relying on pain and
nausea meds and tube feeding to keep me stable.
After a couple of weeks he booked me in for a
Gastric Emptying Study (GES). This showed considerable delay in emptying and
after the 4 hours under the scanner 94% was still in my stomach. My consultant
Dr Matt Priest based at Gartnavel General Hospital confirmed it was severe
Gastroparesis and I would need to remain on NJ feeding. This was set up and I
was trained how to administer this and my meds and in July 2009 I was
discharged home, 7 months later to my family. November
was a challenging month. It started off badly and I was vomiting so excessively
I had to have my NJ replaced 4 times. During 1 of those procedures Dr Priest
informed me he was going to try Botox. It was highly experimental and it was
injected in to try relax the pyloric muscle in my stomach, thereby allowing the
stomach to release more food into the small intestine but this failed to make
any difference and excessive vomiting continued with dislodged NJ tubes. That
meant feeding was virtually off that month and it saw my next hospital
admission for a seizure. That was scary, well when I woke up I was in HDU and
didn’t know what had happened but luckily because I hadn’t been well my Mum was
there so witnessed the whole thing and called the ambulance. I seized in resus
and my NJ tube removed for access to my airway. I was kept in over Christmas
and New Year. I was seizing up to 4 times a day! It was a vicious circle.
Malnutrition was the cause of the seizures with tramadol making them worse
however they were not controlled so when I did have a NJ re inserted it would
either be pulled out for access during a bad seizure or my feed would be
stopped for 48 hours after a seizure for fear of aspirating into my lungs. I
did not have a seizure ‘free’ day so no feed only iv fluids by this point
through a central line in my neck.
My consultant told me about a possible
treatment that might make things more normal and maybe be able to come off the tube feeding. It was a gastric
pacemaker. Enterra Therapy is its real name but it was exactly same as a heart
pacer except it regulated my stomach to contract, therefore food emptying which
meant I’d be able to eat orally and stop the NJ feeding and it would hopefully
stop the pain and sickness as things
were moving as normal. The biggest challenge was getting the funding for t. It
was still in its trial stages so was not an approved therapy from NICE ,
therefore some health boards were refusing to fund the cost of the device and
the surgery to place it. My consultant, my mum and my family all worked
together and put forward a case for me to have this implant. This was not a
walk n the park and we were told we could go private but would cost £22,550! It
was the same surgeon who also works in the private bupa healthcare, that works
in the NHS hospital that was able to carry out this operation. He was the only
surgeon in the UK at that point who could carry out the operation. So it was
either pay £22,550 or appeal to the health board and get him to do it on the
NHS. This is where our fight began………..
To be continued on Saturday 8/25
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