As I walked through the front doors of the much too familiar hospital yesterday, the knot in my stomach twisted just a little more. Hoping for answers, an action plan...a miracle...
Well here's how it went.
As always upon arrival the nurse took me to the 'weigh station' and gave me my weight on a post-it to hand to Dr R. Then the clinical nurse sat me down to check how things where going and had me complete what can only be called a Poo Chart for the last 7 days.
'How many loose or liquid stools have you had over the last 7 days?' - 0
'On a scale of 0-5, 0 none, 5 severe, how much abdominal pain have you had over the last 7 days?' - 0
'On a scale of 0-5, 0 well, 5 poor, how has your general well being been over the last 7 days?' - 1
I have been well. Abit tired but aren't we all.
She lets me know that she has cancelled my future Infliximab infusions and that she has my blood results from the day before then ushers me back to the waiting room to wait for Dr R. I know he always runs late. I'm sure the ticking clock was mocking me.
After a lengthy consult the outcome is this-
It seems that my infliximab (my treatment for my Crohns) has caused this Granula Hepatitis in my liver. My bloods show that my liver enzymes are slowing returning to normal without any treatment which is great.
I am currently off all medication and will continue to have regular blood tests until the liver enzymes have all returned to normal. Then I will restart my daily 6mp medication. As for my infliximab, it seems I have seen that last of it. Dr R explained that it is the anti-TNF properties of the drug that has probably contributed to this. There is another drug available called Humira but it is also an anti-TNF drug. There are a couple of drug trials that I could look at and Ive been sent home with some information about 1 of them. But for several reasons this isn't something that I want to take part in right now.
SO, for now it seems I am back to waiting but as long as I keep well I will be happy.
xox
Tuesday, 28 August 2012
Monday, 20 August 2012
I'm Back!
Well it's been a while since my last post but I'm back! A little sore and tender but thankfully out of the confines of my hospital room.
I have just spent another week in hospital...these visits are becoming too regular for my liking but I am hoping that after this recent one there may be a little light shining at the end of that tunnel.
There are a few things I haven't yet had the chance to catch you up on...one of those things is that since the end of 2010 I have been admitted more than a few times with not only a Crohns flare but jaundice with infections in my liver.
My recent infection started like every other one-quick and hit me like a freight train. We had been to a wedding on the Saturday and had a beautiful time. I was on the heavy stuff all night- water (I haven't drank in many years due to my crohns). The next day my wonderful husband let me have a much needed nana-nap but I woke with uncontrollable shivering and a fever. Then the vomiting started. Surprisingly I didn't seem to have any signs of 'bad belly'. The fevers continued and it wasn't until Wednesday that I got to see my GP. By this stage I was yellow, the whites of my eyes were yellow and the 4kg that had taken me 2 months to put on were gone. She called my specialist and sent me straight to the hospital. I thought 'here we go again. Another round of IV steroids, send me home and see how we go.'
But this time was different. I had just seen my specialist the week before and raved to him how well I was feeling and managed to put on and keep on some weight (a positive sign for me as it means my belly is behaving).
On admission I was given IV fluid to re-hydrate me but nothing else. The Dr's had decided that finally it was time to get to the bottome of this of just treating it. I was poked, prodded and sent for xrays, ultrasound, CT scan and an MRCP. As well as needing to provide what can only be described as an inappropriate amount of stool and urine samples!
Monday came around and one of my beautiful friends' had come to visit, armed with muffins and the latest Frankie mag, the nurse came to tell me they were ready for me in theatre and it's time to get dressed (or undressed and into my paper undies and stunning violet backless gown). Frankie would wait-I was scheduled for a liver biopsy and to have a couple of enlarged lymph nodes removed and sent to pathology. My surgeon is a beautiful man whom i have met before. He squeezed my hand tight as I waited for my anaesthetic induced sleep to come.
As I lay on my crunchy plastic mattress, gazing out my window at the fireworks display from the Ekka up the road, I missed my little family so much.
After a week on the inside I was allowed to go home. At this stage the liver biopsy shows something called Granuloma Hepatitis. Not a true hepatitis and often secondary to something else in the body. The consensus at the moment is that my medication and infliximab infusions could be contributing to this so I am off all medication until I see my specialist next week.
I am taking it very easy with the help of all my family and after treating myself to a beautiful facial, am feeling somewhat normal today. I am off to work at the end of the week and hoping that next week brings some more answers.
Much love to you all xo
I have just spent another week in hospital...these visits are becoming too regular for my liking but I am hoping that after this recent one there may be a little light shining at the end of that tunnel.
There are a few things I haven't yet had the chance to catch you up on...one of those things is that since the end of 2010 I have been admitted more than a few times with not only a Crohns flare but jaundice with infections in my liver.
My recent infection started like every other one-quick and hit me like a freight train. We had been to a wedding on the Saturday and had a beautiful time. I was on the heavy stuff all night- water (I haven't drank in many years due to my crohns). The next day my wonderful husband let me have a much needed nana-nap but I woke with uncontrollable shivering and a fever. Then the vomiting started. Surprisingly I didn't seem to have any signs of 'bad belly'. The fevers continued and it wasn't until Wednesday that I got to see my GP. By this stage I was yellow, the whites of my eyes were yellow and the 4kg that had taken me 2 months to put on were gone. She called my specialist and sent me straight to the hospital. I thought 'here we go again. Another round of IV steroids, send me home and see how we go.'
But this time was different. I had just seen my specialist the week before and raved to him how well I was feeling and managed to put on and keep on some weight (a positive sign for me as it means my belly is behaving).
On admission I was given IV fluid to re-hydrate me but nothing else. The Dr's had decided that finally it was time to get to the bottome of this of just treating it. I was poked, prodded and sent for xrays, ultrasound, CT scan and an MRCP. As well as needing to provide what can only be described as an inappropriate amount of stool and urine samples!
Monday came around and one of my beautiful friends' had come to visit, armed with muffins and the latest Frankie mag, the nurse came to tell me they were ready for me in theatre and it's time to get dressed (or undressed and into my paper undies and stunning violet backless gown). Frankie would wait-I was scheduled for a liver biopsy and to have a couple of enlarged lymph nodes removed and sent to pathology. My surgeon is a beautiful man whom i have met before. He squeezed my hand tight as I waited for my anaesthetic induced sleep to come.
As I lay on my crunchy plastic mattress, gazing out my window at the fireworks display from the Ekka up the road, I missed my little family so much.
After a week on the inside I was allowed to go home. At this stage the liver biopsy shows something called Granuloma Hepatitis. Not a true hepatitis and often secondary to something else in the body. The consensus at the moment is that my medication and infliximab infusions could be contributing to this so I am off all medication until I see my specialist next week.
I am taking it very easy with the help of all my family and after treating myself to a beautiful facial, am feeling somewhat normal today. I am off to work at the end of the week and hoping that next week brings some more answers.
Much love to you all xo
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