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
Thursday, 12 July 2012
Flying the Coop
The day after my 18th birthday, car packed to the brim, I moved to Brisbane to study and live with my big brother. He always looked out for me. Even as a child. I remember playing in a sandpit when a boy threw sand in my face. My brother stormed up to him, shoved him and said 'If you do that again I'll give you a bunch of fives!' shaking his fist in his face. I know he'd still do the same today.
It was such a daunting experience coming from a small town to the big city. It took about a year for me to drive anywhere further than the grocery store - I was so scared of getting lost and not being able to find my way home!
Quite a few of my friends had moved to Brisbane to continue their studies, as had I. My high school sweetheart had also moved down to pursue a career in football. I studied Remedial Therapies while working in the local newsagent and fish and chip shop until I started work as a massage therapist in a physiotherapy clinic. It was such a wonderful place to work-amazing energy and met some beautiful lifelong friends.
These first few years away from ‘home’ passed in a blur. I was 18 and did what any 18 year does-drink and have a great time. Although there were countless times I would call mum in tears wanting to come home. To be back in my little comfy space, with Mum and Dad. Regardless of the people around me I felt lonely. My boyfriend was very focused on making it playing footy. I still have never met a person more dedicated than him. He was always the first at training, the last to leave, never touched a drink…ever, and pubs or clubs were as far from his mind as the moon! Going out anywhere during the week was completely out of the question, and there was always the night before a game routine-a quiet night in. I think I finally gained a lot of independence this way-I went to BBQ’s, parties, pub catchups and dinners…alone, and had fun.
I had spent my life under the watchful eye of my parents and family and now I was in this different city that felt so far away. I felt my Crohns, Drs appointments, health and diet was always managed by my mum. I was so young when I was diagnosed that I grew up not really having to think about it and now it was all up to me. My path of 'management' became one of ignorance. If I just ignored the pain, the trips to the bathroom, acted oblivious to the fact I had Crohns, maybe it would just all go away. I drank, danced the nights away, ate plenty of the take away food that we were never allowed growing up and had no respect for my medication.
Everything came to a head in 2005. This also happened to be the same time that I decided I could no longer live with my brother. I love him to bits. We are just not meant to live together. For the first time in my life I moved in with 2 girls and loved it. Not long after that I moved again…in with my boyfriend, my now mother-in-law, their faithful old dog and my very pretentious cat.
I had been part of a drug trial for a new medication to treat Crohn's. It was a 'blind' trial, meaning some participants received the drug and others received a placebo...aka...nothing. I had received placebo, had a big flare and ended up in hospital. Again I ignored all the signs and symptoms and got to the point where I wasn't eating just so I would stop going to the bathroom. It got so bad that even a glass of water made me run to the toilet. I was treated with intravenous steroids to quickly reduce the inflammation. It was then that I was assessed for a relatively new drug, Infliximab, which was having great success treating Crohns as well as psoriasis, ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis, and ulcerative colitis. I had only ever been on oral medication but this Infliximab was to be administered through a drip over the course of about 6 hours, every 8 weeks. It wasn’t on the PBS so the hospital had to apply for special approval for me to have it. And so it began, my relationship with Infliximab.
xo
It was such a daunting experience coming from a small town to the big city. It took about a year for me to drive anywhere further than the grocery store - I was so scared of getting lost and not being able to find my way home!
Quite a few of my friends had moved to Brisbane to continue their studies, as had I. My high school sweetheart had also moved down to pursue a career in football. I studied Remedial Therapies while working in the local newsagent and fish and chip shop until I started work as a massage therapist in a physiotherapy clinic. It was such a wonderful place to work-amazing energy and met some beautiful lifelong friends.
These first few years away from ‘home’ passed in a blur. I was 18 and did what any 18 year does-drink and have a great time. Although there were countless times I would call mum in tears wanting to come home. To be back in my little comfy space, with Mum and Dad. Regardless of the people around me I felt lonely. My boyfriend was very focused on making it playing footy. I still have never met a person more dedicated than him. He was always the first at training, the last to leave, never touched a drink…ever, and pubs or clubs were as far from his mind as the moon! Going out anywhere during the week was completely out of the question, and there was always the night before a game routine-a quiet night in. I think I finally gained a lot of independence this way-I went to BBQ’s, parties, pub catchups and dinners…alone, and had fun.
I had spent my life under the watchful eye of my parents and family and now I was in this different city that felt so far away. I felt my Crohns, Drs appointments, health and diet was always managed by my mum. I was so young when I was diagnosed that I grew up not really having to think about it and now it was all up to me. My path of 'management' became one of ignorance. If I just ignored the pain, the trips to the bathroom, acted oblivious to the fact I had Crohns, maybe it would just all go away. I drank, danced the nights away, ate plenty of the take away food that we were never allowed growing up and had no respect for my medication.
Everything came to a head in 2005. This also happened to be the same time that I decided I could no longer live with my brother. I love him to bits. We are just not meant to live together. For the first time in my life I moved in with 2 girls and loved it. Not long after that I moved again…in with my boyfriend, my now mother-in-law, their faithful old dog and my very pretentious cat.
I had been part of a drug trial for a new medication to treat Crohn's. It was a 'blind' trial, meaning some participants received the drug and others received a placebo...aka...nothing. I had received placebo, had a big flare and ended up in hospital. Again I ignored all the signs and symptoms and got to the point where I wasn't eating just so I would stop going to the bathroom. It got so bad that even a glass of water made me run to the toilet. I was treated with intravenous steroids to quickly reduce the inflammation. It was then that I was assessed for a relatively new drug, Infliximab, which was having great success treating Crohns as well as psoriasis, ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis, and ulcerative colitis. I had only ever been on oral medication but this Infliximab was to be administered through a drip over the course of about 6 hours, every 8 weeks. It wasn’t on the PBS so the hospital had to apply for special approval for me to have it. And so it began, my relationship with Infliximab.
xo
Friday, 22 June 2012
The Younger Years Part 2
(Sorry it's a long one!)
Everybody has bowel motions. It is part of life. Growing up, I just seemed to have alot more than 'normal' people. Mum tried all things holistic-naturopaths, different food diets, dieticians, oh and the potions!!...I recall a family holiday to Yeppoon and amongst snorkeling and boom-netting, we also visited an iridologist. She sent us home with a HUGE bottle of aloe vera juice and chlorophyll! As a 10 year old trying to stomach this was just awful!It wasn’t long after this that I had my first Endoscopy and Colonoscopy. I can vividly remember as a 10-11 year old driving with Mum to Buderim to have something unknown and slightly scary done to me. The 'preparation' is something you never forget and never gets better, no matter how many times you have one...starting a few days before, with a low fibre diet and then the day before…drinking about 3 litres of Fleet…a liquid that can only be described as tasting like goat spit and makes you gag with each swallow!
I recall sitting in the waiting area with my hospital gown on, the ones that tie up at the back, no undies on, feeling very vulnerable. The rest is a blur.
I was diagnosed with Ulcerative Colitis. An inflammatory bowel disease that affects the lining of the bowel wall and rectum. I was started straight away on a high dose Prednisone (a type of steroid that quickly attacks inflammation) and salazopyrin (which belongs to the anti-inflammatory group of drugs).
As a child all you want is to fit in and be ‘normal’ but there was no chance of this now. One of the side effects of Prednisone is fluid retention and weight gain. I went from being a scrawny kid to feeling like a puffer fish.
Being such a naïve child I guess I didn’t really know what all this meant-Ulcerative Colitis (UC).
I knew I had to take tablets everyday and supplements that mum felt may help and that if I started going to the bathroom too often then I would be put back on the stuff that made my face fat.
I hit high school and loved it. I had a lot of friends and remember flitting around different groups of people at lunch. I met my husband and some very wonderful people still in my life today there. I graduated having been Vice-Captain and my best friend as School Captain.
I think for most of the time the UC remained fairly controlled. I had flares up I don’t really remember it having much impact on my life. I danced, played softball, learnt the organ/piano, got my first job at the local newsagent and really enjoyed my school days.
It was around the age of 15-16 that I was referred on from my specialist based at Buderim to the Irritable Bowel Disease (IBD) team at the RBWH in Brisbane. The specialist there had treated my Nana and another family member for their IBD.
I wasn’t responding to my medication anymore and after more colonoscopies, it showed that the inflammation was no longer just affecting the lining of the bowel, but the thickness of the bowel wall too…I now had Crohn’s disease.
Me (with my big bro) just before UC diagnosis
And after UC diagnosis, on Prednisone
Until next time.... xo
Wednesday, 20 June 2012
The Younger Years - Part 1
I have very fond memories of my childhood. Growing up, we lived out of town on 10 acres. My older brother and I spent days swimming in the dam, setting traps for lobbys and enjoying as much of the outdoors as we could.
When I sat down to right this post, so many little memories came popping back.
I remember sneaking to the fridge to scrape the fresh cream off the bucket of milk that Dad had gotten from our cow Goldie. I remember not caring if chook poop squished between my toes as I did my afternoon chores of collecting the eggs. I realise how lucky I was to have so many rich experiences. We never visited a petting zoo-we practically had one at home. From seeing a calf being pushed into this world, wet and gooey and watch it take its first incredibly wobbly steps to helping chicks peck their way out of their eggs and feel their soft fluffiness on my cheek. I can also tell you that chooks really CAN run around headless!!! We grew up knowing bon-fires, camping, fishing, wading in flood waters as the weir overflowed, catching tadpoles, freedom and respect for our parents. So many of these things I want for our son.
When it came to school I loved it. Our primary school was small. About 60 kids all up and everybody knew everybody. We would ride our bikes down to the corner and leave them in the gutter while we waited for the bus. Winter and rainy days were the worst-not because of the cold or rain, but because of the leeches that flicked up off the road! I made my first friend on that bus. She had the longest hair I had ever seen, a thick fringe cut to her eyebrows and as I recently told her-she is my oldest friend!
As much as I had such a wonderful childhood, there were other bits that certainly weren't as fun. Constant trips to the bathroom, diarrhea, stomach pains coupled with my Mum's quest to find out what was 'wrong' with her daughter….
Until next time, take care x
When I sat down to right this post, so many little memories came popping back.
I remember sneaking to the fridge to scrape the fresh cream off the bucket of milk that Dad had gotten from our cow Goldie. I remember not caring if chook poop squished between my toes as I did my afternoon chores of collecting the eggs. I realise how lucky I was to have so many rich experiences. We never visited a petting zoo-we practically had one at home. From seeing a calf being pushed into this world, wet and gooey and watch it take its first incredibly wobbly steps to helping chicks peck their way out of their eggs and feel their soft fluffiness on my cheek. I can also tell you that chooks really CAN run around headless!!! We grew up knowing bon-fires, camping, fishing, wading in flood waters as the weir overflowed, catching tadpoles, freedom and respect for our parents. So many of these things I want for our son.
When it came to school I loved it. Our primary school was small. About 60 kids all up and everybody knew everybody. We would ride our bikes down to the corner and leave them in the gutter while we waited for the bus. Winter and rainy days were the worst-not because of the cold or rain, but because of the leeches that flicked up off the road! I made my first friend on that bus. She had the longest hair I had ever seen, a thick fringe cut to her eyebrows and as I recently told her-she is my oldest friend!
As much as I had such a wonderful childhood, there were other bits that certainly weren't as fun. Constant trips to the bathroom, diarrhea, stomach pains coupled with my Mum's quest to find out what was 'wrong' with her daughter….
Until next time, take care x
Monday, 11 June 2012
I'm Blogging!
It seems everyone is doing it these day, whether it's as a 'release', an outlet, for therapy, for exposure or just because. So here I am. I'm blogging! I have no idea how to add details in the 'About Me' tab or what these gadgets or widgets mean but I'm sure I will work it out along the way!
During a lazy lunch with some beautiful friends in which I was re-telling the details of my latest flare (more on that later), it was put to me that it might be time to 'sexy-up' Crohn's and start a blog! So here it is. I want this blog to be a place to tell my personal journey, a place for me to talk about me and my experience with Crohn's Disease and most importantly get the message out there that it is ok to talk about inflammatory bowel disease and not something that needs to be swept under the carpet.
I have Ileocolonic and perianal Crohnn's Disease. A chronic inflammatory bowel disease. It primarily causes abdominal pain, diarrhoea (which may be bloody if inflammation is at its worst), vomiting and weight loss. It may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration.
This is a disease that cannot be made 'prety' with pink ribbon, breasts, bras or butterflies, but it is real and affects males and females at a rate of 5 in 100,000 people. Occasionally it can affect more than one member of a family. Both adults and children may have Crohn's disease, but there are peaks of incidence around 25 and 65 years of age.
Talk to any mum of a child in nappies and they will be able to re-tell all the in's and outs of their little ones bowel movements from the moment they were born. For some reason society can accept this kind of conversation but is completely repulsed by any sort of talk about their own bowel habits. We are extremely embarrassed by something that is firstly out of our control and secondly done by every single person (including the Queen!) on this earth! I'm not saying that we all need to divulge these details to each other on a regular basis but to know that it is ok to discuss these issues with with supportive friends or family if you need to. Nobody should suffer in silence.
I have lived with Crohn's most of my life and will continue to post about my journey and current prognosis. My goal is to get awareness out there about the disease. Early detection means getting the treatment and support you need.
Until next time...
Jem xo
During a lazy lunch with some beautiful friends in which I was re-telling the details of my latest flare (more on that later), it was put to me that it might be time to 'sexy-up' Crohn's and start a blog! So here it is. I want this blog to be a place to tell my personal journey, a place for me to talk about me and my experience with Crohn's Disease and most importantly get the message out there that it is ok to talk about inflammatory bowel disease and not something that needs to be swept under the carpet.
I have Ileocolonic and perianal Crohnn's Disease. A chronic inflammatory bowel disease. It primarily causes abdominal pain, diarrhoea (which may be bloody if inflammation is at its worst), vomiting and weight loss. It may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration.
This is a disease that cannot be made 'prety' with pink ribbon, breasts, bras or butterflies, but it is real and affects males and females at a rate of 5 in 100,000 people. Occasionally it can affect more than one member of a family. Both adults and children may have Crohn's disease, but there are peaks of incidence around 25 and 65 years of age.
Talk to any mum of a child in nappies and they will be able to re-tell all the in's and outs of their little ones bowel movements from the moment they were born. For some reason society can accept this kind of conversation but is completely repulsed by any sort of talk about their own bowel habits. We are extremely embarrassed by something that is firstly out of our control and secondly done by every single person (including the Queen!) on this earth! I'm not saying that we all need to divulge these details to each other on a regular basis but to know that it is ok to discuss these issues with with supportive friends or family if you need to. Nobody should suffer in silence.
I have lived with Crohn's most of my life and will continue to post about my journey and current prognosis. My goal is to get awareness out there about the disease. Early detection means getting the treatment and support you need.
Until next time...
Jem xo
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