- Joined
- Jul 10, 2008
- Messages
- 57
Hi, as the title says, My name is Rob and I have Crohns Disease.
My story starts back in 1997 when I was in my first year of High School (Year 7), I started experiencing really bad stomach pains but I just put it down to a stomach bug at the time but as the pains kept coming and got worse I found myself having to atleast sit down when I had the pain, I told my parents I was having these pains but they just put it down to a nervous stomach about starting High School and prettymuch told me to get my butt into school, they year went on and the pains got worse and I was complaining about it more and more but then my parents and my school tried putting it down to School Phobia! Basically saying they didn't beleive me and I was just trying to get off school. Fast forward to my second year of High School (Year 8) things were getting so bad that once I arrived at school on the bus, I just crossed the road and got on the next bus home to go curl up on my bed in pain! By the time I got home both parents were at work so didn't know a thing about it untill near the end of my second year when the school decided to question them about my numerous absences, nearly 2 years on and they finally take notice and my parents take me to our doctor who straight away said to get me into hospital for tests, I was in the hospital for about a week when they finally diagnosed me with Crohns Disease and told us all the oh so lovely details of the disease and that I will be on medication for the rest of my life because there is no cure and to be prepared for life to get somewhat more difficult.
The next 6 weeks were spent in hospital on a purely liquid diet (Elemental 028 Extra) where I was fed via a tube going up my nose and down into my stomach and hooked up to a pump over night. after the 6 weeks they were happy with my progress and let me go home but still on the liquid diet, a much smaller/portable pump and new medication, I was on this for a good few months before they let me slowly start eating again, they were happy I was in 'remission' and the tube was removed.
The years went on with small flare up after small flare up and new medication after new medication trying to find one that actually worked for me for any decent amount of time, this carried on up untill recently in early December 2007 when I had my worst flare up to date, I had no appetite, lost a rediculous amount of weight to the point that they had to take me into hospital and put me on the liquid diet again in an attempt to get my weight back up and stop me getting very ill, I was only in hospital for 2 weeks this time untill they let me go home again still on the liquid diet untill the end of Feb 2008, the worst part for me was Christmas, Everyone else feasting on Christmas Dinner and numerous other really nice meals over the Christmas period and theres me sat there, smelling and watching everyone else while sipping down a carton of Elemental 028 Extra supposedly Pineapple flavour drink! :ymad:
By the end of Feb 2008 I had managed to force feed myself enough Cartons during the day aswell as the massive feed at night via the tube to put enough weight on for them to let me start eating again and take the tube out!
They then introduced me to a treatment called Infliximab (aka Remicade) I decided to go ahead with it as it was basically my only remaining option apart from an Operation, the first Infusion I had went really well, I was pain free the same day and hadent felt more energized for years! but unfortunately I got ill and it was counteracting the effects of the Infliximab (Remicade) so once I was free from the bug I had they got me in for a second Infusion of Infliximab (Remicade), the rate of the Infusion was No faster than the first but 5 mins into it I had a really bad reaction to it! I was extremely hot, literally went bright red! Went dizzy and couldn't breath! Luckily the nurses were very quick in getting an Oxygen Mask on me and calling the Doctor down, about 15 mins on the Oxygen and I was almost back to normal but they wanted to watch me for a further 2 hours to make sure I was really ok before I went home.
The next week I went in to see my IBD Specialist and I was told about another form of Infliximab (Remicade) called Certolizumab which they were 99% certain I would be fine with because of the slightly different 'ingredients' and the way it's given (2 injections into the fat (if they could find any!) of my stomach so it then slowly gets soaked up by the blood vessels. This seemed to do the trick for a couple of months untill I started getting Pains again along with always running for the toilet etc which brings us to presant day (11 years on) where we have talked about having the operation but only if I'm not going to end up with a bag, which I'm told if the inflamation is still just in the one place it was found in originally and hasnt spread to my large intestine etc will be the case so a couple of days ago I went in for some sort of Blood Radiation Test where they take about 50ml of blood from you, extract the white cells and dose them with radiation and then re-inject a small amount of it into me so the radiated white cells will flock to where the disease is and on the Xray scans will glow like the sun! and show us where it all is. I have to go back next week for the results which will hopefully tell if I can have the Operation.
I've missed out alot about the hassels I've had with work, time off etc etc cause if I ranted about that this post would be atleast twice as long! :lol:
Errrr..... Thanks for reading!
My story starts back in 1997 when I was in my first year of High School (Year 7), I started experiencing really bad stomach pains but I just put it down to a stomach bug at the time but as the pains kept coming and got worse I found myself having to atleast sit down when I had the pain, I told my parents I was having these pains but they just put it down to a nervous stomach about starting High School and prettymuch told me to get my butt into school, they year went on and the pains got worse and I was complaining about it more and more but then my parents and my school tried putting it down to School Phobia! Basically saying they didn't beleive me and I was just trying to get off school. Fast forward to my second year of High School (Year 8) things were getting so bad that once I arrived at school on the bus, I just crossed the road and got on the next bus home to go curl up on my bed in pain! By the time I got home both parents were at work so didn't know a thing about it untill near the end of my second year when the school decided to question them about my numerous absences, nearly 2 years on and they finally take notice and my parents take me to our doctor who straight away said to get me into hospital for tests, I was in the hospital for about a week when they finally diagnosed me with Crohns Disease and told us all the oh so lovely details of the disease and that I will be on medication for the rest of my life because there is no cure and to be prepared for life to get somewhat more difficult.
The next 6 weeks were spent in hospital on a purely liquid diet (Elemental 028 Extra) where I was fed via a tube going up my nose and down into my stomach and hooked up to a pump over night. after the 6 weeks they were happy with my progress and let me go home but still on the liquid diet, a much smaller/portable pump and new medication, I was on this for a good few months before they let me slowly start eating again, they were happy I was in 'remission' and the tube was removed.
The years went on with small flare up after small flare up and new medication after new medication trying to find one that actually worked for me for any decent amount of time, this carried on up untill recently in early December 2007 when I had my worst flare up to date, I had no appetite, lost a rediculous amount of weight to the point that they had to take me into hospital and put me on the liquid diet again in an attempt to get my weight back up and stop me getting very ill, I was only in hospital for 2 weeks this time untill they let me go home again still on the liquid diet untill the end of Feb 2008, the worst part for me was Christmas, Everyone else feasting on Christmas Dinner and numerous other really nice meals over the Christmas period and theres me sat there, smelling and watching everyone else while sipping down a carton of Elemental 028 Extra supposedly Pineapple flavour drink! :ymad:
By the end of Feb 2008 I had managed to force feed myself enough Cartons during the day aswell as the massive feed at night via the tube to put enough weight on for them to let me start eating again and take the tube out!
They then introduced me to a treatment called Infliximab (aka Remicade) I decided to go ahead with it as it was basically my only remaining option apart from an Operation, the first Infusion I had went really well, I was pain free the same day and hadent felt more energized for years! but unfortunately I got ill and it was counteracting the effects of the Infliximab (Remicade) so once I was free from the bug I had they got me in for a second Infusion of Infliximab (Remicade), the rate of the Infusion was No faster than the first but 5 mins into it I had a really bad reaction to it! I was extremely hot, literally went bright red! Went dizzy and couldn't breath! Luckily the nurses were very quick in getting an Oxygen Mask on me and calling the Doctor down, about 15 mins on the Oxygen and I was almost back to normal but they wanted to watch me for a further 2 hours to make sure I was really ok before I went home.
The next week I went in to see my IBD Specialist and I was told about another form of Infliximab (Remicade) called Certolizumab which they were 99% certain I would be fine with because of the slightly different 'ingredients' and the way it's given (2 injections into the fat (if they could find any!) of my stomach so it then slowly gets soaked up by the blood vessels. This seemed to do the trick for a couple of months untill I started getting Pains again along with always running for the toilet etc which brings us to presant day (11 years on) where we have talked about having the operation but only if I'm not going to end up with a bag, which I'm told if the inflamation is still just in the one place it was found in originally and hasnt spread to my large intestine etc will be the case so a couple of days ago I went in for some sort of Blood Radiation Test where they take about 50ml of blood from you, extract the white cells and dose them with radiation and then re-inject a small amount of it into me so the radiated white cells will flock to where the disease is and on the Xray scans will glow like the sun! and show us where it all is. I have to go back next week for the results which will hopefully tell if I can have the Operation.
I've missed out alot about the hassels I've had with work, time off etc etc cause if I ranted about that this post would be atleast twice as long! :lol:
Errrr..... Thanks for reading!
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