Well I've been encouraged to post my story for other users to see. I plan to hang around these forums and help and contribute in any way I can. So to begin.
My name is James....and I've got Crohn's disease....
What a revelatation eh?! Now that's out of the way.
Basically I'm a Politics graduate, I went to Leeds University. After University I could not find a job for ages due to the economic situation, eventually a friend got me an office job. The worse kind of office job. Data entry surrounded by 50 year old divorcees whose lust for life died when I was just a glint in my father's eye.Still it was something. I slaved away.
I became angry. I was already angry to be honest. My job,my friends suffering,world suffering,my colleagues draining their lives away year on year in that office(some had been there for 30 years). Eventually in this summer of year my declining physical state started to become tangible. I was pale, I am already quite thin and tall (6"5) but friends even began to comment on it. And it just continued to worsen.
Meanwhile at work my frustration and stress continued to boil up. I can remember getting emails at work and feeling sudden jolts of pain in anguish over their content. Then there was the breathlessness, and the slight acid refluxes. Then came the tiredness. The nightsweats. Next thing I knew i was on the toliet 5-8 times a day with varying consistancies of stool. At this point I saw my doctor. Rather foolishly where I come from we have a general upbeat philosophy 'Be rate!' as in 'Everything will be fine'(Its Yorkshire - were an odd bunch). And I'm afraid that's the attitude I took to these symptoms at first - I thought probably like most that it was a passing thing.
My doctor (predictably) diagnosed IBD. I was put on anti spasmodics but they did little to aide things. A few blood tests later I was diagnosed with aneamia - I was pale,tied,and constantly felt cold. Classic Anemic symptoms. But it took further blood tests to kick things into action. My GP wanted a blood test to test for Celiac's disease which my mother has. Its probably where I get my Crohn's from - some kind of mutation I'd would have thought. The Celiac's was negative but that specific blood test raised alarms elsewhere.
One Wednesday night,a week after giving blood,I recieved a phone call from the doctor from the Endocscopy Unit at the local hospital.
'You need to come into hospital tomorrow morning, you're a lot iller than you think you are'
'Its only because of your youth that you haven't already collapsed'
It seemed my routine of coping with my Crohn's - excessive sleep and rest with a healthy diet was helping me just keep my head above the water but eventually I would have succumbed.
My doctor was brilliant. Dr Whitman. An American Professor who works out of Wakefield's Pinderfield Hospital in England. Despite the next day being his day off he said he couldn't live with himself if he made me wait the 25 days minimum to see a specialist. And so the next day I was there and in two days Dr Whitman persuaded me and guided me through a sigmoid colonoscopy,a camera down my throat + biopsies,X Rays,Blood Tests and a CT scan (in two days of him ringing me!). I recieved the phone call on Wednesday night. By Friday afternoon I had 5 diagnostic tests and a big bag of drugs to kick the bleep out of my suspected Crohn's. All this treatment except the drugs (£30 for three months worth) were free. God bless the NHS.
Around a week before I recieved the phone call I had already handed my notice in at work - I had saved up enough money to go travelling in the far East and intended to get the hell out of the place that I saw as a living hell. When my boss asked me why I was leaving I said 'I'm pretty sure this job is making me ill'. 'Nice work Sherlock' is probably what you're thinking but in an economic crisis its difficult to walk away from a job when there are so many others desperate for one. Anyway Dr Whitman's phone call vindicated my decison to leave.
So I had no work,lots of drugs and a bed to lie in day after day and watch the clouds roll by and see the late summer sun filter into the second spring of Autumn. Where every dying every leaf is a new flower.
The first week was agony. But by the second I was feeling stronger and the good will of my family and friends was beginnig to make me feel invincible. To this day I affirm that being diagnosed with Crohn's has improved my life. I have strengthened my relationship with my parents and all my close friends and I have learnt what suffering is. But I have also have the fortune/misfortune to understand how insignificant my own suffering is to those others who are in hospital. Some of the people you see in there,do not poesess the ability to manage their conditions or have the youth to overcome them and there suffering made me realize how important it was that I harnessed what health I had to improve my life.
During my University years I had an increasing interest in philosophy and I was steadily making my way through certain authors, favourites being Camus,Nietzsche and De Montaigne. Recently however i have come across the works of Doestevsky and his work and life are the greatest inspiration for me. I highly recommend them as a source for those seeking inspiration as to how to continue with the dreaded spectre of a lifelong illness. He has this whole thing about purification through suffering. The man was a genius. Anyway I digress.
The other day I had a colonoscopy(and biopsies) that confirmed Crohn's in four sections of my large and small bowel. Today I had an MRI scan too which was kinda fun. I meet up with Dr Whitman in the next week/fortnight or so for the results.
At the moment I'm on
Pentasa (8 a day)
Predisolone (4 a day)
Adcal Calcium Tablets(to protect my bones - 2 a day)
and one Lansaprazole every morning before breakfast.
Eventually the plan is to get me on Remicade ASAP. Dr Whitman said they he would have put me straight on Reimcade had I not been so damaged by the Crohn's - he said he couldnt wait the neccesary time to see whether the remicade is effective given the state I was in. So it was the traditional top down route of calming the symptoms down first before moving onto the biologics that was opted for.
Eventually I want to go travelling in the New Year and have some time in the Sun. Unfortunatley due to my anemia I could not feel the warmth of this year's summer. At a friend's BBQ my friend's were in shorts and T-shirts whilst I shivered wearing 7 layers.
I find unemployment and inactivity a joy. I read,I write, I play my guitar,listen to music,find new music,find new inspiration,gorge myself on food(I'm so thin I don't have to worry about cals), I hang out with friends. Its brilliant.
I feel kind of worried that I should be so upbeat with so many people suffering on this website. Trust me I suffer too,but I've found the transcendental beauty of this world and its people as the greatest antitdote. And although my story is normal and boring I'm glad it is I've read some terrible accounts of pain on here and my heart goes out to those who are suffering more than me at this moment.Maybe this jumble of words I've written can be of some help, and even if it isn't this website definetly is. The worse thing about this is the lonliness of a disease that often has no external appearance. And that's me.
If you've read all this,
Thank you
I am.
Faithfully yours,
James
"Accept suffering and achieve atonement through it — that is what you must do"
x
My name is James....and I've got Crohn's disease....
What a revelatation eh?! Now that's out of the way.
Basically I'm a Politics graduate, I went to Leeds University. After University I could not find a job for ages due to the economic situation, eventually a friend got me an office job. The worse kind of office job. Data entry surrounded by 50 year old divorcees whose lust for life died when I was just a glint in my father's eye.Still it was something. I slaved away.
I became angry. I was already angry to be honest. My job,my friends suffering,world suffering,my colleagues draining their lives away year on year in that office(some had been there for 30 years). Eventually in this summer of year my declining physical state started to become tangible. I was pale, I am already quite thin and tall (6"5) but friends even began to comment on it. And it just continued to worsen.
Meanwhile at work my frustration and stress continued to boil up. I can remember getting emails at work and feeling sudden jolts of pain in anguish over their content. Then there was the breathlessness, and the slight acid refluxes. Then came the tiredness. The nightsweats. Next thing I knew i was on the toliet 5-8 times a day with varying consistancies of stool. At this point I saw my doctor. Rather foolishly where I come from we have a general upbeat philosophy 'Be rate!' as in 'Everything will be fine'(Its Yorkshire - were an odd bunch). And I'm afraid that's the attitude I took to these symptoms at first - I thought probably like most that it was a passing thing.
My doctor (predictably) diagnosed IBD. I was put on anti spasmodics but they did little to aide things. A few blood tests later I was diagnosed with aneamia - I was pale,tied,and constantly felt cold. Classic Anemic symptoms. But it took further blood tests to kick things into action. My GP wanted a blood test to test for Celiac's disease which my mother has. Its probably where I get my Crohn's from - some kind of mutation I'd would have thought. The Celiac's was negative but that specific blood test raised alarms elsewhere.
One Wednesday night,a week after giving blood,I recieved a phone call from the doctor from the Endocscopy Unit at the local hospital.
'You need to come into hospital tomorrow morning, you're a lot iller than you think you are'
'Its only because of your youth that you haven't already collapsed'
It seemed my routine of coping with my Crohn's - excessive sleep and rest with a healthy diet was helping me just keep my head above the water but eventually I would have succumbed.
My doctor was brilliant. Dr Whitman. An American Professor who works out of Wakefield's Pinderfield Hospital in England. Despite the next day being his day off he said he couldn't live with himself if he made me wait the 25 days minimum to see a specialist. And so the next day I was there and in two days Dr Whitman persuaded me and guided me through a sigmoid colonoscopy,a camera down my throat + biopsies,X Rays,Blood Tests and a CT scan (in two days of him ringing me!). I recieved the phone call on Wednesday night. By Friday afternoon I had 5 diagnostic tests and a big bag of drugs to kick the bleep out of my suspected Crohn's. All this treatment except the drugs (£30 for three months worth) were free. God bless the NHS.
Around a week before I recieved the phone call I had already handed my notice in at work - I had saved up enough money to go travelling in the far East and intended to get the hell out of the place that I saw as a living hell. When my boss asked me why I was leaving I said 'I'm pretty sure this job is making me ill'. 'Nice work Sherlock' is probably what you're thinking but in an economic crisis its difficult to walk away from a job when there are so many others desperate for one. Anyway Dr Whitman's phone call vindicated my decison to leave.
So I had no work,lots of drugs and a bed to lie in day after day and watch the clouds roll by and see the late summer sun filter into the second spring of Autumn. Where every dying every leaf is a new flower.
The first week was agony. But by the second I was feeling stronger and the good will of my family and friends was beginnig to make me feel invincible. To this day I affirm that being diagnosed with Crohn's has improved my life. I have strengthened my relationship with my parents and all my close friends and I have learnt what suffering is. But I have also have the fortune/misfortune to understand how insignificant my own suffering is to those others who are in hospital. Some of the people you see in there,do not poesess the ability to manage their conditions or have the youth to overcome them and there suffering made me realize how important it was that I harnessed what health I had to improve my life.
During my University years I had an increasing interest in philosophy and I was steadily making my way through certain authors, favourites being Camus,Nietzsche and De Montaigne. Recently however i have come across the works of Doestevsky and his work and life are the greatest inspiration for me. I highly recommend them as a source for those seeking inspiration as to how to continue with the dreaded spectre of a lifelong illness. He has this whole thing about purification through suffering. The man was a genius. Anyway I digress.
The other day I had a colonoscopy(and biopsies) that confirmed Crohn's in four sections of my large and small bowel. Today I had an MRI scan too which was kinda fun. I meet up with Dr Whitman in the next week/fortnight or so for the results.
At the moment I'm on
Pentasa (8 a day)
Predisolone (4 a day)
Adcal Calcium Tablets(to protect my bones - 2 a day)
and one Lansaprazole every morning before breakfast.
Eventually the plan is to get me on Remicade ASAP. Dr Whitman said they he would have put me straight on Reimcade had I not been so damaged by the Crohn's - he said he couldnt wait the neccesary time to see whether the remicade is effective given the state I was in. So it was the traditional top down route of calming the symptoms down first before moving onto the biologics that was opted for.
Eventually I want to go travelling in the New Year and have some time in the Sun. Unfortunatley due to my anemia I could not feel the warmth of this year's summer. At a friend's BBQ my friend's were in shorts and T-shirts whilst I shivered wearing 7 layers.
I find unemployment and inactivity a joy. I read,I write, I play my guitar,listen to music,find new music,find new inspiration,gorge myself on food(I'm so thin I don't have to worry about cals), I hang out with friends. Its brilliant.
I feel kind of worried that I should be so upbeat with so many people suffering on this website. Trust me I suffer too,but I've found the transcendental beauty of this world and its people as the greatest antitdote. And although my story is normal and boring I'm glad it is I've read some terrible accounts of pain on here and my heart goes out to those who are suffering more than me at this moment.Maybe this jumble of words I've written can be of some help, and even if it isn't this website definetly is. The worse thing about this is the lonliness of a disease that often has no external appearance. And that's me.
If you've read all this,
Thank you
I am.
Faithfully yours,
James
"Accept suffering and achieve atonement through it — that is what you must do"
x
