M
MarkRattray
Guest
Hello Everyone,
As you can guess I have been diagnosed with Chron's. Here is my story so far.
It all starts 18 years ago, the pain in my stomach started slowly enough, I was a tough 15 year old as was brought up that if you are not dying you don't complain about it.
Well after 3 months of the pain getting worse and worse and my attendence at school getting lower and lower, I was finally dragged to the hospital by my grandmother.
The doctor asked alot of questions and then sceduled a endoscopy for the following week. fast forward another week of pain and basically being bed ridden, ( you don't want to move when you are in that much pain.) I passed the test and I passed with a diagnosis of ulcers, go home and take these pills.
So I went home and toke the pills, to my suprise there was no change, the pain continued and to my disbelief actually got worse, now I stopped eating completly just drinking jus and the vitamins that my grandmother force fed me. (Thanks Grandma.)
But after another week and still no improvement, I was taken to the emergency room. The doctor who saw me hospitalised me and I stayed there for 1 1/2 months not eating ( obviously, I was on serum, but man do you get hungry and you still loose weight ). I passed soo many tests that I won't go into details but suffice to say that endoscopies and colonoscopies, x-rays, sonograms, etc.. I know them well.
After a month and a half of enduring that, with the pain still in my stomach so bad that I believed that it was killing me, and low and behold it started to. I began hemmoraging internally.
At this point the doctors grew intelligence and realised that they weren't smart enough to help me. ( in my experience doctors hate to say " I don't know " ) they air lifted me the St. Justine's childrens hospital in Montreal. ( a 9 hour drive from where I lived. )
I arrived in Montreal and St. Justine's began to diagnos me all over again. ( because checking and believing the test that had already been done on me would have been silly ). I underwent a barrage of tests again. (all the same ones that I had already gone through.) all the while getting worse, I was not bleeding enough internally to get too worried yet so the doctors kept me off food as the pain became unbearable after food, and continued the tests.
Now lets put what has happened so far, I was 6 foot 2 at that age and was now weighting 90 pounds, I was bed ridden for so long that my muscles had atrophied to the point that I could not walk without falling down. (I looked terrible)
And now after 2 weeks at St. Justines things took a serious turn for the worse, the bleed went into overdrive, I was given multiple transfusion of blood and plasma, and the medical staff started to panic as they had no idea what was going on. within 3 days they had busted every usable vein in my arms trying to feed the blood into me fast enough to stablize me. at the end of the three days the opened an artery near my collar bone (Left side) to pump blood in me faster because I was no loosing it way too fast. I would litterally fill a toilet 2-3 times a day. and when I say fill, I mean fill.
At this point the doctors came to see me, the artery was not going to hold up much longer and they wanted to know if I had family close that they could call. because they didn't want me to die alone. I was going to bleed out.
A last doctor decided to do a major exploratory surgery to try to find the bleeding and stop it. I was knocked out and cut open, I woke up many hours later to see that I now had a colonostomie ( the bag, this for a fifteen year old is bad enough ) 6 feet less of small intestines and a diagnosis of Chron's. They started me on Purinathol and cortisone.
A month later I was let out of the hospital after physical therepy to help me walk again. 6 months later I had another operation to remove my colonostomie.
and I was good for about 10 years, until a family doctor decided that the medication that the specialist had put me on was not doing anything anymore ( I had been on it for way too long ) told me to stop taking it. ( and stupid me I did. ) well at this point in my life I decided to move to Ottawa, Ontario. But unfortunatly doctors are hard to come by these days so I was feeling ok so I didn't bother with it.
after about a year the pain started to come back, slowly at first then more and more, I was eventually dragged to the hospital by me then GF and Best friend. where they once again hospitalized me. I saw a specialist who started me back on purinathol and cortizone and pain killers.
The painkillers helped but the other pills didn't if I stopped the painkillers I was cramped in a ball not able to move or eat. The specialist then asked what I wanted to do, wait and see if the meds would work ( it had been a month or two and they hadn't so far ) or another operation. I opted for the operation and lost another 3 feet of small intestines.
during my recover I lost my GF, job, apartment. ( What a great experience ) and had to move in with family just to recover. but the sickness has never gone dormant. I returned to my home town and began seeing a specialist there who put me on pentasa and cortizone as well as the purinathol. but I was starting to have pains in my lower back as well. ( now what!!!) well after some checking it seems that all the meds that I have been taking for the last couple of years is now taking its toll on my liver. to try to combat that I was taken off the purinathol.
( guess what came back in full force. ) I decided to move back to a big city to be with a real specialist as the doctors where I was living are more generalist than anything else. So my then new GF and I moved to Montreal.
Finding a Specialist here was easier said than done. I went another year here with no specialist and my sickness getting worse. before I went to a clinic due to pain, depression, etc... The doctore there saved me, he became my family doctor and with her I was able to get a specialist.
That was 2 and a half years ago. the new specialist has me on Humira injections that I have to take every week as well as methotrexate injections that I take once a week. I am on Hydromorph for pain and nexium for acid. I am also on anti depressants to try to keep me sane. ( they are not working ).
The pain continues, the painkillers ( hydromorph ) is the only thing keeping them under control. the injections are a pain in the ass as they are hard to get insurred. and at 3000$ for 2 injections I can't afford to pay them myself.
the injections do help but not with pain, only with other symptoms ( diahrea, blood in the stool, frequency of toilet trips) but the pain is still there.
after the last colonoscopy the specialist says that the chron's is under control but if that were the case wouldn't the pain be gone.
I have to admit that I feel like I am loosing this battle. I have been fighting it now for 18 years and it has taken it's toll. my moral is extremely low, I have lost more jobs than I care to admit. I hate taking painkillers because they numb the pain but they also numb my mind and knock me out. I am a computer tech/data analyst. try to think when you are drugged up.
well that brings everyone up to date on me. I am hear to give advice if I can. I am always open to talk. you can email me anytime.
As you can guess I have been diagnosed with Chron's. Here is my story so far.
It all starts 18 years ago, the pain in my stomach started slowly enough, I was a tough 15 year old as was brought up that if you are not dying you don't complain about it.
Well after 3 months of the pain getting worse and worse and my attendence at school getting lower and lower, I was finally dragged to the hospital by my grandmother.
The doctor asked alot of questions and then sceduled a endoscopy for the following week. fast forward another week of pain and basically being bed ridden, ( you don't want to move when you are in that much pain.) I passed the test and I passed with a diagnosis of ulcers, go home and take these pills.
So I went home and toke the pills, to my suprise there was no change, the pain continued and to my disbelief actually got worse, now I stopped eating completly just drinking jus and the vitamins that my grandmother force fed me. (Thanks Grandma.)
But after another week and still no improvement, I was taken to the emergency room. The doctor who saw me hospitalised me and I stayed there for 1 1/2 months not eating ( obviously, I was on serum, but man do you get hungry and you still loose weight ). I passed soo many tests that I won't go into details but suffice to say that endoscopies and colonoscopies, x-rays, sonograms, etc.. I know them well.
After a month and a half of enduring that, with the pain still in my stomach so bad that I believed that it was killing me, and low and behold it started to. I began hemmoraging internally.
At this point the doctors grew intelligence and realised that they weren't smart enough to help me. ( in my experience doctors hate to say " I don't know " ) they air lifted me the St. Justine's childrens hospital in Montreal. ( a 9 hour drive from where I lived. )
I arrived in Montreal and St. Justine's began to diagnos me all over again. ( because checking and believing the test that had already been done on me would have been silly ). I underwent a barrage of tests again. (all the same ones that I had already gone through.) all the while getting worse, I was not bleeding enough internally to get too worried yet so the doctors kept me off food as the pain became unbearable after food, and continued the tests.
Now lets put what has happened so far, I was 6 foot 2 at that age and was now weighting 90 pounds, I was bed ridden for so long that my muscles had atrophied to the point that I could not walk without falling down. (I looked terrible)
And now after 2 weeks at St. Justines things took a serious turn for the worse, the bleed went into overdrive, I was given multiple transfusion of blood and plasma, and the medical staff started to panic as they had no idea what was going on. within 3 days they had busted every usable vein in my arms trying to feed the blood into me fast enough to stablize me. at the end of the three days the opened an artery near my collar bone (Left side) to pump blood in me faster because I was no loosing it way too fast. I would litterally fill a toilet 2-3 times a day. and when I say fill, I mean fill.
At this point the doctors came to see me, the artery was not going to hold up much longer and they wanted to know if I had family close that they could call. because they didn't want me to die alone. I was going to bleed out.
A last doctor decided to do a major exploratory surgery to try to find the bleeding and stop it. I was knocked out and cut open, I woke up many hours later to see that I now had a colonostomie ( the bag, this for a fifteen year old is bad enough ) 6 feet less of small intestines and a diagnosis of Chron's. They started me on Purinathol and cortisone.
A month later I was let out of the hospital after physical therepy to help me walk again. 6 months later I had another operation to remove my colonostomie.
and I was good for about 10 years, until a family doctor decided that the medication that the specialist had put me on was not doing anything anymore ( I had been on it for way too long ) told me to stop taking it. ( and stupid me I did. ) well at this point in my life I decided to move to Ottawa, Ontario. But unfortunatly doctors are hard to come by these days so I was feeling ok so I didn't bother with it.
after about a year the pain started to come back, slowly at first then more and more, I was eventually dragged to the hospital by me then GF and Best friend. where they once again hospitalized me. I saw a specialist who started me back on purinathol and cortizone and pain killers.
The painkillers helped but the other pills didn't if I stopped the painkillers I was cramped in a ball not able to move or eat. The specialist then asked what I wanted to do, wait and see if the meds would work ( it had been a month or two and they hadn't so far ) or another operation. I opted for the operation and lost another 3 feet of small intestines.
during my recover I lost my GF, job, apartment. ( What a great experience ) and had to move in with family just to recover. but the sickness has never gone dormant. I returned to my home town and began seeing a specialist there who put me on pentasa and cortizone as well as the purinathol. but I was starting to have pains in my lower back as well. ( now what!!!) well after some checking it seems that all the meds that I have been taking for the last couple of years is now taking its toll on my liver. to try to combat that I was taken off the purinathol.
( guess what came back in full force. ) I decided to move back to a big city to be with a real specialist as the doctors where I was living are more generalist than anything else. So my then new GF and I moved to Montreal.
Finding a Specialist here was easier said than done. I went another year here with no specialist and my sickness getting worse. before I went to a clinic due to pain, depression, etc... The doctore there saved me, he became my family doctor and with her I was able to get a specialist.
That was 2 and a half years ago. the new specialist has me on Humira injections that I have to take every week as well as methotrexate injections that I take once a week. I am on Hydromorph for pain and nexium for acid. I am also on anti depressants to try to keep me sane. ( they are not working ).
The pain continues, the painkillers ( hydromorph ) is the only thing keeping them under control. the injections are a pain in the ass as they are hard to get insurred. and at 3000$ for 2 injections I can't afford to pay them myself.
the injections do help but not with pain, only with other symptoms ( diahrea, blood in the stool, frequency of toilet trips) but the pain is still there.
after the last colonoscopy the specialist says that the chron's is under control but if that were the case wouldn't the pain be gone.
I have to admit that I feel like I am loosing this battle. I have been fighting it now for 18 years and it has taken it's toll. my moral is extremely low, I have lost more jobs than I care to admit. I hate taking painkillers because they numb the pain but they also numb my mind and knock me out. I am a computer tech/data analyst. try to think when you are drugged up.
well that brings everyone up to date on me. I am hear to give advice if I can. I am always open to talk. you can email me anytime.
