Thanks for giving me the chance to post. This is my first post here and thus it's long - I couldn't find anywhere more appropriate to do so, so please place it elsewhere if need be.
About a month ago I was on one of my "usual" day long vomiting binges (unexplained at the time) ... only this time the accompanying abdominal pain didn't abate.
I've developed a strong threshold for abdominal pain over the years, having passed kidney stones on several occasions.
I called my wife and she came home and convinced me to go to the emergency room.
I limped into the emergency room with severe abdominal pain ... something I've grow accustomed to over my lifetime. It was a surprise to me when after I'd been given morphine and stabilized just enough to absorb some information that a surgeon arrived in front of me to inform me I needed emergency surgery.
"We're going to take out your intestines and see what's salvageable. There's a chance when you wake up you'll have a stoma or a colostomy bag. We really won't know till we get in there. Please sign these papers."
My wife was with me. The surgeon looked at me as if I was being difficult as I silently looked at the papers.
"Feel free to contact anyone you know in the medical field if that would help."
I called my wife's mother, a former nurse ... a contacted a friend of mine who is an orthopedic surgeon (I teach he and his son chess). They both told me that I would indeed need to have the procedure done as the blockage needed to be removed, or else.
9 inches of my small intestine was removed and I spent 6 days in hospital recovering after that ...
The surgeon team's "working diagnosis" was IBD and the Gastro's diagnosis (in under 3 minutes flat) was Crohn's.
I've suffered from severe abdominal pain for about 20 years now ... I'm 33 years old. Only now is any clarification arising as to the actual culprit.
I've also suffered from severe restless legs syndrome since I was a child, which I've read is another side effect of Crohn's.
I've looked and felt sick for a number of years now ... my iron levels have steadily decreased along with my other vitamin absorption rates.
My GP watched me steadily decline with a happy grin and a reassurance over the months that it was all just indigestion ... he told me to take Gaviscon (which in Australia is the equivalent of Mylanta, etc.) He assured me that the level of pain I was enduring was normal ... I had eaten the wrong thing, it was indigestion.
I'd been showing up on a regular basis with complaints of never ending vomiting, headaches, blood in my stool, etc. None of this added up to him apparently, a CT scan was never ordered. I asked for an ultrasound on my own, being suspicious of kidney stones ... it came back clear. If only I'd asked for a CT scan.
Nobody ever really believed me or understood the level of pain I was in ... and apparently nobody understood the level of pain my cousin was in either. He was 16 years old, diagnosed UC ... he suicided a few months ago after a long battle with this illness.
I think often now about the bizarre fate in all of this ... that we shared a related condition, that I could have mentored/helped him, that I even work in mental health ...
I'm lucky in that I was older than him. I work as a therapist; I've been able to battle the emotional and psychological damage to the best of my ability.
I've yet to be put on any medication - I have an appointment with my Gastro again in March. I'll be looking for a new GP in the coming days ...
The mix of emotions I'm feel each day are as various as the symptoms themselves. I get angry when I think about the fact nobody helped me figure this out before ... when I think about the years of pain.
I get scared when I think about the fact that not much is known about this and I feel weird sensations during the day.
I feel lonely when I realize nobody seems to really understand how difficult it is for me to go to work or even survive a midst all this. I feel shock thinking about everything that's transpired in such a short time frame.
My current symptoms are various and somewhat predictable, but they're less disturbing now that I know I'm not just "crazy" or suffering from some mystery illness.
I get stabbing pains in my abdomen still (nothing severe, just little pokes down there ... reminders or echos of a much more horrendous pain). I get nauseous sometimes.
Every day at a given time I'll go through an hour or so of hot flashes and physical weakness.
The story is, obviously, much more robust and somber than this brief fact article can offer (as are most of the other stories here I assume) ... I just thought I would begin with this post, just to begin somewhere.
Uncertainty is a horrible thing ... that's something I've known to be true as a psychologist working in a crisis center. It drives most anxiety disorders I help people with. I admire all of you for dealing with this and helping each other out here.
If anyone wants to PM me to ask anything mental health related please don't hesitate ... I would like to offer anything I can.
Nice to meet you all. :smile:
About a month ago I was on one of my "usual" day long vomiting binges (unexplained at the time) ... only this time the accompanying abdominal pain didn't abate.
I've developed a strong threshold for abdominal pain over the years, having passed kidney stones on several occasions.
I called my wife and she came home and convinced me to go to the emergency room.
I limped into the emergency room with severe abdominal pain ... something I've grow accustomed to over my lifetime. It was a surprise to me when after I'd been given morphine and stabilized just enough to absorb some information that a surgeon arrived in front of me to inform me I needed emergency surgery.
"We're going to take out your intestines and see what's salvageable. There's a chance when you wake up you'll have a stoma or a colostomy bag. We really won't know till we get in there. Please sign these papers."
My wife was with me. The surgeon looked at me as if I was being difficult as I silently looked at the papers.
"Feel free to contact anyone you know in the medical field if that would help."
I called my wife's mother, a former nurse ... a contacted a friend of mine who is an orthopedic surgeon (I teach he and his son chess). They both told me that I would indeed need to have the procedure done as the blockage needed to be removed, or else.
9 inches of my small intestine was removed and I spent 6 days in hospital recovering after that ...
The surgeon team's "working diagnosis" was IBD and the Gastro's diagnosis (in under 3 minutes flat) was Crohn's.
I've suffered from severe abdominal pain for about 20 years now ... I'm 33 years old. Only now is any clarification arising as to the actual culprit.
I've also suffered from severe restless legs syndrome since I was a child, which I've read is another side effect of Crohn's.
I've looked and felt sick for a number of years now ... my iron levels have steadily decreased along with my other vitamin absorption rates.
My GP watched me steadily decline with a happy grin and a reassurance over the months that it was all just indigestion ... he told me to take Gaviscon (which in Australia is the equivalent of Mylanta, etc.) He assured me that the level of pain I was enduring was normal ... I had eaten the wrong thing, it was indigestion.
I'd been showing up on a regular basis with complaints of never ending vomiting, headaches, blood in my stool, etc. None of this added up to him apparently, a CT scan was never ordered. I asked for an ultrasound on my own, being suspicious of kidney stones ... it came back clear. If only I'd asked for a CT scan.
Nobody ever really believed me or understood the level of pain I was in ... and apparently nobody understood the level of pain my cousin was in either. He was 16 years old, diagnosed UC ... he suicided a few months ago after a long battle with this illness.
I think often now about the bizarre fate in all of this ... that we shared a related condition, that I could have mentored/helped him, that I even work in mental health ...
I'm lucky in that I was older than him. I work as a therapist; I've been able to battle the emotional and psychological damage to the best of my ability.
I've yet to be put on any medication - I have an appointment with my Gastro again in March. I'll be looking for a new GP in the coming days ...
The mix of emotions I'm feel each day are as various as the symptoms themselves. I get angry when I think about the fact nobody helped me figure this out before ... when I think about the years of pain.
I get scared when I think about the fact that not much is known about this and I feel weird sensations during the day.
I feel lonely when I realize nobody seems to really understand how difficult it is for me to go to work or even survive a midst all this. I feel shock thinking about everything that's transpired in such a short time frame.
My current symptoms are various and somewhat predictable, but they're less disturbing now that I know I'm not just "crazy" or suffering from some mystery illness.
I get stabbing pains in my abdomen still (nothing severe, just little pokes down there ... reminders or echos of a much more horrendous pain). I get nauseous sometimes.
Every day at a given time I'll go through an hour or so of hot flashes and physical weakness.
The story is, obviously, much more robust and somber than this brief fact article can offer (as are most of the other stories here I assume) ... I just thought I would begin with this post, just to begin somewhere.
Uncertainty is a horrible thing ... that's something I've known to be true as a psychologist working in a crisis center. It drives most anxiety disorders I help people with. I admire all of you for dealing with this and helping each other out here.
If anyone wants to PM me to ask anything mental health related please don't hesitate ... I would like to offer anything I can.
Nice to meet you all. :smile:
