My gallbladder got into torsion in 2008. Behind the twist, bile comes to a halt, that is called stasis. Next you get life threatening acalculous (no stones) infections and ditto leaks and things keep getting out of hand .
Best described here; http://www.vesalius.com/graphics/cf_quicknotes/qn.asp?VID=808.
Not until 2013 a HIDA scan proved it to be completely dysfunctional and it was taken out.
I never got any treatment at all and had to manage many life threatening episodes alone, because of a variety of challenges that make diagnosis very difficult
1. gallbladdertorsion occurs only twice a year globally, so is very rare hence usually diagnosed postmortem, because a doc can only diagnose a condition he knows.
When I do not know what a mercedes looks like, I would not know I was in one
2. doctors build on what radiologists find and they focus on static problems like stones, infection, cancers, fractures. They would even be unable to detect a sudden change in position of an organ because organs vary between people in size and shape
If a stomach would swell to 3 times normal size and cause pain, radiologist may say; all OK, because, some people happen to have larger stomachs than others.
3. People who had acalculous gallbladder infection have weird immunesystems that cannot produce fever, infectionmarkers and other dramatic things doctors normally go by. Is explained here;
Not until 2013 a HIDA scan proved it to be completely dysfunctional and it was taken out.
I never got any treatment at all and had to manage many life threatening episodes alone, because of a variety of challenges that make diagnosis very difficult
1. gallbladdertorsion occurs only twice a year globally, so is very rare hence usually diagnosed postmortem, because a doc can only diagnose a condition he knows.
When I do not know what a mercedes looks like, I would not know I was in one
2. doctors build on what radiologists find and they focus on static problems like stones, infection, cancers, fractures. They would even be unable to detect a sudden change in position of an organ because organs vary between people in size and shape
If a stomach would swell to 3 times normal size and cause pain, radiologist may say; all OK, because, some people happen to have larger stomachs than others.
3. People who had acalculous gallbladder infection have weird immunesystems that cannot produce fever, infectionmarkers and other dramatic things doctors normally go by. Is explained here;
htttp://www.thurstontalk.com/2012/11/12/gallbladder-problems-with-or-without-stones/
Eg; to diagnose peritonitis, doctors require fever and a dramatically rigid belly, but mine gets tense, not rigid, so I was told to relax my belly or that it was probably filled with stool, while fever knocks you out and allthough with the same illness, without fever you can still function to some extent
4. Normally people die with bile leaks and acalculous infections So the fact that you manage to stay alive is considered solid proof you do not have that. (but I did)
5. From day one I could match what I felt to what was to be seen on the MRI images and asked everyone if that twist could be a torsion ( found it on the internet in 10 minutes) but at least where this transpired ( Holland and Germany) doctors do not appreciate input from the patient, not even when your life is at stake
6. last but not least there is protocol; allthough many studies have proven 65% of people can have bile leaks with little symptoms, in emergency departments high bilirubine is required, hence 75% of people still die of bile (stump) leaks, that are easily cured, due to a delay in diagnosis, because protocol is outdated.
Conclusion; rare conditions are a curse.
Eg; to diagnose peritonitis, doctors require fever and a dramatically rigid belly, but mine gets tense, not rigid, so I was told to relax my belly or that it was probably filled with stool, while fever knocks you out and allthough with the same illness, without fever you can still function to some extent
4. Normally people die with bile leaks and acalculous infections So the fact that you manage to stay alive is considered solid proof you do not have that. (but I did)
5. From day one I could match what I felt to what was to be seen on the MRI images and asked everyone if that twist could be a torsion ( found it on the internet in 10 minutes) but at least where this transpired ( Holland and Germany) doctors do not appreciate input from the patient, not even when your life is at stake
6. last but not least there is protocol; allthough many studies have proven 65% of people can have bile leaks with little symptoms, in emergency departments high bilirubine is required, hence 75% of people still die of bile (stump) leaks, that are easily cured, due to a delay in diagnosis, because protocol is outdated.
Conclusion; rare conditions are a curse.
I was happy to be still alive and did not even expect a full recovery because things had gotten out of hand to this extent, but never expected what actually did happen next.
A wide variety of weird symptoms were explained september 17 when their common denominator showed on an X ray, telling me I was living the exact same nightmare only 10 times worse.
Since now not a tiny gallbladder but the largest and heaviest organ in the belly, the transverse colon, of which I have 2 to make matters worse, got twisted and fell 30 centimers down to land on the bladder.
In hindsight the lower transverse was already down in april, with the upper transverse twisting ( X ray). Upper transverse was halfway down in july, ( MRI) Mid august the ascending colon was partially torn loose by all the weight pulling it down and since then things are no longer managable and the bowels are lumped up in an imploded pile and intermittently obstructed.
On their way down, the large transverses pushed everything in their path aside, crushed and obstructed what used to be where they landed, like small intestines, veins , nerves.
What stayed in the upper belly, like the stomach, got stretched to the max to maintain it's connection to the bowel , while the infected mass keeps pressing , adhering and destroying things, while spreading infection. This gives an idea what pressure on a body can do; http://en.wikipedia.org/wiki/Crushing_%28execution%29
What is of importance is that behind the twist in the colon stasis has already been established by three radiologists, infection as well and even dysfunction, while pain is everywhere.
What is of importance is that behind the twist in the colon stasis has already been established by three radiologists, infection as well and even dysfunction, while pain is everywhere.
Though a prolapsed rectum, just about 10 centimeters long, gets surgically corrected, nothing happens when over 10 meters of bowel have prolapsed, because one is a known condition and mine is not.
This is even worse than a rare condition; it is unprecedented and there is no protocol for unprecedented conditions So again doctors are at a loss as to what to do, while my own gut is strangling me and any minute something can pop, rupture or give in.
When this came to light I was paralyzed with shock , because I have learned what one is up against with rare problems and a weird immunesystem.
Ironically, on the other hand, the knowledge and images gathered during the gallbladder ordeal could help achieve a timely and happy enough ending to this ordeal, that would not have been possible without that episode, as this seems unprecedented
But then I need to timely find a surgeon with an open mind and a lot of guts, who would give me the benefit of the doubt, and would be willing to diagnose me, not on my appearance but on images, and not on protocol but on logic.
Only one problem; I do not know how to make that happen.
some pics.
normal 1997‚ and twisted gallbladder 2012
This X ray finally cracked the case for me, as again, it is easy to match what I feel to what is seen plus it shows the common denominator for all kind of weird, seemingly unrelated symptoms I went through till then.
I could not believe my eyes when I saw it, nor my ears when the radiologist said the exact same things I was told with the gallbladder.; -many people have bowels like that-, compare to; Many people have gallbladders like that.
He added; moreover the transverse moves up and down, that is normal. Gallbladder; gallbladder moves in your tommy; if we do another ultrasound next week the twist will be gone.
But no one ever followed up on that theory; the twist was always there, as is the fallen and imploded colon, it cannot ever get up again, not even when I stand on my head (tried that) because infections have adhered things already.
.
white darts show new position, black darts show previous one Stasis and infection have also been established in the bladder. It cannot be emptied because from one day to the next I do not feel it anymore. It is always extremely full and heavy.
barium enema 1996 Shows double transverse (heriditary) and normal position of bowel.
but can of course be anything, maybe appendix is strangling it.
In right groin contents of small intestine go into the large one. The fallen transverse is pressing on that spot, now both parts of bowl fight each other for same spot, is painful and one is loosing.
july 2013 MRI screenshot showing
transverse is down
something in leg
infection of ascendens duodenum jejenum
fluid collections and coprostasis
in upper right section of belly on all recent images since april a black shape is seen, that has not been properly diagnosed
I was told it could be the stomach , if that would be so, it would have changed place considerably. On one of the above pics it is situated over the lungs, I cannot believe a stomach coud ever go there.
Maybe it is air, escaping through a tear in the peritoneum, that may have gotten there when something tore loose, like the colon of ot;s ligament or the stomach falling down.
short list of symptoms,
- kidney was lowered 15 cm, is painful
- small intestine sticks out every which way causing food to go down like in a pinball machine, is odd, frightening and painful.
- stretched stomach hurts especially when I eat, feels infected
- food adds to problem by adding to weight, no food would also be a problem
- veins under pressure, dizzy, very cold, everything has slowed down, brain, movements. Can hardly walk, get out of breath, palpitations, throbbing. Feels as if something is about to pop, esp the largest vein numbs my feet and neck when under too much pressure.
- full bladder is heavy and dysfunctional , infected, full bowels ditto
- overall a lot of pain, especially in abdomen and back
- appendix problems
