a story about protocol and despair

As you may have seen in a previous blog, in 2008 my gallbladder  got into torsion and behind the twist the bile could not flow (that is called stasis, it  comes to a halt), hence it gets infected over & over again .
The gallbladder just could  not empty itself  because of the twist as was later confirmed by a Hida scan.

Stasis leads to infection, that is acalculous.
Stasis leads to swelling.
My gallbladder sometimes swoll till over 4 times it’s normal size.
This and the infections caused it to leak, many times.

All of this is and was in plain sight on over 6 MRI scans, made over  a period of 4 years, but I never ever got any treatment or care for any of this; 

Some radiologists did see the torsion but deemed it a normal occurrence.
And in spite of the eventually leaking gallbladder I was send home from  emergency departments.

In over 4 years of infection and excruciating pain, I was the only one convinced there was something wrong with the gallbladder from the get go, but this was never confirmed until finally it was taken out.
Then the torsion was established and so much scarring from all the infections I had had to endure  without any care, that the gallbladder was even adhered to omentum, liver, peritoneum and colon transversum.

This article exactly describes my illness and how it developed; 
 http://www.vesalius.com/graphics/cf_quicknotes/qn.asp?VID=808.


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Why did no one help  with such an obvious  problem?  Protocol is the answer.

Radiologists are unable to detect or properly evaluate any change in position of any organ;
1. they review imagery according to protocol and basically just look for stones, fractures, infections and cancer,  while disregarding everything else.
2/ There is a lot of variation in the position, size and shape of almost any organ between people, so they see large and small stomachs , horizontal and vertical ones and so on. 
If your stomach would stretch to 3 times it’s normal size and you would go crazy with pain, radiologists would still state that all is fine, because they saw similar stomachs before in other people.
 3/ Even if old footage can prove your organ s previous  size or shape  that will not help any because they have not learned   a change in position of an organ can be of significance, hence they will deem it insignificant, while, unfortunately, it is not.

Nevertheless, all other doctors build on their findings,
so there is no chance in hell that you will get the help you need.
 
Also emergency departments apply outdated protocol.
Professor Gouma of the university of Amsterdam and many others who did research on the subject, have established that bile can leak for over a year even, before it causes any symptom a doc wil recognize. 
That however, does not mean the leaking bile is harmless! 

But, in spite of all the research and warnings, protocol has not been adjusted. 
All emergency departments, in order to prove a leak,  demand high bilirubine , that only occurrs in maybe 35% of cases, so 65% of patients are send home to die, that is , not accidentally, a percentage consistent with the percentage of people who die of bile leaks , namely 65-75%, in almost all cases due to a delay in diagnosis, as leaks are fairly easy to treat.

When finally I began to understand protocol was killing me,  attempts to communicate and make any doc forget protocol for a sec only worked against me, as they seem to think that conditions unknown to them do not exist and that patients pointing them out are insulting them and should see a psychiatrist .

An episode of acalculous infection is a life threatening condition, so if you manage to survive one on your own, let alone more of them, that will only  prove their point, in their view and work against you, as to them, the fact that you are still alive is solid and convincing proof that you are a fruitcake. 
That in hindsight I was quite the oppposite, did not matter to anyone  even after  the operation.

Simple and sheer luck turned out to be the only thing that  helped me out. 
But the joy when the gallbladder was finally taken out  soon turned into an even worse nightmare  because right after  surgery changes in position took place on a  larger scale, and while the gallbladder problem was rare, this new one , as far as I have been able to see, is entirely unprecedented, meaning, 
because of protocol and based on experience of the gallbladder ordeal , that there is very little hope, if any.

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A gallbladder torsion, or a torsion in any organ, can only occurr when it comes ( partially) loose from the ligaments that uphold it.

When the ligaments give in that organ becomes subject to gravity and it is not as much medical things, but simple laws of physics that determine it will twist while falling down, because of the pull of gravity.

What occurred is that after surgery my twisted and fell down.

The transverse colon is very large and heavy, compared to other things in the belly, and on it’s way down it pushed aside everything in it’s path or crushed what could not be pushed aside.

• My kidney was thus lowered 15 cm, and is very painful

• Parts of the small intestine  came to stick out every which way, like to near the spine and to touch the lungs even, causing severe coughing. 
• Food since goes down like in a pinball machine, clearly to be felt, and that is extremely odd, frightening and painful.

• When all fell down the few things that stayed up  were torn or stretched to maintain their connection to the fallen down parts. E g the stomach became vertically positioned and  stretched to the max. It hurts tremedously , is very scary, and I can hardly eat.

• My veins have been compromised, I am very cold and everything has slowed down, my brain, my movements, I can hardly walk and when going up a stairs I swet like a horse and get out of breath with palpitations that are so strong they involve my entire body. It is scary to know that  any compromised vein can easily pop any minute, especially the largest vein seems under pressure and numbs my feet and neck.

• The entire lump of intestine  gradually came to land on the bladder  and one part of that lump is seen on the images to transverse it, hampering it’s functuion tremendously, The bladder is always filled to the brim, taking up almost 1/4 of space in my lower belly, compared to less than 1/50 before, but I cannot get rid of the urine, nor do I feel the bladder is full. 

• The  bowel itself has become twisted in many places and is  intermittantly blocked There is mega stasis, obstruction and infection going on, that has been unequivocally confirmed by tests, imagery and even radiologists.

• Nerves got probably crushed as many things I felt before, cannot be felt anymore, even portions of the skin that are connected to the abdomen, are numb.

• of course it is overall very very painful. Especially in abdomen and back 

• appendix is under so much pressure it goes on and on

• Every bite of food  puts in more weight and waste , thus adding to the problem, while no one can survive without food either.

This can fairly easily be treated by hoisting the colon back up and stitching it put, and if that is no longer possible or would not help any, remove the fallen part.
But so far things go down exactly as they did with the gallbladder torsion.
And  that was only one torsion and allready hell, now there is hardly anything that has not gotten twisted, the colon is twisted in many places, small bowel got extremely twisted as did the stomach.
I am litterally being strangled by my own gut.

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 This is in essence the same problem as was the torsion of the gallbladder, namely a change in position. 
As was the case with the gallbladder as well, stasis occurs  behind the fallen down colon with infections in it's wake, that cause damage and get out of hand as is the nature of infections. 
In fact both the stasis and infections in both the bladder and the bowl have already been established on imagery and confirmed by 3 radiologists, 
 but doctors still can not link this to any change in position of the bowl, because of protocol as explained above. 
 They believe if the bowel falls, there is something IN the bowel that is wrong, if the bladder does not function properly, there must be something IN the bladder and so on. 
They cannot connect the dots.
 
The most depressing part is that one radiologist  indeed has noticed the prolapsed colon, but has not learned sudden changes in position can be of any significance at all, so does not sound an alarm, because of protocol, as explained above, 
Just like with the gallbladder they saw the change in position, but did not think much of it because of the blinkers called protocol, as explained above.


Meanwhile the stasis and infections continuously wear out all organs, tissue and myself

• Ongoing infections have already caused a lot of damage and adhered things that should not be conjoined, nor in that location. 
• They are spreading through my  body and will for sure spin ot of control at some point,and cause life threatening mega infection
• There are so many locations where things cannot pass, that are increasingly painful. That may mean something is about to pop or rupture. 
• Every minute of every day something else is being irrepairably destroyed by the weight of all the waste that is crushing it and pushing things down, even to the point that part of the bowel is pushed into the muscles of the upper leg.
• for a better idea of what pressure / crushing can do, read this article; it was even used as a method of execution in old times.  
•  http://en.wikipedia.org/wiki/Crushing_%28execution%29 

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Of my bad back I had an X ray taken in 2011, that accidentally also shows the location of the bowel.

The curved shape in the right upper quadrant would be my breast,  so the bowl is rather close to that, as it should be.

Next you see the most recent X ray for comparison, taken september 17, 2013

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as you can see there is nothing left in my upper body, and all bowels are lumped up in the lower belly and have imploded.
Both x rays were taken in standing position and have not been altered, only names were cut out

This last picture finally sort of cracked the case, if only for myself. 
It took more than a month before I understood, this accounted for all my medical problems since  surgery, and it took another while to be able to face this shocking fact. 

While this is obviously trauma, it is not described anywhere, not even on the web, so it may be unprecendented, meaning it is impossible for any doctor to come up with the diagnosis. 
Even while a prolapsed anus will be repaired and that is only a small thing, if over 10 meters of bowel fall down, no one gets alerted because there is no protocol for it.
Also it is not a known disease in itself, so cannot be detected or found by bloodtests or other tests, that doctors rely on to determine whether or not there is a medical issue.
So things look pretty bleak.



Radiologists were wrong deeming the gallbladder torsion insignificant, as that, with leaks and infections in it´s wake would for sure have killed me, and they are wrong now .
A sudden change in position of any organ should be taken as a very big deal and thus addressed if it causes the patient any trouble at all to prevent things getting out of hand  

I was wrong too, relinquishing to doctors who said the torsion was no big deal, until it almost killed me. So now even when very tired and sad I  give it all I have to find someone who will give me the benefit of the doubt  and will, based on previous experience treat me asap when it may still be possible.

  Otherwise my very long and hard struggle for life would not have been anything else but a prolonged deathstruggle. And right now a too hard one, knowing I can be helped, but not knowing how to get that help.

Because there is protocol and they are so busy