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Avatar universal

Why The Stonewalling/Wait For Bile Issues??

I am a 51 year old male, 6' 1", usually about 185 lbs.  I have lost ten pounds in the last three days, liver enzymes all elevated, many 2-3 times normal, Alk. Phosph. elevated nearly 4 times normal, and GGTP elevated over 8 times normal.  I have pain in the colon with cramping, back pain, and had nausea prior to my ER visit this week.
  The bottom line out of all this is that apparently there is sludge and/or stones in the bile ducts.  I had my gallbladder removed at the end of April and the liver enzymes crept up starting in June.  It is now CHRISTMAS and my medical situation appears to be urgent at this time. The ER doc did NOT order an ultrasound, preferring to tell me that all my labs were normal, a statement contradicted by reading same which ironically were copied and provided to me before I left the hospital.
However what I am being told by doctors is:"Your liver enzymes are about the same as they were"(in other words, "no problem" and "why are you bothering us on this?").   And it was the same deal with the gallstones that were finally found and resulted in classic pain symptoms back in January--which took four months to finally get to the point where a positive ultrasound for stones indicated the need for urgent surgery at that time, the first ultrasound being negative.  My question may not seem all that important since it is not focused on the medical, because it certainly seems as if the proper next step is to undergo ERCP, but there is an obvious issue of how to survive until that is scheduled due to my inability to eat without making my symptoms so worse that eating really does not seem to be a good option right now.  
My question simply is this: WHY does it seem that institutionally, when presented with gallstones or stones or sludge in the bile ducts, that the medical profession is so RIDICULOUSLY SLOW in responding to these issues?? And a corrollary to that is:WHY are Gastroenterologists seemingly trained to focus on tests that have little or nothing to do with the immediate problems here such as colonoscopy and upper endoscopy, when each of those will certainly miss the mark on the immediate issue?  
Thank you.
16 Responses
469934 tn?1333138882
I am so sorry to hear that you are suffering.  Go to the hospital, please...NOW!  You can't keep carrying on with these symptoms and weight loss.  Don't worry about assigning blame right now, just get yourself well!  I am going through a very similar situation and I absolutely understand.  Try to remember that all medical health professionals are not created equal and you may go in today and get someone who is phenomenal.

I belong to a Yahoo! group which deals with Sphincter of Oddi Dysfunction, Pancreatitis and Undiagnosed Symptoms, among other things.  Michele V. is an incredibly amazing woman who owns and moderates the forum and she is also a Registered Nurse.  Some of the other members are also medical professionals.  This forum is full of people who live with our kind of pain and suffering every day.  They have personal relevant experience that REALLY helps including information about ERCPs.  To learn more about this group, please email Michele at Sphincterofoddi_pancreatitis-***@**** or visit: http://groups.yahoo.com/group/Sphincterofoddi_pancreatitis.  

Get on the mend!  Good luck and Godspeed.

All the best,

Sam
Avatar universal
I DID go to the hospital, in fact was ADMITTED for a total of 7 1/2 days and thrown out after that because they felt my clinical condition was good enough.  Had an MRCP which was NORMAL.  ALL LIVER ENZYMES were elevated and was told by the Gastro this was Cholestasis.  However...now they want to do a liver biopsy.  I have to WAIT to be called for this.  I had severe abdominal pain, was on friggin MORPHINE initially, NPO for four days, cholestatic liver enzyme pattern which got worse all the days I was hospitalized except the last day, and now remain IN NO MAN'S LAND.  I was told I was released from the hospital due to an insurance issue.  Also this hospital's rooms were incredibly COLD in temperature.  How can they get away with this ****?? Please...beyond that, they simply KEEP postponing tests and pretty soon....that alone is going to destroy my liver...whether or NOT anything ELSE will!!
469934 tn?1333138882
I'm so glad you went into the hospital.  I'm sorry it ended badly.

That's really similar to what happened to me the last time.  I was admitted and kept on antibiotics and morphine for six days.  They kept me in for eight days.  When my liver enzymes got back on track, I was released.  I'm still in extreme pain and have Oxycontin HCL for that.  The nausea is helped by Motilium (Domperidone).  I'm waiting for an appointment with the Liver Center in Toronto to see what's next.  The hospital was freezing.  I waited for tests for days, too.  

Who knows, maybe when they send you to a specialist, you'll have someone to advocate on your behalf with other agencies.  The fact that we don't have money should not prevent us from obtaining the very best medical care available.

I wish you the best in everything!  Hang in there.  I care about what happens to you and I'm sure others in your life do, too.

Good luck and Godspeed,

Sam
Avatar universal
Toronto? In other words, Canada---  where the issue ISN'T whether you have money or not.  I live in AMERICA, where that IS an issue.  I made the mistake of getting acutely ill over the holiday season.  
And...my liver enzymes did NOT return to normal.  My clinical condition improved enough for them to deny continuing keeping me as an inpatient.  That's all.  I'm still sick as a dog.  I did get a call today, from the Gastro office confirming my colonoscopy on the 8th.  The woman didn't have a clue as to what happened.  I filled her in.  She advised me to call the biopsy people.  I did.  It may have been after hours or whatever.  I may get a call back tomorrow.  Gee, all this to go through a test that could tell you what you have but could also provide buchu dangerous complications.  Lovely.
  Others in my life.  Oh yes, the stuffed dog cares--but only because I put a mouth and a tongue on him--something his manufacturer forgot to do.  LOL
  I will add you to my extensive list of one, which is the stuffed dog.  You are in great company-- as HE is great company lemme tellya(pssst...now that he has a tongue and a mouth, he can't stop talking!).   Hahaha.
469934 tn?1333138882
You're right.  I'm in Canada where health care is a given...as it should be everywhere in the world.  I'm also in Canada where 46% of my income is paid to taxes to support that system.

I'm really sorry to hear that you are still "sick as a dog."  I'm also really sorry that you don't have anyone else in your life.  

Please hang in there.  I'm sure if you reached out to a local church or social agency, you would find that many people care about your wellbeing.

All the best,

Sam
Avatar universal
It's nice to hear you have something for nausea and pain that is effective.  I went back to the ER and got morphine via IV and in pill form.  However that causes nausea, so what happens is that with that you trade pain for nausea, perhaps an improvement in the bargain but not the best bargain there is.
  I continue to have abdominal pain such as it feels as if someone punched me as hard as they could.  It is a colicky pain in the abdomen which doctors become frustrated over because it is not localized to one area or another.  I am sorry, I just report what it feels like.
I was dismissed from the practice of a local gastroenterologist because in the hospital I refused his services to do invasive testing after he yelled at me over the phone accusing me of being an uncooperative patient.  I mean come on.  Well now I have to counter that with the fact that in the event something is going on in my colon and he dismisses me, I then have no local Gastro and during the winter this presents a challenge to travel elsewhere for care.  
I do have a liver biopsy scheduled for the end of this week which should provide some answers at least, weather permitting those will be had relatively soon, however let me tell you...a whole bunch of nonsense and **** thus far.
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