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Part of My Health Mystery Getting Closer to Resolve

Apr 08, 2014 - 6 comments

I continue to post here to update anyone who may be observing my health experience, especially for the purpose of perhaps helping just ONE person get help for his/her own medical mystery.

As I have stated before (I think, somewhere) it is so tempting to think along the lines that everything is due to the same mystery illness but I TRY to avoid believing that as hard as it sometimes is.  Anyway, it is certainly all connected (one body part to another, that is) so in a sense it really is all somehow related, one way or another, right?

I believe I have also written about going to the surgeon and him wanted to perform exploratory surgery which I politely declined but asked for more detailed imaging to be done.

So.  I went to have an MRCP done and it revealed a 10 mm size  dilation in my common bile duct with irregularities in my intrahepatic ducts.  I likely have an infection accompanied so kindly by a stone which is hosting the infection.

At least that is my suspicion since 2 months ago it all seemed to be slightly helped by an antibiotic that was rx'd me due to a different problem.

10 mm is comparably sizable considering the natural adult common bile duct is approx 4 mm in size when normal.  I KNEW the I KNEW there was something in there blocking something.  I have been in pain daily and getting worse.  

I now see another (new) primary care doc tomorrow for referral to a new gastro doc who will hopefully be able to help me out. Looks like common protocol on this would be to go in and try to see what the actual obstruction is and then handle as needed.  

Glory be to God for giving me the nudge to push for different imaging and NOT let the doc cut me. He himself over the phone said, "So there would have been nothing I personally could have done for you".

Interestingly, also, he would not have "explored" the ducts that are troubled.  He would have had to stitch me up, wait for me to wake up and say something like, "I am sorry Miss Rhonda, I didn't find anything." (something like that, another surgery later).

Thanking the LORD today for revealing this to me and the docs and praying for guidance to the right surgeon for the job.  And thanking God that I have qualified for health coverage as well in the mean time!

Will update again after a plan of action is put together, good LORD willing and the creek don't rise (as my Ma used to say).

Hope whomever reads this has a very blessed day/night, which ever the case may be.

Keep your head up, and ask the LORD for guidance with a humble heart. HE WILL DELIVER you right where you need to be....He never said it would be pain free. Keep your head up. *hugs*

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1081992 tn?1389907237
by Ken_PA, Apr 10, 2014
hi, the thing I'd ask in your position is "why me?" since you're not an over eater (have only 2 of the 3 Fs). Did you ever have abnormal RBC tests? If so, maybe your stone is not of the usual cholesterol composition but is instead the pigment kind from too much bilirubin, which can be from RBC destruction. Estrogen also involved somehow.

Maybe an infection caused the stone, or else the stone caused stasis and an infection. Isn't there a procedure done with endoscopy where they enter the CBD and pull the stone down and out? No cutting. Is that what you were referring to?

Some say stones can be dissolved nutritionally, but that would depend on the type.

Does avoiding fat help with symptoms? Some proteins cause release of CCK (cholecystokinin) too, IIRC.

If you want to add to the mystery conditions, there are several great videos on Eosinophilic Esophagitis, which gets mistaken for the GERD you had talked about. Dx is by treating with PPI and having no relief of GERD-like symptoms - then various followups like biopsy looking for > 15 eosinophils per High Power Field (400x microscope). EoE is an "emerging disease".

Etiology is usually food allergy, and Tx is food avoidance or topical anti-asthma steroids (swallowed, instead of inhaled). I know someone who just had cholecsytectomy and has EoE, too. Maybe also bile reflux instead of acid reflux.

Congratulations on having wisely resisted exploratory surgery. Exploratory surgery seemed crazy.

1081992 tn?1389907237
by Ken_PA, Apr 10, 2014
avoiding coffee helps many, too. doesn't matter if with caffeine or not

1702615 tn?1421815848
by reallybuzzed, Apr 10, 2014
UGH, right...  been trying to NOT give up my coffee LOL for a long time :) Eeesh, I really like it, but in my heart KNOW that it would be a good thing to get rid of for several reasons.   Have been gradually choosing tea now and again instead. have a point.  Why should I get these stones? (I almost said, "why not me?"  b/c I know God is going to use this some way or another in my life for good...but the question is very real and a literal diagnostic one and not a pitty party one, hee hee) .

While I am not over weight I do love to eat and am not very particular about what I eat.   I do like all kinds of food so when I originally had a very HUGE gallstone over 20 years ago I just decided it must be due to the fact that I ate whatever I wanted whenever I wanted.  AND, once upon a time, I read  that most women have at least one gallstone for each baby they have so I kinda believed that had something to do with it.  You raise a good point though, and I have read about what you mention with the pigment.  AND I totally suspect infection, whether pre or post block I don't know but maybe the GI doc I go to on the 17th will help me to answer some questions.  The 17th can't get here quick enough for me, but I know God's timing is perfect.  They had originally set it for the 22nd but the GP doc talked them into the 17th.

My daily  ongoing chronic symptoms are getting worse, such as the dull pain and  just today I started itching (but I have not had any more "attacks" of intense stuff recently (thankfully).  I have eliminated fatty foods and meat proteins because it seems that is what set it all into motion back in November....I had noticed muscle loss even though I was working out and chose to go high protein (as I may have mentioned in my other posts) and that is when I got my first "attack" og this gastro thing.

I am now believing that this is why the low potassium recurrences also....simply not absorbing my nutrients.

I have tried to get the most recent GP and the surgeon to order me antibiotics since I am fairly sure that some of my pain is due to infection and I truly believe that some of the size of the dilation and the irregularity on the intrahepatic ducts is probably inflammation from infection but they dig their heels in as if nobody will take chances on liability and are making me WAIT for the GI doc.

I am just hoping to avoid an "emergent" situation.  I'd MUCH rather know the doc a little and have a "plan" than wind up at an ER w/ a doc I've never met who isn't sure what's happening.

Of course there is always a chance I am completely off base. And this GI doc on the  17th will shed some completely different light on things.    Yes as for the procedure I am talking about the endoscopy which can be fairly harmless unless they discover something more complicated when they get in.  I am going to ask the the CA199 test also.

The GP was very thorough on questioning and this has their attention so I am to return after the GI and whatever they wind up doing to follow up on the lump in my arm and all the other fun stuff I have.

I am VERY glad to have avoided exploratory surgery....everyone I know says how crazy it sounded.  Are the docs really that blinded by money???? and thinking inside a little box???  

I mean I have been telling each doc since Novembers ER visit that I suspected a stone or a block in a duct!  (OK, not getting on that soap box).

I will have to read on the esophagus thing you mention, something new to learn :) and perhaps apply.

I could tell by the new GP's (really a nurse practitioner, very new) attitude when asking certain questions she was very concerned that whatever is causing the dilation is more serious than just a stone.  But I fit the risks for it,  just in the fact that I had a gallstone before and it was huge and long ago.

Thanks once again for your input, Ken.

Hope you are having a blessed Spring time!  

1081992 tn?1389907237
by Ken_PA, Apr 11, 2014
Do you now or have ever had elevated serum cholesterol?

Does your scan report speculate on the stone's composition?

Fx of stones? No anemia?

Wouldn't the stone in the CBD prevent pancreatic enzymes from getting into the intestine and that would impair digestion and absorption? (You can buy pancreatic enzymes as supplements.)

Low stomach acid (hypochlorhydria) means you can't absorb minerals from food and from some supplements - but other types of mineral supplements like chelates work well, AFAIK. Also, hypochlorhydia weakens immunity because pathogens in food don't get killed by the acid. Maybe SIBO can result. I wonder if the Sphinctor of Oddi can get thus infected and therefore nor seal up correctly, then the infection can travel up the ducts to the liver. Please let me know if you find out that answer (with a note since I can't 'watch' this page.)

You can buy betaine hydrochloride supplement.

ER docs are good for preventing people from dying, not so much for diagnosing mystery conditions :)

An "emerging disease" means that it's new knowledge and lots of docs don;t know about it yet.

Yes, heaven forbid you end up with an emergency cholecystectomy and didn't need it.

"lump in my arm" I don;t remember that but if it's a fibrotic node then that's another immune irregularity.

Yes, some surgeons are surgery-happy.

"I mean I have been telling each doc since Novembers ER visit that I suspected a stone or a block in a duct! " Some people have very good instincts about what is wrong with them.

"causing the dilation is more serious than just a stone" Pain in that area means you should eliminate pancreatic cancer as a cause. Did your scan accomplish that? (Having the stone argues against pancreatic cancer, because that's an alternative cause. The backup caused by a stone can also cause pancreatitis.)

Did you undergo rapid weight loss before the stone associated symptoms arrived?

1702615 tn?1421815848
by reallybuzzed, Apr 11, 2014
I know.  My concern is to rule out pancreatic cancer and my hope is focused on the possibility of a stone in the duct since I have a history of  a massive stone before (and had my gallbladder removed then).  The pain is concerning and feels very serious and I cannot say I have not been concerned about the pancreas.  On my first visit to the ER in November I truly thought they would return to my bedside and tell me the ct scan was going to tell me my pancreas was shot.

The most recent test (MRCP) does not necessarily rule out pancreatic cancer as I have read many stories of p.c. eluding imaging altogether.  But the MRCP "says" that all my surrounding organs look fine and specifies the common bile duct dilation and the "mild" irregularities in the intrahepatic ducts.  

I have tried the enzymes due to using the logic you mention above and it didn't really seem to help so I stopped since I really don't know what the problem is...was sort of afraid of causing things to be worse.  

I cannot help but believe there is an infection involved since I began to feel better during the 7 day antibiotic for my other infection and then pain returned after stopping.

I did lose weight in November (about 7 lbs.) when all this started and was losing muscle mass leading up to that which caused me to start the high protein intake and it really seemed like the high protein is what triggered everything, like maybe I had a stone slowing the bile flow but when I increased the protein the amount of bile simply wasn't enough and freaked out my pancreas.  I dunno.  I will let you know what happens I pray it's a stone but whatever the turn out God's got it and me.  
Thanks for your continued helpful information!  

1702615 tn?1421815848
by reallybuzzed, Apr 11, 2014
P..S   It certainly seemed that the bouts or "attacks" that prompted the ER visits were episodes of pancreatitis.  I say this because the symptoms at those times are different and more intense.   But what I am left with is an 'almost' constant nagging dull pain and slightly overactive bowels and reduced appetite.  Thankfully the sever nausea and seriously overactive bowels and stabbing pain have been limited to the times of the 'attacks' I speak of.  Interestingly enough my enzymes are never elevated.  And then I read they won't be unless the blood is drawn at a certain time during a pancreatitis attack.  None of my imaging shows any inflammation or masses in the pancreas or liver themselves...seems to be focused on that one area of the common bile duct and some of the intrahepatic ducts with emphasis on "mild" irregularity ....

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