it's NOT all liver pain! Surgery while on TX??

[merryBe]

Hi guys remember when I said I was punching my liver a while back??

Well this is because for a year and a half straight my GP has been telling me there was nothing wrong with my gall bladder, it had to be something else.......while I have been CONSISTANTLY telling her there was something wrong with it based on 10 classic gall bladder symptoms!!

Well, ten arguements and 5 tests later she finally gave me the test I originally wanted,,,,the hidascan
and my gallbladder only empties at 10% of the normal rate.

which explains all the pain, and why I lay with ice packs on my abdomen every night!!!!

So now, to forgive my once again inept GP,.......... yes I do.

THe question is, moving forward, , whether to have the surgery while on this TX
.
Saw my liver guy this morning and he said, it's my call, but more dangerous while immunosuppressed.
But after 2-3 years of this pain, and a 1 1/2 years of acute pain...he didn't want to tell me not to either.
.I hardly want to wait another 3 months (until tx is stopped if I'm not UND) or another 14 months (if I do go UND and get extended tx.)

Comments/ suggestions/things to ask the surgeon on this Thursday???
anyone??? Thanks!!

[alagirl]

I'm hoping you'll feel a lot better after you have it out.

[merryBe]

it's a tough call, but thanks for the neupo hint..that one I'll write down.

I always try to go hide in my room if the pain is unbearable, so as not to worry hubby...but a couple of times, I ended up wailing like a animal just hit by a car before I could get out of the room..and the attacks last tan minutes up to an hour when severe...

I guess when you've lost 5-10 lbs a 3 day period, only from sweating, and writhing in pain....numerous times now) you start to figure this ain't nothin' no matter what some dumb scan showed.

and when I went to emergency, the idiot said, oh you've just got acid or gas probably...(because the ativan shot helped)...and sent me home with protonix but no tests...

if it wasn't so bad, I'd gladly put it off...because no way do I want to jeopardize my tx further...but this has been an agonizing year of telling not just ONE GP but SEVEN other doctors about this pain....and not one even giving me lip service when I said it has all the markers of gallbladder disease.....either they passes it off to another doc, or said, well...who knows...or...maybe it's your back, or gas...
I even resorted, which I've never disclosed before,  to telling my 2 main doctors my IQ, in a final effort to try to get some intelligent conversation and respect from them, figuring, not that it's their business but that at least in Might perk them up, assuming they know what that means....but noooo..... evidently if there is no MD behind the name it matters not what the pedigree or Phd may be, nor that you have some years in aspects of medicine.
Frustrating stuff, it makes you wonder....hum....if this is "the best medicine in the world" what must the other countries be like???

I really appreciate your advice and concern, but to be truthful, I'm only eating minut fats with the Riba right now, yet waves of pain all day everyday...... I'd let YOU come over tonight and take this thing out if you told me you were trained to do it!!!!. Helll I'd pay for your plane ticket and provide the hunting knife!!!
mary

[alagirl]

thank you for that very scintillating commentary on your workmates' lunch habits...
;)

Since I started tx, I've had an endoscopy, colonoscopy, had a port implanted, all with a 7-8 hemaglobin.  It was weird, because since I was already in the hospital they COULD HAVE transfused me first, I was going to be getting blood before I left on all of those occassions.  But they didn't really seem that worried about the order of things.  It was like, yeah, we'll get around to taking that vampire look off your skin whenever we can fit it in.

[copyman]

couple things come to mind, there are many people that rush to have their GB out and wish they never had. they feel much worse after with sx like everytime they eat running to the bathroom within 5 mins, still having pain after.  soundslike you may be a canidate for surgery but i would wait until done TX if at all possible. Hope you feel better soon.

[mremeet]

Ala I can believe what you said about the diarreah post gallbladder removal. There were a couple of people that I work with that had their gallbladders removed right around the same time. One thing I noticed about both of them is that after they ate their lunch they would very frequently hiccup and burp afterwards. They didn't do that nearly as much as before, and no I'm not some weirdo burp/hiccup monitoring person ;-) You just couldnt help but notice is all. Of course I never said anything about it, but it wouldn't surprise me if they got the sh!ts from it too, at least until their bodies acclimated to regulating bile flow without the gallbladder as you suggested. Today (several years later) I don't notice them burping or hiccupping nearly as much, so I think what you said is pretty much dead on.

Merry I'm sure you know that gallbladder removal is usually performed laparoscopically today. As far as I know it's the most common surgical operation in the US today with a stellar safety record. Of course if your neutrophils are low, you may be risking infection. But maybe they can give you neupogen to help deal with that? If your platelets are low, not sure how they would handle that, although I would think the risk of excessive external bleeding would be pretty minimal with laparoscopic removal (which involves small holes, not full blown open abdominal surgery). Not sure what that means for internal bleeding. Anyway, hope you get it worked out. Sounds miserable living like that all the time, I'd hate to have that kinda pain visited on me again. Good luck.

[ksk3926]

I had a shoulder surgery while on treatment. My shoulder pain was unbearable and I was thinking that I should get all the painful stuff taken care of, so that when treatment was over, I wasn't facing a surgery and a longer period of feeling bad. I wanted it over and done with. Good luck,
Kathy

[merryBe]

this is all really helpful stuff.

it's a heck of a call. I've already tried the tiny fatless meals...

of course....I wake up and have the pain throughout the day of an on...set off by any fat....and of course twice a day I have to eat some fat for the Riba....

currently I've got a call back in to the Liver guy with the question "since I am only secreting at a 10% rate does this mean my fat absorption is minimal and hence my Riba absorption is also being compromised"

If the answer is yes, then I may not have much to lose by doing it now, at least there would be more bile regularly entering my intestines instead of backing up.

Bottom line is I'm covered in sweat and icepacks and getting almost no relief from eaither not eating, or small eating...or the 3 pain pills I take a day, 1 ultram morning and noon, i/2 vicodin midafternoon and eve.. this allows me to sit up for an hour or 2..

but I still collasped in pain in the store isle while christmas shopping..
so I'm not sure waiting is an option.

Alagirl I agree....the body is screaming something at us!!

thanks one and all.

[alagirl]

also, I had the same issue you did with the gall bladder not emptying.  I was in intense pain and when they got me open, the bile had backed up to the point where it had pushed other organs out of position.  There was a REASON, in other words, that I was in that much pain.  I don't think that serious internal pain is generally something to ignore, personally.  I think its the body's way of alerting us to problems that need to be taken care of in a more urgent fashion.

[alagirl]

if your blood counts are ok, I wouldn't necessarily put it off if you're in that much pain.  (I say this remembering how much pain I was in with my gall bladder.  I couldn't have lasted a week without the procedure).  Of course, I'm pretty used to being in the hospital and undergoing procedures even when not always in the best health.  I can tell you what's on the menu every night at this point in Huntsville.  I had a minor surgery, having a port installed on Friday with a blood count hemaglobin of around 7.5 and blood that was having some issues with clotting.  Not nearly as intense as a lap surgery, but still a good deal of cutting and suturing in two separate areas of my chest, and the bottom portion of it is implanted I think in my bone.  I mean, if its the infection part the concerns you.  It wasn't nearly as painful as a gall bladder surgery to recover from though.

Usually, as with me, they put you on some pretty stiff antibiotics when you are immunosuppressed for some reason, and they are having to cut into you, but I did not find the antibiotics to work any worse, in fact, they seemed to work as well if not better.  Weird, that.  Who knows.

I will caution you that since the gall bladder regulates bile, it is normal to have difficulty with diarrhea following its removal, sometimes for weeks or months, while your body learns to regulate without it.  This is VERY common even though your gastro will tell you its not.  They lie, the gastros.  Wantonly and with abandon I'm afraid. ;) So if you are having issues maintaining weight on chemo, this might be something to consider.

[alagirl]

if your blood counts are ok, I wouldn't necessarily put it off if you're in that much pain.  (I say this remembering how much pain I was in with my gall bladder.  I couldn't have lasted a week without the procedure).  Of course, I'm pretty used to being in the hospital and undergoing procedures even when not always in the best health.  I can tell you what's on the menu every night at this point in Huntsville.  I had a minor surgery, having a port installed on Friday with a blood count hemaglobin of around 7.5 and blood that was having some issues with clotting.  Not nearly as intense as a lap surgery, but still a good deal of cutting and suturing in two separate areas of my chest, and the bottom portion of it is implanted I think in my bone.  I mean, if its the infection part the concerns you.  It wasn't nearly as painful as a gall bladder surgery to recover from though.

Usually, as with me, they put you on some pretty stiff antibiotics when you are immunosuppressed for some reason, and they are having to cut into you, but I did not find the antibiotics to work any worse, in fact, they seemed to work as well if not better.  Weird, that.  Who knows.

I will caution you that since the gall bladder regulates bile, it is normal to have difficulty with diarrhea following its removal, sometimes for weeks or months, while your body learns to regulate without it.  This is VERY common even though your gastro will tell you its not.  They lie, the gastros.  Wantonly and with abandon I'm afraid. ;) So if you are having issues maintaining weight on chemo, this might be something to consider.

[Whrose]

have been away for awhile and then came across your post.
sheesh

If possible and with close supervision and watch for worsening of cholelithesis I would think to put off the surgical option wise right now....but your Doc would be the best judge of these risks.

funny I just read this article tonight about gallballder and how certain supplements can increase and thin bile flow. This doc recommended several methods such as beets, lecithin,choline,tumeric,cucurmin and also milk thistle that have these properties. Might be interesting to see what GRAS on tx alternatives you have with this.
http://www.newswithviews.com/Howenstine/james63.htm

take care and sending you hugs

[mremeet]

Until you have your gallbladder removed, in the meantime you should be able to lessen your pain by eating smaller meals throughout the day (instead of a smaller number of big meals) and make sure they are as low fat as you can get. When you eat fat, this is what triggers the gallbladder to release bile. Bile is used to digest the fat through a process called saponification (the same basic process used to make soap by the way!). So if you eat smaller meals that are very low in fat it'll help to prevent the gallbladder from trying to squeeze out enough bile to digest the fat. Hopefully this will decrease your pain until you can get the g-bladder removed.

The reason I know all this is because I have gallstones (HCV hastens their development in most people). I used to suffer painful attacks from them, and they always occurred after eating big greasy meals. So if you strictly control you diet in the manner described above, it should help. Good luck...

[desrt]

Having had a gallstone stuck in my common bile duct along with pancreatitis, I can feel your pain - literally - and understand wanting to be free of that pain. On the other hand, I lost a friend to a secondary infection he picked up in a hospital while on treatment and I know for myself how diffucult it is to get rid of even a simple skin infection while txing. I think my first priority would be to stay as far away from hospitals and MRSA as possible, but it sounds like it will have to be your decision in the end. Tough call.

[merryBe]

going out, but that still means some bile can sit longer in the liver than it should....doesn't it?
ejection factor after Kinevac at 10% it said.

I don't think this can effect the pancreas unless there is a block in the common bilary duct, however I was told chrystalines do not show up on these scan, or ultrasounds, meaning you can end up with serious undetecable constrictions. If these are in the common duct they can cause the calcium normally secreted to build up in the pancreas, which will then dissolve that organ.

[desrt]

Where is the 90% blockage - going into or out of the common bile duct?

[merryBe]

RRR...yeah, and so what's your excuse ; )))))))  heh heh...the people of Gaul has hutzpah!!!
I'll take it!!!!!    
but seriously....

I'm thinking same way, although he did say there's only a 50/50 chance this will help you, since we can see no stones or chyristaline structures....still, even a 50 percent chance of being pain free sounds worth it to me!!!!!

but stones or no stones, emptying at 10% of normal rate has to mean I'm not digesting right, AND it means more bile backing up into the liver. Plus, if bile then slips into the pancreas it will digest that organ..can you believe I diagnosed this a year and a half ago, and doc couldn't see it!!!!!!!.

My only concern is bleeds/infections/nicking the liver....which right now would not be good either.
However Liver guy says platelets etc are good to go, surgery wise....not too low.

Hey, those ice packs are already on my head!!!!!!  at least this way, I'll have extra soon!!!!!!
merry

[FlGuy]

People may have guessed that you have a lot of gall.  And, if so, now you know why.  Based on recent labs, including platelets (?), sounds like GI doesn't have a problem.  Why not go for it?  Then, you can move those ice packs to your head where they belong when a person's on tx. Surgeon may have other thoughts about going forward.