20 years of pain--what do I do next?

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artchick1
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Date Joined Apr 2008
Total Posts : 7
   Posted 4/10/2008 10:05 PM (GMT -7)   
I have been suffering with severe pain on and off in the upper right quadrant of my abdomen for about 20 years.  I've been to several dr.s and when I tell them my symptoms, they say, "ahhh, gall bladder."  But, when they run tests, my gall bladder tests fine.  This has been going on for about 20 years.  Now, I have pain that's constant in the upper quadrant, it runs around to my back and up into my right shoulder blade.  I've had mid-back pain for about 5 years and many tests have found no explanations for this. I also have a spot mid-back that constantly itches, especially when I first take off my shirt at night. (I think it's gall bladder pain.)  Recently, the dr. that I've had for many years and like very much, sent me in for another ultrasound and HIDA scan.  The ultrasound tech said it looked to her as tho my gall bladder was thickening but the radiologist had the final say.  He said, all was fine.  I almost cried.  Next step was the HIDA scan.  I had that done yesterday and got the results today.  All is fine.  I was too upset with the results to ask numbers so I'm going to call back tomorrow, apologize to the nurse for "shooting the messenger" and ask for numbers.  I still believe it's my gall bladder.  There are so many foods that bring on the severe pain--onions, garlic, fried and greasy foods, pizza.  Sometimes, ANYTHING I eat causes an attack of pain.  I do get nausea for no reason, like immediately upon rising in the morning.  If I don't eat right way, the nausea starts.  (No, I"m NOT pregnant--no plumbing)  Sometimes, I just get waves of nausea and always have peppermint gum to help control it.  I'm at the end of my rope with this constant pain.  Does anyone have ANY suggestions as to what I can do now?  Do I just go to a surgeon with all my tests results and hope he will take it out and hope my insurance will pay part of it?  In the past, I've been told that even with the tests being inconclusive, I could still have my gall bladder out but, since the tests were inconclusive, my insurance may not pay for any of the surgery.  Help?

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/10/2008 11:57 PM (GMT -7)   
Hi artchick, welcome to the board! I'm SO sorry, though, to hear that you have been suffering like this for 20 years...that is unimaginable.

You've had HIDA scans and upper abdominal ultrasounds and it appears your gallbladder is functioning okay. Have you had an EGD (upper scope) done?

I don't normally "plug" this treatment, necessarily - but I am an osteopathic medical student and we hear all the time about patients with refractory (i.e., as-of-yet-untreated) symptoms. It might be worth a shot to look up an osteopathic specialty clinic to treat your symptoms. It might help, but it won't hurt. You might check out www.osteopathic.org and see if there is a physician who might be able to help you.

I know what's like to not have answers, and know it's frustrating...keep posting and I hope we can help you!
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Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 4/11/2008 7:39 AM (GMT -7)   
Sergant Bob posted on another thread about something he saw on television called the Spinchter of Oddi. It is part of the gall bladder/pancreatic duct system and when it's not working right, you have the same symptoms of a gall bladder attack (because it messes up your bile flow). I work with a lady who was in the hospital she got so sick and they thought it was her GB, but then, no, that's working fine, then they thought she had pancrea*** because she showed signs of an infection, but no, they decided that wasn't it either. They're still not sure why she was in so much pain, nor what was infected. I passed that Spinchter of Oddi information on to her too and she was going to ask about it when she goes to the doctor.

Also, has anyone checked you for pancreatitis? It too can look just like gall bladder attacks. My parent's dog actually has that and she will get diarrhea and vomit bile when it's acting up. They have some sort of medicine they can give her to calm it back down, though.

I can sympathize with you, though; I had the same problems as you for 5 years, but my gall bladder did eventually get so bad it showed up on a HIDA scan. But I was in that same boat of wondering how much it would cost if I paid out of pocket to get it taken out without a conclusive test result. ($12,000 5 years ago).

If your spinchter and pancreas aren't messed up, then ask your doctor this: IF your gall bladder was chronically inflamed (the problem I had with mine--hard to spot on tests), would an anti-inflammatory help it? If so, can you try taking it to see if it helps? Unfortunately, you can't know that a gall bladder is inflamed until you take it out and "autopsy" it. It will show up as not working when it gets bad enough, but you can't tell what's causing it to not work until you take it out. I wonder now if we had known that mine was inflamed, if an anti-inflamatory would have corrected the problem? Don't know; don't know if anti-inflammatories work that way. But if you've got nothing else, it's worth a shot, I'd think.

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/11/2008 8:25 AM (GMT -7)   
I've had every test available for gall bladder thru the years, including the scope and upper g.i. series. All fine. I did get the numbers from my dr. for the HIDA scan and my g.b. was functioning at 61% and my dr. does have a call into a surgeon for me. I do take an anti-inflammatory as I have a lot of arthritis. Thanks for suggestions, tho. AFter this many years, I'm a frustrated woman in a lot of pain.

sciencelady
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 4/11/2008 1:16 PM (GMT -7)   
I'm in the same boat as both of you, except for not as long. I started feeling like absolute junk last summer - nausea 24/7, excessive burping, no appetite,and some discomfort in the center of my chest - like something was too tight. I've had a slew of tests that have ruled out any colon problems, pancreatitis, liver problems,gall stones, gastroparesis, bacterial overgrowth and ulcers. ( I also had a HIDA scan which showed 32% ejection.) My 48-hr. Bravo pH test showed that I had quite a bit of reflux, also a small hiatal hernia. So, they said I had GERD. My GI didn't think that the 32% was low enough to cause my problems. Since Christmas, I have tried 3 different PPI's which haven't helped. I have also started having discomfort in my URQ - pressure like a golf ball at times, occasional burning along rib line and and in right back, and once in a great while, shooting pains that come and go quickly. Now, my GI thinks that it might be gall bladder related since the PPI's aren't doing anything. She sent for a second HIDA scan 2 weeks ago. When I got the 2nd injection, after 5-6 minutes, I felt the burning progress from the center along my front ribline to under my arm, then came the golf ball pressure under my right breast. After 22 minutes, they realized that the IV had come unhooked and some of the stuff had run all over my arm. So, they had to start over with another 2nd injection. They assured me that everything would still work OK. I was sure that this would be my definitive test and was so dissappointed when I learned that the ejection fraction was 50%. Much to my surprise, my GI said that I should still consider getting my gall bladder out because I have gall bladder symptoms and nothing else is turning up and PPI's aren't helping. She said that she had a patient last month who felt exactly like I do, with an EF = 50%. She had gall bladder out, feels fine now and said that she wished she'd done it sooner. I have read other posts on forums from people with symptoms, but normal EF's, who have gotten better after surgery. I feel absolutely awful, really nauseaous constantly, worse in the morning, no appetite, lots of indigestion plus the discomfort in the RUQ which comes and goes. We decided that in the next month, I would try 3 more medicines (Protonix, Carafate and Reglan). If they don't help, I'm going to visit a surgeon. (I already went to one back in the fall, before I even had much RUQ discomfort, and he said that he would remove my gall bladder because my symptoms could be that.) I guess I would encourage anyone who has thoroughly been tested for all other upper GI disturbances to pursue the gall bladder thing, if you have the symptoms.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 4/11/2008 1:53 PM (GMT -7)   
Science lady, I don't see how your test could have come out okay if they botched your IV (not sure why you had an IV; I just had a simple line and got two injections straight into it and that was it). The second injection is what makes your gall bladder release the bile that they have made radioactive (first injection). They have to give the second injection at a certain time, or else the radioactive markers will start disappearing as they decay (very short half life) or move through the rest of the body through normal circulation. Also, if you got part of one ejection injection, then another got a full dose on top of it, can one not assume that your gall bladder should eject particularly well?

I'd ask for a total redo.

sciencelady
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 4/11/2008 2:52 PM (GMT -7)   
Keriamon - Thanks for your input. I questioned the validity of the test, too. The lady doing it assured me it would be OK. I told my doc and at first, she rolled her eyes. Then said that she had faith in the people doing the test. What you say makes sense, though. The first injection was a shot. Then I laid there for an hour while it went to my gb. Then they put an IV in my arm and began to infuse the stuff to make my GB contract. That was supposed to take a half hour - it was going fine for at least 5-6 minutes because that's when I felt the discomfort. Then for some reason, the tube came apart. When they checked it at 22 min., the stuff was all leaked out on my arm and my blood was coming back up the part of the tube that was still in my arm. Then it took them 15 more min. to get a new batch of the 2nd stuff. They then started to infuse that into my arm for another 30 minutes. So, you're right, I got one and a half batches, but who knows how much the first one had decayed when the second one came around. ????? I might ask for another one when I go back in a month. My Dr. did say that is was strange that the first HIDA was so much lower than this recent one. I actually feel worse and have more symptoms now than back in the fall. My husband says to quit screwing around and just get the darned thing out.

sciencelady
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 4/11/2008 2:55 PM (GMT -7)   
Forgot to add...... that night I woke up about 3am and was sick as a dog - no vomitting but so nauseaous I couldn't stand it (more so than usual) and terrible diarrhea for about 2 hours.

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/12/2008 8:26 AM (GMT -7)   
Sciencelady--I, too, felt awful after my HIDA scan. I'm sure it was my gall bladder that ached--read-HURT--all day and, that night, when I went to bed, I couldn't go to sleep because my gall bladder was throbbing something fierce!! I also felt quite a bit of nausea. I think, after having put my g.b. thru its paces that day, it was reacting--violently. I have found that diet Ginger Ale helps with some of the nausea. My dr. did get me in to see a surgeon on Monday. I'm quite ecstatic! Now, if he just has a trick to getting this taken out AND getting the insurance to pay, all will be well.

sciencelady
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 4/12/2008 11:27 AM (GMT -7)   
artchick - Please post after your appt. with the surgeon. I'm curious as to what he has to say. Thanks.

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/14/2008 9:56 PM (GMT -7)   
I saw a surgeon this afternoon and he won't take out my gall bladder.  He said being a surgeon is what he does to earn a living and he likes it but, he couldn't justify taking out a gall bladder that, by all intents and purposes, looks all right.  He said that doesn't mean the symptoms I'm having aren't gall bladder but he didn't really think taking out my g.b. would help the symptoms.  On some level, I have to respect him for his decision not to do the surgery and earn a fast buck.  On another level, I was very frustrated.  I asked about all the years of pain I've experienced and he assured me that it will go away because I'm getting older.  I assured him that I did not want this pain another 20 or 30 years.  I thought about his comment on my way home and  by saying "it will go away--you're getting older" means eventually I"m going to die and THEN my pain will be gone.  So, I live with my pain another day or two or 50 knowing there must not be anything wrong with me that death won't cure.  (and, no, I"m not suicidal, just very, very frustrated.)

sciencelady
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 4/15/2008 4:12 AM (GMT -7)   
artchick- Why don't you try to find another surgeon?

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/15/2008 8:28 AM (GMT -7)   
The surgeon said I would be hard-pressed to find a surgeon who would take it out. He said, even though I have all the symptoms, the tests say it's fine and because of how the g.b. lies, there are major risks in having the surgery, even with a diseased one. Plus, he said since the g.b. tests fine, taking it out would probably not get rid of my pain. I don't quite understand his reasoning there unless he thinks there's something else causing the pain. I don't know what that could be as I've had colonoscopies and MRI's and other tests by the dozens. Plus, I've been "skipping" around to dr's for several years now having this tested and that tested and, after a while you think, why bother? They aren't going to find anything wrong with me. So, I have just learned to live with the pain and will continue to do so.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 4/15/2008 8:42 AM (GMT -7)   
<<because of how the g.b. lies, there are major risks in having the surgery, even with a diseased one.>>

I have to say, NO ONE told me this before removing my gall bladder. I was made to understand it was about the most routine laproscopic surgery done. Right up there with having a pace maker put in in terms of low-risk.

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/15/2008 7:39 PM (GMT -7)   
I am very sorry to hear about your pain, and even more sorry to hear about how long you have had it. I have been trying to figure out whats wrong with me for about 4 years, and i guess i am stuck on IBS, but 20 years of pain has got to suck a lot more.
What types of pain are you having, like just pain or going to the washroom upset stomache type of thing, and have you ruled everything out?

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/15/2008 10:25 PM (GMT -7)   
     The danger comes from the fact that doing it laproscopically, they can't be entirely certain which tube is the main bile tube and which is the tube leading to the g.b. that they want to clip. (this is because all of these lie in the layers of fatty tissue we all have.  They want to be completely sure which one they are clipping so you don't have to go back in later with major complications because your bile duct can't empty at all because they've clipped the wrong tube.  The portal vein lies along the bile tube as does the hepatic artery.  All major players in sustaining life.  As I understand it, there are major risks to any major surgery, which this still is even laproscopically.  I understood and was willing to take the risks.  The surgeon was not ready to put me thru them.  I am healthy other wise, well, except for arthritis everywhere. 
     As far as symptoms, about 20 minutes to half an hour after eating, I would start to get pain in the URQ.  If I had eaten something such as pizza, onions, garlic, spicy or greasy food, I could depend on the pain getting worse, flat-on-my-back worse because in that position, it seemed to stretch things out and after about and hour or 2 in that position, the pain would start to subside.  I would then have lots of gas, burping and flatulence.  The area was also very tender to the touch.  When the pain was bad, it would radiate around my right side and into my back and up under my right shoulder blade.  After an "attack" like that, the g.b. would then ache for several days afterwards.  Or, I may turn around and have another excruiating attack right away. I can't say I ever had diarrehea or vomiting because of all this.  I am nauseaous quite often but I've found diet Ginger Ale helps tremendously with that. 
      As I"ve talked to myself today, I have decided I have nothing that death won't cure, so I'm fine.   yeah

RyanB
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/12/2008 8:25 PM (GMT -7)   
Sciencelady.
I have a very similar problem going on. no crazy pain like most gall bladder problems but im positive its my gall bladder. nausea eminating from the gall bladder area. Ive had green stool for months although not for a long time. The nausea comes and goes. sometimes it stays for days, Recently i had somthing similar to a gall bladder attack where my problem got very bad in the course of about an hour. and now ever since every thing is worse. I had drank alot of water and found it helps to thin the bile and ease the symptoms however i must of passed some sludge or something cause things really flaired up.

7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 7/13/2008 1:21 AM (GMT -7)   
Hi Ryan,
Welcome to HealingWell! :-)
Are you currently being tested for a bad gall bladder? Have you had a HIDA scan?
Hope you get to feeling better... It's best just to stick to a low residue diet.
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RyanB
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/13/2008 9:09 PM (GMT -7)   
Thanks, I have had a hida but it was ok. At the time i wasnt having problems. It actually made me beleive it wasnt my gall bladder. Untill these symptoms arose so quickly i wasnt sure.

SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 7/14/2008 8:09 AM (GMT -7)   
Have you had an Colonoscopy??
SnowyLynne


RyanB
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/14/2008 6:25 PM (GMT -7)   
No i havent. And actaully I have asked for one and my doctor said "colon cant cause nausea". At the time i took his word for it.

RyanB
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/15/2008 1:18 PM (GMT -7)   
I went to my doctor today and he is very concerned. Thank God. The last several doctors i have gone to have sent me on my way with another ppi perscription. He had all my records there so i asked what the results of my hida scan were. 14% ejection fraction. I have thought is was my gall bladder forever now im that much more sure. I am now going for another Hida, colonoscopy, ultrasound, upper GI series maybe i more i cant remember. Anyways i feel like i might finally have a doctor who is willing to look into this problem. I am so lucky my symptoms spiked a week before my appointment with him as i had to wait a year to see him the first time.

Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 7/15/2008 4:03 PM (GMT -7)   
I am convinced that if you are not in the middle of a GB flare up, it will not show up on a HIDA scan. I was not having a lot of problems with mine duinrg my first two tests, which were inconclusive and negative, but it was rather bad when the third one FINALLY positively identified it.

Isn't 14% an automatic diagnosis of a bad gall bladder?

BTW, mine was chronically inflamed. I'd have good spells and bad spells depending on whether or not it was inflamed. They didn't know that until they took it out and dissected it, though.

RyanB
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/16/2008 7:36 PM (GMT -7)   
I would think from everything ive read that 14% would be a pretty big clue. I didnt feel anything though. I beleive i have an inflammed gall bladder too. I may have stones but probably sludge. I have good spells to. I think if my gall bladder contracts really hard it sends me into a bad spell for weeks and then i have to take it easy until the inflamation calms down. Right now im having a really tough time eating at times.

artchick1
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 1/5/2012 12:37 PM (GMT -7)   
I am very happy to say, I first posted on here about 4 years ago looking for answers to help get rid of the constant pain I had in the upper right quadrant of my abdomen. I'd had test after test, seen doctor after doctor, even talked to a surgeon who refused to take out my gall bladder. In March of 2009, I went to the doctor with symptoms they thought might be heart. They put me in the hospital immediately, hooked me up to monitors, ran tests, gave me nitro, kept me for observation all to no avail. I even went back in a week later for a stress test. The doctor who ran the test told me whatever brought me to the hospital, it was NOT my heart. I headed back to my regular doctor.
She put a call into the surgeon I had seen a year or so before who told me he would not take out my gall bladder. She had actually worked with him in her residency and was, in essence, calling in a favor. The surgeon scheduled me for surgery. Was it wrong to be ecstatic about surgery?
After surgery, the surgeon said to me, the gall bladder had been very badly infected at some time in the past and the ometum, a layer of fatty-like substance that hangs like a curtain over the organs in the abdomen to protect them, had wrapped up my gall bladder to keep the infection from spreading to the rest of my body. He said he expected great things from my surgery. (This from the doctor who had refused to do this surgery a couple of years earlier.)
It took about a year before the digestive system was back to normal and, even now, when I eat a meal with grease, I have pain. My chiropractor said the bile can still become inflamed even though the gall bladder, which is just a storage "tank," is gone. But the intense, constant pain and nausea are gone and I am feeling so much better.
The upshot is to persevere. I know I can say that now but it took 20 years to get someone to finally take out my gall bladder. It almost makes me angry to hear of people who have one attack and have their gall bladders taken out. I know there is a danger with any surgery and that was why they didn't want to just "rip out" my gall bladder. That, and I assume, the risk of being sued for malpractice. I had to sign a form that said, if this surgery didn't stop my pain, I would not sue the doctor. It was worth it.
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