Gallbladder is gone so where is this pain from?
Posted , 555 users are following.
HI
Had the dreaded gallbladder removed last June after only 7 months of pain (so I'm pretty lucky).
Everything went well, home the same day - took a good 4 weeks to feel totally better after the op but eating was ok and I don't seem to be affected by bowel issues like some people.
Only problem is I have dull ache in exactly the same place I used to get the gallbladder pain. It's not intense pain but it's in the front RUQ under my ribs and moves round the side and to my back.
It doesn't seem to appear after anything in particular and most of the time it's there constantly. Suppose it's more of an annoyance than anything else because I'm always aware of this ache. I'm quite reluctant to go to my GP because after spending about 7 months constantly in the surgery last year updating painkillers and nausea pills I don't want them to think I'm addicted to medical attention.
Just wondered if anyone had anything similar or if it's just a by-product of surgery that I'll have to get on with?
Thanks
34 likes, 1357 replies
happyalien
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Went to the GP today who is a lovely guy.
He's trying me on Omeprazole to suppress digestive acid but if there's no improvement in two weeks I have to go back.
Hopefully this will solve it (I remain optimistic) otherwise I'll be back on the carousel of blood tests and ultrasound
cbee happyalien
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cathy_94688 cbee
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i have the same problem as yours. i had my gallbladder removed 3 years ago and now im getting sever pain in the same spot that was my gallbladder. its so bad that i only can sleep on my right side. it rediates to my back and up to my sholders. it scares me most of the time. i went back to my sergon and he asured me that there is nothing wrong with me. then i went to the GI Dr. and he orderd me MRCP with many blood tests and everything came back normal. i also did CT and many Ultrosound which came back normal. he does not know why i have this pain. i dont know what else to do. i am in constant pain.
i can not sleep on my back or on my left side beacuse of the pain. i only can sleep on my right side. i also can not sit for a long time i'll get a bad pain. i can not do many house works too beacuse ill get pain.
i am afraied of this condition and i dont know what to do. does your tests comes back normal too? can you sleep any sides you want?
malena14914 cathy_94688
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Wanted to reach out and let you know you are not alone.
Have had pain for over 6 years and physician and surgeon said even though my tests were normal, it must be my gallbladder.
Had the surgery 2weeks ago and for 3 days I felt great compared to the last 6 years.
Now I'm in extreme pain. Hurts to stand, sit, or lay down. Bending down is impossible. Also taking deep breaths is an issue.
My surgeon didn't even check my stomach when I went back. Since I have been labeled as having IBS, I get this a lot.
Sorry no answers, but you are not alone.
phil97225 malena14914
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cathy_94688 malena14914
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Thanks for replying. I am sorry to hear that after six years suffering you had the surgery and now again you are in pain. I am beginning to belive that the scientists should develop a especial scan and laser that can see all these organs clearly and do its cut with a perfect technology. Because laparoscopy is not working well for everyone. My mom had her galbladder out around 20 years ago with open surgery and never had problems but I had the same surgery three years ago with advanced technology end up having sever pain. If I only knew that I could ask for open surgery I would do it.
By the way, Malena during those six years did you also have pain at behind of your stomach that you can not sleep in your back?
Did your pain give you burning feeling at your upper right side under your rib cage?
Did the burning and pain go toward your left side too?
On which side you could sleep because of the pain?
Did you also feel severe spasm under your rib cage do not let you laugh deeply and sneeze or caugh easily?
And finally did you feel blown all the time?
I am having all these problems and I only can sleep on my right side. The pain goes to my back behind of my stomach and then up to my shoulders. Then I feel something shaking in the same place that my gallbladder was. It shakes and then it burns. It scares me a lot.
All my tests came back normal. I only did not do the endoscopy and clonoscopy beacuse of my fear of the sedative meds.
I don't know what to with this pain I reasech a lot and come up with many different diagnoses. What if it's pancreas but they don't diagnose it. And what ifs.
PomPon cathy_94688
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It is incredibly frustrating. I hope your pain goes away and you forget all about it.
casey11435 malena14914
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dominique65680 casey11435
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veeren92502 happyalien
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Thanks
veeren92502 malena14914
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veeren92502 cbee
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heepee veeren92502
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phil97225 heepee
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Suesuesue333 veeren92502
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sal79893 Suesuesue333
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sarah0317 cathy_94688
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jerilyn45131 sal79893
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marengo cathy_94688
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Have you considered the possibility that your pain isn't related to the gallbladder surgery?
I had my gallbladder removed about 3 months ago and am also having pain that seems to radiate to my back, side and up to my shoulders. Not as severe as when I was having gallbladder attacks, but the pain is almost always there and makes sleeping difficult. Well, I found my answer!
I had assumed that this pain was related to my surgery because of the similiar location. But they were testing for the wrong things and looking in the wrong place. It turns out that I have an arthritic vertebrate in my lower back with a deteriorating disk. Interestingly, the pain that this causes is very similar in location to the gallbladder pain. Where the gallbladder pain radiates around the side to the back and up to the shoulders, the lowerr back arthritis pain radiates up to my shoulders and around my right side to the upper abdomen!
I've begun physical therapy for this pain, and the therapist explained to me that the pain radiates to the side and front because the abdominal muscles are forced to try to compensate for the weakened spine. This pain is so similar to where the gallbladder pain was that I wouldn't have believed it if I weren't experiencing it. It was diagnosed with a simple xray of my lower back, and hopefully I will now be able to get some relief.
I hope that you as well as the others who are experiencing the phantom "gallbladder" pain are able to find the solution for yours as well.
sally14335 sal79893
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Marketa sally14335
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Emma1001 sal79893
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fung999 cbee
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Emma1001 fung999
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LittleMissDolly Marketa
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Emma1001 LittleMissDolly
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tarq3rd cathy_94688
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I just got out of hospital for my second procedure and thought I'd reply, in case you ever come back here.
In 2009 I had my gallbladder removed. between then and now I have had some intermittent pain (Just below my sternum, not to the right like the origional gallbladder pain), but never saw the link before. This past week the pain has become much more frequent and much more intense. Almost everytime I ate I ended up in excrutiang pain, with my pain hitting 10 twice. My original gallbladder pain never got that high (although it felt pretty bad at the time).
I emmigrated to the US a few years ago and went to the ER over here this week. The pain was so bad that I vomited, which relieved the pressure and left me feeling much better. The ER doctors told me that they couldn't do anything for me since I was no longer in pain and sent me home. The next night I was back in the ER. This time they gave my morphine and sent me for a CT scan. They found nothing on the scan, but blood tests showed my liver numbers were too high so they kept me in to see a specialist.
The specialist seemed to know what the problem was within a minute of me speaking to him. His idea was that a stone had been left behing in a duct after my gallbladder was removed, it had travelled and was causing a blockage. He planned to put me under, have a camera down my throat and use an intrument to collect the stone and drag it out.
It has only been 28 hours since my procedure, but I have been able to eat without any pain so far, so I'm hopeful that the problem has been taken care of this time. Just because the scane doesn't show anything, doesn't mean it isn't there. I was told after I woke up that it was a very large stone, but that still didn't show up on the scan they did.
It's possible that you (and some of the other people commenting here) are having the same issue as me. It may be worth mentioning it to your GI specialist, so they can at least consider the possibility and test accordingly.
Hope all goes well.
tarq3rd
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tarq3rd
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https://en.wikipedia.org/wiki/Postcholecystectomy_syndrome
hope4cure tarq3rd
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suzanne89330 Emma1001
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I saw your comment to LittleMissDolly and realized that you thought she was replying to your post. She was actually replying to Marketa, a few posts above yours. Marketa was saying that after gallbladder removal, if you don't follow the low fat diet, you can get chronic pancreatitis. I'm glad that LMD wrote that because it made me nervous to read that you could get pancreatitis just from not religiously following the low-fat diet! Hope this helps!
Emma1001 suzanne89330
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Thanks suzanne89330, Yes I realised some time later that I had replied in error to the wrong post and I didn't know what to do about it!
I'm new to the website and hope no misunderstandings were created but well done for spotting whar went wrong.
2008kika tarq3rd
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I would like to know if they resolve your pain, taking out the stone from the liver.?
How do you feel now.?
Thank you
2008kika hope4cure
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BebeCece cathy_94688
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BebeCece happyalien
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BebeCece cbee
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nicole_1972 Marketa
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cathy_94688 BebeCece
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I should say nothing have changed so far. I still have pain and discomfort this time with my colon. The pain spread from the upper right side to the upper left side and to the bottom of the colon. Everything is sore and in pain I feel pressure and burning in the large intestine. I am severely constipated now. All these problems started after the gallbladder removal. I don't know what went wrong during the surgery I just know something went wrong that left me with this pain. The Surgon told me that my gallbladder was very sick but he didn't tell me that he had difficulty to remove it.
So now I don't know if he damaged the large colon, or its nerve or any other part in that area. But BebeCece I praid to God million times to help me and to heal me but didn't get any answers yet. I am tired and afraid of this situation. I am afraid to do clonoscopy as well. It freaks me out when i think what If the doctor tell me I should under go another surgery or if he tell me I have another big issue. I don't know what to do. I just pray to God and ask for his help.
carolina68962 tarq3rd
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paige2pg cathy_94688
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The symptoms you describe -except the constipation- sound very similar. I had no idea why I was experiencing such excruciating pain in my UPPER R/L quadrants and LOWER L quadrant ONLY. There seemed to be this large area of my mid-section that was completely pain free. I'd never experienced anything like this.
ER doc explained that C. Diff occurs in the large colon. He said the "path" of pain I described was where the large colon is located.
As I said before, the constipation may mean your issues are unrelated to C. Diff. I only mention it b/c it can be very serious. Between the vomiting and never-ending bouts of diahhrea, it didn't take long for me to become seriously dehydrated and in the ER. It's a very unpleasant infection to say the least!
https://patient.info/health/clostridium-difficile-leaflet
Emis Moderator comment: I have replaced the given link with a link to the equivalent article on our site.
louis56525 jerilyn45131
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adomen.Had MRI,CT scan ,XRAYS,Ultrasound and blood work and all came back normal.The pain would come and go and be a sharp knife like pain in my abdomin.There is now a constant very very lite discomfort now in my side but still very sharp pains coming and going in my adomen. Cannot lie on either side and have a tiny problem drinking water!!Been to severel DR.s and no one knows what is going on.You are not alone and I think my doctor thinks i'm crazy!!!
kendra88 casey11435
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basten cathy_94688
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anne20356 Marketa
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SunShinealley1 cathy_94688
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cymthia25952 cathy_94688
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kristi011605 cathy_94688
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davidel sal79893
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I too had my gb removed about 7 months back, due to cercomstances I had to go back to work within two or three weeks from the keyhole surgery. I thought it went well, though I had quite a bit of brusing. My job consists of a lot of lifting, actually I was thinking that that's the cause as the pain increases when I have a bit f a hard day.
I'm certain that if I take your advice, which is the same as the advice my wife keeps giving me, to stay away from fatty foods, which I have been, my problem is sweets and not drinking enough water.
Anyways, I just wanted to aknowledge your advice and I am going to try harder with ny diet.
Cheers
deecarr62 cbee
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LittleMissDolly deecarr62
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LittleMissDolly suzanne89330
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LittleMissDolly Emma1001
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Ooh I've just seen this after I'd made another post saying I wasn't responding to you!
Hope you're feeling better.
Little Miss Dolly!
LittleMissDolly davidel
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deecarr62 LittleMissDolly
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jeffrey38615 happyalien
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Thank you
tiredofpain tarq3rd
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I've been to the ER and they did the same thing for me as they did for you...Morphine, CT scan, all within normal limits, sent me home. I've been to my regular doctor several times and a gastrointerologist who ordered me a colonoscopy and an endoscope. Both were "Normal". I then had MRI which was also "Normal". I've told all the doctor's that maybe it's a floating stone that keeps getting stuck in a duct somewhere but when the test don't show it, they dismiss the idea. The doctor doesn't want to see me again and I think he thinks I'm crazy.
My question to you is what kind of specialist did you see that was able to diagnose your pain? Was it simply an X-ray that found the stone? I've read a lot about ERCP. Did you have that done? My husband is tired of watching me go through these "attacks" and getting the "there seems to be nothing wrong" answer.
Any additional information you can give me would be greatly appreciated.
Ale16 cathy_94688
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I came on this forum to and found so many people's stories similar to my own. What you are describing sticks out the most to me because I feel that your symptoms are the most similar.
To everyone :
I had my gall bladder out almost two years ago at the young age of 22. It was only functioning '15%' I came to a specialist with all my symptoms and he first told me it was stress. Less than a year later I return with more severe symptoms and that's when they ran tona of test and figured out it was my gallbladder (if anyone wants more info to compare their experience I can post my entire timeline of what I went through and still going through)
I have "painful attacks/episodes" randomly and the pain is overwhelming. Begins at my spine, wraps around to my abdomen I feel a tightness in my chest and the pain moves up and I literally can't breathe (I do realize it is gas) it lasts an hour and is divided into 3 episodes, I sweat profusely, lose vision, can't speak and have thrown up because the pain overwhelms me.
Currently, not going to an American doctor and will let you know more because he told me that I DO NOT have IBS (American doctors love to throw around) he is telling me I have a colon infection along with a reflux issue. I could have this colon infection for 10 years (which I have had issues for 7) and that caused my gallbladder to stop working
I hope people read this and ask one very important question. 1. WHY DID MY GALLBLADDER STOP FUNCTIONING IN THE FIRST PLACE? WHAT IS THE CAUSE?
So many times people are fixing a symptom, not the root cause of the problem.
Let me know if you see this message or if anyone can relate
Ale16 cbee
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I had my gall bladder out almost two years ago at the young age of 22. It was only functioning '15%' I came to a specialist with all my symptoms and he first told me it was stress. Less than a year later I return with more severe symptoms and that's when they ran tona of test and figured out it was my gallbladder (if anyone wants more info to compare their experience I can post my entire timeline of what I went through and still going through)
I have "painful attacks/episodes" randomly and the pain is overwhelming. Begins at my spine, wraps around to my abdomen I feel a tightness in my chest and the pain moves up and I literally can't breathe (I do realize it is gas) it lasts an hour and is divided into 3 episodes, I sweat profusely, lose vision, can't speak and have thrown up because the pain overwhelms me.
Currently, not going to an American doctor and will let you know more because he told me that I DO NOT have IBS (American doctors love to throw around) he is telling me I have a colon infection along with a reflux issue. I could have this colon infection for 10 years (which I have had issues for 7) and that caused my gallbladder to stop working
I hope people read this and ask one very important question. 1. WHY DID MY GALLBLADDER STOP FUNCTIONING IN THE FIRST PLACE? WHAT IS THE CAUSE?
So many times people are fixing a symptom, not the root cause of the problem.
Let me know if you see
cathy_94688 Ale16
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I just read your message and I am sorry that you too are suffering. Unfortunately, doctors don't know what's wrong with me yet unless I do colonoscopy and endoscopy and possibly do more invasive scan like ERCP which I am afraid of them all. Specially ERCP that can cause more harm than help. The inly thing I do now is to deal with my pain. I am kind of learning how to live with it.
And I hope that there is nothing bad going on there if it does then i am to late.
paula18265 marengo
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cpldjski cathy_94688
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irene07116 cathy_94688
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Am recently experiencing spasms of pain in stomach area which feels like the pain when I had a gall bladder...I despair!
jessi29 cathy_94688
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Gas pains can be so severe that people think they're having a heart attack.
wall1409 cpldjski
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Hi
I too have had the run around for 3 yrs quite a few hospital admittance and told anything from hiatus hernia to gastritis is cause of pain. Seen a new GI and was expecting to be sent for a liver biopsy as my enzymes are chronically elevated but go off the scale when I have an attack, pancreatis was ruled out as normal amylase. I've had mrcp ultrasound Mir Ercp all clear. Hida scan to check for sphincter of oddi but now getting Ercp manometry and either Botox or muscle cut. Hope they are right this time.
Dani023 Ale16
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I have the exact same symptoms as you. I had my gallbladder removed 4 years ago. This past Friday I had an attack where the pain was so intense I thought I was going to die. Pain nausea profuse sweating couldn't breathe! I had to call 911. Went to the hospital they did CT scan and blood work and nothing came back. It's frustrating but it is nice to know I am not alone.
jeanne1962 cpldjski
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lee79810 tarq3rd
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Thank you for your information Hun, am seeing a dr tomorrow for liver being too high and still feeling like I have my gallbladder all the time I will ask him/her weather it's a possibility that it is my problem and see whT he says.
Ahess1105 cpldjski
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mike45468 lee79810
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How did your liver test come out, wondering. If it's your liver or from the. Gaul bladder because i still have pain after 6 years of it. Removed. I take lortabs daily for stenosis so i'm worried if it is my liver.
richelle09599 cbee
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Are u still experiencing this pain?
Mine has been 3 years and It still happens. I've had multiple tests done the only diagnosis I get is gastritis and esophagitis. I'm put on prescription Pepcid or Prevacid triple the strength nothing seems to really help. I do take Bentyl for the spasms I get that knocked my breath away.
Any diagnoses yet?
Showgerts4life cbee
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karla_93568 happyalien
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I had my gallbladder removed back in 2002 nd a 6 month later I was still having the same pain...my doctor says it's my ulcers but I think it's something else because sometimes the Nexium doesn't work... but I've been on Tramadol for years for the pain nd Tylenol. I've noticed tooXoo that sometimes the meds can cause the pain..nd I drink milk to help the pain the same as I did before the removal of my GB. When the doc got inside my gallbladder was completely black nd not working at at he said I was lucky to be alive...I was also put on strong antibiotics for 21 days to be sure the infection didn't flare up..Soda doesn't help either, you have to monitor how much spices foods you eat...the more acidy foods the more pain..but always take something an hour or 2 before eating spicy foodso or high acid food including fruits and vegetables. No I'm not a doctor but have experience over the years..and it's calm the pain until the doctors can figure it out cause as of now I'm a hypochondriac..
bebe33104 Ale16
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bebe33104 karla_93568
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bebe33104 Showgerts4life
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I have found something that helps with the back pain! I had my gallbladder removed (cholecystectomy) two years ago and still have pain after eating foods high in cholesterol and hydrogenated fats and other processed foods. I try to only eat whole foods but sometimes I mess up. When I get my "phantom gallbladder pain" I can get rid of it almost instantly by lying on my stomach on the floor and placing a tennis ball below my right breast (not ON the breast but BELOW it). It will feel like it's on a rib. I gently place some of my body weight on the ball and rib and roll my body around so that the tennis ball massages the crampy area. I came up with this on my own and I know it sounds weird but it works for me instantly! My pain refers to the back and shoulder blade but after I do this massage technique it goes away completely. I also will turn over onto my back and place the tennis ball near my shoulder blade and spine and put a lot of my body weight on it and roll around so the tennis ball loosens up all those muscles. This seems to help too, but not as much as massaging front rib area with the ball. I hope you get this comment and get some instant relief! Please copy and paste this to other people suffering. NO doctor has ever been able to help me. My surgeon was NOT helpful either after he removed my gallbladder and acted like I was imagining it. Go get yourself a tennis ball. Let me know if it works for you too.
helen_06589 sal79893
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Hi just read you're post, I had my gallbladder removed also 10yrs ago and have the same pain at times. I also suffer from acid reflux problems that wake me during the night. I agree that people who have their gallbladder removed should be given a low fat diet to follow because I suffer when I'm not following it. I also agree with the drinking water advice because this helps break down fat and used to help ward off the pain of an attack pre gallbladder removal. It's all about being disciplined isn't it. I'm going to try and not eat after 6pm due to this acid reflux at night time. I need to change my habits to get some relief and sleep 😓😴
nmverde tarq3rd
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bgreen0722 cbee
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I know this post is old, but I was wondering if you ever found out what causes the acute spasm under your ribs?
bernice45845 tarq3rd
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bernice45845 hope4cure
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Ms._Strength sal79893
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basten jerilyn45131
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richard_43064 happyalien
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Can't believe my answer was never posted get checked for MALS. It's a ligament problem my daughter had. Cleveland clinic diagnosed it and did a surgery to release the ligament. Surgery one day home the next. They can also do a nerve block first to be 100 percent certain that it is the problem. Very ignored and therefore undiagnosed. And then untreated.
lesal75 tarq3rd
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basten lesal75
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lisa76923 cbee
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I came across this site and was reading some of the posts and thought I would share my story. I had similar experience after having my gallbladder out in 2004. I continued to have the pain as only described as if it were gallbladder attack continued to go to doctors with no conclusive answers I began to feel like it was in my head that's the way the doctors made me feel. It wasn't until 2014 I knew something wasn't right and insisted on answers I finally got the answers not the answer I would of hoped for but, I had finally got answers. As many of my family and friends know I’m kind of a private person and don’t share a lot about myself. So you may wonder why I’m am posting this. After struggling with an unknown autoimmune disease the time, money, misdiagnosis and treating symptoms, I was finally diagnosed with Primary biliary cholangitis (PBC) in short it is a chronic disease of progressive nature with no cure it causes inflammation of the bile ducts in the liver. This inflammation blocks the flow of bile from the liver. Bile is a fluid produced in the liver, essential for the proper digestion of fats which also helps rid the body of worn-out red blood cells, cholesterol and toxins. Eventually, the blockage of bile causes a buildup of harmful substances in the liver which leads to liver damage, namely cirrhosis (a condition in which the liver deteriorates and malfunctions) which can cause liver failure. PBC is considered to be a rare disease. Not only has getting diagnosed proven to have it's hurdles, but finding experienced medical professionals willing or experienced in the disease was trying in itself it has been a humbling experience to say the least. One of the biggest challenges has been the lack of training, experience, & knowledge of PBC. While there is a wealth of information available through the web, the liver foundation and support groups, it seems that many patients find themselves isolated and alone with lack of understanding and research on how to help the patient with any type of rare disease. Patients suffer even more when medical professional are also not properly trained to identify the signs and symptoms. The disease PBC itself only affects approximately 9000 in the USA & over 90% are women. Due to the rarity of PBC, finding qualified health care is a monumental, expensive and frustrating feat, resources are scarcely limited as well as treatment in rural areas. It wasn’t until after several years trying to figure out what was wrong, it was myself that advocated my own care, my own research, questioning my doctors suggesting my own referrals and demanded further workup. I was made to feel it was 'all in my head” as anyone who knows me I can be a force to wreckin with that’s putting it mildly. I personally insisted that one of the doctors I was referred to draw specific labs and with those results, I underlined and highlighted the questionable findings took them to my primary care physician. After sitting down with him and questioning what they were showing he listened, however, he then admitted that with the diagnosis possibilities and treatment it was 'out of his scope” and I respected that, with that he could not help me further but he did refer me to a gastroenterologist who was familiar with what he was looking at, after further labs and liver biopsy and diagnosis confirmed. Sounds pretty simple right? Not that simple as he did not have the resources and training to treat PBC so another referral to a hepatologist in Chicago at Northwestern Medical which I am fortunate and thankful that I was referred to the team of physicians that over see my care at Northwestern Medical as there is currently only one medication given to treat PBC Ursodiol it is not a cure as there is no cure for PBC it is given in hopes of slowing the progression of the disease. This last October I was informed I was a non responder to the medication. This is where awareness advocacy organizations, patients and their caregivers, physicians, pharmaceutical industry, legislators and their staff members, and the media can make a difference. My team was aware of a clinical research study Intercept Pharmaceuticals, Inc. (Nasdaq:ICPT) (Intercept), a clinical stage biopharmaceutical company that has been focusing on the development and commercialization of novel therapeutics to treat liver diseases had a clinical trial coming up and were accepting 200 participants in the nation for a trial study drug for the safety and efficacy of a once-daily treatment with OCA to slow the progression of PBC in patients who had an inadequate therapeutic response to, or who were unable to tolerate, ursodiol. The team of physicians who oversee my care referred me to this clinical trial. I went through the screening process to determine if I met criteria for the study and I did on January 29th of last year I received my first dose, even though it’s not a cure it is hope and with awareness there will always be hope for a cure that’s with any disease. In no way am I saying that the similarities indicates PBC What I am saying is sometimes we have to stand up and be our own advacates because we know what we are feeling and should never be made to feel we haven't been heard.
OrangePoppy lisa76923
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Hi Lisa, how did they come to the conclusion of the PBC diagnosis? What kind of blood tests should one ask for? Did you have constant pain? I have constant burning pain/pressure in the area where my gb was removed. I also get spasms. It's been going on for 8 years. Sometimes it eases up but never goes away.
lisa76923 OrangePoppy
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Hi! after having my gallbladder removed my ALP (alkaline phosphatase) level still remained elevated when ever I would question doctors their response was after people have their gallbladder removed it can be elevated which I found odd but they were the doctors. Yes constant pain sometimes the pain was so bad I would break out in a sweat. I still have pain but it's now more in the right upper quadrant under the rib cage and it's more of a constant pressure. In 2014 I had some routine labs done and my ALP was elevated even more so I questioned my doctor at the time and explained what I had been told over the years he didn't agree that's when I asked him to draw specific labs for CRP (c-reactive protein), ANA (antinuclear antibody) and sed rate (sedimentation rate) they came back showing something was going on that's when I was referred to gastorenterologist he ran an AMA (antimitochondrial antibody) which was positive With PBC the ALP is elevated and 95% of the time AMA is positive to confirm diagnosis they had to do a liver biopsy but strong probability of PBC if the ALP is elevated and AMA is positive. The first three test indicated there was an inflammatory response going on somewhere and with elevated ALP was indication something related to liver. I hope this helps.
OrangePoppy lisa76923
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Thank you for replying. My ALP has always been very low. Sometimes out of range low. I've questioned that also but no one has an answer. My last CRP was fine. So, I'm probably dealing with SOD III.
lisa76923 OrangePoppy
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OrangePoppy lisa76923
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I have been tested for Celiac many times. Always negative. I don't eat gluten, though. I've just finished a urine test to check for some stuff. Hopefully, I'll get the results in a few days and that will help. it's the burning pain/pressure that is driving me bonkers. Also burning stomach and reflux. I'm a mess. I regret the day I had my gallbladder removed. I never had this stuff.
lisa76923 OrangePoppy
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basten lisa76923
Posted
Finally one gi gave me anothber ct scan 5 weeks ago but thank God all ok but had pancreatitis.xmas and cos mri all ok too then woukdnt do ercp which new gi is in 3 weeks. Ive been kaughed at and lut down as 67 and history of sonatisation 2002 and delression all life yet never in all my birne days have I had such pain sunce galkblaxxer out. Its affected my boweks.i have fatty poop but slow transit tine so had to have kaxatives ehich has done mkre harm but ive also had days wbefe been in such a mess and running fkr loo.pain mostly still middle vack and keft back somdtines right side. It has maxe me severely suicidal and even no support there. Cant take pain killers they make me dkuble up.morphine awful then vomit and cant pee so catheter. I pray my new gi will do his best with ercp and something shows this time good or bad.when i had panceatitis my LFTs were high too but all normal now.havent got crones or celiac either but do have gazritis and hernia. My gp is at a loss and tries hard but given up I feel. I feel abandoned and one and my fight to keep going and getting opinions is disapoearing slowly. Thankyu. I hope youre trial proves life daving and ykure story is an inspiratuon to read. LINDA here in UK
lisa76923 basten
Posted
Hi Linda It sounds like you have been dealing with alot I hope your new GI finds answers for you. Hang in there there is hope make your voice be heard until you get answers we are our best advacates. Doctors tend to look at patients in a text book senerio aspect and we as the patient going through our experiences have to make them sometimes think out side the box. Because every patient is not always going to be that text book case. By asking questions and questioning answers that we don't understand or don't logically make sense maybe that will push the doctor to step out of the box. I have to share another story of my experience. Prior to my diagnosis I had been referred to a neurologist as my initial symptoms presented as neurological I had testing to rule out things I was diagnosed with neuropathy so the neurologist came to the diagnosis of pre-diabetes I questioned him and disagreed with his pre-diabetes diagnosis he insisted it was. With that my argument was if I truly had pre-diabetes then why would my A1C always be with in normal reference range. I'm not a doctor but that did not logically make sense that's when I insisted he draw the labs I mentioned in my initial post. His comment to me was we can draw the labs but they will come back showing nothing. Long story short he did retract his pre-diabetes diagnosis and apologised after I was finally diagnosed with PBC. Take care and I wish you the best.
basten lisa76923
Posted
People like yourself on this site have given encouragement and hope to me after battles with doctors, gastroenterologists etc..especially when tests show all clear and bloods..and one is told - all imagination even. It has been hell with a year or more with gallstones, but burning hell since the op April 15. I asked about seeing a neurologist funny the other week...nope. She says I am a medical mystery and she is trying stuff. I was on Duloxetine since xmas an anti depressant which is also for diabetic neuropathy!!.. She told me to stop it a month ago as it did nothing to help with this burning. THEN and now since I now get jaw pain and left shoulder pain real bad, as well as everything already.. I told her today. I feel she is grasping at straws. She said OK you are to take these...Adizem and said it is to do with bile etc. When I read the leaflet..they are for angina and high blood pressure and the heart. I have taken one and feel worse, but I am going to do as she says..two a day...ring her as planned Monday. Nothing absolutely nothing takes away this horrendous pain, worse as I said my evening. It has all affected my bowels which were OK up to November 14.
I wish you well too and thank anyone who shares with us as it has given me hope and I just feel soo alone and up against the big wigs i.e. GPs and consultants....who either fail to listen or as you say class us as text book cases. We are all different. I KNOW my poor body..I am the one living with this undiagnosed nightmare for 18 months since my op. I am fighting for my sanity..
PS what does PBC stand for? My liver was fine in blood tests.
OrangePoppy basten
Posted
Ladybug04 cathy_94688
Posted
You are not alone it's such a sad world that we live in with all this technology but no doctor can figure out this pain that seems to be taking over the lives of many and definitely not in a good way
mike28333 jerilyn45131
Posted
lynn74954 phil97225
Posted
Hi , Was wondering how you made out with the pain from your gallbladder. I have annoying pain under my right rib cage and still have pain between both shoulder blades when I eat. The doctor's chalk it up to gastritis but I feel like something is not right where my gallbladder used to be. I'm almost 3 weeks post-op. Did you have this kind of pain under your right rib cage for very long?
angie56915 PomPon
Posted
Hi PomPom, I know this was posted over a year ago, but I was wondering if you've gotten and results. I'm going through the same thing right now. Had my gallbladder out 3 years ago and now since October 2015 I've had the same tests done and am having the same issues. Seems like no one knows what's wrong wth me
dori77066 malena14914
Posted
Crazy to see someone who has similar things. I had gallbladder removed in October 2016. Uppper gi showed Gerd. But I continue to have pain on right side under ribs. Plus pain above belly button feels as though I'm being pinched. Feels better to lay down. Can't sit in the car, sofa, chair. Wearing anything on stomach feels binding. After reading these discussions it feels comforting. Having endoscopy on Monday, we have a shortage of gastroenterologist in our area & they are backlogged in surgicenters apparently for months. FYI. Thanks for listening & will keep you posted.
sandy59857 basten
Posted
My daughter had intense stomach pains beginning at the age of 12. They first removed her appendix. Then treated her for stomach ulcers, IBS, etc. Then a few years later removed her gallbladder. For 4 years since then she has suffered in severe pain in the upper right quandrant (where the gallbladder used to be) She has had 5 endoscopies - one with dye and an ultrasound. She has had an ERCP, 4 colonoscopies, 2 HIDA scans, a bowel emptying scan, 3 CT scans of the area, a CT scan of her brain (because she also suffers extreme nausea). 7 hospital visits just in the last 3 months. 2 of those, they kept her for one week because her heart rate was so elevated. During the last hospital visit, we were asked if she would allow some student interns to observe her. Either one of them or the doctor at the 7th and last hospital in our town came up with the idea of AIP (Acute Intermittent Porphria). I have read everything there is to read and the symptoms match. We are now awaiting lab tests. Please for those of you suffering, tell your doctors to research this rare blood condition. There are sites in the US, the UK and Spain doing Trials. 0 Report this Reply[sandy59857] ?1
sandy59857 • 3 minutes ago
I forgot to say, she vomits profusely and the pain is so intense, morphine or dilatud only dulls it - she now has a pain patch as she was referred out to a pain management doctor. Her GI told her to take anti-depressants as it was most likely in "her head". No one should have to suffer the way my child has and she just turned 22!
sandy59857 OrangePoppy
Posted
My daughter had intense stomach pains beginning at the age of 12. They first removed her appendix. Then treated her for stomach ulcers, IBS, etc. Then a few years later removed her gallbladder. For 4 years since then she has suffered in severe pain in the upper right quandrant (where the gallbladder used to be) She has had 5 endoscopies - one with dye and an ultrasound. She has had an ERCP, 4 colonoscopies, 2 HIDA scans, a bowel emptying scan, 3 CT scans of the area, a CT scan of her brain (because she also suffers extreme nausea). 7 hospital visits just in the last 3 months. 2 of those, they kept her for one week because her heart rate was so elevated. During the last hospital visit, we were asked if she would allow some student interns to observe her. Either one of them or the doctor at the 7th and last hospital in our town came up with the idea of AIP (Acute Intermittent Porphria). I have read everything there is to read and the symptoms match. We are now awaiting lab tests. Please for those of you suffering, tell your doctors to research this rare blood condition. There are sites in the US, the UK and Spain doing Trials. 0 Report this Reply[sandy59857] ?1
sandy59857 • 3 minutes ago
I forgot to say, she vomits profusely and the pain is so intense, morphine or dilatud only dulls it - she now has a pain patch as she was referred out to a pain management doctor. Her GI told her to take anti-depressants as it was most likely in "her head". No one should have to suffer the way my child has and she just turned 22!
Bouncymounsey tarq3rd
Posted
I too have had all the symptoms you've had. I've had an mr scan, blood tests and xrays, yesterday I had the camera down which too 5 minutes and they said there was nothing. So I'm left wondering what's causing this excrutiating pain! I'm on oramorphine at the minute and have been off work since January, 2 and a half weeks since I had my gall bladder removal. If anyone has any explanation that can help and get me back to a normal life minus thr pain, I would appreciate it, thank you, Marie k
Bouncymounsey louis56525
Posted
I'm the same I've had all the tests and scans and everything has come back normal. Yesterday had an endoscopy and was told everything was normal. So what I want to know is, what is causing the pain
nancy76309 lisa76923
Posted
Remarkable story. I have had the same reaction from doctors, but I keep on trying. My story is a little different. GB came out 22 months ago, and I have been sick for the last 20 months; no real pain just "sick". My life has changed, but I probably don't need to tell you that.
This forum has been a great help to me. Thank you.
MJR65 veeren92502
Posted
donna60484 cathy_94688
Posted
Hi Cathy. I just registered so I could reply to you! Have you sorted your stomach out yet?
If not please do some google searches for MALS and SMA syndrome. Basically it's something that can cause severe pain and it can be worse after eating. I have similar issues to you.
I will copy and paste my symptoms..
Basically I've had 'attacks' of stomach pain since 19 years ago. (2 weeks after my son was born.) it's been intermittent since then also.
It is agony worse than childbirth mostly and until now the Drs fobbed me off with all sorts of things for a long time. No pills have ever really helped. Oromorph helps if I am in agony. But I don't take anything else really. I'm trying aspirin in case it is MALS but I'm still undiagnosed.
The pain I get is right through the top Center of my stomach behind my sternum through to my back.
I found Last year that vomiting often stops the pain dead in its tracks! (I was given oromorph to try for pain relief as I kept ending up in an ambulance going to a&e, the medicine made me sick and the pain went!)
The attacks stopped for several years but last year came back, I had two and thought I better get my gallbladder removed as it had lots of stones in. This was the biggest mistake ever as the attacks happen so much more often now! Once it happened a few times a year and now it's every few days. Sometimes longer sometimes 3 times in a day. Happens about 5 hours after eating.
Anyway, I've got a referral to a vascular surgeon in london that my dr is putting through and I've spoken to him and another surgeon in Germany who said it sounds like I have MALS and/or wilkie syndrome! They both agreed to see me.
I have the hollow curved bit at the bottom of my back, I'm not skinny. I weigh 60 kilos and I'm 5'3. I did lose weight purposely a while ago because I was getting fat but think the attacks started before then.
I sometimes get breathing issues like I can't take a deep satisfying breath but not had that for a while.
I also have redness on my face, looks a bit like rosacea but the creams don't help.
I get a feeling before I get the pain. I know an attack is coming on, it's like sheer dread. Then I get the pain.
I think laying on my left stops/prevents me waking up in pain! The attacks happen mostly when I'm in the car as a passenger or sleeping! Or walking after eating.
Recently I ended up on google and found out about MALS and SMA syndrome. My gastroenterologist wouldn't do anything about it as he's never heard of it. In the end I wrote direct to two professors/ vascular surgeons who both agreed to see me!! One said in reply it sounds just like MALS and or 'Wilkie syndrome' (that's another name for SMA. I then got a referral from my gp and got to go see thes professor in london. They did a colour Doppler ultrasound and guess what? It showed there nightmare be something wrong with my Celiac artery!! (That's what MALS is). Also they've just done a cta c t angiogram scan and I'm now waiting to see if I have SMA or MALS.
Please all look into these things!!
The usual suspect for MALS/SMA is a young woman or older girl.
Slim sometimes tall
Can u fit your hand under you right back where your waist is if you lie on the floor? That's a sign. 'Lordosis' that's called.
Pain eases sometimes with vomiting? (SMA sign)
Pain after eating, and walking or exercise? (SMA sign)
Just google it if any of these things sound possible. Sometimes it says many with SMA are scared to eat and they lose so much weight. The more weight you lose the worse it gets. I hope this info might help someone!
danielle5252 malena14914
Posted
I know some of these posts and threads are old, but it is so nice to be able to come here and know that there is somewhere I can go where I'm not alone. Somewhere where others finally understand what I'm going through. I am really struggling through my recovery process. I was originally going through my va because 5 mos prior to the surgery this was my second severe long period attack. I went severely jaundiced, couldn't eat anything for 5 mos and I dropped down to a scary 97lbs and the va still wouldn't give me the surgery I needed. I finally went to an off post provider and they put me in as a stat case. I was so thin before surgery though that my recovery has been so hard. I force feed myself all day every day and I still can't gain weight. I get up to 101 and then by morning I'm back to 98. I don't understand how I'm supposed to survive this diet long term. Without being able to eat any regular fatty foods, I'm losing all of my body fat slowly. My breasts are completely gone now and my butt is almost gone too now. I hate looking in the mirror because it worries me how thin I've become. I'm a 29 year old single mom and haven't been able to be there for my son. I just need to know and hear that it will get better and that maybe eventually I will be able to gain weight and I won't die because of this awful situation. There are some days that I just don't feel like I can get through, but I know I have to keep pushing for my son. I just had no idea gallbladder surgery or gallbladder issues were so life changing. I feel like I'll never be, live, or have the same life I once did.
louise60437 danielle5252
Edited
I'm so sorry to read this, but I'm very similar to you. I had my gall bladder removed years ago, and still get the pain, this last episode was really bad, ended up in hospital and lasted for days.
I only weigh 55kg normally, but now gone down to 50kg, I scared to eat anything, always checking labels, it's completely taking over my life. I'm waiting for the camera down my throat, but not holding out for any answers still after reading all these comments xx
bindi4444 Ale16
Posted
Oh my goodness it's like I wrote this above!!!
I am experiencing the EXACT same pain as you!!
I had my gall bladder out last year, and the other night before I went to bed I was feeling a little 'unwell' and loss of appetite so I had some panadol and went to bed.
Woke up the next morning to severe upper abdominal pain that started getting higher and tighter across my chest and moving to my right shoulder. Pain so severe it felt like I was having another gall stone attack. Took my breath away. Took some more panadol and it didn't work.
Went to ED and pain was so bad I could nearly vomit. They took bloods, did x ray and did an ecg, all came back normal except for my blood test which said my liver was a little high, so they sent me for a abdo ultrasound a few days later.
I have had the ultrasound today and I am seeing my doctor tomorrow afternoon to get the results. I am SO glad I found his forum because I am glad I am not alone. I felt like I was going mad.
All the doctors at the hospital were saying a range of things to me... I had IBS, pancreatitis, gastro bug!! I knew it was none of those things. I originally thought because of the pain I was experiencing that I may of had heart issues but they ruled that out with the ECG. I only have a little appetite but my stomach is bloated, was your stomach bloated? I only have to eat the smallest thing and I am full.
Thankyou for posting, I now don't feel alone.
sandy59857 cpldjski
Posted
My daughters GI - says that he won't do the Type 3 because the risk of pancreatitis goes up to like 80 or 85% (and can be life threatening) after they put a stint in the duct for Type 3 - so be sure to research that before you let them do it. My daughter always has at least one liver enzyme elevated when she has attacks - never all 4 liver enzymes are high at the same time - the indicator of stones - so she's done the ERCP like you have and her GI just said it's too risky.
meanfreddy cathy_94688
Posted
wendy19051 2008kika
Posted
Hello this exact thing has happened to me twice in five years. Both life threatening because it is so uncommon to get stones without a gallbladder. Once the stones were removed life was pain free. I am on a gluten free healthy fats whole foods diet and have been for over a year. Still this happened. When they say low fat they mean "no junk food or processed foods". I'm in the discovery phase now to discover what else I can do to stop my body from creating these nasty stones that get lodged in my liver duct.
Diangel3 tiredofpain
Posted
Hi there!
I read your post and am actively seeking out patients who have been through pain after a Cholecystectomy. My daughter had returning pain and once again, was shuffled from GI to GI without resolution. We decided that it would remain in our best interest to dig ourselves, until something made sense. We also discussed Sphincter of Oddi Dysfunction (SO) and thought this may be causing her abdominal pain. After researching the ERCP as a diagnostic test, turns out it's a test that will most certainly cause pancreatitis. I've watched a symposium on SO on youtube from this year. The Doctor states the facts and it's pretty concerning... Tests are unreliable, will cause pancreatitis and surgeons, if they acknowledge the problem at all, will end up doing the surgery anyway, no matter what the tests reveal... so why do it? I'm glad we both agreed to NOT do the test. After three "pain attacks", I insisted my daughter let me take her to St. Joseph's Hospital. They did the standard tests and CT and later released her, stating her tests came back normal. Three weeks later she receives a letter from the hospital and medical records showing all the abnormalities found in the CT scan (thanks to a competent radiologist), including a very rare vascular condition called Nutcracker... this is compression of the left renal vein (just under the rib cage, mid to left side) by the Superior Mesenteric Artery (SMA) and the Abdominal Aorta. Her pain appeared after her gallbladder surgery, so the doctors had been focusing in the wrong area. I would recommend doing a little reading on this topic and seeing a vascular surgeon to rule out a vascular disorder as the source of your abdominal pain. I hope this helps.
I'm hoping to spread the word about "Nutcracker", as so many people (mostly females, young to mid 40"s) are in such debilitating pain and desperate to have relief... it seems as though they are not taken seriously and they should be.
Btw, "IBS", and I've heard this over and over again... even when they insisted it wasn't her gallbladder, but it was so infected when they took it out... they were shocked and I wasn't. Here we were again, hearing "IBS" once more. I am very annoyed by the docs who use this term. I have appropriately termed this to mean an "Ignorant Bull Sh*t" excuse. Doctors don't know what the source of pain is and want to dismiss... the patients are just too difficult to figure out, or don't fit inside THEIR box.
Be well!
Diangel3
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Libtec cathy_94688
Posted
Hey Cathy, might be a bit old but google billary sphincter of odi dysfunction or ( billary sod ).
This is probably what you have but very hard to diagnose, it's done by the Rome criteria to type 1,2 or 3.
Type 3 can be managed with meds and diet but 2 and 3 or hard to manage and options would be surgery.
Good luck.
Ashtonhall cathy_94688
Posted
Hi, I know that it's been quite some time since you place your initial post however I just thought I'd give it a shot and let you no what happened to me and this may help you if you have not found help yet. I went through the exact ordeal that you seem to have went through. I had my gallbladder removed four and a half years ago, endured repeated Visit with the doctor to no avail. I also have Crohn's disease so obviously they blame this on that and or psychological issues. Sadly it seems most of us have to take our physicians by the hand and point them in the right diagnosis and directions. I came to believe given what my research showed me over a two-month period of time that my pancreas was involved. when I went back to my GI specialist and asked for the proper testing he readily agreed. so after a year-and-a-half of apathy and misdiagnosis it was pancreatitis. This can turn into a very serious illness and taking medications to help digestion can become dangerous and also offer little to no relief. I began taking digestive enzymes before each meal and I would have to say 90% of my acid reflux & the pain in my back and the knot under my rib cage ceased to exist. the difference between taking something natural that will assist your pancreas in the digestive process versus a synthetic prescription that only takes care of the symptoms i believe is quite marked. In that in taking the digestive enzyme you are assisting the pancreas that has been weakened for whatever reason into doing its job, by taking a synthetic prescription you are only taking care of the symptom ology, the pain, the acid reflux Etc. at the end of the day I would rather assist my pancreas and give it the option for a longer life. Of course this is only one person's experience and of course only my opinion I have just been through it with the medical community and I have found that we must be our own best advocate. Good luck to you all.
danielle5252 Ale16
Posted
I agree. I have all these symptoms. I never had stones or sludge when they removed it, my gb was just really inflamed. I had a good few months in between having the surgery though and now where I feel I'm barely functioning. I had tests ran and I tested positive for a test that can be positive in autoimmune liver disease and crohns. I've been scoped for crohns so in my case I'm assuming it's more towards liver, but most medical advice will tell you if you had a bad gallbladder it started because you have a sluggish liver. I noticed as I have worsened my liver labs have been really off, bilirubin is still high. It only lowered within the first month following surgery and then started elevating again. I just wonder how many of us actually have liver problems that aren't really being addressed that in all honesty should be addressed when your gb isn't working properly.
LR41665 bindi4444
Posted
I wondered whether you came to any conclusion with regard to your pain. I'm 10 days post op and I'm having terrible pain which mirrors a gallbladder attack. It wraps around to my back - in fact my back is worse. I've been taking Oromorph, but I don't want to keep doing that.
natalie44967 Ashtonhall
Posted
BarbaraKemR LR41665
Posted
BarbaraKemR
Posted
BarbaraKemR danielle5252
Posted
julie10770 cathy_94688
Posted
How are you doing today?
i could have written your story, I have exactly what you've described. I'm miserable and depressed. I want my life back....I'm a Christian, I've prayed and asked God to heal me, so far he hasn't. But I still pray he leads me to answers.
It will be 2 years in December my GB was removed, I regret it.
trish74375 julie10770
Posted
I suffered with dàily pain with what çan only be called attacks from 1999 to 2016 when I found this site and someone suggested Omeprazole. It's an over the counter pill taken once daily. I've gone from mult attacks daily to 3 since 2016. I cant be more greatful to the person who was so helpful.
taylor54933 cathy_94688
Posted
Hello Cathy, i have the same exact symptoms and pain. My Dr.s all tell me the same thing..'everything looks normal'..ugh how i hate those words..lol..I was wondering if you received any answers. I did however find out I need a hysterectomy. Maybe you should see your gyno as it could be referred pain. Just a thought. Hope all is well!
catherine88829 taylor54933
Posted
shannon21608 bgreen0722
Posted
I started having severe pain under my ribs, to the point of being on painkillers just to function.
Long story short, the pain was caused by intestinal spasms. Because of the constant drip of bile now being released into my digestive system (since I no longer have a gall bladder to regulate it), it was irritating my intestines and they were screaming at me to make it stop.
Dicyclomine, my friend.
As soon as my first dose took effect, I was pain-free! Dicyclomine is a generic prescription smooth muscle relaxant, not a name brand, so it's not terribly expensive.
Also, probiotics helped to strengthen the protective lining in my intestines so I didn't have to take the Dicyclomine for the rest of my life.
From time to time, I take a course of probiotics again when my intestines start acting crabby.
I hope this helps you, or SOMEBODY desperately searching for an answer-- for me it was several months of pain and frustration, and many doctors and specialists, before FINALLY getting an answer!!
Blackderbyy shannon21608
Posted
Was your pain on one side? Mine is where the gallbladder was. Perhaps bile is eating away at the tube? That would make sense why Omeprazole is working. But I can't take it for long. I don't even want to.
catherine88829 Ashtonhall
Posted
ava55040 sally14335
Posted
I feel for you Sally, it’s been 10 years since I had mine out & I feel similar pain, but not yet as bad fingers crossed it won’t get that bad.
A question for everyone - has anyone noticed an itchy back on their right side. It’s an inside itch like the one you get when a sore is healing.
2017 Xmas wishes to all
Ava
david21517 marengo
Posted
ann55375 louis56525
Posted
sheila59755 dominique65680
Posted
Dominique65680 I know this post is from three years ago, however, I have the same issue as you do with gallbladder removal, it has been 7 years since i had mine removed and still have the same pain and vomiting, dr's still cannot determine what it is,
I asked Dr. if it could be from gall stones stuck in the duct and they said no (i don't agree with them), I have seen many dr's. If you ever find out what causes your pain please let me know, the last Dr. I saw said it was abdominal migraine (sorry don't think so).
ann55375 sheila59755
Posted
have you done as i have and cut out gluten and dairy and all fats from diet? Hard to know what else to do. I would eat plain anything if i could feel better.
sheila59755 ann55375
Posted
My pain is not daily, every 3-6 months I get horrible stomach ache that last 5-6 days with vomiting generally one or two of those days. I am starting to cut out all gluten and fats, have always avoided dairy. Like you I hate going to Dr's, and hospitals, the dr also gave me meds for nausea but that does not help. When all this started It took them 4 months to FIND my gallbladder they insisted that I had it removed only to find out when they went in mine was still there and so bad the Dr said if I hadn't gone in when I did I would have been in hospital within a month to have it removed. I wish SOME DR would read these post and figure out what is going on, there are way to many people posting here with the same issues and NO answers. WHY Don't the Dr's. check to see if there are Stones in the ducts, why are the ducts not removed at the same time??? This seems like such an easy fix and so many people wouldn't be in sooo much pain, if it is excess bile what should we be doing to make less bile. I hope one day there will be an answer....
sal79893 sheila59755
Posted
Good luck
jessicabug malena14914
Posted
ann55375 wendy19051
Posted
alicekay angie56915
Posted
I have been going through all the same symptoms and lost almost 10 pounds from no wanting to eat. I had my gallbladder removed in 98 and the pain recently was horrible...... I had all the tests MRI, X-ray, colonoscopy and endoscopy. Told me I have some inflation (chrones ) and scar tissue. GI Doctor said nothing he could do for me and wanted to send me to a pain specialist. I started the whole 30 diet almost 3 weeks ago and have NO PAIN!!!! It's been amazing!!!!!!! All the food has been delicious as well.... I was already eating a gluten free diet as well. I wish you all luck but this diet changed my LIFE!
Blackderbyy alicekay
Posted
Good that you are doing better. I'd like to know what foods cause you pain if/when you reintroduce them to your diet.
sandy07110 alicekay
Posted
Hi Alice, Wondered what the "Whole 30 diet" is that you are talking about?? I've been having issues on/off, as those in this site have mentioned, but has definitely gotten worse over the last month so it's pretty much every day now. I started getting really anxious until I got onto this site and read some of the stories that are just like mine. I had my gall bladder out in 2000 and didn't really have any problems like this then. I have been on the 30 Day Challenge (Danette May), clean eating, detoxs, etc. and thought I was doing so good w/trying to lose some weight too. I'm not necessarily finding that any particular foods cause the discomfort but am questioning the fats now. Have tried to just be consuming the "good fats" (avocadoes, olive oil, etc.) Do you have any other thoughts to share about your own situation?
jodi_55527 marengo
Posted
I have the same pain as before the gb was removed which is right below my breasts and under the right rib as everyone describes. Surgery was a month ago. My white blood cell count has been high for months. They just keep checking the count and not why. Very tired. For years I also had neck back and then arm pain. Tried many ways to relieve that pain. That got so bad in 2017 that I called an ortho about my arm pain. He did find arthritis in rotator cuff. S**t me with cortisone but I can tell that didn't help. He saw my MRI for neck and told me to see spine specialist. Given my history he wants to operate on C6/7. Stenosis and herniated and arthritis. Other disks are bulging. Low back is deteriorating. When I was recovering from gb and taking Vicodin it hid my neck and arm pain but now it's back with a vengeance. I'm not healthy enough to handle another major surgery though and I don't have anyone to help take care of me., but it appears necessary. Hopefully that will help stomach pain too. I'm still lost as to what to eat. I'm a picky eater and not that hungry. Plus I'm under a lot of stress now.
Blackderbyy jodi_55527
Posted
It sounds like you have a lot going on. Have the doctors done any tests as to what's causing the pain on the right? I had my gallbladder out a year ago an about 4 months ago started having pain in that area. They gave me Omeprazole which I took for two months. Now I'm taking some liver/gall cleanse until I can see the gastro and get some tests. The pills, which I think have milk thistle or something, seem to be lessening my pain. I still eat fatty foods.
I wanted to ask if have thought about seeing a physical therapist. I've been seeing one and it has helped. Of course, everyone is dealing with different situations. But I like Bob and Brad's "physicaltherapyvideo" channel on YouTube.
I hope you can find some relief!
jodi_55527 Blackderbyy
Posted
Blackderbyy jodi_55527
Posted
Yeah they did an ultrasound when I started getting the pain again and it came out clear. The Omeprazole did help me, by the way. But I don't want to keep taking it as it has side effects. I did see a specialist who ordered an MRI but my insurance denied it. My regular doctor still wants me to try to get it, and I just switched health insurance, so we'll see. It's all a hassle, I hope we can find some answers. I was going to mention that sometimes I take a pen and paper and write down what the doctor says, so I can make sure I understand and to remind myself later. And I make notes of what I want to tell the doctor. Anyway, hang in there!
ann55375 sally14335
Posted
2
Davish cathy_94688
Posted
, I can’t believe what you said is what I get all the time, I’m 39 had gallbladder take back out when I was 18, and the last 15 years have been nothing but pain that comes and goes can last up to 2 weeks of everything you said I get that pain. Don’t even get me started on burning pain under ribs. And when it’s bad on both sides but right more.
Over feeling like this, I feel like I’m a hypochondriac sometimes even tho I can definitely feel the pain, had every test you can think of and nothing to be found.
Just wish they can find out why this is all happening.
gwen45436 Davish
Posted
Hi, I have HH/Gerd dagnosed after endo. Pain on and off in right side but mainly in left. Specialist said PPI's but I said no. I take Ranitidine am and pm. Have you thought about Kinesiology - I went for a few sessions and she told me she could feel inflammation where the specialist and doc could not. She also told me I was wheat intolerant which I had no idea about. She recommended Lecithin for my cholesterol (which I never said anything to her about) and it brought it down, when I told the doc she looked at me blankly - she had never heard of it. Anything is worth a go. My session lasted over 2 hours and was incredibly relaxing.
Best £30 ever spent.
ann55375 sally14335
Posted
alissa92977 PomPon
Posted
Hello..... I just had that happen to me for a second time. I went into the er with severe pain (I couldn't talk or move). Liver enzymes elevated. Pain passed imaging all normal and blood work back to normal. I'm afraid to eat bc I'm assuming I'm making stones and they are just passing. What has been going on with you?
wormwoodbush LR41665
Posted
I know your comment was 6 months ago, but I'm wondering did you ever get a diagnosis? As it sounded like pancreatitis to me, which can often happen after a gall bladder removal operation. I had pancreatitis pre and post operatively, and I still get it occasionally nearly 6 years down the track. In fact the only reason I'm on here is because I can't sleep as I've got it again! I'm going to go to a doctor today (it's 3.30am) if the pain doesn't improve when I wake up, if I ever get to sleep!
wormwoodbush gwen45436
Posted
Why did you refuse to take a PPI, instead of the H2 receptor antagonist you currently take? I'm just curious, as PPI's are more effective and generally only need to be taken once a day, I love hearing people's thoughts on things like this. I've done Kineseology, I was a TOTAL SCEPTIC, but it took away all my thoracic back pain for 3 years, nothing had previously worked on that pain, as in analgesia or exercises, it was unrelenting, then after 3 sessions it was completely gone, it only returned about 2 months ago. I'm thinking I better book a few more sessions!
wormwoodbush Davish
Posted
I'd be asking your doctor to look into chronic pancreatitis. If it comes and goes, it doesn't sound like phantom or chronic pain, so I'd be asking for tests to see how your pancreas is doing. It may not show anything abnormal when you don't have the pain, so it might be worth waiting till you get the pain, then go to the doctor that day and get the blood tests done. I apologise if you've already had tests to check on your pancreas, I just thought it might be worth mentioning to you just in case you've never had that looked into.
wormwoodbush sal79893
Posted
I've got chronic intermittent pancreatitis, and I don't really have issues with fat in my diet, my problem is sugar, or carbohydrates. If I eat a "normal" western style diet, I get pancreatic pain, weight gain and severe fatigue. If I stick to a high protein very low carb diet, I get no trouble from my pancreas. I also lose weight and get heaps of energy. I do not eat low fat, only low carbohydrate. A lot of people who have gall bladder issues, also have fatty livers, and as silly as it may sound a low fat diet does not fix a fatty liver, as most low fat diets are high in sugar (mostly in the form of simple carbohydrates) and salt. Simple carbs, wreak havoc with the pancreas which in turn causes liver problems, and often turns into metabolic syndrome. Most people with non alcohol related fatty liver disease, also have metabolic syndrome and pancreatic issues, and the first sign is often gall stones, or gall bladder issues.
gwen45436 wormwoodbush
Posted
Hi, yes I am going back to my sessions. They really sorted me out. PPI's are evil - I will only take them if I am desperate - side effects are really bad and I keep reading how they burn into your stomach wall. When you try to come off, you are worse off than when you started them. Rebound!
Also I know they more or less knock out your own acid completely and a stomach without acid is like a heart without blood.
deecarr62 wormwoodbush
Posted
JanieDress heepee
Posted
I had my gallbladder out 4 weeks ago after having had terrible constant pain. A week after surgery I was doing great. No pain and everything back to normal. At 1 week, all of a sudden I had a terrible sharp pain that caused me to be sent by ambulance to the hospital. It was so intense that I was screaming. Begging anyone to help me. They supposedly gave me morphine 3 times that never touched the pain. This went on for days. After having spent the night in the hospital, and had some fluid drained out of the surgery area, they sddnt me home. My general surgeon never came closer than the hospital room door. Never examined me and acted as though this never happens. Really dr? How about googling my symtoms and see what pops up. Like I did when you sent me home go deal with this myself. There are hundreds of people going through it. I went home, finally had to take the pain meds they sent me home with after surgery, that I never took after surgery initially. For 2 days I projectile vomited bile. I couldn't eat anything for over a week and had watery bowels that gave very little warning they were ready to go. It's been 4 weeks or more. I'm still afraid to eat very much at all. I wake up every morning nauseated. Can't drink coffee anymore. I'm still have that constant, burning pain in my upper right side. Several times a day, it gets so bad that I have to lie down. It's the only position that allows me to relax enough to get through it. I was also prescribed Omperazole. I am starting it today. I hope it works. I'm wondering if maybe I should have not had the surgery. If anyone else has gone through this and the pain finally went away for good, I would love to hear that. Or if anyone was able to find out why this is happening?
JanieDress marengo
Posted
Blackderbyy JanieDress
Posted
Did they do any tests to find the cause of the pain, before and after your surgery? I would guess an ultrasound, MRI or endoscopy would be useful.
When I used to have the really bad gallbladder pain, no position made it better. Now, after surgery, when I get pain in that area, sometimes lying on my right side alleviates it a little. Omeprazole helped me for a few months recently. Now I'm taking some supplement from the health store.
Hope you find some relief!
JanieDress Blackderbyy
Posted
They did every test possible. My gallbladder showed thickening. He told me that the tests don't always show everything. He went on to say that others he had done surgery on, had thanked him for taking it out because it did away with their issues. He pushed me toward having the surgery. I'm wishing I had not done it. I started up my Omeprazole again yesterday. I didn't have the nausea this moring. Keeping my finger crossed. What supplements are you taking? Have they helped? I was using a lot of essential oils before my surgery (actually helped some). I'm afraid to start them back up, but I really do like the benefits I get from them.
alma82607 catherine88829
Posted
I had my gallbladder removed just over a month ago. For about three weeks I felt fine, recovering nicely. Or so I thought. This past week I have been having severe pains in my back and feeling nauseated. I am wondering if the gallbladder was the right diagnosis, since I am also having pains in my left side. Before the diagnosis, I had sever CT Scans, US, blood work and Xrays which didn't show anything wrong except an infection. Finally the ER doctor ran a HIDA scan and found that my GB was functioning at 9%. My blood pressure is spiking. I have an appointment with my GP on Monday. Hopefully he will be able to get me on the right track. Right now I am imagining the worse.
daniel04403 jerilyn45131
Posted
Hey hi. I know it have been a while that you posted this on this page but I'll like to ssk. How has it been latlely? Still pain? Prilosac have been working? Lost weight?
Any information will be great.
Thank you
aneesabb daniel04403
Posted
Hi there,
In my husband's case there was a stone remaining in the main duct after the gall bladder was removed. Second surgery took care of it. All is well now.
cil93293 cathy_94688
Posted
cil93293 cathy_94688
Posted
gil71504 cil93293
Posted
I chose the very last entry to respond to because it is the latest but this is a response to everyone.
First let me say that doctors are total morons and mostly clueless and I loathe them. Out of 1000 you might find a good one.
I got my GB removed 12 years ago and lately was having some very uncomfortable side aches in my liver area. By some miracle, not sure how, I stumbled on a B vitamin called choline which clears out a fatty liver. Just about everyone has a fatty liver especially if you have had high triglycerides for a long time. I went to a Walmart locally here in Arizona, and found choline for about $6 at 500 mg a few weeks ago. The pain in my side would vary from uncomfortable to painful especially in the night. I bought a bottle of Perrier and in my car washed down 2 choline tablets right away. Within 30 minutes the pain had substantially subsided. I mean dramatically. I kept taking the choline for the next few days especially at night and it was enormous relief. I did not limit how many I took. I then researched a little more as to the absorbability of choline and found that citicoline is absorbed at 97% in the body. I suspect that the Walmart brand is probably 20-30% absorbability. Citicoline costs about 8 times as much $40 but is well worth the money for me anyway. When I switched to citicoline at 1000 mg the pain went down 99% and is almost gone within a few days of taking the citicoline. I have also learned that my liver was probably all crudded up with fat and whatever else. I have never had a supplement work this fast and this noticeably ever. I am 60. I have also learned that a crudded up liver cannot make hormones very well and all goes out of balance with an impaired liver. My main health issue is prostate issues and these prostate issues not a single moron doctor has been able to help me with and what they proposed as cures you'd think they wanted to kill me. Prostate enlargement comes largely as an imbalance between testosterone and estrogen and guess what citicoline does to those 2 hormones? It helps to balance them out. Since I have switched over to the citicoline my side ache is 99% better and can barely feel anything. My prostate problems have also improved and the big benefit I sleep much much better and am losing weight doing nothing different. I have cut all sugars and carbs out of my diet but have done that for the last 3 years which had enormous benefits too.
So if you decide to try citicoline there is no real risk to you.
As I said I loathe doctors because I think they are largely useless morons and even dangerous. I am giving you a huge, huge tip here. If for some reason it does not work for you, don't blame me. Can't take responsibility for whatever you are doing. Either this citicoline thing works just for me and for no one else or a lot of people will get benefit. I have realized that my prostate problems started manifesting right after I got my GB removed 12 years ago. I remember that well for some reason and I now suspect that my liver probably started crudding up and my hormone balance of testosterone/estrogen started to go out of whack causing the prostate to enlarge. I suspect over the next few months that my prostate will substantially improve.
My prostate problems have nearly destroyed my life over the last 5 years except for the last few weeks where I have had substantial relief with this citicoline. My side ache is gone and I have stopped getting up at night from 8 times a night and sleeping 2-3 hours to getting up maybe 2 times and sleeping 6-8 hours.
So you see why I hate doctors so much. Not one of these morons knew this and I have spent out of pocket $100k in search of answers and it was all in $40 worth of citicoline. I do also believe that cutting all sugars and carbs out was very helpful in many ways but it did not do anything for the liver pain. The citicoline was my miracle cure. You are welcome!
daniel04403 gil71504
Posted
Gil71504,
Thank you sooo much for your effort to post your comment on citicoline. I also visted the website. I saw the product. (Black pill bottle 1000mg) Cognizin Citicoline. The only "strange" thing was that it helps fight age-related cognitive decline. Helps maintain healthy memory and cognitive function. A patented, proprietary form of the B vitamin citicoline. Supports healthy brain function but doesn't mention anything about liver or anything else but I am believing your experience. I at my 40's and 3 years with no GB but I gaven't take care of myself. I have been eating all kinds of fat foods, tons of pizza, food containing tons of sugar.
The pain in the liver area and back pain is awful. I think its time to do sonething NOW before its late.
I started to stop eating fat food for over a month and my wife has been happy I can see the difference when I wear my pants. Still have some mild pain now and then but now that summer is aroubd the corner here en Connecticut I will enjoy the weather and get in to do more walking and exercise more before the brutal winter comes back. I hate it.
I hope this product is also a miracle for me. I want to see my kids grow.
Thanks again.
Blackderbyy daniel04403
Posted
sharon2476 cathy_94688
Posted
Hi Cathy, Pancreatitis is diagnosed with bloods. So if you've had blood tests done, it should have been picked up. If you are worried, ask your Doctor to test for it.
lori08238 bebe33104
Posted
I get the phantom gall bladder pain occasionally, since I had my gall bladder removed in 2007. The last time I had it was about 2 years ago and it lasted little less than a week. I've changed my diet, drink more water, exercise a few times a week.
Yesterday, about 2 hours after a chiropractic appt., I started getting that same phantom gall bladder pain. Like I've got a large pocket of gas, or the large intestine holding matter in a spot for a long period of time. It's been 24 hours now and getting worse. I've been reading for about an hour now about all of the different patients and what they've been through. A few people that have had a conclusion. Then I came across bebe33104's post about it being possibly muscular?
I've had a small foam roller for about a year now, just used it a few times for upper leg pain. I got down and laid on my stomach, put the small roller under my rib and laid on it a minute, and then rolled around on to my side and a bit on my back and WOW!!! the pain immediately went from a "10" to a "5". IT MUST BE MUSCULAR!!!
Thank you BeBe33104!!! I'll keep working on that area to see if it breaks up completely.
I thought for sure I'd need to get an x-ray or something. Thank goodness I took some odd advice and saved myself time and money.
johnette_68826 cathy_94688
Posted
Hello, it's been awhile since you posted but i was wondering if your pain went away? I am experiencing similar symptoms. Hope you are better, please send an update.
richard61401 happyalien
Posted
supressing stomach acid production will not solve anything. stomach acid is what signals bile production/ excression. PPIs should not be taken. you need to invrease stomach acid production not reduce it.
johnette_68826 cathy_94688
Posted
Hi Cathy, I know its been years since your post and wanted to check how you are now? I am experiencing similar symptoms.
Fred_Flintstone richard61401
Posted
PPIs such as Omeprazole can be used for such issues as Barretts.
Angel_Uk basten
Posted
Hi Lisa. PBC stands for Primary biliary cirrhosis (PBC): A liver disease caused by an abnormality of the immune system. Small bile ducts within the liver become inflamed and obliterated. Backup of bile causes intense skin itching and yellowing of the skin (jaundice). Your right we know our own bodies and go through the symptoms ever day. Sick of hearing IBS storied or going to GP who is very concerned so making an urgent referral to a consultant whom will do what? Then back home to suffer again. NO! You have to be your own advocate and do your own research as learned more from here than off any consultant or doctor so far. Know lots posted years ago but any info as what helped would be appreciated. good luck Lisa and all xx
samanthabull cbee
Posted
Hi
I know this was posted 4 years ago but i was wondering how you are doing? i am experiencing the same exact thing you describe and wonder if it has gotten any better or if it comes and goes.
thank you
robert_42057 samanthabull
Posted
AFTER HAVING my gall bladder out twice in nov 16 and july 17 i am still suffering todate I HAVE RIGHT SIDE PAIN AND TIGHTNESS NO ONE CAN HELP ME I HAVE TRIED EVERYONEON MONDAY I WILL TRY A NERVE BLOCK
THIS HAS BEEN A NIGHTMARE I THINK IT US ADHESIONS BUT NO ONE IN CANADA WILL TALK ABOUT THEM OR OPERATE
I KEEP TRYING TO FEEL HEALTHY
bebe33104 robert_42057
Posted
I am not a doctor. You only had one gall bladder so I'm not sure how you had it out twice. But anyway, I find if I don't drink coffee, eat dark chocolate, and stay away from ALL saturated oils I don't get the pain. I do beleive coffee is the worst.
A low fat diet in general is helpful, but I don't seem to have a problem with REAL butter and as long as I stay away from coffee I can eat beef. (which is fattier than other meats).
When I do get the pain, I put ice on it which seems to help. Also, I place a tennis ball on the floor and position it so its directly where the pain is and then lie on it for a while, kind of pressing it in using my body weight. But I am not a doctor or a nurse.
bebe33104
Posted
Also...for me the pain radiates into my back, kind of under my shoulder blade. I also roll around on the tennis ball for that too. And I lie on ice for that as well.
Pain releivers don't work for this pain, so you have to try some of the things I suggested.
But coffee is the worst! Oh if you drink alcohol the night before and then have coffee it's a nightmare. I think it's all the acid in coffee and alcohol, but thats just a guess.
ally06852 PomPon
Posted
sounds like sphincter of oddi dysfunctiono
gina36685 cathy_94688
Posted
Hope your doing better by now . The medicine they use for those scopes are okay. I actually wish they had the old medicine they use to use. got on this web site because I was getting my gallbladder pain. of course I have no gallbladder having mine out a long time ago . Usually I drink pear juice and it helps .so when. I started getting symptoms I tried apple juice till I got pears it took care of the tightness but now I am getting nervy pain .
2chr2015 happyalien
Posted
hi happy alien. Thanks for the update. How long ago since you had your gallbladder removed? its been 9 months since i had mine out and my symptoms sound just like your original post. i am debating about going to the doctor. its right upper quadrant pain just like before and also wraps around to my side and back
2chr2015 bebe33104
Posted
your symptoms sound very similar to mine also. so did you have your gallbladder out also? i have long wondered about the coffee connection
2chr2015 louise60437
Posted
hi louise. i know its been a long time since you wrote this. i was wondering how you are doing
scottishheather cathy_94688
Edited
Firstly, I am so sorry for what you're going through. I am so relieved to read your story though - we are not alone in this struggle. I had my gallbladder removed two months ago and I feel worse than before it was removed. Intermittent acute pain near the gallbladder site which my GI thinks is a Sphincter of Oddi dysfunction. suddenly wake up in the middle of the night with right-side pain, a trembling sensation that rises up through my chest and a burning sensation that runs up my right shoulder into my neck and sometimes across my back. The sensations are so intense there's no relief other than to let the episode run its course. Spent the day in the ER yesterday - all blood tests and abdominal ultrasound were "pristine". ER doc also thinks it's a Sphincter of Oddi dysfunction accompanied by post-surgery acid or bile reflux. Eating any type of fat seems to be a trigger for me. I have started taking Omeprazole. If I see improvement in a week then it's acid reflux. If no improvement it's bile reflux which requires a different regimen. #exhausted
lori26704 scottishheather
Posted
I am one month post op and feel almost exactly as you describe. Random waves of heat in my chest and a dull side ache from under ribs all the way down to hips. I know its only a month out, but the doctors tell you that you should be well past it by this point. Also exhausted 😦
scottishheather lori26704
Posted
Hello, I'm so frustrated to hear about how many patients suffer despite being told everything will pretty much go back to normal. My situation is still ongoing. My GI told me that it can take anywhere from 6-12 months for your system to re-regulate itself. Now, he suspects I have a fat malabsorption issue. He's sending me for blood tests and an endocscopy (ruling out reflux and H.Pylori infection) and in the meantime he told me to use digestive enzymes and ox bile supplements. Fat consumption continues to be a huge challenge. However, I can eat the same thing two days in a row and have completely different reactions. My words of wisdom are to see this as a journey and believe you will get back to a semblance of normalcy. Keep us posted. Hugs.
fatty89522 happyalien
Posted
thank you fir keeping us updated
I have my gallbladder removed 15 months ago. Time to time, I feel weight and pain in my right side under my rib.
I also have gas and acid reflux .
I cannot even describe it .
I did not take anything
any thoughts?
Thank you
amanda28289 phil97225
Posted
How is your pain now? how long did it take to go away? I had mine out a month ago and still in pain.
nydia18841 cathy_94688
Posted
im in the same boat.
mike63927 cathy_94688
Posted
hey any progress i have pain in ruq and luq itslike a sore pain not so painful but it scares me and doctors act like im crazy
deborah91099 suzanne89330
Posted
I just had mine out on an emergency basis a little over a month ago. I live alone and have had a lot of pain. I am also a diabetic and find my sugars are all over the place. I am secretly suspecting there is something they are not telling me but I was told that this surgeon who did my surgery in emerg does not see his gall bladder patients after. I have gone back to work in a daycare and have a lot of pain lifting the toddlers I am getting nervous thinking I am hurting myself but I was told that at 4 weeks you can do anything. I have pain in my upper right side and since I slept on my right side before I try not to now as it hurts and I wake up but often out of habit I find in morning I am on right side. Then I start my day and really if you are meant to be healed at 4 weeks either you are or you aren't. I was not told to follow any special diet and I have been eating a hamburger from mcdonalds across the street from where I work almost everyday! Yikes.
tamela86121 malena14914
Posted
Bless, this was me exactly! All scans and CT scans came back normal! Finally I was referred to Emory University gastro!
I posted about what they found in above post! Do not give up! I am NOW glad I did not!