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pain after gallbladder removal
i had my gallbladder remover over 7 years ago and i am still dealing with the same excrutiating pain. it can happen a couple of times a month and then i have gone without pain for as long as a year. My previous doctor would prescribe me buscipan, which really helped but i have been with a new doctor now for 4 years. he refuses to prescribe it to me and has told me on each visit that its probably acid reflux. This last visit he told me its gastritus and gave me some pills to reduce acid. The pain that i experience is identical to the pain i had before the gallbladder removal and it can only be described by me as on the same level as labour pains! I have seen him countless times and he just wont listen to what im saying and refuses to refer me....any ideas of what this pain could be?? Im so frustrated and i cant find another doctor who is taking new patients...HELP!
ps What is Buscipan? I've never heard of that before. And if it was helping before, I'd put up a real stinbk about getting this new Dr to prescribe it again. After all, they're working for us - not the other way around!
This is a link to a description of a condition that unfortunately can happen after GB surgery: http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=3&disease=12&lang_id=1
You may want to read through and see if the description fits what you're going through. One way to check would be to have an MRCP to see if there are changes going on in your biliary system, or if you could possibly have stones or sludge in the bile duct - it can happen after having the GB removed.
You may want to see if staying on a low fat diet is of help.
Your doc sounds like someone you should 'trade-in' for a better model. No doc should dismiss pain out-of-hand without doing some tests and checking.
You may want to read through and see if the description fits what you're going through. One way to check would be to have an MRCP to see if there are changes going on in your biliary system, or if you could possibly have stones or sludge in the bile duct - it can happen after having the GB removed.
You may want to see if staying on a low fat diet is of help.
Your doc sounds like someone you should 'trade-in' for a better model. No doc should dismiss pain out-of-hand without doing some tests and checking.
I had exactly the same thing happen to me after gb surgery, however, imo, I am infuriated that rather than call it what is IS which is either one of several forms of pancreatitis with or without sphincter of oddi dysfunction, the medical community decided to give it a new name Post Cholecystectomy Syndrome. Which simply means, if you're not familiar w/medical terminology, post = after, cholecystectomy = gall bladder surgery, syndrome = a conveniently, ambiguous term imho, Webster's would be "1 : a group of signs and symptoms that occur together and characterize a particular abnormality or condition
2 : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern
In any case, find a pancreatologist NOT just a gastroenterologist unless you have one that stays up-to-date with modern medicine! If you've gone to the ER and been told that you do NOT have pancreatitis because your pancreatic enzymes do not rise (pancreatic enzymes amylase and lipase are often looked at to see if they rise above normal as they are SOMETIMES (but not always if they DON'T rise that is) a sign that a person is having an acute pancreatic attack.
It is likely that the ER docs aren't completely up-to-speed w/this VERY poorly understood and relatively rare disease, and do not know that in many cases, particularly, EARLY (they are loathe to use this term for reasons I'll explain later) chronic pancreatitis w/or w/o sphincter of oddi dysfunction aka SOD - the pancreatic enzymes amylase/lipase do NOT rise EVER in many people (I was a prime example of this.) For a good reference on this to print out and bring w/you to the ER, go to the Johns Hopkins web site and do a search for chronic pancreatitis and/or amylase and lipase. They have a very good article on the subject that I printed out to bring to the ER although some doctors will dismiss it anyway because it is coming from you - the patient. Sad but true. This article may also be found in the database, links section of the web site I provided below as well.
The reason I stress seeing a pancreatologist is because it took 3 years of going to gastro aka GI doc after GI doc before I finally saw the pancreatologist in Boston, MA at Beth Israel Hospital to administer the one test no-one else had given me - the secretin stimulation test. The results of this test are basically a numbering system whereby if your number is under 70 (some docs say under 80) you are considered to have pancreatitis. My number was something like 62.
Also, what state do you live in? I may be able to refer you to some good doctors depending on what state you live in...you needn't list the city for privacy factors but state would be helpful for the above reasons. But again, at the yahoo web site I provided below, they have a list of "good" doctors by state.
In any case, many GI docs will not diagnose EARLY chronic pancreatitis as by most standards chronic pancreatitis aka cp won't be diagnosed until enough damage is done to the pancreas that it is visible through imaging studies like CT scans, MRIs, etc. This damage can literally take years to occur until it is visible. Usually after many, many repeated attacks to the pancreas.
I did have one dr say something to me that resonated as the truth and has stayed with me until this day although because of the above parameters or limitations he would not diagnose me definitively with cp. Which is problematic if you need a definitive diagnosis in order to retire or to receive social security disability (the $ they take out of your checks when you work but you must convince them that you have a definitive diagnosis in order to receive this money to live on if you're too ill to work.
Anyway, this doctor said "EVERY disease process whether it be cancer, pancreatitis, ANY disease - has to begin at the cellular, molecular level. Before it can be seen even by a microscope, it exists at the tiniest, molecular level. So, just because we cannot yet see it w/our vision, even vision enhanced a million times by our current imaging techniques, it does not mean that the disease does not exist." That is such a simple yet true statement and yet doctors will not diagnose pancreatitis just by the pain, etc. They, like the true scientists they are, want what they call "objective, quantifiable evidence" and enough signs and symptoms proven out with this objective evidence in order to make a definitive diagnosis.
Hopefully, this isn't what you have to begin with although your symptoms are exactly what mine were after having my gb removed. But, if it is, I hope, unlike me, you will have other signs and symptoms that doctors can go on such as the rising amylase/lipase levels so that they DO have enough objective evidence to go on and don't have to continually play guessing games or you have to go from doctor to doctor until you find one who knows what he's talking about in regard to pancreatic illness.
But, please do yourself a favor, even to rule it out - go to see a gastroenterologist who further specializes in pancreatology - a pancreatologist. This will save you years unless you're very lucky, of having to see doctor after doctor. As I said, this disease is very poorly understood by the medical community these days. Probably due to the lack of funding that goes to other well deserved diseases like cancer and heart disease - but compared to those diseases, pancreatitis is in the stone ages when it comes to how well known/understood it is except for the very best specialized, specialists.
I had cp for 3 years before it was definitively diagnosed by the pancreatologist I didn't find until 11/06! Another thing you may want to consider is going to see a pain management specialist doctor. He/she can help with pain meds, etc., if the pain you're having is unbearable. It is best to have it managed by one doctor who is familiar with the latest methodology and medications and/or procedures to help minimize your pain.
I'd like to give you a web site to go to which was very helpful to me (more so than any doctor in terms of the things I learned there from the databases they have and links to relevant web sites as well as a forum similar to this one where the people are wonderfully kind and supportive. It is: http://health.groups.yahoo.com/group/pancreatitis/
You can feel free to click on my name as well and I believe you can email me - I'd be happy to answer any questions you may have. I just had a total pancreatectomy with islet cell transplant as well as a colectomy because the pancreatic enzymes had damaged my colon so (not to scare you!) they had to remove 70% of it. This, after only 5 years with the disease. But, that is too much info for today.
Again, I'm happy to help in any way I can and I would highly recommend and urge you to explore the links, databases and the forum at the web site I provided. I learned more there than I ever could have on my own.
Best wishes to you,
Laura
2 : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern
In any case, find a pancreatologist NOT just a gastroenterologist unless you have one that stays up-to-date with modern medicine! If you've gone to the ER and been told that you do NOT have pancreatitis because your pancreatic enzymes do not rise (pancreatic enzymes amylase and lipase are often looked at to see if they rise above normal as they are SOMETIMES (but not always if they DON'T rise that is) a sign that a person is having an acute pancreatic attack.
It is likely that the ER docs aren't completely up-to-speed w/this VERY poorly understood and relatively rare disease, and do not know that in many cases, particularly, EARLY (they are loathe to use this term for reasons I'll explain later) chronic pancreatitis w/or w/o sphincter of oddi dysfunction aka SOD - the pancreatic enzymes amylase/lipase do NOT rise EVER in many people (I was a prime example of this.) For a good reference on this to print out and bring w/you to the ER, go to the Johns Hopkins web site and do a search for chronic pancreatitis and/or amylase and lipase. They have a very good article on the subject that I printed out to bring to the ER although some doctors will dismiss it anyway because it is coming from you - the patient. Sad but true. This article may also be found in the database, links section of the web site I provided below as well.
The reason I stress seeing a pancreatologist is because it took 3 years of going to gastro aka GI doc after GI doc before I finally saw the pancreatologist in Boston, MA at Beth Israel Hospital to administer the one test no-one else had given me - the secretin stimulation test. The results of this test are basically a numbering system whereby if your number is under 70 (some docs say under 80) you are considered to have pancreatitis. My number was something like 62.
Also, what state do you live in? I may be able to refer you to some good doctors depending on what state you live in...you needn't list the city for privacy factors but state would be helpful for the above reasons. But again, at the yahoo web site I provided below, they have a list of "good" doctors by state.
In any case, many GI docs will not diagnose EARLY chronic pancreatitis as by most standards chronic pancreatitis aka cp won't be diagnosed until enough damage is done to the pancreas that it is visible through imaging studies like CT scans, MRIs, etc. This damage can literally take years to occur until it is visible. Usually after many, many repeated attacks to the pancreas.
I did have one dr say something to me that resonated as the truth and has stayed with me until this day although because of the above parameters or limitations he would not diagnose me definitively with cp. Which is problematic if you need a definitive diagnosis in order to retire or to receive social security disability (the $ they take out of your checks when you work but you must convince them that you have a definitive diagnosis in order to receive this money to live on if you're too ill to work.
Anyway, this doctor said "EVERY disease process whether it be cancer, pancreatitis, ANY disease - has to begin at the cellular, molecular level. Before it can be seen even by a microscope, it exists at the tiniest, molecular level. So, just because we cannot yet see it w/our vision, even vision enhanced a million times by our current imaging techniques, it does not mean that the disease does not exist." That is such a simple yet true statement and yet doctors will not diagnose pancreatitis just by the pain, etc. They, like the true scientists they are, want what they call "objective, quantifiable evidence" and enough signs and symptoms proven out with this objective evidence in order to make a definitive diagnosis.
Hopefully, this isn't what you have to begin with although your symptoms are exactly what mine were after having my gb removed. But, if it is, I hope, unlike me, you will have other signs and symptoms that doctors can go on such as the rising amylase/lipase levels so that they DO have enough objective evidence to go on and don't have to continually play guessing games or you have to go from doctor to doctor until you find one who knows what he's talking about in regard to pancreatic illness.
But, please do yourself a favor, even to rule it out - go to see a gastroenterologist who further specializes in pancreatology - a pancreatologist. This will save you years unless you're very lucky, of having to see doctor after doctor. As I said, this disease is very poorly understood by the medical community these days. Probably due to the lack of funding that goes to other well deserved diseases like cancer and heart disease - but compared to those diseases, pancreatitis is in the stone ages when it comes to how well known/understood it is except for the very best specialized, specialists.
I had cp for 3 years before it was definitively diagnosed by the pancreatologist I didn't find until 11/06! Another thing you may want to consider is going to see a pain management specialist doctor. He/she can help with pain meds, etc., if the pain you're having is unbearable. It is best to have it managed by one doctor who is familiar with the latest methodology and medications and/or procedures to help minimize your pain.
I'd like to give you a web site to go to which was very helpful to me (more so than any doctor in terms of the things I learned there from the databases they have and links to relevant web sites as well as a forum similar to this one where the people are wonderfully kind and supportive. It is: http://health.groups.yahoo.com/group/pancreatitis/
You can feel free to click on my name as well and I believe you can email me - I'd be happy to answer any questions you may have. I just had a total pancreatectomy with islet cell transplant as well as a colectomy because the pancreatic enzymes had damaged my colon so (not to scare you!) they had to remove 70% of it. This, after only 5 years with the disease. But, that is too much info for today.
Again, I'm happy to help in any way I can and I would highly recommend and urge you to explore the links, databases and the forum at the web site I provided. I learned more there than I ever could have on my own.
Best wishes to you,
Laura
The American Medical Association must have a site where you can search for doctors accepting new patients. In Ontario, Canada, you can go to http://www.cpso.on.ca/ (the The College of Physicians and Surgeons of Ontario). Alternately, you could probably attend an after-hours or walk-in clinic and see an on-call physician. Finally, if you still can't find a decent doctor, maybe call your local hospitals and ask for a list of physicians accepting new patients in your area. You know your own body better than anyone else and if it's telling you that you need a prescription for Buscopan, find a doctor who will either investigate your situation thoroughly to determine an mutually-acceptable solution or will write the script while you search for a doctor who will listen to you and pay attention. Hang in there, sweetie! I know it's not fun but the first step really is adequate medical attention. All the best and, please, take care of yourself!
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