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Avatar universal

I need some advice

Hi, I am a 17 year old girl, who has suffered for 5 years with pain and nausea. At first, I had been in pain for about 6 months, before I was told I had gallstones, so I had my gallbladder out. But, I continued having the excruciating pain that was supposed to be from my gallbladder. It has been 2 years since that operation, and I continue with the pain. And the nausea has been the worst. It has gotten so bad in the past year that I am stuck with eating only crackers, and soup. No doctor has found out what it is, and I am at wits end with this. Does anyone know what this could be?
21 Responses
643374 tn?1225218818
It is called Oddi sphincter dysfunction, or formerly known as "post-cholecystectomy syndrome". You should consult to your gastroenterologist and ask for some drugs or another procedure to treat it...
Avatar universal
I agree w/MedicofzOz although I want to clarify it a bit.  First, let me say that I am not an MD so please do not take my advice over the advice of a qualified (key word) physician.  

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.  Although, judging by your age that's not yet a problem I don't think.  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, #1, this isn't what you have to begin with although your symptoms are exactly what mine were after having my gb removed, and #2 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 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'd 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,
Avatar universal
I live in Massachusetts, and I am going to see a doctor at beth israel that is supposedly top doctor. I don't know if they are that type of a specialist, but I was told by my gastroenterologist that if I have anything wrong around where my gallbladder was, that doctor will find it. I had a feeling that it might be sphincter of oddi dysfunction, never thought about pancreatitis though. Thank you for your info. and advice :)
Avatar universal
I'm so glad to hear that you're going to beth israel.  My pancreatologist's name there is Dr Stephen Freedman.  So, I don't know if that's who you're seeing but if you end up not liking the doctor you DO see (even though they're a top notch team there imho) ask for an app't. with Dr Freedman.  They're all pretty much in the same dept. anyway, so I think you'll be happy with the doctors there.  Best wishes and if you have any other questions or concerns, don't hesitate to write to me.  I'd be very happy to help in any way I can.

Avatar universal
ps  If the nausea is bad ask for phenergan or zofran (or compazine but I had an allergic reaction to compazine in that it did the opposite of what it was supposed to do, i.e., it made me more nauseous.)  I prefer phenergan over zofran but that's just a personal preference (maybe.)  It seems to work the best for eliminating nausea at least for me.
take care,
Avatar universal
I have prescriptions for both, I sometimes take 2 phenergan instead of 1 because it gets so bad. And I am supposedly going to see this doctor named dr. Pleskow? (don't know if I got it right). I will try for an appointment with Dr. Freedman though. Will the nausea ever go away even if they do find out what it is? Just need to know because it gets really depressing at times, since I've been dealing with this for so long.
Thanks so much for helping me :)
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