HELP...QUESTIONS WITH SOD

[Lisa723]

Hi,
Thank you first for listening. As I am sure any of you who have been very ill, know how frustrating it is to get anyone to listen to you when you are having trouble getting a diagnosis for an illness that is making you extremely sick.
I have been sick for 20 yrs. with NO diagnosis. I have "episodes" a few times a year where I cannot stop vomitting. I have had pancreatitis, I have had my gallbladder removed even when the surgeon said it wasnt that bad and my last episode lasted much longer than the others Each time I have one it gets worse and worse. This one last two months. I cannot stop vomitting, had terrible pain, and honestly dont know how I loved through it. I go to the emergency room, they keep me for a few hours, stabilize me, send me home and it starts all over again. I have been to gastro docs, but honestly do not have much faith in the ones I have seen here in Port St Lucie Florida.
This morning as I was watching tv, I saw a special on "Mysterious Illnesses" and the girl in this show was diagnosed with shpincter of oddi dysfunction. This really seems like what I may have. The symtoms and awful pain she went through was identical to what I have experienced all of these years.
Can ANYONE please help me, guide me in any way! I have used these type of medical boards before when my husband was diagnosed with cancer and the people were invaluble.

Any and all help is much appreciated.
God Bless!!!
Lisa

[ohiogirl]

I can totall relate on the frustration levels.  It is so unbelievable that docs don't know, and even maddening to hear of docs who actually do not believe in SOD.  Diseases of the pancreas are hard to DX, and unfortunately most docs chalk people up to alcoholics as a cause of their pancreatitis.

As far as SOD goes, I was extremely lucky to have landed in the hands of Dr. Sherman at Indiana University.  I live in Ohio, and the 3+ hour drive to go there was well worth it, and I would gladly have gone further to get such amazing care.

My SOD is not triggered by food, but hunger.  I cannot let my stomach get empty or I know I'll have an attack.  Therefore, my pain also happens mostly at night/early morning.  Same with me, all of my tests, scans, scopes came back normal and the only way to truly diagnose the type of SOD I have (there are three types) is by ERCP.  Since my SOD was very liveable, and thankfully remains so, I opted not to have an ERCP yet.

that being said, for people who are at the ERCP stage - there are a number of criteria that is very important to make sure you meet before you let someone perform an ERCP on you.  The doc should be extremely experienced as in thousands of ERCPs to be considered experienced.  Also, he should be able to perform Manometery during the procedure - this measures the pressure in your SO and determines for sure SOD.  Finally, he should be able to do a sphincterotomy and stent based on those manometery readings.  

I think too many people don't find a doctor that literally specializes in ERCP.  Sadly, so many docs out there perform them and shouldn't.  Do LOTS of research...find a published doctor and be willing to travel to get somewhere good.

And, that's about the best adivce I can give when getting a good doc.  
Good luck to you all.

[Twinstacey]

It always helps me to know that there are others out there with possibly the same problem but it frustrates me to see on this website that so many seem to have the same symtoms yet there are not enough doctors that specialize in diagnosing and treating SOD. How can so many people be suffering yet so little GI specialist have the medical knowledge to treat us???? I have had every test it seems known to man and all the test come back normal (blood work of liver and pancreas, ultrasound, endoscopy,colonoscopy, liver biopsy, CT scan, MRI, xrays, etc). I do not understand how I can be in so much pain every day yet no test shows abnormalities where the pain is. I know that the pain is not in my head, to me the pain is coming from my pancreas and liver (I feel 99.9 % sure it is the source of my pain) but yet no test comes back abnormal.  I have had my gallbladder removed also and it has not helped the pain all it has done it give me permanent diarrhea (which I take Librax for to slow ny bowels down which does help). I have a pretty much constant stabbing, pinching pain that is usually in my upper middle abdomen and radiates to my right upper abdomen. My pain does not seem to be triggered by food as it hurts me even in my sleep.  If anyone out there reads this and has any advise...please help! Thanks!

[ohiogirl]

Sorry for your suffering - I also have SOD, but not as severely as your symptoms are.  You might have both Pancreatitis and SOD at the same time which is difficult.

Mammo had good advice - get away from your current doctor.  YOu need to get to a GI who specializes in SOD and diseases of the pancreas.  There are a few places in the country, and as great as a reputation that the Mayo has for many different conditions, I have not heard good things about them when trying to explore SOD.

There are a few places in the US that I would recommend.  Indiana University, University of Minnesota and the Medical Center of Univ. of South Carolina are at the top of the list.  

In the mean time, there is a simple blood test that you can have done that can indicate the presence of SOD.  It will test your liver levels and pancreatic enzymes - have you had that done already?  Also there are meds you can try that might help - one is called Levbid (anti-spasmodic) and Elavil (anti-depressant that helps with pain mgmt.)

Good luck to you - it's very hard to fight for your cause.  Keep it up!!!  you really need to find yourself a good doctor who will believe you and help you.  20 years is too long to have to suffer!

[Morecambe]

You are suffering on two fronts:-

a) you are obviously unwell too frequently
b) you seem to be suffering from what I would call "medical discontinuity"

I don't think you can solve (a) until you solve (b).

I don't live in America but I know that you have specialist G.I. Clinics (such as the Mayo Clinics) that focus on a "clean sheet/start right back at the beginning and follow it through until the problem is solved"

My only suggestion is along the lines suggested by mammo above - i.e. second/third opinions at a specialist G.I. Clinic - also one where their "culture" is not to send a patient away undiagnosed and uncured.

regards
Morecambe

[mammo]

I'm so sorry you've had to endure all this.  Your symptoms do warrant looking into sphincter of oddi dysfunction.  I would also find a new GI doctor, it took 3 to finally diagnose my son's problem.  Because of this, I am very big on second and third opinions.  You're correct in not accepting that you have to live like this, and your doctors should have been on top of all conditions which this may relate to.  Good luck to you and take care.