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Sphincter of Oddi, GERD, ulcer or what???? Help...ideas please!!!
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Sphincter of Oddi, GERD, ulcer or what???? Help...ideas please!!!

I had my Gallbladder removed 01/05/2010. I had 108 stones inside of it. Surgery was easy. I had it done at Mayo in Rochester, MN. However, I still experience similar pain but not as bad as before the removal. I get pain in the upper right quadurant and the upper left. The pain is mostly dull but very noticeable and irritating. Once in a while they will be sharp. The "attacks" last for days. I am just getting over one now and it has been a week. I have nausea and diarrhea (yellowish) as well as bloating or distended feeling. I have an acidic stomach and feels like heartburn. I don't have it all of the time, just during these bouts. I seem to be passing food quickly, or at least it seems that way. I eat and have diarrhea soon after. I don't get severe pain after I eat, not like I had prior to surgery. I can tell you that I have more poor feeling days than good feeling days. On a scale of 1-10 for pain I would rate it a 3 most of the time with it elevating to a 6 or 7. I don't take any medications for any of it. I thought that it could be due to sitting much of the day. I cannot work yet and I spend most of my day at my computer. I don't have constipation. I notice that when I get my period it can be worse but I only get that 2 or 3 times a year because I have polycystic ovarian syndrome. I initially lost a great deal of weight prior to surgery and shortly after but have gained most of it back. I am not vomiting. It is stressful to feel this way. Could this be Sphincter of Oddi or GERD? I don't have burping or whatever but the doc did say he could see some scarring on the back of my throat. I can eat lean proteins (meats) and it seems to actually help. Not sure what that is about. Any ideas would be great. I am a 32 year old female with high cholestoral and I am overweight. Liver enzymes were very elevated before surgery (179) and almost normal (57) a few weeks afterward. I have not had any tests done other than a blood and ultrasound at follow up appointment.
Any thoughts or ideas would be appreciated. (ask me for more info if needed)
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611999_tn?1298761891
You could possibly have sphincter of oddi dysfunction and Gerd.  Both are common after GB surgery.  I do not suggest Mayo for a diagnosis of SOD.  A lot of people are mistakenly sent away from this hospital without a diagnosis when they do have it.


  SOD is typically like a cramping pain on the right side and back and epigastric area   .  CP can be in the same areas and on the left.     Chronic pancreatitis and SOD are present at the same time in a lot of people so you should get this looked at.

MY Sod attacks feel like someone punched me in the stomach.  Its like a winded feeling with pain that is sort of crampy.  I can get mild attacks of this that last off and on all day and I can get bad attacks that start mild and have me crying feeling like I am going to pass out within a minute of the attack starting.  Mine typically are relieved when I vomit.  I have been told this is because it intterupts the spasm.   My attacks also are worse during my period.  I have no idea why unless hormones irritate the sphincter.

Have your  liver levels been elevated during an attack of pain ?  .   In a lot of people they are elevated.

There are 3 types of sphincter of oddi
.
There is Type 1 dilated bile duct and elevated liver levels and pain
Type 2 elevated liver levels or dilated bile duct and pain  
Type 3 Pain only.

So if  you do not have elevated liver enzymes during attacks it does not mean you not have it.  Type 3 is just pain only  this is the most difficult to treat. Type 1 has the best prognosis with a sphincterotomy  procedure and type 2 is more a 50/50 chance of relief with sphincterotomy.

Mine typically bothers me when my stomach is empty but others it bothers after they eat.  I suggest talking to your dr about SOD and possibly getting a referral to a Dr that specializes in SOD and pancreas issues. They know what to look for and are the best.  Most GIs will not venture into diagnosing or helping these type of patients.  Most tend to say IBS or you are making it up.  This is maybe because this syndrome is not something most GIS deal with and most GIS are not comfortable with doing an ERCP to diagnose it since it is  very dangerous.

  The best Drs are  at MUSC in SC Dr Peter Cotton, Univ of MN Dr Freeman, and Univ of Indiana Dr Sherman.     You can even try to make an appointment directly with them.

The test to check for SOD  is MRCP to look at your ducts and see if they are dilated or have stones.  The other test is  ERCP with manometry to measure the pressure in your sphincter.  The ERCP is risky and can cause severe pancreatits which could land you in the hospital months.  That is why it is critical you only get this done at a center that specializes in this procedure such as those I mentioned.  If your pressure is high then they can make a cut in your sphincter to relieve the pressure.  This helps some.  In others it has to keep being repeated.  There is no real cure that works 100%.  Some people find relief from nitroglycerin, or levisin to help with the spasms .  Some even find a little relief with amitryptiline.  These drugs can help a small percentage of people so you could try it first.  Sphincter of oddi also sometimes goes along with chronic pancreatitis so they can check out this possibility as well with the ercp and and EUS procedure.  Eus is not as risky. Its more like a endoscopy.    Chronic pancreatitis or SOD do not always show elevated enzyme levels so more procedures are usually done to get a clearer picture of the problem.
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Avatar_m_tn
Thank you for responding. Does SOD cause bright yellow bile filled stool? I have it frequently and I also tend to digest very quickly. I would think that SOD wouldn't be the case since I have a ton of bile passing, not a lack of it due to constriction. The pain I get is like a running stitch but between my shoulder blades, left and right sides. Nausea is present but not a lack of appetite, I still get hungry and want to eat...I just don't in case it makes it worse. I do soups and broths to give the pancreas a rest. I have had these bouts off and on since surgery, they were worse before surgery however. So there is some improvement. I was told that it could take up to year for my digestive tract to get back to normal. I have friends and family that had GB removed and said they were back to normal with 6-8 weeks. I am going on 7 months. But I do have good days where I feel like a million dollars and use those days to go out with my husband. Those days are but a few a month and the rest I feel under par or like death. I get headaches with this also. I get the acid feeling with or without the other pain. But the heartburn isn't that bad, I can handle that easily.
I guess I am trying to figure out if SOD can be present with too much bile being passed. I don't the pale or ghost stools. Could it be an ulcer? Ugh. Sorry, this is frustrating to say the least.
Do you have any recommendations for specialists in Seattle, Washington? We are moving in 3 weeks to that area. (Husband is in the Navy, we move often). Oh, could this be stress related too? This move has me nuts. The illness just compounds it 10 fold.
Thank you again!
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611999_tn?1298761891
SOD, CP , Dumping syndrome as well as many other things can cause this yellow stool.  I have had it as well when my SOD attacks were bad so no this does not mean that you do not have sod.   I had SOD, Gerd and dumping syndrome after my surgery.   Some of us have diarrheah and some constipation.  I was on a SOD yahoo group for a while until it broke up .  We all had unique symptoms with our sod.  Some peoples attacks would bother them for days and others would have short 30 min attacks so we are all different.  

  It can take a while for you to be back to normal after GB surgery. Most people are fine in no time but others of us have problems.  If you are still having pain after 7 months I would look into ruling out SOD.  MY husband is in the army so also move often.  We travelled to SC so I could get a diagnosis.  If I decide to have ERCP I will only go back to him.  ERCP is so dangerous I really only recommend those 3 doctors.  They will tell you for sure if you have it.   I would not trust drs anywhere else for diagnosis of SOD or CP since most will not even want to venture into dealing with this issue .    What is your dr saying to you at the moment about your symptoms?
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Avatar_m_tn
I live in Rochester MN for the next few weeks and my docs so far tell my that it could be SOD but that it could be GERD too or even IBS. I get sick for days with this crap and even my "good" days aren't that great. But I have had a few great days in there where I felt so good it was like being in high school before I started really getting sick. I was just hoping that the super fast digestion and excess bile passing would help rule out SOD. My docs never mentioned that this could be an issue. I had a gallbladder packed full of stones so when they removed it, I was led to believe that I was going to be back to normal. This is the first really nasty bout in a few months. I have had others but they were short lived. Mine drag on for days and days, most was 9 days. I didn't eat for 9 days. I was on water and vegetable broth. I am fearful of the testing as I do not want to get pancreatitis.
I am moving to Seattle so the docs you mentioned are no where near where we are going to be and I do not travel well at all. It is very hard on me. I cannot fly unless heavily sedated. I usually take a train anywhere I have to go and I could not bare the 4 day trip to the east coast, especially alone. Are there any specialists on the west coast?
If I have these attacks and it is not SOD, what else is there that mimics it? I am so desperate for relief, help and answers.

Again I appreciate your help and input.
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Avatar_m_tn
I see the doctor tomorrow, not sure why I even bother but I am going none the less. I know that there is no help here for me and I am moving in 2 weeks. I am praying that I can feel well enough to travel and once I get to my new home I can fall apart there and work through it. I am so scared that my life has been reduced to living in sweatpants and t shirts because they are comfortable. A far cry from my former self. This illness has peeled the old me away. The person I am now is so much less than what and who I was. Sorry, I'm having a pity party for myself, lol.
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611999_tn?1298761891
I am wondering if DR freeman Univ of MN ( one of the docs I mentioned) could see you last minute before you move.  It would not hurt to google the number and ask.  I will ask around and see if I can find any doc who would deal with this in Seattle.  I understand about travelling it  is hard on me as well.  I had a time just going to SC from GA especially with these attacks.  We are moving to TX soon and I am worried about what I will do if I need to see the dr in SC again.  

  The only other thing I can think of is Chronic pancreatitis which usually is seen in a lot of patients with SOD.   Both can have these same symptoms of pain in the shoulders diarrheah and fat in stool.   CP can be caused by hyperlipidemia ( high cholesterol) .  With CP you are also going to want to see these same DRs.   You could possibly still have a stone stuck in your ducts .  They usually look for that with ercp and mrcp.  MRCP can miss the small ones.    

I know its a hard thing to deal with but you do need to get diagnosed so you can start the appropriate treatment.  If you have sod then you could try the meds I mentioned in the first post.  They help some people.  If CP you want to get on enzymes right away.    I will see if I can find any info about drs in seattle.
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Avatar_m_tn
Thanks so much Michell. This is suck a pain, literally. Actually the pain is manageable, I can deal with the ache. Its the Nausea that kills me. I feel like I have morning sickness nonstop...I'm not preggers, had that test a million times and again today at the docs. I am seeing the GI docs at Mayo and maybe they can refer me to Doc Freeman. I don't know though. My doc said that Mayo has made leaps and bounds to get up to speed with Johns Hopkins and a few other clinics that deal with SOD and its partner issues. My doc has a few other patients that have SOD issues and they have been getting successful treatment here in Rochester, so maybe I will get lucky here. I can't really afford the risk of the tests though. I've not had pancreatits and I am deathly afraid of getting it. I am getting an upper and lower endoscopy done this week and should have answers for GERD, Reflux and a few other possibilities. I don't suspect GERD, ulcers or reflux at all. I might have a stone but my bilirubin levels and such are normal, no fever and no other issues other than the ache under the ribs and back and the severe nausea.
I think this about the third attack I have had since GB was removed in January. I have had these 3 long term ordeals and a dozen short ones of a day or 2. I have had a few glorious days in there too where I was feeling soooo good. That is what makes me so frustrated, its like the worst tease ever! lol.
I appreciate your help, Michell and I will see if I can get in to see Doc Freeman before we leave. If anything, I may have to stay behind and get it things figured out. I don't know where I will stay and such since we have a home already in washington and i need to be there asap to sign paperwork and get my dogs (my 2 spoiled pugs) situated. Of course if I am feeling this poorly now, I may need to stay regardless and stay in a shelter or something. Our income was cut in half when I got sick so we are just barely making things every month as is now. No way to afford a hotel or additional rental out here. I am so stressed out about this and I cant imagine it helps with my illness either.
Thanks for letting me vent!
((Hugs))
Bella
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Avatar_f_tn
Hi, Bella,
I just joined the forum; it sounds as if you have been through sooo much, and still you are not yet at the root cause of the problem. But I think having those 100+ stones out alleviated the situation. I hope you do not get pancreatitis either. That's what I am struck with right now, and I have been dealing with it since early March of this year. It is difficult to be young and ill. Chronically ill. Every day I wake up, and I have to remind myself that 'it is just one day and we are taking it one day at a time'. That's just sad/depressing or what.

Stress really will aggravate the situation. I can't really offer help in the form of which doctor to see; sorry about that. However, I suggest you quickly MUST DO NOW apply for disability or social security or some kind of benefits before you dig your self into a financial ditch that you cannot get out of.

My pancreatitis has put our family in the whole several thousand dollars, and that is even with good insurance.
Please take care, and let us/me know how you and the pugs are doing?
I am offering a shoulder to cry on and a set of eyes to read all the vents :D
Sincerely,
Yuki
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1651127_tn?1301624073
Good Evening, I am speaking on behalf of my Mother, who has been displaying these symptons for the last 4 years.. She developed them after GB removal, she has since lost over 100 pounds and is in a emotional and financial hole. I have been following this very conversation for 2 weeks while tending and helping my mother through her attacks. She has made 26 Emergency room visits in three years, 22 at one hospital, to finally have a ER Dr tell me his diagnosis is opiate withdrawals after 2 IV doses of morphine in 90mins prior to seeing the Dr.. Opiate withdrawals from 10mg Narcos, 20mg Opana and 15mg Morphine that our family Dr prescribed, in addition to Dyclemine and Lorazepan.. Sounds like a contradiction if it's SOD, but anyways after the Er Dr said withdrawals my Mom quit opiates cold turkey and suffered horrible withdrawals for four days until it partially subsided, it is day  14 now, still some discomfort. What I really need is to talk to Michell221 or whomever is willing to communicate via email with me and help save my Moms life.. I am at my wits end, I appreciate everyones time and help.

Jessie
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