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  • Sphincter of Oddi maybe, but anyone with more nausea than pain?

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    Old 11-28-2009, 12:56 PM   #1
    lovestruffles
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    Sphincter of Oddi maybe, but anyone with more nausea than pain?

    I had gallbladder out in May. Did ok until 2 months ago, now wake up with nausea and some pain but not a lot. Been to gastro who sent me to SOD expert. He ordered HIDA scan with CCK but he would be willing to do ERCP even though with this type (type III), less than 50% success. I'm terrified of it!

     
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    Old 11-28-2009, 03:01 PM   #2
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    hi i have SOD but havnt had the operation as of yet............i have bouts of really bad neasua and have had it constantly of and on............has flared up again i think the SOD is backing up bile etc cause its really tight and giving me stomach inflamation ie gastritis

    sux big time...............i should go and get the operation!!!

     
    Old 11-28-2009, 06:28 PM   #3
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    My friend went into a coma for two months from a ERCP. I have the same problem but I would just suffer than have a ERCP.

     
    Old 12-02-2009, 10:43 AM   #4
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by nessie01 View Post
    hi i have SOD but havnt had the operation as of yet............i have bouts of really bad neasua and have had it constantly of and on............has flared up again i think the SOD is backing up bile etc cause its really tight and giving me stomach inflamation ie gastritis

    sux big time...............i should go and get the operation!!!


    What happens if you just let it go?

     
    Old 12-02-2009, 11:22 PM   #5
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    not sure what you mean by just letting it go!!! i def have gastrits back and its killing me am ringing tomorr to get onto a specalist again so over this.

     
    Old 12-03-2009, 07:09 PM   #6
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Just be careful who you go to for ercp. Make sure he does at least 1-2 a week. I would only trust a few such as Drs in Indiana and Dr cotton or hawes at MUSC in SC. These guys have done tons. Cotton has done over 15,000. Acute pancreatitis can be caused by ercp and that can kill you. You want to make sure they stent you when they do the ercp this reduces the risk a bit. The stent falls out in 2 weeks usually and if not they go in to take it out.


    If you let SOD go then you may end up with pancreatitis from the bile and pancreatic juices backing up but some get chronic pancreatitis even with ercp with Sphincter of Oddi dysfunction . The two seem to go together in a lot of people. Its best to be evaluated by one of these drs who specialize in it so they can give you a better answer for your situation. There is no definite cure for SOD this tends to be a lifelong issue. Many have to keep going back for cuts in the duct because they can scar over time .

     
    Old 12-04-2009, 06:35 AM   #7
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by nessie01 View Post
    not sure what you mean by just letting it go!!! i def have gastrits back and its killing me am ringing tomorr to get onto a specalist again so over this.
    What I mean it is that you don't do anything about it - like most people get a ERCP but there is a 50% chance it won't work. I don't want to take the chance so I will just suffer the pain but I hope my condition doesn't get worse.

     
    Old 12-04-2009, 06:38 AM   #8
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by sunsetbeach View Post
    Just be careful who you go to for ercp. Make sure he does at least 1-2 a week. I would only trust a few such as Drs in Indiana and Dr cotton or hawes at MUSC in SC. These guys have done tons. Cotton has done over 15,000. Acute pancreatitis can be caused by ercp and that can kill you. You want to make sure they stent you when they do the ercp this reduces the risk a bit. The stent falls out in 2 weeks usually and if not they go in to take it out.


    If you let SOD go then you may end up with pancreatitis from the bile and pancreatic juices backing up but some get chronic pancreatitis even with ercp with Sphincter of Oddi dysfunction . The two seem to go together in a lot of people. Its best to be evaluated by one of these drs who specialize in it so they can give you a better answer for your situation. There is no definite cure for SOD this tends to be a lifelong issue. Many have to keep going back for cuts in the duct because they can scar over time .

    Boy this does not sound good - I wish they told me all this when I got my gallbladder removed. I am always the percentage that something goes wrong. My friend went into a coma for two months and she had a very good doctor who performs them all the time. I just had my liver enzymes go up slightly. I have had no fever or other symptoms. I don't even know if I have SOD but it sure does sound like my symptoms.

     
    Old 12-04-2009, 07:27 AM   #9
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by gigi11 View Post
    Boy this does not sound good - I wish they told me all this when I got my gallbladder removed. I am always the percentage that something goes wrong. My friend went into a coma for two months and she had a very good doctor who performs them all the time. I just had my liver enzymes go up slightly. I have had no fever or other symptoms. I don't even know if I have SOD but it sure does sound like my symptoms.
    That is terrible about your friend. Its such a risk with the ercp. I am still debating letting Dr cotton do it . He is going to do MRCP first. I prefer him to do the mrcp because I trust their interpretation of it better than my local GI Dr and radiologists. Most people who do not see this or work on patients with SOD or pancreatic issues everyday can miss things when evaluating for this. My local GI even told me he prefers me to go to one of these drs because of the risk of harm with ercp and these drs are better at diagnosing issues. My GI has actually had a patient die after one ercp he did with his attending years ago. If cotton does the mrcp I figure I can get a better interpretation of my situation and course of action to make me more comfortable. I will ask him about what could happen specifically if I do not get ercp. I am having such a hard time with eating and cramping in that area I may have to . I have never had a fever with mine either.

    I wish I would have figured out the SOD before my gallbladder was out as well. From what I have read SOD can actually be what causes the gallbladder to go bad. The backup of juices can cause the destruction of your gallbladder. Mine was functioning at 22% so if I had maybe waited and had a dr to evaluate for sod then I could of left the gallbladder in a while longer with treatment for sod. One theory is the gallbladder takes the pressure from the malfunctioning sod and therefore the pain is not as bad with it in and then when you get it out you do not have anything to take the pressure so you feel the pain and spasms from the sod more. The problem is most drs will not begin this investigation to look for sod until after the gallbladder is removed. I was able to take morphine before with no problems to help pain. Immediately after surgery in the recovery room I was on iv morphine and it was making the pain worse. I was in terrible pain I only felt better until after they stopped the morphine. It was causing my sod to spasm. The nurses at the time had no idea what was going on and just said gas. I had no tests in recovery for what was happening. They just thought the morphine should be making be better and for some reason it was not.

     
    Old 12-04-2009, 10:52 AM   #10
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by sunsetbeach View Post
    That is terrible about your friend. Its such a risk with the ercp. I am still debating letting Dr cotton do it . He is going to do MRCP first. I prefer him to do the mrcp because I trust their interpretation of it better than my local GI Dr and radiologists. Most people who do not see this or work on patients with SOD or pancreatic issues everyday can miss things when evaluating for this. My local GI even told me he prefers me to go to one of these drs because of the risk of harm with ercp and these drs are better at diagnosing issues. My GI has actually had a patient die after one ercp he did with his attending years ago. If cotton does the mrcp I figure I can get a better interpretation of my situation and course of action to make me more comfortable. I will ask him about what could happen specifically if I do not get ercp. I am having such a hard time with eating and cramping in that area I may have to . I have never had a fever with mine either.

    I wish I would have figured out the SOD before my gallbladder was out as well. From what I have read SOD can actually be what causes the gallbladder to go bad. The backup of juices can cause the destruction of your gallbladder. Mine was functioning at 22% so if I had maybe waited and had a dr to evaluate for sod then I could of left the gallbladder in a while longer with treatment for sod. One theory is the gallbladder takes the pressure from the malfunctioning sod and therefore the pain is not as bad with it in and then when you get it out you do not have anything to take the pressure so you feel the pain and spasms from the sod more. The problem is most drs will not begin this investigation to look for sod until after the gallbladder is removed. I was able to take morphine before with no problems to help pain. Immediately after surgery in the recovery room I was on iv morphine and it was making the pain worse. I was in terrible pain I only felt better until after they stopped the morphine. It was causing my sod to spasm. The nurses at the time had no idea what was going on and just said gas. I had no tests in recovery for what was happening. They just thought the morphine should be making be better and for some reason it was not.


    I just don't want to risk I will deal with the pain. Unless I end up in the hospital then maybe.

     
    Old 11-02-2010, 11:25 AM   #11
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    Re: Sphincter of Oddi maybe, but anyone with more nausea than pain?

    Quote:
    Originally Posted by lovestruffles View Post
    I had gallbladder out in May. Did ok until 2 months ago, now wake up with nausea and some pain but not a lot. Been to gastro who sent me to SOD expert. He ordered HIDA scan with CCK but he would be willing to do ERCP even though with this type (type III), less than 50% success. I'm terrified of it!
    I see you posted this some time ago, but I to have the same problem. I have been told by a doctor at Cedars Sinai that he is 75% sure I have SOD. The pain, well, I have been living on pain pills, but the nausea. OMG, the nausea just makes me want to cry at times. I have been taking nausea medication for almost a year. Both are for people that have cancer so you would think it would help. The one medication just makes me loopy and the other just doesn't seem to do a thing. My GI doctor is totally against doing the ERCP. He has scared me to death about what could follow telling me I could end up worst instead of better. He would be the one who sent me to Cedars in the first place. I just don't which way to go. Did yours ever resolve? Did you have the ERCP done? I did have my gallbladder removed a little over a year ago, but it never fixed a thing. In the mean while I have had yet another 3 surgeries done trying to get "fixed". Nothing works. I like you are just so scared as to what to do. My GI doctor at Cedars also is suppose to be top in his field, yet he even sort of shakes his head. I need to trust in my doctors, and when they are unsure how am I to handle it? I have almost learned how to live with the pain. It's at like a level 3, but this damned nausea, and I never know when it's going to hit me, but I rarely go though an entire day without getting it. Food doesn't seem to matter, if I eat or not though I have dropped 20+ pounds in the past few months. I mean who wants to eat when you feel that way? Please if you could get back to me and let me know what you ended up doing for this.

     
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