After a year and a half here in Savannah and some of the worst treatment I have ever received I had to go to the Hospital on Mothers day this year and finally got diagnosed.....I have SPHINCTER OF ODDI DYSFUNCTION. Yup turns out I am NOT crazy, this PAIN (yup, I used it the big four letter word) is not in my head....it is right where I said it is and have said all along. I have met some completely crazy people before in my life but not one of them was able to make their liver enzymes fluxuate. I had my gallbladder removed on June 1st 2011 but the same pain (actually significantly worse pain) never stopped. It has been a complete nightmare. I was in the hosp for 22 days last year because of what was supposed to be a routine gallbladder removal. When he got in there my GB was 4x's its normal size, all of my intestines were completely knotted around a very large hernia and my appendix had stones it and had to be removed. I had been so incredibly ill before the surgery that I was significantly malnourished and was swelling on my lower extremities. I was released after 6 days but had to go back on the 9th day. I had congestive heart failure and protein malnutrition. I have NEVER recovered, in fact I am significantly worse. As this illness has evolved it came to a climax with intense overwhelming dibilitating nausea and vomiting. I was losing weight faster that I could ever imagine and was incredibly weak and basically dying. Because the #1 symptom of sphincter of oddi is Pain you can only imagine how difficult my doctor visits have been. I, according to them, am a pain med seeker or this is all psychosomatic. It is often said that God won't put any more on us then we can handle so appearantlly I have reached that level because during my hospital stay over mothers day I had a hospitalist that diagnosed me. My bile from my liver is backing up and cannot get through the sphincter of Oddi that is spasming REAL REAL BAD. I also had gastric bypass 10 years ago so fixing this is incredibly difficult. I have to go to a specialty medical center. It is Medical University of South Carolina in Charleston SC. I cannot believe how amazing my experience has been. I am so severely malnourished that I have to be on TPN feedings through a PICC line for a month or two so that I will survive the surgery.
If you have had your gallbladder removed and are still experiencing severe pain and a host of other weird symptoms but all the tests they do keep coming back normal. DO NOT let them label you. At least make them consider it. If God allows me to survive this ordeal I will make certain that somehow someway my voice and experience is heard. If I only help one person than I will have succeeded. Pain is a four letter word but not one of those that you should be ashamed to speak about. If your body is telling you something by way of symptoms and one of them is PAIN then shout it from the rooftops until someone who paid attention to the rare things in their medical books hears you. There is help out there.
The journey to this diagnosis has been so humiliating and tragic. If I didn't get the malnutrition I am convinced that I still wouldn't be getting help. The doc at MUSC told me the average diagnosis of Sphincter of Oddi is four years. It is so incredibly painful and isolating and down right disgusting it is hard to talk about let alone live it day in and day out. Share this with your friends or apply it to your own situation.
Good Luck in all you health endeavors!!!! Peggy Jo