Have any of you heard about Sphincter of Oddi Dysfuntion? That's why I went to see the GI doctor before he came up with the idea of PBC
Sphincter of Oddi Dysfuntion: Have any of you... - PBC Foundation
Sphincter of Oddi Dysfuntion
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odchacon
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Hello, I was thought to have sphincter of oddi dysfunction, because following a cholestectomy I continued to have right upper quadrant pain, which radiated into my back and right shoulder. I saw a gastro consultant who did blood tests and then found the positive ama. This was followed by mrcp (MRI of liver, bile ducts, pancreas). This noted damage to pancreas ( the gallstones had caused two admissions to Hosp with pancreatitis), and changes in the liver. I then had a biopsy which confirmed pbc. At this point the consultant felt this did not justify the pain I had, as she said the liver has no pain receptors and therefore pbc would not cause pain. I should say I had previously spent 2 years going to go with this pain, was treated for helicobacteria pylori (twice). Having raised alk phos and GGT. So by this point I was a tad frustrated, to get a diagnosis, but then be told this is not the cause of your pain.
So I was then referred to hepatologist at UCH, with a view to be tested for SOD, but he felt the test for this would be too risky given the previous pancreatitis, the test being ERCP. As SOD shows a similar blood chemistry pattern to pbc, he felt it most likely to be the pbc causing the blood results.
The upshot is, I have been in pain for more than 14 years. For the last 4 years I've been using a fentynal patch, and tramadol every day. This has made my life livable but not completely taken the pain away.
I have had hundreds of different tests, been referred to pain management etc. They suggested the pain was, visceral hyper Algesia.
Do you have pain? Have you had gallbladder problems? How did they come to diagnosis of pbc.
I think SOD can be fixed, or managed so personally I would have preferred to be diagnosed with that, than be stuck how I am now!!
I hope you get some answers, let me know how you get on.
Best wishes
E x
Hello,
I do have pains. That's my main problem. Pain in my right upper quadrant side and lower back. Kidneys are clear.
I think it got worse after my gallbladder sergury.
The GI doctor referred me the liver doctor because I tested positive for AMA M2. I had a liver biopsy done and it was negative.
Now, I wonder if it is SOD?
PBCRobertPartner
I can't speak for all but there are many good pain management doctors out there that can help have a positive influence on quality of life.
Yes, I saw pain management. They suggested the viseral hyper Algesia. He put me on some drugs usually used for epilepsy, gabapentin (not sure on spelling), the idea being it blocks pain sensations being interpreted by the brain (I think). Anyway, I had awful side affects with no apparent benefit. After that he suggested mindfulness. Once I said I had never been able to do anything like that, he seemed to lose interest, said he couldn't offer anything else.
I would say, if they haven't ruled out SOD, you should push for the manometery test, or ercp they could do a sphinterotomy, which I think is fairly simple. This does seem fairly common problem after gallbladder removal. I have suffered for years and have just come to accept it, as numerous specialists and tests have not found a cause. I wouldn't wish anyone to go through that so I hope you get some help.
Best wishes
E x
I take Gabapentin 100 mg for Sunc Headache as need it. The GI doctor suggested me to keep taking it but Gabapentin makes one of my eyes twich.
Hi I want to say to everyone how unfair it is to make you live with this pain everyday. About 6 years ago I had several episodes of extremely bad RUQ abd pain with nausea that was so bad that I was left lying on my bed for hours. I would be fine one minute then in awful pain the next. The only reason anyone took me seriously was because during one of these episodes I got into see my PCP who sent me for blood work which came back with extremely high liver enzymes. Everyone including the surgeon and myself felt it was a slam dunk for gallstones. Had it removed and within a year I began having these episodes again maybe not as bad but very painful. About 4 years ago my PCP noted elevated liver enzymes on a yearly blood test so decided to wait another month and retest to see if maybe it was lab error or just a fluke. Same thing again. That began a journey that was truly awful. I was initially diagnosed with Sarcoidosis of the liver, treated by a rheumatologist for a few years and sent back to GI doc for new onset anemia. All this time I continued with the ruq abd pain that was now with me daily with really bad pain thrown in. Again if during these really bad times if seen and blood drawn my enzymes would be 600-700. Everytime I was seen by my rhuematologist I would be asked about my pain and I always told him the same thing and I remember him saying to me that the liver does not feel pain. So I said I have no clue about that all I know is I have this pain every day and on many occasions it becomes extreme. I was very hurt that he would say this. I liked this man and did not think that he doubted my reports of pain. I had no reason to misrepresent this to him. I never one time asked or ever expected pain meds from him so what would be my reason for lying to him. Two weeks ago after another round of tests, scans, etc my GI doc who I have always thought was an ass was sitting in his office discussing my results telling me he has no reason why my enzymes are elevated but my liver looks pretty good. So basically he was telling me to go home and forget about it I'm fine. So I asked him why I was in pain everyday in which he shrugged his shoulders and stated the liver doesn't have pain receptors. ( I wonder if these people have all gone to the same school of idiot responses). So I brought up why my blood work goes crazy and he said that he would have to draw new blood work to watch what happens so I pulled out three years worth of blood work which obviously verified what I told him. So now all of a sudden he said that he wanted to do an ERCP because he thought it was a retained stone. Well guess what he said that my Sphinter of Oddi was so tightly closed that my common bile duct was 4 times the normal size. So I'm thinking I have finally been vindicated! No more will doctors be able to sit across from me and repeat the same statement "liver doesn't feel pain". Well obviously that is not true because bile ducts are in fact part of the liver so somehow it feels pain. Mostly the pain felt everyday by so many people everywhere who are made to feel that either they shouldn't feel pain or flat out must be wrong about there pain. A few days ago I had to fire my gastroenterologist over pain medication after surgery. Now I have to find another to care for me but honestly I'm not looking very quickly and when I do I believe that I will begin my interview of him by asking what his attitude is concerning pain management. Anything less than a focus on the patient will be dismissed immediately which very likely will leave me on my own. Good luck to everyone who suffers from this awful disease and when one of us finds a great doctor please spred the word because to have a smart, confident, doctor who listens to and treats patients with respect and does not discount their pain is a true find someone to be held onto with two hands. If I had such a person he would know how much I truly respected and appreciated him. That doctor and his whole office would be the first on my Christmas list. I would make sure they all knew what a true gift they are and how I not only say how much I appreciate them but I am going to show them how I feel. I will find a way to show each and everyone of that staff how special they are by making homemade cakes,cookies, pies, cupcakes, lemon lush, blueberry buckle, my mothers famous homemade from scratch chocolate cake with her homemade Arthur's icing. And for those who cannot eat sweets I will find some kind of sugar free cake,cookies.
How are you.I too have sphinter of oddi issues along with fybromyelga.if you want to chat tx bk .
