PLEASE, CAN SOMEONE HELP ME FIND A GASTROENTEROLIGIST THAT CAN HELP ME MANAGE THE PAIN OF SPHINCTER OF ODDI DYSFUNCTION. There are no specialists in this area who can do manometry of my liver. In 2002, Dr. Bailey at Duke Univ. made three attempts in a period of nine months to access the bile duct and measure the pressure inside my liver. He was unable to do the manometry and I developed a severe case of pancreatitis. The second attempt he was still unable to do the necessary measurements, but he put a stent in my pancreatic duct (not sure why). I Have had chronic bouts of pancreatitis and have been pretty much in constant pain which escalates to what I call "mind-bending" pain 3 to 4 times a day. I DRAW UP INTO A FETAL POSITION AND CRY AND ROCK BACK AND FORTH, I CAN NO LONGER LIVE WITH THIS SUFFERING, I DESPERATELY NEED HELP NOW!!!!!!!!!!!!!!!!!!! In November 2006, I had a Gastric bypass, only after spending two hours explaining about the "liver pain" and being reassured it would have no bearing on that problem. I was fine for about a week and then I couldn't keep anything down, not vitamins, not liquids, nothing. No matter what I tried to ingest I would get severe pain in my stomach and would immediately throw up. I lost 100 lbs but couldn't stop losing. The pain in my stomach combined with the liver pain was treated with Fentanyl !00mcg patches and lortab 10 for breakthrough pain. The medicine did not touch the liver pain. Than in July of 2007 I was hospitalized with MRSA Sepsis and Osteocytoclastic vasculitis. I had many complications. Pulmonary embolism, "sm. holes". I was admitted to the hospital every month thru April of 2008. I had 2 more episodes of MRSA, pneumonia 2 times, endocarditis once and home health the entire nine months. I received antibiotics thru a PICC line because of my inability to keep anything down. The vasculitis was quite severe and the fact that MRSA requires antibiotics and the vasculitis required steroids (which suppresses the immune system) only complicated and delayed my recovery. Approximately eight months ago the pain in my liver was so severe and the pain medicine wasn't helping, I took six xanax hoping it would make me sleep through the pain. My daughter was so distraught I went to the ER and was admitted for a few days in hopes that the hospital could find an experienced physcian with extensive knowledge of Spincter of Oddi dysfunction. They were unable to locate someone in this area. I know it is dangerous to "self-medicate" and I have not done so since. I went through basic tng in the army, we were the first coed basic tng. I loved the military, I have traveled and use to be so proud of my accomplishments. I returned to nursing school and eventually graduated. I continue to renew my RN license every year even though I have not worked since 2001. I was an oncology/hospice nurse, I miss that more than anything. Nothing, absolutely nothing in my entire life has caused the kind of pain I am in with my liver area. I have osteoporosis, osteopenia, fibromyalgia and lupus (some doctors say "yes" to lupus, some so "no", most say yes. And as for the fibromyalgia, there is no test to confirm one way or the other. I wonder if it is possible that all of these symptoms are related to one diagnosis.
Currently, the pain in my liver area is disabling me. I can't get out of bed for weeks at a time. I keep a heating pad on that area constantly. I have a wonderful husband, however the intimacy is practically non-existent this makes me very sad. I feel like such a burden, he reassures me I'm not. He took me to the ER last week, the pain was impossible to bear. I was given morphine which didn't help much so he gave me dilaudid, this did help for awhile. He stressed I needed to find a doctor familiar with sphincter of oddi dysfunction and get into a pain clinic and don't stop going (as I have done in the past). Yes, I desperately need something for pain control but not forever! I have had no biopsy of the liver or the duct, no manometry and possible other studies. I really need someones' help. I don't feel that all the tests have been exhausted. It was never explained to me how severe the pain would be or any kind of prognosis for this problem. When the pain is so intenses as it has been in past weeks, it is impossible to wrap my mind around it, I truly feel like someone has there hand clutched around my liver and is twisting it. I don't know how much longer I can handle this. PLEASE, IF THERE IS A PHYSCIAN WILLING TO HELP ME TRULY GET TO THE BOTTOM OF THIS, I WOULD BE INDEBTED TO FOREVER. I want to be well, that is all I want. With all the pain combined together from my other health problems, that is a fraction of how intense the pain in my liver area is.
Any reply is appreciated maybe there is someone who has had the same problem and can just tell me I am not alone with this problem.