Is there anyone who also suffers from this disorder? My story is posted in a responce to "lower right sided pain below rib cage". I would like to compare treatments and options. Some days it just feels hopeless. Thanx, RG
The Following User Says Thank You to rsg For This Useful Post: jilly1122 (05-15-2012)
I would like to hear your story. I wasn't sure where to find it. My doctors think that I have biliary dyskinesia, also known as SOD. I KNOW WHAT YOU MEAN ABOUT FEELING HOPELESS. I would like to compare symptoms, treatment options, etc. as well.
I hope you get this message...I just now found your post.
I suffered with sphincter of oddi dysfunction for 10 years. This condition is rare and went undiagnosed for that length of time. Finally had an ultrasound on the common bile duct which turned up dilated due to stones which couln't pass thru the too small opening of the s of O. Am told this condition is genetic. Had symptoms of high bilirubins, unbelievable rightsided pain in and under rib cage. Chronic indigestion, steatorrhea, intense itching, inability to process fats. Had a aphincterotomy one year ago. It was done via an ERCP and the bottom of the s of o (which is the muscle at the bottom of the bile duct) was cut to allow free passage of the stones. Had good results, but unfortunately got pancreatitis as a result of the ERCP and was hospitalized for a few weeks. The procedure brought relief. Finally. It would get better and worse, depending on whether the stones had passed. Went to more doctors and had more tests than I can count before I got a diagnosis.
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elizabeth
The Following User Says Thank You to elizabethevan For This Useful Post: jilly1122 (05-15-2012)
This message is for RSG and anyone else who can shine some information on this.
RSG......
I was so excited when I read your post....not because of your pain, but because I have been looking for someone like you for the longest time!
I also was diagnosed with Sphincter of Oddi Disorder about 3 years ago. It took many years before I was given the correct diagnosis. Since then I have had 11 ERCPs with many stents, sphincterotomies, etc. I have exhausted all other possibilities and am scheduled for a Transduodenal Sphincteroplasty on June 9th. Needless to say, I am very nervous. Please, please write back and fill me in on your experience, if you don't mind. I would love to talk to someone who has been through what I have. It is so rare, and then to have complications and end up getting the sphincteroplasty, is even rarer. I really look forward to your post.
To everyone else....
I would be happy to help with your questions and/or concerns. This is my first post here so hopefully I will be able to get back to your responses.
Hi,my experience with this Sphincter of Oddi thing is pretty much the same as all of yours. It started about 3 years ago.I was hospitalised 4 times with a deseased GB when they decided I had Umbilical Sepsis (a massive infection which attacked my liver,kidneys,bladder and GB).I was operated on to remove the puss which was leaking from my belly button.Nice! I was then hospitalised another 3 times with acute pancreatitis,fattty liver and stones,so they decided to take my gallbladder out. At the time my surgeon mentioned Sphincter of Oddi but I didn't really take much notice. Well,after tests,drugs and more tests I had another ERCP in Dec 02 and they performed a Sphincterectomy but accidently cut my bile duct which caused a cyst on my pancreas and infected pancreatitis! I am still in loads of pain and going to see my consultant next week. My liver tests seem ok so why the pain? can anyone help? Thanks for listening.
Okay. I hope I have found the right people for help. I had reflux surg in 1999 and gallbladder removed in 2000. I continued to have attacks resembling gallbladder attacks. The first one bad enough to send me to the hosp was in 2001. It wasn't until after many visits to the hospital that in April, they did more blood work. They kept giving me nitro-glycerin thinking it was my pulumary hypertension, but it did help. Anyway, they found that the liver and pancreas enzymes were up. To make a long story short http://www.healthboards.com/ubb/yawn.gif, I went for my first ERCP and they couldn't enter the common bile duct. I had an attack from this one. They then sent me to MUSC and they got through with normal pressures. He did place a stent and inject Botox into the sphincter though. He said the Botox would wear off in 3 to 4mths, if I had another attack then, he would cut the sphincter. If I have another attack before then, we need to look at other causes also. Has this ever happened to anyone else. Please help......
Hi folks, I have been experiencing discomfort in the upper right quadrant of my abdominal area and have been reading about Sphincter of oddi dysfunction. My symptoms are very similar and am thinking this is my problem. I have had a few bad attacks where I ended up in the hospital (severe cramping, pain radiating into my back, shortness of breath, vomiting, fever). This was one of my worse attacks.
When I feel them (smaller attacks)coming on I will drink large amounts of water which seems to lessen to discomfort. I'm wondering if anyone else who has been diagnosed with SOD finds that this helps them?
Hi Martha, My gastroenterologist thinks I have SOD. I have not had an ERCP yet so I guess the diagnosis is not 100% but I have all the symptoms. I'm lucky that I didn't go years trying to find out what the problem is like many people. I'm trying to live with this without getting an ERCP because I have read that there is a good chance of complications and it may not even work. My doctor says call him when I decide I can't live with the symptoms anymore. I was really glad to see your post because I'm trying to do the things that will help so I will try drinking large amounts of water. I have started walking 30 minutes a day when I can and that seems to help. I'm really afraid of having an ERCP.
Is there anyone who also suffers from this disorder? My story is posted in a responce to "lower right sided pain below rib cage". I would like to compare treatments and options. Some days it just feels hopeless. Thanx, RG
I have suffered from SOB for almost three years. In those three years I have had five ERCP's which offered temporary relief, then the pain returned. They tried a stint in Jan 05 but it was too painful and had to be taken out. After which I had the major surgery sphincteroplasty in Feb 05 to sew open the sphincter. It was a hell of a surgery with a six inch scar, ten day hospital stay with no food, a tube down my throat, a drain in my stomach and a catheter. The pain didn't return until about a month after my surgery. Then I hade to get another stint in because the hole had shrunk making it hard for bile to go through. The stint worked very good with no attacks but after they took it out about I month ago I have had nothing but pain attacks and am waiting to find out what the next move will be. The truth is this may never be under control but just make sure your doctor has his best intentions on how to help you make through day by day. Good luck! hopefully you wont have to have a sphincteroplasty because it definitly doesnt solve everything
Hi folks, I have been experiencing discomfort in the upper right quadrant of my abdominal area and have been reading about Sphincter of oddi dysfunction. My symptoms are very similar and am thinking this is my problem. I have had a few bad attacks where I ended up in the hospital (severe cramping, pain radiating into my back, shortness of breath, vomiting, fever). This was one of my worse attacks.
When I feel them (smaller attacks)coming on I will drink large amounts of water which seems to lessen to discomfort. I'm wondering if anyone else who has been diagnosed with SOD finds that this helps them?
I also have SOD and I have found that right when an attack starts I have to give myself a shot of toradol (which is just mainly a huge dose of IB profin) But its the only thing that works for me during those horrible attacks.
Sphincter of oddi dysfunction 
I have suffered from SOB for almost three years. In those three years I have had five ERCP's which offered temporary relief, then the pain returned. They tried a stint in Jan 05 but it was too painful and had to be taken out. After which I had the major surgery sphincteroplasty in Feb 05 to sew open the sphincter. It was a hell of a surgery with a six inch scar, ten day hospital stay with no food, a tube down my throat, a drain in my stomach and a catheter. The pain didn't return until about a month after my surgery. Then I hade to get another stint in because the hole had shrunk making it hard for bile to go through. The stint worked very good with no attacks but after they took it out about I month ago I have had nothing but pain attacks and am waiting to find out what the next move will be. The truth is this may never be under control but just make sure your doctor has his best intentions on how to help you make through day by day. Good luck! hopefully you wont have to have a sphincteroplasty because it definitly doesnt solve everything
I also have SOD and I have found that right when an attack starts I have to give myself a shot of toradol (which is just mainly a huge dose of IB profin) But its the only thing that works for me during those horrible attacks.
