Sphincter of Oddi dysfunction

[erikamesh]

In April 09 I suddenly got the worst case of indigestion I had ever had in my life after eating something fried. After a week of suffering and not being able to find any relief, I went to the ER. After several blood tests and ultrasounds, they determined I had acute pancreatitis. I was given pain meds, anti-nausea meds and told to follow up with my primary. Three days later I end up back in the ER in severe pain and sicker then I was just a few days before. This time they did more blood tests and a CT scan. When results came back I was shocked to hear everything was normal. The doctor told me they couldn't find anything wrong with me and that I needed to follow up with my primary. They did at least give me more pain meds. After another week of being sick and in constant pain, my primary admitted me to the hospital for exploration. After having an endoscopy, colonoscopy, and a HIDA scan it was determined that my gallbladder needed to be removed. On 5/12/09 I had surgery and for the first few days felt pretty good. Exactly one week after my surgery the diarrhea started and from there things just progressed down hill. I was hospitalized again 5/29/09 for 3 days for dehydration. During this time a GI doctor came to visit me and told me he didn't think what I was going through was normal and that he would like to see me again before I left the hospital. Before that could happen, the attending physician discharged me because according to him I was fine and this was just how my life was going to be so get used to it. The next day I got in touch with the GI doctor and he worked me into his schedule the next day. He did a few tests including an MRCP but found nothing abnormal except for a slightly dialated (7mm) common bile duct. He didn't think this was anything to be concerned about but referred me on to the SOD specialist of the group. After reviewing all my records on everything he decided that an ERCP was the only course of treatment. On 7/6/09 I went in for the procedure and during this time they found the pressure to be high in the CBD and performed a sphincterotomy on two of the sphincters but not touching my pancreas. My pancreatic duct is very small so he thought it was best to leave it alone for now. For the first day or so I felt ok but now I am sick again and facing a second ERCP. When I called my doctor to tell him I was sick again he said yeah he had a feeling this was going to happen. I have done some research and the pancreatic sphincter seems to be a controversial subject. Why put a patient who is already suffering through more procedures than you have to? I'm already sick so the thought of pancreatitis doesn't scare me at all if there is a possibility I will be better when it's over. I am currently on a daily regimen(sp?) of vicodin, levsin (anti-spasmodic), zofran(anti-nausea), and questran(to bind with bile), all of which do nothing. I have an appointment 8/10/09 with another GI who specializes in pancreas and liver disorders to get a second opinion. In the mean time though what can I do? My doctor won't give me anything stronger then vicodin because he doesn't want me to build up a tolerance. I can understand his concern but I am in pain! Does anyone out there have any advice about medications or treatments that have worked for them? I can't get these doctors to understand that I'm not a pill popper, I just want my life back!

[Gargi99]

This is my exact story! I feel you sister, when this pains, it pains so much you sometimes feel it would've been better if you had something more serious.  Atleast you can explain people the reason behind your extreme pain and helplessness.  

I usually find walking helps in the long run.  Eating very very light foods helps as well.  These are all helpful in the long run of course.  There are no immediate remedies unfortunately.  Pain killers like oxynorm, morphine and tramadol are the best my hospital has done for me!

Be strong, you'll get there. God bless

[CalGal]

Then you need to be working with someone who is experienced in SOD. Try going to the yahoo groups and looking at the posts on the boards specializing in SOD. There are a lot of people there who are working with certain docs - wihich it sometimes takes - to be able to get help with this condition. Even the best GI docs aren't usually very up-to-date on the issue and it could take that to get some things resolved.

[erikamesh]

Yes, my diet is very low in fat. The first thing I did was change the way I eat. I stick fresh fruits and veggies, chicken, fish and very lean red meats only on occasion. I limit my dairy to small amounts of skim milk and low fat yogurt. Everything is baked, steamed or cooked on my george foreman grill. For the most part I think it does help but there are some days where it just doesn't matter what I eat I'm sick anyway. I have talked to my doctor about calcium channel blockers and nitroglycerin but he said those weren't an option for me with my history of migraines.

[CalGal]

SOD responds very poorly to narcotic-based pain meds and it may in fact actually inclrease the pressure in the common bile duct and lead to more pain. Ask your doc if you can try something like nitroglycerin or some of the specific calcium channel blockers that can be used for this type of problem.

I don't know what you're eating, but hopefully it's very low in fat content?