Hi there. I have been diagnosed with SOD about 3 years ago. I have been having these attacks for over 20 years. I have been hospitalized countless times. I have had 4 ERCPs and I still have the attacks. The last one was two days ago and I had to go to the ER as the pain pills I had just for this, didn't help one bit. I was admitted and they did an ultrasound and a MRI. Both those tests showed my bile duct to be enlarged at the site where my gallbladder once was, but I was told that basically that is normal. I had my gallbladder removed ten years ago as they thought the attacks were caused by my gallbladder. They said my gallbladder looked fine and healthy, but after they sent it to the lab, it was found to have a substance like sand in it. I thought that would take care of the attacks...it only worked for about a year. I have had the sphincters cut but that again only lasted a short time. Most of the time when I go to the ER with pain that hits a 10 on the pain scale, they have to give me LOTS of morphine, or another pain med. The pain is so bad, that I can't deal with it. It feels like someone is ripping my insides out right through the middle portion and upper right side of my chest. All my blood tests normally come back normal except for a couple times where it showed my liver enzymes to be elevated. I have had numerous tests and they basically come back normal. The attacks last for as long as 5 hours, and it doesn’t matter what I eat. I can feel them coming on, so my Dr. prescribed hydrocodone. If I feel an attack coming on, I take the pain meds and generally it will keep the attack from getting to a 10 on the pain scale, but unless I take the meds right at the very beginning of the attack, the pain pills do nothing. The attacks start by sharp and dull pain kind of like if you swallowed a golf ball with spikes and it got stuck right at the solar plexus. Even if I swallow saliva the pain increases and just steadily gets worse to where I have to go to the ER to get shot up with LOTS of morphine or other heavy duty pain meds. Normally the attacks come when I have been constipated or not have a bowel movement for a couple days and after the attack, I have severe diarrhea. The attacks come basically at anytime, and the worst attacks I have had came after eating saltine crackers or a peanut butter and jelly sandwich or chewing gum or raw carrots or breakfast cereal and a few other things. I have eaten all those things since and they have not caused any attacks, so there is nothing in particular I eat which causes the attacks. I have eaten very high fatty foods to try and cause an attack but it never does. Basically I live on pain meds and I am sick of that. I hate taking the meds as I don’t want to get addicted to them, but it’s the only thing that seems to keep the attacks from knocking me to my knees as long as I take the pills at the very beginning of an attack. I’ve had 2 children totally natural, no pain meds, and the pain that I get from these attacks make the childbirth pain pale in comparison. I have NEVER been in so much pain as when I have these attacks. I go to the Dr. again on October 13 to find out what my options are. I certainly hope they can get these attacks stopped, but anything that I have already done has only temporarily stopped the attacks. If anyone has this condition and has received treatment which permanently stops the attacks, please let me know what your Dr. did to stop them. Like I said I have already had 4 sphincterotomys and they helped only temporarily. Thanks for any information you can give me.
Pony, I'm sorry to say that narcotic meds increase the pressures in the ducts and it could make the situation worse. Docs who specialize in SOD typically try to rely on antispasm meds and meds like calcium channel blockers. If you're not working with a specialist in SOD it might be a good idea to find one and discuss it with him/her. SOD unfortunately can't be treated by most GI docs - they just don't really know how to handle it. Even those who specialize admit it's a hard condtion to treat.
I have been having similar symptoms. Multiple ER visits and even admitted to the hospital for battery of tests. Still abnormal sign is elivated liver enzymes. Your pain sounds so much like what I have and it is discouraging that tests always come back with no answer. I am not imagining this pain. I m going to have the pressure test for the SOD proceedure within a week. Curious...do you have dizziness and nausia and a feeling you cant focus?
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