Newatthis, sorry to hear this is happening. Unfortunately, there are a lot of people who have continuing problems after GB surgery. You may want to try following a low fat diet and try talking to the internist about trying some anti-spasm meds. In some they can be very helpful. The other thing you should do is within about 12 hours of a serious episode of pain/discomfort, get your liver and pancreatic enzyme levels measured. It may indicate whether you're having spasms of the common bile duct or sphincter of Oddi - the muscular opening between the duct and the duodenum.
Thank you for responding!
I have been reading up on SOD. I know it's a spasm in the smooth muscle, but would it be large enough to be visible? Could that be what I was seeing or would it have been unrelated? All the information is overwhelming and a bit confusing. I know everybody is different so it can be difficult for a doctor to diagnose, and nearly impossible online. During the week I keep a low fat diet, unfortunately I haven't been as good on the weekends. Something that will change. Are these symptoms ever actually "normal" after having your gallbladder removed or do they always indicate another problem? What other conditions should I be aware of? All my research keeps bringing back to SOD, but I really have no idea.
What questions should I ask my doctor on Thursday? If she doesn't metioned getting my enzyme levels tested, is this something I should push for? I know nothing about this doctor, I randomly picked her.
Has anbody figured out any of post gallbladder triggers?
Sorry, I know I have a ton of questions. I just don't want to leave the doctor's office on Thursday confused or with regrets.
It sounds like sod to me as well. You cannot actually see the spasm . It also can be a narrowing of the duct as well as a spasm. A lot of Drs do not understand this disease including most GIs. I had a hard time getting diagnosed. My surgeon said sorry dont know what it is. My primary said its stress. My GI said IBS and anxiety. I finally went to er with an attack they let me go and I came right back and made them take my liver levels. They were 10 x normal. Finally MY GI relented and reffered me to a GI in SC who specializes in this disease. You may have to call a SOD specialist yourself.
There are 3 types of sod
type1 has elevated liver levels , dilated bile duct and pain
type 2 has either elevated liver levels OR dilated bile duct and pain
type 3 is just paid
An Ultrasound can check for dialted bile duct an MRCP is even better and more accurate . Its like an MRI with a special dye so they can check all of the area out.
It is a good idea to get your levels checked during a bad attack. I would wait an hr or two and go to er or get a standing order from your doc. Mine has only been elevated a few times during attack.
You never want to have narcotics like morphine, dilaudid, hydrocodone etc because this actually increases pressure in the sphincter and will make you worse. I found this out the in recovery after GB surgery. They kept giving me morphine in iv and i was hurting more instead of less.
There is not a cure for this disease . You try to manage it as best as you can. You can try with meds. Some people take levisin which is a muscle relaxant , some take amitryptiline an antidepressant which has been found to help some. Other take the heart med nitro and it helps their attacks. I am sure there are many other meds to try. I have found if the er gives me ativan then it usually stops my attacks. If you are having a bad one then consider going to the er.
Another thing is ercp procedure to measue the pressure in the duct and if high get the sphincter cut. This is called a sphincterotomy. They make a small cut and place a stent in the duct that will pass in a few weeks. This helps some people and some it does not. If you are type 1 you have a better chance then type 2 and type 3 rarely gets this procedure.
There is a high risk of acute pancreatitis after this so you never go to just a random doctor to get it done. I only know of a few docs who specialize in this procedure. Dr Cotton at MUSC in SC and DR Sherman and Lehman at Univ of Indiana. Most people travel there to get it done. I would only let these people do this procedure since I would not want to take the risk of dying from pancreatitis.
Also the cut can scar over in a few months so people may end up getting it done many times until it cannot be done anymore. Like I said it is very difficult to manage and I hope they find a way to help.
Thank you for all the information. It sounds like you had a long and painful journey, but it seems like you were finally able to get some answers. How are you managing now after the dianosis?I hope you found a treatment that works for you. Were you able to indetify any triggers? Were your liver enzymes only elevated in the most severe attacks or did it seem somewhat random?
I am actually in Charleston SC and heard about Dr. Cotton. He is the reason I am motivated to try and look for answers again. The doctor I am going to is part of MUSC. I am hoping because of Dr. Cotton and the 6 million dollar grant people will take me seriously at MUSC. Fingers crossed!
I went to dr cotton and he wanted to do ercp. My liver tests were only elevated in severe attacks where I was throwing up actual green bile. My tbili is very slightly elevated all the time now.
I was hestitant since it was so soon after surgery 3 1/2 months to get ercp. I waited it out and now I get attacks only 3-4 times a month. I can live with that. If it gets worse I can always go back to him. Most are around that time on the month. I think hormones must have an effect on your sphincter as well. My attacks are usually over with in 10 min or so. I get pain and then it goes to a 10 quickly and I think I am going to die and throw up from the severe pain and I am ok. The vomiting must stop the spasm by interrupting the nerve signal. The bad thing is it can happen anywhere. I can be out shopping in a store and have to run to find a bathroom because the pain escalates so fast.
I have found food really high in fat can trigger it sometimes but sometimes it does not. Not eating for a long time and my monthly cycle
( about 1 week before) seems to be the trigger in most cases. . Another thing I have found. If I drink a carbonated soda right when an attack starts it will stop it 80% of the time or put it off a few hours. If I eat after drinking the soda it will usually not come back that day. I know thats strange but some of us get attacks on empty stomachs instead of after eating. I always try to have a drink with me.
I am glad you are at musc. You should find the best help there. Its a nice area and I loved charleston!
Oooh hormones make sense, I can't believe I never thought of that. Next time it happens I will try your soda trick and see if that helps. It's wonderful that you found a couple of ways to help control your attacks. I do think I am more prone to having an attack on an empty stomach. Rarely have I had an attack within a couple hours after eating.
Thank you so much for sharing your experience!