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Avatar universal

any other medications for sphincter of oddi??

Hi,  I've had sphincter of oddi for years now, and finally got relief from Gabapentin.  I think that everyone who has sphinter of oddi with normal liver results should try it.  My tests are always normal, except 2 times that i had blood tests during attacks they were elevated.  This would put me in the type III category of SOD.  Gabapentin took away my attacks almost completely, which were ridiculously painful and happening at least a few times a week.  Unfortunately, I still dont feel that great in other areas of the stomach, so im still searching for another medication that will take away all of my pains.  

Has anyone taken any other meds for this condition that seem to work???????
12 Responses
Avatar universal
Hi Jennifer,  I take Amitriptyline, 30mg, before bed for pain modification and a smooth muscle relaxer or anti-spasm drug, called Buscopan in the UK, 3 x daily.  Works most of the time for me.  Good luck.
1353650 tn?1429466974
I would try taking digestive enzymes. I have been having constant pain after my gall bladder surgery 2 1/2 years ago and the only thing that helps is by taking digestive enzymes with every meal. I have ever test imaginable except an ERCP with now explanation of the pain. On top of this constant pain I am suffering from insulin resistance (blood sugar issue). I am concerned that the two are related. My endocrinologist thinks my pain will get better as the medication for insulin resistance starts working. Digestive enzymes don't have side effects and if you have a lot of gas or stomach discomfort then you need to take them. Give it a try, it's worth a shot, instead of taking medication that could hurt your body down the road.
Good Luck
611999 tn?1298761891
Have you had an eus to check for CP?  I ask because you say you are having trouble with blood sugars.  CP and SOD can be present at the same time.
1353650 tn?1429466974
No. Did you ever have one done? I am sure it is like an upper endoscopy with an ultra sound attachment. When they do an EUS is there any chance the test could cause pancreatitis like an ERCP. ERCP's can be very tricky and my doctor doesn't want to even go there if she doesn't have to. I can tell you that I have normal liver enzymes, normal mri of the abdomen, and two Ct scans that showed possible inflammation of the pancreatic head. I was told that Ct scans were probably a normal variant. I also had a gastroparesis test done, ultrasound of the liver, and upper endoscopy with normal results. I asked my doctor to do a digestive enzyme test on a stool sample and she didn't know what I was talking about. The last time I saw my gastro doctor she wanted to do a hydrogen gas test. This checks for an imbalance of bad bacteria. The problem is the prep the day before. Having the reactive hypoglycemia and insulin resistance makes it very difficult to eat only white rice and chicken the day before the test. There has to be an explanation of why my pain subsides as long as I take digestive enzymes with meals. This abdominal pain has been going on for 2 1/2yrs and I am fed up.  
611999 tn?1298761891
I have not had an EUS done.  I did go to DR Peter Cotton at Medical Univ Of SC for a SOD diagnosis .  He is the expert on SOD and  pancreatic issues.  He actually is the one who brought the ERCP to the states.  I did the MRCP to look at my ducts.  He wanted to do ther ERCP but I was not ready.  My attacks of pain are not constant.  I have them a few times a month.  I would rather wait to have the ERCP since I do not believe its that debilitating yet.    ERCP has high risks so I want to wait until I must have it.  He does believe I have sod because of my elevated levels during attacks and my reactions to narcotics.  He told me to come back if I get worse and we will do the ERCP.  He does stent you afterwards to reduce the risk of AP.  The stent falls out in a few weeks.

  I was on a SOD support group and have a good friend I speak to a lot on the phone.  She had SOD and suspected  CP as well.  She also travelled to see DR Cotton to find out for sure.  She was having the pain like we all do and the stomach issues causing food not to be digested.  She had normal enzymes.     He did an ERCP first and noticed some spots on the pancreas.  He then did the EUS on her.   These tests along with biopsy to rule out cancer confirmed CP.

The  EUS is similar to the endoscopy.  There is not a risk like the ERCP.   It can detect minimal changes in your pancreas and these small changes are the beginning of CP.  He put her on digestive enzymes and recommended a Puestow surgery if her pain and symptoms did not get any better with that.  

I would never personally have an ERCP by any other DRs except these 3.  Dr Peter Cotton at MUSC, DR Martin Freeman at Univ Of MN and DR Sherman at Univ of IN.  These places have centers specializing in diseases of the bilary system.   They do these everyday and have done many many thousands so your risk is a lot lower.  

   You are correct that it is dangerous.  A doctor needs to have lots of experience doing these because of the high risk of acute pancreatitis.   Most GI Drs do not do these everyday so are hesitant to do them on patients because of that risk and they are uncomfortable since they do not have a lot of experience doing the procedure.   A good Dr. will refer you out to one of the centers but I have seen some drs say nothing is wrong with a patient or give out false diagnosis such as IBS because they did not want to deal with it or they do not have sufficient understanding of the  diseases of the bilary system and they do not want to admit it.  This leaves the patient with CP that is undiagnosed so they are not getting the proper medications and treatment .  CP does not always have elevated enzymes.  I have seen many people with CP with normal enzymes and CT results.

It sounds as if you need to seek out a new DR especially with the results showing inflammation of the pancreatic head.     I would personally go to one of those I have mentioned above so you can be assured of getting the correct diagnosis.  If you cannot travel there you can look in your state to find a DR that is a specialist in bilary issues.  There are not many of these Drs.  Maybe I could help research for you if you want to message me the state you are located.
1353650 tn?1429466974
Thank you for taking the time to give me all this information. I wish I could talk to your friend. They doctor only prescribed digestive enzymes to your friend? Did that help with her pain?  I will discuss the EUS test with my doctor. Do you think it is safe for my gastro doctor to do an EUS or should I see your doctor? The pain I have feels like a spasm. It maybe SOD with possible mild inflammation of the pancreas.The pain was brought on by constant and sever gall bladder attacks for 10 months 2 1/2 years ago. My gastro doctor is unsure about the inflammation of the pancreatic head and believes most of my problems seem to lie in the Endocrinologists hands. I am going to give my Endocrinologist a few more months of trying to fix my inulin resistance with the metformin.  My insulin resistant problem is pretty severe and could be part of the reason gas that builds up in my abdomen. I had symptoms of the insulin resistance before and during the gall bladder problem. It is hard to know what to do or which doctor to see. Every doctor I went to said I was very complicated. I am not very happy about having more tests done, especially when they will probably just want to prescribe digestive enzymes in the end. I was planning on contacting my gastro doctor to see if she could prescribe me stronger digestive enzymes because the over the counter ones I take are costing me a fortune. I take about 4 digestive enzymes with each meal and it seems to help quite a bit with the pain. I still feel a lot of pressure in my abdomen, right side and back which I contribute to gas build up and it can get pretty uncomfortable at times. I am not in so much pain that I can't function. Things don't seem to be getting any worse so I think I will give the new enzymes and the metformin a whirl for a few months. I appreciate all of you help. If you think of any other information let me know.
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