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???????
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.
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.
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.
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.
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.
I forgot to mention that from time to time I also suffer from constipation. Is that a symptom of pancreatitis or SOD? I have never had problems with diarrhea even when I had my gall bladder removed. I think this is one thing that baffles doctors. I wonder if its possible to be born with a digestive enzyme deficiency?
I would say no to your doctor performing an EUS. It might be safe but most GI drs do not have the knowledge to correctly diagnose CP from an EUS. Many drs tell you no you do not have it when in fact there are little spots on your pancreas indicating CP. Again you need a DR that specializes in the bilary system and pancreas sod issues. That is all these doctors do in the places I mentioned above. They have the knowledge to properly diagnose you. There is not much research in this area of medicine so many GIs do not understand it well. The specialist centers run trials and deal with this everyday so they know the latest research about these diseases and what to look for during tests. My friend was told she did not have CP by her dr who did an EUS and other tests. She knew something was wrong so she travelled to see the specialists and sure enought they were wrong and she had it.
The digestive enzymes did not help my friend. Her pain is constant and she has it in her back and upper abdomen I believe. She said a lot of times it feels like a belt around her upper part with the pain. She is now contemplating what to do a puestow was recommended and she is even thinking about the total pancreatomy . This is where they remove your pancreas and harvest islet cells and inject them back into you so you will hopefully not be a brittle diabetic afterwards. It helps if you go into surgery before all of your islet cells are destroyed by the CP. The TP surgery helps to relieve the pain. It has a better success rate also if you have never had any other pancreas surgeries such as a whipple. puestow etc.. These are also done at MUSC in SC and by DR Sutherland at the Univ of MN. Dr Sutherland founded many pancreatic surgeries.
Most people with CP end up on strong painkillers after a while since they cannot take the constant pain that never goes away so thats why they opt to get the pancreas removed.
Your pancreas makes insulin so many people with CP have diabetes because the inflammation ends up destroying the pancreas and its ability to make insulin. I do not know if your diabetes was caused by CP or you had it all along. Its hard to say at this point. I would think you need to find out immediately if you have CP. This is the most important issue at the moment. The endocrinologist is not going to be able to help much if you have diabetes from CP and your pancreas keeps getting worse. Again If you need help finding a dr just messgae me and I will try to research for you.
The digestive enzymes are always prescribed as a first line of treatment. A lot of people on the group space out 10 of the digestive enzymes throughout one meal. They take the prescribed ones. It seems to work better to take that many. They are also on a very lowfat diet. I mean extreme. They mostly eat things with 1 -2 % fat or less. This helps because it does not make your pancreas work as hard. Some of them have constipation and some diarrheah . This really varies from person to person. The ones with constipation take a lot of miralax.
Thank you again. I have insulin resistance not diabetes. Insulin resistance is where your pancreas makes enough insulin but your body doesn't use it. As insulin enters the blood stream it is suppose to break down the blood glucose. Insulin resistance causes the muscle, fat and liver to not respond to insulin. My doctor believes it is a genetic trait because I don't look like or have the symptoms of a typical insulin resistant person. She recently diagnosed my sister and mother with this same condition. This condition is causing terrible muscle pain (fibromyalgia and diabetic neuropothy) because my muscles are not getting enough food. My Endo feels that the pain I have in my abdomen after meals will subside eventually. She said it is probably caused from my pancreas working so hard to produce more and more insulin. The only thing that helps with this pain is taking digestive enzymes. I feel in some ways she may be right. If I look at my pancreas as an overworked muscle that needs rest, then it makes sense. I don't show enough symptoms of pancreatitis to cause my gastro doctor to be concerned. I don't believe I am in enough pain for them to feel it could be it. Now a days your tests have to show something for your doctor to do anything. I will look into your friends doctor because I am sure it will take a while to get an appointment. In some ways I believe this insulin resistance caused my gall bladder to die because it caused so much stress on my body. It makes me wonder how many other people suffer from this condition who also suffer with fibromyalgia.
Hi lots of people have many other things wrong with them in addition to sod or CP. I think your body just gets out of whack and other things start to go wrong. I am concerned because of your pancreas inflammation. I hope you can see a dr soon. The Dr that me and my friend went to does not have too much of a wait. I think average is a few weeks to a month. You can google dr cotton at musc and make an appointment. I believe his coordinator is Julie Akers or Elaine Rawls. They can see if your insurance is accepted and try to work it out so it will be. Ask for a prescription of the enzymes and for a higher dosage than you take at the moment. They should be better than the OTC type.
I have had severe bouts of this pain over the past 3 years, with the docs assuming it was my gallbladder, had all the tests,scans you name it, no stones but sky high liver enzymes, they could not work out what was wrong with me and basically left me to it, this week after approx one year between a previous attack of severe pain I have in and went to the docs, saw a different doc who is certain I am a sod sufferer, ordered blood tests and advised to continue with antispasmodic meds (buscopan) and ibruprofen the highest dosage as is safe, however... after 3 days and yet another attack these meds had little effect, I was in severe pain and as a last resort having guzzled my other meds I then took 2 co codamol tablets and wow!.. within minutes the pain was gone..completely gone and has stayed gone for now on 36 plus hours... Relief is too little a word! Oh and may I add I haven't popped a pill in 36 hours
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