lor and beaker - more sod questions

[gerddyone]

I'm still struggling with this (or something else).  I appreciate the info you've given me.  Did you go to your gi or surgeon for this problem?  My gi takes at least a month to see. My surgeon mentioned this condition to me.  I hate to bother her again.  Last night the pain started and was increasingly constant, from the ribs, in the middle and all the way through to the back. (I ate meatloaf?) I would have called someone but I hate to do the night thing.  It never seems as bad in the morning.  This morning the area is sore and painful. I have not ate much today - which makes my stomach ache.  I'm just not sure what to do now.  I do have a motility disorder which seems to make the sod a real possibility (all bloodwork is normal now). Any more info or your experience would be helpful.  Thanks!  (6 weeks post-op)

[Beaker]

If you are in that much pain, by all means, go to the ER.  That way if your amlayse and lybase ( I know, the spelling is wrong)levels are up then you will be able to get in with your GI sooner.  Usually after one of those attacks, you will feel as if someone punched you really hard in the stomach.  I cannot eat meatloaf or any other kind of red meat.  Not eating it has helped quite a bit.  This is the pits but watching what you eat is the only way to get relief.  Sometimes you are not aware what it is causing the pain.  If the attack has been a real doozy, sometimes it may be days where I cannot eat anything but bland stuff.  Of course I have one doctor telling me to stay away from red meat and the other doctor telling my to stay away from carbohydrates.  I am tired of vegetables and fruit.  I am in a no win situation and I believe you may be too.  What I probably would do is to call the GI's office and ask even if he/she preforms ERCPs and if he/she doesn't, then you will not be waiting for nothing.  Then tell them what your surgeon thinks and see what they recommend.  They may send you to another GI and if they refer you, you may get in quicker.  Or call your surgeon and tell him about your attack and see if he cannot call your GI for you.  There are always ways around this.  Had you gone to the ER and your levels were up then I would have called the GI the next day, if indeed they would have released you.  Then the hospital would have admitted you for pancreatitis and by golly your GI would have been informed then.  I also hear folks say, you need to get the stress out of your life. To some extent they are right but if the SOD is the reason you are stressing, then what?  Give the doctors a call and see what they are willing to do for you.  Let me know how you are doing.

[Lor]

I suffered with that pain for so long - I feel for you. Unlike Beaker what I ate wasn't the problem. My problem was having an empty stomach. I was told that people react different - for some it happens after a meal for others eating will help ease the pain, beause it allows the bile out for digestion resulting in a relief of pressure. Not sure if you are a female or not, but I found that my pain was more severe right around the time I had my period. Even now that I had the problem fixed. I still have discomfort around that time. I can tell you it took me 6 months of daily attacks to go to the ER. I was very disappointed at what an ER really does for you. For me they gave me demerol and a GI cocktail. Neither helped take the pain away. With SOD - pain medication doesn't have an effect on it. I did get into my Dr sooner, because I had orders from the ER to go see my GI.
I saw several Drs looking for someone who could help me. Most said it was IBS. I just couldn't believe I could have that much pain - mostly directed in the upper stomach area could be IBS. I had never been in that much pain in my life. My husband said I can't say it was worse than labor, because it would give away a secret women have about child birth. It was much worse - far worse. Drs don't like to diagnose SOD because they don't like to get into the biliary tree for fear of complications. If you are in pain keep fighting - call that Dr of yours and tell him you need to get in sooner, because you are really hurting. They should beable to squeeze you in somewhere.

[Beaker]

This is just a thought.  Fix and eat the same meal you had the other night, if it causes the pain again, then you know yours is related to food.  If by chance you get another flair up like the other night, then go to the ER so at least they can get a blood level.  Sometimes when the stomach is empty and ignored, it will activate the ducts to do their job and of course there is nothing to digest but the enzymes the ducts are producing.  Unfortunately, SOD is lumped in with IBS but it is very difficult to diagnose.  I have SOD, IBS and GERD, I am a walking acroymn.  I know when I am stressed out, it makes the problem worse but stress is not the cause of the problem for me but part of the problem.  Go to your library and see if you can get a copy of Dr. William Salt's book, "Irrible Bowel Syndrome and the Mind-Body-Brain-Gut Connection"  I am not for certain which chapter but I believe it is Chapter #63.  It will give you a description of SOD and what critera you must have to be diagnosed with SOD. That is why I keep bring up the blood levels.  There are three classifications of SOD.  Type I, Type II and Type III.  You don't want to be classified as type III because then they will throw it all under stress.  You also need a doctor who is experienced with ERCPs.  By the way, Dr. Salt is out of Columbus, Ohio, if you happen to be in that area.  I have had three ERCPs two with sphincterotomies and never had a case of pancreatitis.  That is because my doctor puts a stent in the pancreatic duct.  I keep getting scar tissue blocking my ducts but the pressure was high in the pancreatic and bile ducts.  I have gotten Dr. Dean Ornish's cook book to see if it can help me stay on track.  It is so very hard when I have 50 years of bad habits to sort through.  LOL!!!!!  Pretty much I watch what I know will hurt me but there are times when that bowl of ice cream calls my name.  Get this book and read it and see where you are in the book.  I hope this information will be of use to you.  Let me know how you are doing.

[Zoie68]

I have spoken to Lor several times through email about the possible SOD turmoil I have experienced.  Fortunately I have found a gastro doctor within 100 miles of me that has diagnosed people with SOD and has performed the sphincter of oddi manometry and sphincterotomy.  I have an appointment there in about 3 weeks.  I did have an ER visit last Thursday.  The pain was so bad and lasted so long that I just felt that I had to go!!  Of course I was given Demerol to ease the pain.......5 injections of Demerol!!  I am pretty sure they drew blood for tests (I was sligtly unconscious by this time) but the doc said they were all normal.  I did stay in the ER for 6 hours and I just wonder if your levels return to normal once the "spasms" have stopped??
My pain, like Lor's, is brought on mostly on an empty stomach.  I can not attribute anything that I eat with more or less attacks.  I do hope you find a good gastroenterologist that will help you.  You have to keep pressuring the docs until they do something.  Believe me, I've gone through this now for almost 4 years!!
Take care,
Zoie

[taylee]

Can SOD be a mild dull aching under the ribs after eating or does it have to be strong, long lasting spasms? Mine goes through to the back, and it does not matter what the food is, it does it right after lunch and the rest of the day, is all downhill.
Also, does it leave you with gas afterwards that kind of stays trapped inside and hurts til you can get it out? I have a lot of trapped gas at night.
Another thing, the pain radiates to the left side under the rib cage and through to the back. Is that gas, pancreas, or is it the burning spasms?
I wish I could really understand this so I knew if I should get the ERCP and if it is necessary, I was told it was type III, which is essentially a "psyche diagnosis" right? They said ERCP and sphincterotomy is only 50% effective for that type.
Sorry for all the questions but one Dr. told me that surgery won't cure "functional disorders" and basically to deal with it.
(he was a primary care, not a GI).
Taylee

[Beaker]

I would go to a gastroenterologist.  Unless you have an ERCP, no doctor can diagnose which type you have, indeed even if SOD is what you have.  You need an ERCP with Mamometry to test the pressure in your ducts.  If it is Type III, that would be pain with out high pressure or elevated enzymes.  Usually they attribute that to stress.  If you are near a large city, see if you cannot locate a GI who is connected to a University Hospital.  Or if you could find a GI who's speciality is the Biliary System.  If you are eating red meat or high fatty foods or drinking, stop all of that and see if it gives you some relief.  I hope this information will be of help to you.

[taylee]

Hi,
I have a GI dr, who is the head of the Pancreas Foundation at a very reputable hospital in Boston. He said they want to see if indeed it is SOD, but told me the risks of ERCP were very high for pancreatitis. I got scared. He said it could be type III because my past tests (amylase and lipase) were normal over a period of about a year.
I had my gallbladder removed 6 months ago, but really had these symptoms before the surgery. When the surgeon got inside, he said the gallbladder was adhered to the liver and bowels and had to dig it off.
So I don't know what caused the scarring, because they didn't find stones, just an inflammatory process that had been going on for quite some time.
Thank you so much for your input and feedback!
Taylee
PS.This has been going on for alomost 2 years, waiting for a diagnosis-pre and post surgery.

[Beaker]

Although, I do not question your physician's skills, a doctor who's speciality in the biliary system, will have probably done more ERCPs.  I have had two sphincterotomies and each time Dr. Martin put a stent into the pancreatic duct.  Now I may have been lucky to have not had a pancreatic attack  or maybe I finally found someone who can help me.  It has been since 1994 when I had my gallbladder removed and I had been in pain ever since.  I am a Type II and the second procedure I had scar tissue blocking my ducts.  If the pressure is high in those ducts, the only way to find out is to have the ERCP with Manometry.  If your doctor suspects Type III then read below and try to follow the advise of Dr Engs.  I hope this information will be of some use to you.  Good Luck!



How to control your Sphincter of Oddi or bile duct spasms
(post cholecystectomy, post-gallbladder, papillary stenosis or biliary dyskinesia syndrome)
Compiled by: Prof. Ruth Engs, RN, EdD, Indiana University, Department of Applied Health Science, Poplars 615, Indiana University, Bloomington, IN 47405

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I have had my gallbladder out so why am I still having gallbladder pain?
Biliary spasms affect from 2 to 10% of people who have had their gallbladders removed. A few people have it with intact gallbladders. It is more common among women then men. However, the causes of this syndrome are still unclear. It is generally considered a functional distorder that has a psychological component (somatization) and may increase under stress. The condition has symptoms of gallbladder disease pain and can start from a few weeks to years after the gallbladder has been removed. Burning pain in the epigastric (upper stomach) area radiates around to the back or under right shoulder blade. It often begins about a half hour after eating and can last for several hours. There can also be cramping under the shoulder blade or back and the stool (bowel movement) can be light tan if the normal amount of bile is not going into the intestine.
These spasms and burning sensations are thought to be caused by contractions of the common bile duct (the duct that allows bile from the liver into the small intestine) or a tightening of the Sphincter of Oddi (the muscle opening that controls the flow of bile and pancreatic enzymes into the small intestine). Sometimes "gallstones" can form in the duct that may not be visible on Ultra Sound that will produce these symptoms.

What is the medical treatment for this syndrome?
Although this syndrome is likely related to stress, surgery is often recommended to eliminate the spasms if anti-spasmotics, nitrates, and calcium channel blockers are not effective. The procedure to diagnose and to treat this condition is called ERCP. In this medical procedure, a flexible endoscopic tube is gently inserted down the esophagus, through the stomach and into the small intestine. A small plastic tube from an opening in the end of the scope, is then placed in the Sphincter of Oddi and a solution is injected into the duct to measure the pressure (billiary manometry). If the pressure in this sphincter is high (above 40 mmHg) and/or "gallstones" are found in the duct, a surgical procedure sphincterotomy (cutting into the sphincter) to allow fluid and stones to flow out may be made. Stones can sometimes just be scooped out.

However, ERCP sphincterotomy surgery can have acute and long term effects. In women who do not have stones in the common bile duct or high pressure, the surgery is less likely to be effective in reducing pain and spasms. From 20 to 40 percent of women who do not have bile stones, but have biliary pain symptoms, have acute pancreatitis following the cutting of the sphincter; up to 20% can have pancreatitis just from the procedure. There can be long term effects also. The common bile duct may become chronically inflamed due to reflux of small intestinal fluid into the duct. From 14-36 percent may have some long term complications which may result in chronic pain.

If the common bile duct becomes plugged with stones or if the sphincter does not open to release the bile and pancreatic enzymes into the small intestine, serious medical problems can result. This includes jaundice from the back up of bile and pancreatitis from the back up of pancreatic enzymes. When this happens emergency ERCP or other surgery often needs to be done.

What are the types of this dysfunction?
Based on biliary manometry the dysfunction has been classified into three types. Type I and Type II have a combination of high pressure in the common bile duct, abnormal liver and/or pancreatic function tests, stones or "sludge" in the duct, recurring pancretitis, or other physical and chemical changes along with pain. Type I has high pressure and many of these other problems; Type II has several of these problems. Type III typically has pain only, without any of the other problems. ERCP is most generally effective when the pressure in the duct is high. ERCP is generally not very effective for Type III, so learning to manage it and knowing what triggers it is important.

If I change my lifestyle can I reduce these spasms and pain?
If ERCP and possible surgery have been suggested and it is considered elective, and not emergency, there are some lifestyle changes that may help to reduce and control the pain, burning, and spasms from this syndrome. Surgery should not be rushed into until all else fails. Please remember, however, you first need to go to a physician to determine the cause of these symptoms. The following lifestyle changes may be helpful in reducing the symptoms. Keep in mind that there are only limited references for some of the dietary remedies in the medical literature related to this syndrome.

Reducing fat in the diet and other dietary changes
Some research suggests that a diet high in fat and/or cholesterol may result in the formation of "gallstones" in the gallbladder or common bile duct. Measures to reduce diatary fat, triglycerides, and total cholesterol levels may be helpful in preventing stone formation. Several methods to accomplish this follow:

Drink a tablespoon of bran mixed with a teaspoon of psyllium in a glass of water or juice upon arising (This mixture may help to absorb bile and prevent cholesterol and triglycerides from being re-absorbed back into the body thus lowering the cholesterol level).
Eat a very low fat diet such as the Dean Ornish diet. This is primarily a vegitarian diet that has been successful in reversing heart disease
Eat and cook with foods that contain very little fat and eliminate fatty foods from the diet.
Enjoy no-fat sour cream, yogurt, cream and cottage cheese, milk, "egg beaters," or soy products.
Eliminate all visible fat including butter, table spreads, etc.
Eliminate chocolate, peanut butter, nuts, etc.
To obtain some fat-soluble vitamins in the diet take 200 units vitamin E, an omega-3 fish oil capsule, and in cooking use a small amount of olive or canola oil
Trim the skin and fat off of all poultry and meat.
Drink plenty of fluids
Some research suggests that drinking lots of fluids may help dilute the bile and prevent the formation of stones
Drink at least 8 glasses of fluid a day
Drink a half glass of soda-water (club soda) three times a day (a few research reports show this may be helpful in preventing stone formation)
Drink one or two cups of green tea (acts as an antioxident) or herbal tea or aloe vera (may sooth the GI tract).

Foods and Drinks to Avoid
Experience will often show what foods need to be avoided to help prevent attacks. Experiment with different fruits and vegtables. There are some general rules of foods to eliminate from the diet because they contain a high amount fat or because they may cause irritation resulting in the contraction of the sphicnter or duct.
Avoid spicy foods, onions, garlic and cucumbers.
Avoid red wine, other alcoholic beverages, coffee, strong black tea and soda pop with caffeine.
Avoid very cold drinks and foods. Lots of ice water, juice, soda pop and ice cream can sometimes cause spasms.
Foods to eat
Eat a well balanced diet containing the following
Four(4) servings of fruits (apples and pears may be less likely to cause problems than some other fruits)
Four (4) servings of vegies (have yellow and green at least once a day)
Four (4) servings of protein (no-fat dairy, poultry, fish, meat or legumes)
Eight (8) servings of grains (cereal, rice, bread, etc.)
Eat small meals. The first meal of the day sometimes does not cause as many problems as meals eaten later in the day. Experiment and adjust your eating schedule to produce the least amount of symptoms. Some people have found that oatmeal relieves their symptoms.
Reduce stress in your life
Engage in pleasant pastimes and activities. After work, or a stressful day, do someting nice for yourself or something you find relaxing and fun.
Stay out of stressful situations. If you are involved in family, job, or other situations that are causing you stress try to see how you can minimize them (leaving the house to take a walk)
Do self hypnosis, meditation, prayer, and stress reduction techniques (these are found back on "Hints" home page). Go on a retreat at a religious community
Do an evaluation of your work and family situation. Determine what changes to get your life in balance. Remember good health is a balance of social, mental, physical, spiritual, recreational and vocational aspects of life.
Physical Exercise
Get some exercise every day. Even walking briskly about ten minutes three times a day can be helpful to overall health. Attempt to spend a half hour a day for at least three days a week in some form of physical activity.
Lose weight if overweight. Exercise can help you with this and also curb your appetite.
Find a supportive physician
Find a physician that will spend time to be supportive, will encourage lifestyle change efforts and is accepting of diatary and alternative health prevention regimens.
Discuss with your health care provider the possibility of massage therapy or accupuncture
Take the medication prescribed by physician
Anti-spasmotics, nitrates and calcium channel blokers may help with the pain as an adjunct to changing diet, stress reduction and exercise.

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Links to further information about this and similar disorders. Since you will be linked to off-site webpages bookmark this page so you can come back to it:

Biliary Dyskinesia & Sphincter of Oddi Dysfunction
Information about the Types of billary dysfunctions
Medical University of South Carolina information about Sphincter of Oddi
Information about MRCP for diagnosis
Information about ERCP for diagnosis and treatment
MRCP vs ERCP
IU Medical School
Medical Information from the Am. Soc. Gast. Endoscopy
Other GI Functional Disorders
Abdominal Pain
Med Help International




Ruth C. Engs, RN, EdD. Professor, Applied Health Science, Indiana University, Bloomington, IN 47405. email:***@****. (c) Ruth Engs, Bloomington, In 1999-2001


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Information on this page is based upon many journal articles found in Indiana University's Medlines (Ovid) system. It does not constitute medical advice, diagnosis or treatment of any illness. This material is for educational purposes only. If you are having "gallbladder pain" and burning in your upper-stomach area (indigestion after eating) after your gallbladder has been removed, please first see your physician to rule out other illnesses and get her/his support concerning the lifestyle changes discussed on this page. http://www.indiana.edu/~engs/hints/oddi.htmlThis page (c)copyrighted by Ruth C. Engs and trustees of Indiana Univesity, Bloomington, IN 1998-2001.

[taylee]

I appreciate your comments and info on SOD. So far, diet, and medication have been ineffective.
I ate an apple yesterday, as recommended, and the pain got much worse than usual.
Another question: if my Dr. is in the GI clinic, and heads up the pancreas foundation, and has great credentials, and does ERCP every week, does that mean he isn't specializing in the biliary tree? Not sure about this whole specialist thing, when last year I went to a female surgeon whose specialty WAS the biliary tree, and she said I didn't need the gallbladder removed at all, that I was "probably" having IBS problems and to add fiber to my diet. May I say, she was at Tufts New England Medical Center in Boston! How much better of a hospital can you go to? I just can't trust what I am hearing anymore.
This other Dr, is at the Beth Israel Deaconess and is highly respected, and the hospital is again, one of the best in the state.
Signed,
confused and upset.
Taylee

[Lor]

The ERCP is so different from having an ERCP with menometry. A Biliary specialist isn't always the answer. What is important is a DR who can diagnose SOD using ERCP with menometry. It's important to find a DR who has done many ,because of the potential risk of pancreatitis. I went to several DR's ( one was at a University hospital- one of the worst Drs I saw)who would only diagnose IBS, and suggested my severe pain was due to my thinking I had pain. Which he said caused it to come on. As many people know IBS is one of those illnesses that doesn't show on blood work, CT scans, or in a lot of cases colonoscopy. Most are diagnosed because they can't find anything else wrong. I too have tried the diet that beaker posted  " I had my gallbladder out, so why am I still having gallbladder pain?" Did nothing for me, because SOD is not caused by stress (they think IBS is) Diet isn't it either. SOD is caused by the sphincter to the bile duct not opening enough to let the bile flow. When it doesn't open it causes pressure to build in the duct resulting in the pain. It can be the cause for gallbladders to become non functioning in the first place. The bile gets trapped in the gallbladder and over time it turns to sludge and stops working. That is why more people who have SOD had no stones - only a non functioning gallbladder.

[taylee]

Lor,
You are such a wealth of info on SOD and I hate to repeat myself and sound like a broken record. So, I am getting the courage up to consider the ERCP w/ Manometry, I am seeing the DR, in 2 weeks.
My only comment is this: my gallbladder didn't have the typical low ejection fraction rate, (non-functioning) as they say, but the complete opposite, It was contracting at a rate of 96% which means it is hyperkinetic, but no one could tell if that would mean a favorable outcome to surgery.
They never saw a stone or sludge over the years, but again, when it came out, it was chronic acalculous cholecystitis, with scarring all over the organs.
So they think too, if I stop thinking about the pain maybe it would end, but I also tried that and to no avail.
Thanks Lor for your kind words of wisdom, I would love to be able to tell you I had some resolution in 2 weeks, but am afraid I will get pancreatitis and something awful will happen.
Thanks,
Taylee