By Brooke Lee Keefer
People immediately ask, “What is that?” after I tell them I have Sphincter of Oddi Dysfunction (SOD). My response is never concise. There are times I wished I had one of those popular non-fatal diseases that explained everything in one word. Sometimes even those who spend most of their time with an SOD sufferer aren’t sure what to make of this complex condition. Here are answers to some frequently asked questions (FAQs) about SOD for family and friends of SOD sufferers.
What exactly is SOD?
The Sphincter of Oddi is a tiny muscle valve that opens and closes to allow bile from the liver and enzymes and other secretions from the pancreas to empty into the small intestine. There are actually three sphincters—the Sphincter of Oddi at the entrance of both the bile and pancreatic duct and separate bile and pancreatic duct sphincters. People can have dysfunction of one, two, or all sphincters. Dysfunction can wreak havoc on the entire digestive system. After all, we need bile to digest fats and pancreatic enzymes to digest, well, everything.
What are the most common SOD symptoms?
The most common symptom of SOD is pain under the right rib that may radiate to the back and shoulder. Other symptoms are: nausea, vomiting, unintended weight loss, food malabsorption/malnutrition, diarrhea, constipation, brain fog, dizziness/lightheadedness, pancreatic and/or liver abnormalities, and/or pain elsewhere in the abdomen.
Is the pain really that bad?
Yes, SOD pain can be as intense as labor pain. Some women report it is worse! SOD pain can take your breath away. This pain can be dull but is more frequently sharp, deep, and stabbing. Any and all SOD symptoms can interfere with a person’s ability to work, parent, and have a quality of life.
Why do some people with SOD have normal test results?
This is the most baffling and frustrating issue for anyone with SOD, as well as their family and friends. How could he/she be this sick yet bloodwork and scans all come back fairly normal? Keep in mind, some with even late stage liver cirrhosis have normal liver enzymes and many with pancreatic cancer have perfect bloodwork and scans until tumors develop. There are literally hundreds of diseases that cannot be detected through routine bloodwork and scans. Only until very specialized tests are conducted can some conditions be detected. SOD is no different. Another issue is the interpretation of results. Too often doctors say a result is normal even though it is just shy of being abnormal. Everyone is different in their reaction to an abnormality. Encourage the SOD patient to obtain copies of all bloodwork, scans, and procedural results for their review. Remember that bumper sticker, “Question Authority”. Well, encourage that too.
What exactly is the best test for diagnosing SOD?
In addition to symptom history, SOD may be diagnosed if liver enzyme levels are elevated and/or the bile duct is dilated. Patients with normal bloodwork and scans and who have failed conservative treatments may have their doctors test sphincter pressures via an invasive endoscopic procedure known as ERCP with manometry. This is considered the gold standard for diagnosing SOD. Unfortunately in some people an ERCP causes acute pancreatitis, which can be life threatening. High sphincter pressures are an indication the sphincter(s) are dysfunctional.
What treatments are there?
Every person with SOD is different. What may work for some people’s symptoms could aggravate another person’s symptoms. In addition, just like there are stages of cancer, there are levels of severity for SOD. Diet, medication, and natural wellness supports and remedies help many with SOD manage their symptoms. These conservative approaches are obviously the most desired approach to SOD symptom relief. When these treatment options fail, a small percentage of SOD sufferers require invasive treatments like biliary or pancreatic stents, botox injections of the sphincter, sphincterotomy (cut to the sphincter), and/or surgical interventions to sew the sphincters open or re-route the ducts.
How can I be helpful to someone with SOD?
Being a nonjudgmental supporter is the best thing you can offer someone with SOD. Validate his or her symptoms and ask how you can help them through this difficult time. If they have a hard time asking for help, offer to run an errand, watch a child, accompany him/her to a doctor’s appointment or procedure, etc. Anything that takes stress off him/her is helpful. Some SOD sufferers need someone to be their voice at doctor’s appointments and emergency room visits as not all medical professionals understand or even know about SOD. Having an advocate on board boosts a patient's chances of getting adequate treatment.