Our Journey:
Where to even begin? Unfortunately this health concern affected my wife who was 32 years old at the time. Together we have one son that is 13 years old. A few years after our son was born, she had a full hysterectomy performed due to severe endometriosis in approximately 2007.
Dr. #1 - What we initially thought was a digestive problem started in 2008. She complained of "Pressure" and abdominal pain. The first Dr. we saw in regards to this was her normal Dr. He put her on some prescribed stomach medication and insisted that she had IBS (Irritable Bowl System). After approximately one month, the pain did not go away, yet it seemed to get worse.
Dr. #2 - After returning again to the normal Dr., he referred her to a Gastrointestinal Specialist. This Dr. went over the usual Q&A and scheduled an Upper GI Scope. After analyzing the results, he concluded that she had IBS and had to live with it because the results didn't yield anything abnormal.
Dr. #3 - Since our local clinic only had one GI Specialist, we decided to try another city in another state. This Dr. listened to what we told her and thought that she had GERD and/or esophageal spasms. She scheduled a 3 Probe esophageal manometry. Once again after the results came back, there wasn't anything indicating that the data was abnormal, however she put her on additional medication and told her to quit the IBS medication. She also referred us to the Mayo Clinic in Rochester, Minnesota.
Dr. #4 - Fortunately for us, we were excited about the referral because the Mayo Clinic was ranked #3 in the Nation. We thought for sure we would get closure, however the visit was almost two months away. This meant that my poor wife had about 60 more days of dealing with this daily pain. We decided again to try our local clinic and speak to a different Dr. This Dr. took one look at her records, gave her a physical exam, and told us to wait until we see the Dr.'s at the Mayo Clinic! In the mean-time my wife is dealing with this pain and coping with it by taking Vicodin or other pain killers. To make matters worse, most Dr.'s wouldn't prescribe pain medication because of our age and the fear of being addicted. It's sad when junkies can complain of the slightest ache and get bottles of narcotics, yet for a legit patient with legit pain, they won't do anything.
Dr. #5 - So now we're getting close to the Mayo Clinic appointment when we get a return phone call from Dr. #3. She wanted to get a couple tests out of the way now before we went, since they're closer than the Mayo Clinic. Made sense to us so we went ahead with her suggestions. She scheduled a Barium CT Scan, blood work, and said that she'll forward the results to the Mayo Clinic for their records.
Dr. #6 - Finally we get to the Mayo Clinic which is 7 hours one way! By this time we've exhausted sick time, vacation time, and most personal time. You know what though; we're desperate for answers. We want closure! We end up staying one full week at the Mayo Clinic. This Dr. (which is another GI Dr.) schedules the following: 9 probe esophageal manometry, blood work (Thyroid), stress test, echo cardiogram, and an anorectal manometry. After reading the results he also concludes that she has esophageal spasms and the medication will take time to work (approximately 4 weeks). We also made him aware of the fact that she is constipated 90% of the time which is why he did the anorectal manometry. In the end of this visit he prescribed her with a different esophageal spasm medication than Dr. #3 and told her to try Metamucil to assist with the gas and bloating pressure caused by her colon. He commented that we're to return in approximately 4 weeks.
Dr. #7 - After returning home and trying the medication, it was evident that is was still not helping. Since we already had a follow-up visit to the Mayo Clinic we were confident he'd find something else however, that was about 4 weeks away. This led us back to our local clinic and decided to try another Dr. hoping that the prior visits might have missed something. Dr. #7 ordered blood work, abdominal scan, and prescribed Cymbalta.
WOW!! - By this time we're extremely frustrated and have given up on Dr.'s. I mean look, if it isn't the common cold or sickness they specialize in or deal with daily; they're confused and lost. 99% of the Dr.'s we saw did not put personal time into this and we honestly knew that they didn't care! One Dr. even insisted that this was a "mental" pain. We're starting to do our own homework now and researching because the medical field has failed us. We're providing possible explanations of what it could be and they're listening to us! It's scary, I mean REALLY scary when the people we count on are clueless and/or simply don't care.
Dr. #8 - After returning back to the Mayo Clinic, Dr. #6 starts trying to rule out other possibilities. We saw a cardiologist at the Mayo Clinic that gave her an exam and bloodwork. After describing her pain to him along with the stress test, and echo cardiogram results, he strongly felt that this was not related to cardiology. As a matter of fact, his notes indicated that he felt like she had costal chondritis. Dr. #6 reviewed his notes and was also now convinced that this was costal chondritis. Yes, he changed his diagnosis! He then prescribed a heavy anti-inflammation medication and told her that he would like to see us in 4 weeks because the medication will take time to work.
Dr. #9 - After returning from the Mayo Clinic she gave the medication time to work, however it didn't. At this point I'm starting to think that maybe they're all wrong and we are looking in the completely wrong area. I suggest to her that maybe this problem is related to her back. She's had almost every possible test and scan relating to the front area but nothing in relation to her back. Almost 10 months after starting this process, we're no better off than when we started. Actually we were worse. I schedule her at the local clinic with a Sports Medicine Dr. This Dr. was different though, he seemed to care. He wanted to know everything and took time to read through her history. He was skeptical that it probably wasn't her back but said that "Nerve Bundles" could cause this pain. He ordered back/spine X-Rays, MRI, and then referred us to a General Dr. for further steps. In the end, it was a let-down for us because he was acknowledging that she had pain, but just didn't have the ability to do anything about it. It was beyond his capabilities.
Dr. #10 - On to Dr. #10! Yea, the secretaries, pharmacy's, and even people we didn't recognize or forgot knew us. We were persistent and would never give up. Fortunately Dr. #10 would be one of our last Dr.'s. Once again we found another Dr. that seemed to care. He not only read over her entire history but took the time to just listen to her. He was a Dr. so obviously he knew and followed "medical statistics " but didn't believe in them to the extent of not performing a procedure because of them. He was baffled that her gallbladder had not been removed or considered previously. He scheduled a hida scan, noted that the results were elevated but not beyond what most Dr.'s refer to as protocol to remove it, however he was 95% convinced this was her problem. He also informed us that he believes that there's more than one issue causing all of this pain. We agreed to move forward and do it. After the gallbladder was out she noticed SOME relief except that the pressure was still present. Upon a follow-up visit he was really beside himself because he was wrong in some sense. Rather than giving up and passing us to another Dr. he ordered a barium enema, blood work, colonoscopy, and another upper GI scope. After reviewing these results he noted that she has a redundant colon, meaning that it's longer than the average persons and this COULD be twisting up causing the pain. He offered the option to cut and shorten the colon but in my opinion this was not an option. For 1, she's always had this colon yet didn't have the pain until 2008. #2, it's VERY risky. He agreed and suggested that it sounds like she has Sphincter of ODDI. He explained to us what could be done to correct it however our local hospital did not have the equipment to perform the procedures. So guess what.....yep, he refers us to another Dr.
Dr. #11 - Hopeful and feeling a BIT better we head back to Minneapolis, Minnesota for answers. We met with Dr. Timothy Kinney (GI Department) at the Hennepin County Medical Center. He also reviewed her entire history and ordered up an endoscopic ultrasound, MRCP, and a endoscopic sphincterotomy. He took the time to explain to us the risks involved and the possible outcome. At this time he classified her as SOD Type III. We had some decisions to make but honestly knew that we were running out of options. We decided to follow through with the endoscopic sphincterotomy. It required us an overnight stay to ensure that the risk of pancreatitis was not an issue. The final procedure consisted of an endoscopic sphincterotomy including 2 stints in main duct and pancreas duct. Dr. Kinney did mention that the pressure reading was somewhat elevated but the muscle was tight. He mentioned to me post-op that he had a "Hunch" that this was her problem.
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Conclusion - Two weeks after the procedure 95% of the pain was gone, and 4 weeks later, completely gone! She did have to return 4 weeks post-op and get x-rays to see if the stints passed. The main bile duct stint passed but the pancreas stint did not. Our fear of removing the stint and surfacing the pain again was very strong but the Dr. reassured us that if the stint is not removed it could case pancreatitis. After removing the stint, she is perfectly normal. All of the pain is gone.
6/2/21: Pain Returns – On 6.2.21 the pain has returned. Although it’s not a STEADY pain it comes and goes. It is managed currently by Ibuprofen 800’s left over from my wisdom teeth extraction. OTC Tylenol doesn’t do anything.
6/6/21: I take my wife to the ER. Lab work and a urine analysis is completed. She is treated for a UTI and given pain meds to manage it.
6/16/21: We see an ENT (Raquel Redfedlt). She says that her UA results from the ER did NOT show a UTI. She refers us to a specialist. The specialist calls today (6/17/21) and says he can’t help her. Here we go…….A message was left for RedFelts MA to consult with Redfelt and help us locate a specialist that has experience with this.
6/18/21: I (husband( managed to find a specialist that will treat my wife. Interventional Endoscopy Associates PLLC (Teodor Pitea) but the appointment is 8/13/21 (8 Weeks Away).
6/20/21: My wife is having major flare ups causing sever pain.
6/28/21: Primary (Winton) prescribed Tramadol (50mg) to take as needed for pain-relief. She has to take FOUR tablets for ANY relief. If pain persists we will go to ER for emergency ERCP/MRCP/etc referral to the new specialist and pain relief.
8/2/21: We had to end up searching for a "Pain Management Specialist" because 100% of providers won't script narcotics for something they don't understand. Fortunately we found a place here in Arizona that is familiar with SOD and treatment. He agreed to prescribe Oxycontin for pain management until the procedure scheduled on 9/3/21.
9/3/21: What seemed like forever finally came. She was in severe pain and flare-ups for the entire time up until the appointment. The morning of the appointment she has a REAL bad flare up so I took her in immediately. They let her sit in pain right up until they performed the procedure. It lasted about 2 hours from start to finish however when I was called back to the recovery room she was in WORSE pain. This had me extremely concerned. After the Physician came out to recap me he informed me she had TWO Large (quarter size) ulcers that were inflamed AND there was a potential leak that either the Ulcers caused OR her perforated her intestine.
After 24 hours of pain and another CT Scan it was determine there in fact was a "Leak" caused by the procedure (it's a risk). The physician caused the leak so another Sphincterotomy was performed. This time a LARGE stint was put in to the Sphincter of Oddi to attempt to seal the leak. What went from a 3 hour outpatient procedure turned into over 18 days in the hospital. They had to put a drain in her hip that leads to the pocket where the leak is where fluid and gas went to which in turn is causing the extreme pain. She has been on an IV for anti-bacteria meds, pain meds, food, and much more. It took ALL of 2 weeks to get the pain under control. They actually had to give her a pain pump due to the severity of the pain. After being on the pain pump for 10 days, no eating or drinking, breathing tube in her nose, drain tube in her nose, drain tube in her side she is now eating and walking. She now has to detox off of the Dilated and the withdrawals are extremely severe. We are hopeful he fixed the SOD AND the Ulcer inflammation has subsided. UPDATE: 11/29/21 she is pretty much pain free although she did have an Ulcer flare up this morning.
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A Summary of Previous Medical Diagnosis from 2008 to 2009:
Esophageal Spasms
Gastroesophageal Reflux Disease (GERD)
Pulled muscles in her back
Poor Posture
General Pain
Mental Pain (Depression, etc.)
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A Summary of Previous Medical History from 2008 to 2009:
Laparoscopic Hysterectomy on Jan 2007 (Ovaries Remain)
Gallbladder removed in Feb. 2009
Upper GI Scope
Lower GI Scope
3 Probe Manometry (Older Technology)
9 Probe Manometry (Newer Technology)
Various Blood Work
Stress Test
Echo Cardiogram
CT Scan with Barium
Colonoscopy
Lower Abdominal Scan
Ultrasound and MRI of Back
Barium Enema
Anorectal Manometry
Chest X-Ray
EKG
MRCP
Sphincterotomy x 3 (1 performed in 2009 and 2 performed in 2021.
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A Summary of Previous Medication from 2008 to 2009:
Pepcid, Peptol Bismol. Alka-Seltzer, Maalox, Mylanta (over-the-counter meds)
Cymbalta - Discontinued
Lyrica - Discontinued
Zelnorm - Discontinued
Zoloft - Discontinued
Lotronex - Discontinued
Reglan - Discontinued
Prilosec - Discontinued
Nexium - Discontinued
Protonix - Discontinued
Aciphex - Discontinued
Prevacid - Discontinued
Nitroglycerin - Discontinued
Diltiazem (Calcium Channel Blocker) - Discontinued
Anitspasmodic - Discontinued
Hyomac - Discontinued
Trazodone - Discontinued
Dicyclomine - Discontinued
Meloxicam - Discontinued
Flexoral - Discontinued
Amitriptyline (5.20.2010 - Currently prescribed at 25mg's every other day or as needed)
Tramadol - As needed - Discontinued
Pantropozole - Once a day to reduce stomach acid to treat Ulcers.
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Frequently Asked Questions:
In this section we'll cover some questions that you may already have asked, will ask, or maybe haven't even thought about yet. The purpose of this page is to cover information that you can present to your Dr. or reference when you need it the most. I must acknowledge that I am not a Dr. and most of the information I post is strictly from experience. If I can link you to other resources with solid history, they will be hot-linked.
What is Sphincter of ODDI Dysfunction?:
The Sphincter of Oddi is a muscular valve that controls the flow of digestive juices (bile and pancreatic juice) through the ampulla of Vater into the second part of the duodenum (First part of the small intestine). The Sphincter basically spasms causing the symptoms listed below.
SOD is usually only considered in patients who have undergone cholecystectomy (Removal of the Gallbladder).
What are the symptoms of Sphincter of ODDI Dysfunction?:
Pain behind the breast bone radiating around to the back (usually center of back, or straight through). This is what my wife suffered with everyday. It is ALSO similar to Ulcer Pains. VERY similar so be aware.
The major presenting symptom in patients with sphincter of Oddi dysfunction is abdominal pain.
Pain/Pressure under rib-cage that can radiate around to your back.
The pain is characteristically sharp, postprandial, and located in the right upper quadrant or epigastrium.
The pain may be associated with nausea and/or vomiting, may last for several hours, all day, or everyday.
Fever, chills, and jaundice are uncommon symptoms.
Patients may also present with acute recurrent pancreatitis.
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What triggers the distinct pain of Sphincter of ODDI Dysfunction:
Stress and anxiety (a definite trigger for my wife)
Pain can or cannot be trigged by Caffeine (a definite trigger for my wife)
Greasy foods
Alcohol (Vodka, Rum, Whiskey, Rum..etc)
Certain medications: SSRI's, Pethidine, Morphine, Codine, etc.
Larger meals, regardless of content
Exercising
Lumina distention of the gut
Not eating frequently
Large vitamins or various pills
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How is the Sphincter of ODDI Dysfunction classified?:
Type I = Patients will have definite readings on laboratory work and through X-rays; elevated liver enzymes in blood work and dilated bile ducts on an Ultrasound or CT scan).
Type II = Patients will have definite readings in either blood work OR scans, but typically not both.
Type III (What my wife had) = Patients have normal blood work, normal scans, but still experience the common symptoms and issues related to SOD.
Type I and Type II patients COULD have a stone in the bile duct (depending on pathology).
Type III patients are tough to diagnose and some Dr's are skeptical about performing any procedures.
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What can be done to fix the Sphincter of ODDI Dysfunction?:
Proper Diagnosis = First off, you have to make sure this is what you have. The SOD can be difficult to diagnose in most cases because a larger percentage of Dr.'s are not familiar with the overall dysfunction. CT Scans are basically useless. You're best bet is bloodwork and either an MRCP or ERCP. SOD is usually only considered in patients who have undergone cholecystectomy (Removal of the Gallbladder).
Medication = Some medication can be used to relax the SOD muscle. Calcium Channel Blockers and Nitrates have shown positive results in treatment of SOD.
Botox Injections = This procedure will relax the muscles and assist or prevent the spasming.
MRCP (Magnetic Resonance Cholangio-Pancreatography) = This procedure is good for checking the biliary and pancreatic drainage systems.
ERCP (Endoscopic Retrograde Cholangiopancreatography) = This procedure checks the "squeeze pressure" of the main bile duct of the Sphincter of ODDI and pancreatic ducts drain. The ERCP is often used to cut the muscle, relieving the common symptoms of pain. There is a chance of suffering an attack of pancreatitis. For this simple reason an ERCP is usually done only after other simpler tests have been exhausted.
Sphincterotomy = The sphincter is separated either by simply stretching or cutting. Cutting the muscle prevents spasm and temporarily weakens the muscles. Both methods help the underlying area to heal. This can be done when performing an ERCP.
Sphincteroplasty = Performing a complete sphincterotomy at open surgery. Consult with your Dr. for more details.
Relapses occur in about 1/3 of cases (Per Dr. Cotton)
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What are the risks of performing the various procedures?:
Medication = Side effects can include the typical vomiting, nausea, low libido, depression, no relief, ulcers, and addiction.
Botox = This procedure is short term (6-12 months). Consult with your Dr. for specifics.
MRCP = Is purely diagnostic. Direct intervention is not possible at this time.
ERCP = The main risk of ERCP is pancreatitis, which occurs a few hours after the procedure in 5-10% of cases. It usually settles in a day or 2, but can last for several weeks. When sphincterotomy is done during ERCP there is also a very small risk of bleeding or perforation, which may require surgery.
Sphincterotomy = Reference this link
Sphincterplasty = Reference this link
Per Dr. Peter Cotton: "ERCP and sphincterotomy in this context is potentially VERY risky. Pancreatitis rates of up to 30% have been reported. Patients should seek out tertiary centers that do manometry. We/they may not understand the condition completely, but we do know how to reduce the risks of the procedures."
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Do you know of any Doctors or references that I can consult with?:
To start with, these contacts/references WILL most likely need a referral from your Doctor.
These contacts/references were obtained through personal experiences of SOD patients like you and my wife. They are proven and know ALL about the Sphincter Of Oddi Dysfunction.
#1 - Please visit this site: www.clinicaltrials.gov Per Dr. Peter Cotton; "This website gives details of the EPISOD study, and the collaborating centers. The NIH has funded ($7m) for a very careful research study in SOD III to try to bring better clarity to its existence, diagnosis and treatment. I am the Principal Investigator at MUSC, and 6 sites around USA are recruiting. We hope that this will better identify those people who may benefit from sphincterotomy, and, equally important, those in whom ERCP treatment is both useless and harmful."
#2 - My wife's Doctor: Dr. Timothy Kinney (GI Department) at the Hennepin County Medical Center
#3 - Dr. Peter Cotton: This Dr. was mentioned in the thesphincterofoddi.com blog and was kind enough to clarify some of the facts listed on our website. Dr. Cotton is located in Charleston, South Carolina.
#3 - Dr. Peter Cotton: This Dr. was mentioned and was kind enough to clarify some of the facts listed on our website. Dr. Cotton is located in Charleston, South Carolina.
#3 - Dr. Tedor Pitea : Dr. Pitea has performed countless ERCP's, Sphincterotomies, and is familiar with the Sphincter of Oddi. He is located in Arizona and has 3 locations. Feel free to visit this website for more information: WWW.TEODOR CRISTIAN PITEA.COM
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Advice from us!:
Log Everything = If you haven't started logging everything, DO IT NOW!! We didn't start until 1/2 through the process. What we learned throughout the process is that Dr.'s go by previous records. Most of the time they just scan through them, possibly missing important details. We saw one Dr. that said it was "Chronic Pain" that people get and prescribed her medication, I asked him if he looked at her records and he straight-up said "NO."
Diet Log = Start by trying to figure our what your triggers are. Keep a diet log of when and what you eat. If something triggers an "attack", log it and the time. Until you find a permanent solution, maybe you can help control the pain and attacks.
Medical Visit Log = I can't stress how important this one is. We spent and wasted probably 80% of the time transferring records and repeating the same thing to different Dr.'s. even though they said they read over the records, it's the same questions; "What's your pain", "Where is it located", "Do you smoke", "On a scale of 1-10, what is your pain?" blah blah blah. Eventually I kept close track of EVERYTHING and when we went to a new Dr. I handed them a copy of what I documented above.
Ask questions = When you get a new Dr. or even if something comes to mind, question them. Dr.'s that are not driven by ego will listen to you. My wife was somewhat reserved but I was more aggressive and to most Dr.'s they did not like me because I had a voice.
Stay Strong = I know it's tough to keep your head up but it's important to keep the faith and never give up! If you stay persistent and keep looking, you WILL find a solution.