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Sphincter of Oddi dysfunction discussion


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Old 03-16-2006, 01:04 AM   #1
Jennio
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Sphincter of Oddi dysfunction discussion

Hello, all! I am new to the forum. Four years ago, I was diagnosed with sphincter of Oddi dysfunction. I have had two or three ERCPs with sphicterotomies. The procedures helped to a degree, but I still suffered from far too many attacks (I usually experience elevated LFTs with my attacks, though I have also had pancreatitis as well). Most recently I have had multiple ERCPs with biliary stent placements. This helped a great deal, but it is not a good long-term solution. The stents have to be replaced every 3-4 months, and the procedure is high risk.

So . . . I am now stentless! My current treatment is to take Robinul Forte 2mg twice a day. I am back to having attacks, unfortunately, but not too much of a surprise. My GI doctor and I are considering more extensive surgery as the next step. I don't know the name of it--essentially it is open abdominal surgery to cut the sphincter. I know it is really risky, can pose complications, and may not help or even worsen the problem. But then again, maybe it is just the thing . . .

I would be interested in hearing other people's experiences with this surgery. Also, I would appreciate in knowing what other treatments people have found successfull or not-so-very helpful. What has worked for you?

Thanks for your help,
Jen

 
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Old 03-16-2006, 05:17 AM   #2
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Re: Sphincter of Oddi dysfunction discussion

Jennio - I have been having some strange digestive problems and have had many tests done. Things are coming out normal. The next step the doc said is to get test for SOD. Can you tell me what it feels like when you have an attack. The docs seem to think this could be GERD, but it still happens when I am on my Protonix (PPI meds). My symptoms are: A fullness or pressure in the upper stomach/chest area -where the rib cage meets, it is accompanied by belching which releives it some, then can radiate to the upper back. Almost like someone squeezing your shoulders together iwth a vice grip. When I belch I can taste foods that I've eaten, or some times even regurgitate food. Sometimes this feeling lasts 10 minutes..sometimes 2 hours until it's gone. I usually take a good dose of Maalox Max, Gaviscon, or some tums and it relieves it. How do they test for Sphincter of Oddi? Is it risky? Thanks.

 
Old 03-18-2006, 03:33 PM   #3
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Re: Sphincter of Oddi dysfunction discussion

Sorry to hear about your GI troubles. Hope you find this information helpful.

First, a little anatomy lesson. Your sphincter of Oddi is a sphincter muscle that joins at the end of your commoln bile duct and your pancreatic duct. The sphincter empties into the small intestine, where it regulates the flow of digestive enzymes from your gall bladder, liver, and pancreas.

With sphincter of Oddi dysfunction, there is an abnormality of your sphincter of Oddi. It may be too small, or, as in may case, something causes it to spasm. You can think of it as getting a clog in a drain--there is a "clog" in your sphincter, which causes the digestive juices to get backed up. Because of this, attacks are usually accompanied with elevated liver enzymes or elevated pancreatic enzymes (pancreatitis).

Attacks are usually very painful (though I have had more mild ones). The pain is an intense crushing, burning, spasm that centers in my chest and radiates into my back and into my upper abdomen. The attacks can be accompanied by nausea. My attacks can last anywhere from a half hour to 12 hours. Narcotics can help take the edge off the pain, but nothing really helps. You just have to let the attack run its course.

Sphincter of Oddi dysfunction is a rare disorder and difficult to diagnose. One sign that you may have it is that your attacks are accompanied with elevated liver enzymes or elevated pancreatic enzymes. This is fairly simple to check for. It requires a blood test during an attack.

A specialized doctor can also go in and measure the pressure inside your sphicter of Oddi. This procedure is done through an ERCP. It is a high risk procedure; it can cause pancreatitis.

I hope this is all helpful. Good luck!

 
Old 03-20-2006, 05:51 AM   #4
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Re: Sphincter of Oddi dysfunction discussion

Would burping and regurgitation also be signs of an attack. I'm wondering it this is what I have. I was told I could just have sever GERD at time. What triggers these attacks. Is there anything you can do or take to help with attacks? Can this disease be fatal?

 
Old 03-26-2006, 07:45 AM   #5
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Re: Sphincter of Oddi dysfunction discussion

I am in desperate need of some information regarding SOD. I am currently not diagnosed with this, although this is the way my GI is leaning. My story is this: In May of 2005 I started to have symptoms of gallbladder disease. I would have acute attacks several hours after eating anything that had a high fat content. I had an abdominal ultrasound that revealed gallstones. On July 18th I had a lap chole. Since I had the surgery I have still had similar attacks. I have had an EGD that revealed GERD and was placed on Prevacid Solutabs 30 mg once a day. The pain typically starts when I am sleeping in the early hours of the morning, and wakes me up. It starts in the epigastric region, and is usually mild, but within minutes, it is a sharp, level 10 pain that radiates to my right side, and it feels as though someone has a vice grip around my rib cage. Sometimes if I eat something like a banana prior to it getting to this level of pain, it will subside somewhat. However, sometimes this makes it worse and is only relieved by vomiting. In December, I had an attack that was so severe that I was hospitalized. My LFTs were elevated, and the pain was only relieved with IV narcotics. I had an MRCP at that time that was normal. My Prevacid Solutabs were increased to 30mg twice daily, and that has kept the serious attacks at bay for the most part. My current GI is sending me to see a specialist in SOD in early April for manometry, as he believes that I suffer from SOD.

My question to you is this, do any of you have these symptoms. Typically when do your attacks occur, and are there any triggers that you can identify.

I am leary of undergoing the ERCP due to the risk of pancreatitis, and I'm not sure that the benefit will outweigh the risks.

Any information that you can share is greatly appreciated.

Pam

Last edited by moderator2; 03-29-2006 at 03:22 PM. Reason: please use the reply button - do not quote when the quote is not necessary to your message

 
Old 03-27-2006, 06:03 AM   #6
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Re: Sphincter of Oddi dysfunction discussion

PMARC68 - I'm in the same boat with you. The next step my GI doc is leaning towards is sending me to a specialist in Milwaukee, WI for testing of SOD. I too have heard that this test can cause pancreatitis and overall leave you more miserable than when you started. I am a mess thinking about what to do! Do you have the proceudre done with the risk of harming your pancreas - or do you tough out the pain? Is it fatal if you don't have the SOD treated and just live with it?? I'm not sure if I just have sever GERD? I've had every test done. My symptoms are a squeezing pressure pain in the upper stomach where the ribs meet. Then it intensifies and spreads to my chest and upper back between my shoulders like my shoulder blades are in a vice grip. If I bend over or belch it is relieved a bit. Also, accompanied by belching and regurgitated food (sometimes). It's miserable. These attacks can last anywhere from 20 minutes to 4 hours. I usually down some Gaviscon, Maalox MAx or whatever I can get my hands on when these attacks happen. Seems to be after certain foods - but, then again, just sometimes at random. Does this sound similar to what you have? I've been on and off different PPIs for about 1.5 years now. Currently I am totally off. I was on 40 mg of Protonix 2x/day. I was having sever burning in my upper stomach (that wasn't heartburn). Was tested for everything in the world. Then, stopped the Protonix. After 2 weeks that burning subsided. But, still get those attacks, about twice/month. My last edoscopy was one year ago. It showed everyting normal, but I was on Nexium at that time. I've also had a cat scan of the abdomen, an MRI of the abdomen because they found some lesions on the liver, but it all turned out to be harmless hemangiomas (what a scar - and over the holidays on top of it). I also had a barium swallow esophogram and colonoscopy. All normal. Mom says I should have my heart checked out because of the chest pains. I did have an EKG one year ago though that was fine. I think this digestive stuff scares you so becasue the symptoms mimic aloth of health issues. If you receive and more info on SOD, please share it with me. Like you, I am leary about the test for SOD and the outcome!!! Thanks.

 
Old 03-27-2006, 02:57 PM   #7
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Re: Sphincter of Oddi dysfunction discussion

jj9500 - Thank goodness that I have finally found someone with similar symptoms. I have been living with this for almost a year now, and I felt as though I was the only one! I know what you mean about having the ERCP with manometry. I'm not entirely sure I want to risk pancreatitis at this point, but I don't want to live like this anymore either. I don't believe that SOD is fatal, but when it strikes, I feel as though I would like to die. My symptoms are very similar to yours. I get the exact type of pain, however, it doesn't really worsen when I lean over. Belching relieves it somewhat, but usually it is only vomiting that takes care of it. Have you ever tried eating something before it gets really bad. That sometimes helps me, so that has got me wondering. All of the literature that I have read so far states that attacks mostly occur within a few hours of eating. In my case, however, it is usually if I have not eaten in a while (middle of the night, or mornings that I skip breakfast). Does this happen to you?

My worst attack came one day when I woke up with the flu. I couldn't really eat or drink as I was vomiting constantly. At 7pm that evening the pain started and became so intense that I had to go to the hospital. When I walked in they thought I was having a heart attack because of the way that I looked, and my blood pressure. I was admitted to a cardiac unit, given some narcotic pain relief, and spent 24 hours on that floor having a full cardiac workup. All tests were negative for a heart attack, and nothing abnormal with the overall heart function. Then they moved me to the regular floor performed a chest CT, and MRCP which revealed nothing. LFT's however, were markedly elevated for the first time since all of this began in May 2005.

I also had severe burning in my chest, but that has subsided since they upped the Prevacid to twice daily back in December. I really think that is the only reason that I am doing this good now. I mean, I get this every night usually, but it's about a level 4-5 pain vs. the 10 it was prior to the med increase.

I try to watch my diet by limiting my fat intake as the Dr. recommended, and this seems to help I guess.

I have my appt with the specialist on 4/10/06, so I am anxiously awaiting to see what his opinion is. My GI I see here has been convinced from the beginning that it is SOD. He believes that I had a 2 fold problem all along with the gallstones, and this was just underlying.

Thanks, Pam

 
Old 03-28-2006, 12:42 AM   #8
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Re: Sphincter of Oddi dysfunction discussion

Hello to both of you. I hope maybe I can answer some of your questions about SOD. I've had it for four years, and SOD is a tricky disorder to pin down.

First, this Web site provides some great information about SOD, and it also provides links to other educational sites:

[url]http://www.indiana.edu/~engs/hints/oddi.html[/url]

The more you know, the more empowered you are to take control of your health.

One of you had asked if SOD is life-threatening. I asked my doctor that very question, and he said no. It won't kill you. (But when you have a severe attack, you feel like you are going to die.)

An ERCP is a high risk procedure; there is a risk of pancreatitis. Only you and your doctor can decide if the benefits of the test outweigh the risks. I have had multiple ERCPs--2 with sphincterotomies and 3 with biliary stent placements--and I have never had pancreatitis as a result. My doctor actually never measured the pressure of the sphincter; he just performed the sphincterotomy. I had the classic symptoms and my blood work confirmed the diagnosis of SOD (elevated LFTs, amylase, and lypase), so my doctor made the cut. He said the risk of pancreatitis with a sphincterotomy was lower than when measuring the pressure (mamometry?) From his experience, his patients who he sent to have their pressure measured usually got pancreatitis. And he also said that some patients have normal pressure unless they are actually having an attack during the procedure, so measuring the presssure isn't reliable for all patients.

I haven't been able to really pin down what causes my attacks. They can occur anytime day or night. They do seem to maybe be linked to stress. And overall, a low-fat diet helps control my day-to-day symptoms: I do get indigestion and mild pain frequently.

Hope this helps as you continue to learn about SOD.

 
Old 03-28-2006, 02:09 AM   #9
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Re: Sphincter of Oddi dysfunction discussion

Jennio,
Thank you for the information. I'm so happy that I have finally found somewhere to turn. You're right about wishing you would die when an attack occurs. I've had a bad night and have been awoken twice. I think that is the part that's the hardest for me. This broken sleep is killing me. I also believe that stress may be a factor. I can have an attack start at work simply because I am stressed out.

Thank you for the information, and the website. I will definitely check that out. If you wouldn't mind, I would like to hear more about how you were orginally diagnosed. I am extremely worried about this upcoming specialist appointment.

Thanks

 
Old 03-28-2006, 11:13 PM   #10
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Re: Sphincter of Oddi dysfunction discussion

I would be happy to tell you about my diagnosis. Anything to help you. SOD is hard to diagnose and treat.

I had my first attack four years ago. It woke me up in the middle of the night. The pain was so intense, I thought I was going to die. I was so scared; I wanted to go to the ER, but I was too sick to get to the car. My parents had to call an ambulance.

At the ER they did blood work and found that I had pancreatitis. They concluded that I probably had a gall stone in my pancreatic duct. I was feeling better the next day, and my pancreatic enzymes were back to normal, so I was released from the hospital.

I followed up with a GI doctor. He ran tests on my gall bladder, including a HIDA scan, to check for gall bladder disease. The tests were inconclusive. He couldn't detect any stones, but my bout with pancreatitis pointed toward gall bladder. But because the tests were inconclusive, he also began talking to me about the possibility of SOD. But he said first we would address the gall bladder and see if that solved the problem. I had my gall bladder removed after a second attack a few months later. When the surgeon removed my gall bladder, it wasn't full of stones but instead sludge and crystal-like formations. The surgeon wasn't sure if it could cause my symptoms or not.

But my attacks didn't stop after I had my gall bladder removed. Just a week after surgery, I was back in the ER in severe pain and with elevated liver enzymes. It was then that my doctor diagnosed me with SOD.

The day following that attack, my doctor did an emergency ERCP and sphincterotomy.

I received my diagnosis of SOD based upon my physical symptoms accompanied with either pancreatitis or elevated liver enzymes. My doctor ruled out the possibility of gall stones and gall bladder disease by removing my gall bladder, so that really left only SOD. I never had the pressure of my sphincter measured (mannometry?). My doctor said measuring the pressure was a higher risk of causing pancreatitis than a sphincterotomy alone. He also said that measuring the pressure is not always reliable. For some with SOD, unless they are actually having an attack, the pressure of the sphincter and the bile duct is normal.

I have had two sphincterotomies. They have helped to a degree, but they didn't bring any magical cure. I still get attacks. I also take a smooth muscle relaxer (it works on the digestive track) called Robinul Forte. That has helped my attacks a lot.

I've been feeling a little discouraged lately not knowing what to do next in my treatment. I have a really good doctor--he trained with the nation's SOD specialist--and he said we can do more surgery (extensive, open-abdominal surgery), but it is really risky and there are no garauntees. He said only I can judge if my pain is bad enough to take the risk of surgery. I've been reading a lot about diet and stress relief. I'm thinking maybe I need to work harder at making lifestyle changes before doing more surgery.

Don't be nervous to see the specialist. Empower yourself with knowledge and go to your doctor with that knowledge. One thing I've learned through this whole experience is that you are your own advocate. Follow your gut (no pun intended) and be assertive with your own health care. Be sure your doctor is experienced in diagnosing and treating SOD (if he or she is experienced doing ERCPs, it decreases your risk of complication such as pancreatitis). And never hesitate to get a second opinion (my doctor even sent me to get a second opinion himself to see if someone else could see something he wasn't seeing).

Well, this was long! Sorry, but I hope it helps. Take care, and let me know if I can answer anymore questions. Let me know how your appointment goes.

Jennio

 
Old 03-29-2006, 07:57 AM   #11
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Re: Sphincter of Oddi dysfunction discussion

pmarc and Jennio
pmarc - Keeps us posted on what the doc tells you. - As posted in an earlier post - I'm waiting for a call back from my GI doc. He is leaning toward getting tested for SOD to find out my problem. Is there any other way to test for SOD other than doing the ERCP? That procedure really makes me nervous. When i get these type of attacks, I feel like I'm having a heart attack. The worst is the pain in the upper shoulder blade area. What about checking your liver and pancreas by blood test. Would this tell if you have SOD? Or, would you have to get to the ER during an attack? I just can't figure out what these attacks are. My gallbladder was removed November 04. I didn't have the pain in the back shoulders during that attack. It was more vomitting (2 days on and off and towards the end nothing but bile) and pain in the upper stomach area. I thoguht I had stomach flu. When I called the nurse direct nurses in the late evening hours they told me to come into the ER it sounds gallbladder related. I never even new what a gallbladder was when I went into the ER - they found stones and one large one blocking the duct by result of an ultrasound. They gave me some pain meds, antibiotics for infection and ordered the surgery within a few hours. That went well. I jsut wonder if what I have now could be pancreatitis? What are the symptoms of pancreatits? Last appointment I had with my GI doc he made a comment about testing my liver/pancreas with a blood test. But, after looking at my charts he noticed a blood test was taken when I had my gallbladder removed... BUT, that was over a YEAR ago. I can't beleive he wouldn't want another blood test taken. Or, would somehting have shown up at that time if there were problems in the pancreas/liver area? This GI doc and his assistant are TERRIBLE and following up on return calls and test results. Seems like I'm always calling them to get results, etc. It's very aggrevating!!! Sometimes I wonder if I am overreacting to all of this - could I just have a sever case of GERD that ocasionally flares up. I usually get these attacks about 2-3 times/month. Sometimes severe, sometimes not. Seem to be aggrevated by foods.

 
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Old 03-29-2006, 03:17 PM   #12
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Re: Sphincter of Oddi dysfunction discussion

I definitely will keep you posted as to what the second GI says. I feel as though things are starting to get worse again. I have had 2 semi-severe attacks in the past 2 days. I haven't had anything remotely close to this level since Dec. I also feel like I'm having a heart attack. Although I know it's no joking matter, I sometimes think I'll never know if I really do have a heart attack.

You are not alone in wondering if it's severe GERD. I think that too sometimes, but then GERD would not make my enzymes rise the way they have. Speaking of that, my Dr. here tests mine monthly to make sure they stay down. He also wants me to have them drawn either during or immediately after an attack. This is difficult to do as the lab is across town from where I work, and my job responsibilities don't lend me that kind of time.

A question for both of you is how do you relieve the pain. I've tried Maalox, Pepcid, Zantac, and a whole host of other drugs, but they don't help. My Dr. prescribed Levsin SL, but that doesn't seem to help much either. The only thing that works usually is food or vomiting. Sometimes I can take a few bites of banana and the pain goes away; but sometimes, eating makes it worse, and it makes me vomit. Vomiting also usually takes the pain away. I can't take any of the cardiac meds like Nitro due to my blood pressure is very low as it is.

Thanks for the support, and keep me posted.

Pam

 
Old 03-30-2006, 11:43 PM   #13
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Re: Sphincter of Oddi dysfunction discussion

jj99500--Before I had an ERCP, I would have my blood levels tested for pancreatitis or elevated liver enzymes. This will help diagnose you with SOD--SOD can cause both pancreatitis and elevated LFTs (liver function test). (I am surprised your doctor hasn't done this yet!) You must have the blood test during an attack, however. You can have your doctor write an order for the blood test (specifically, amylase, lipase, and a liver function test), and if your attack happens during the day when the hospital lab is open, you can take the order to the lab and have them draw the blood and run the test. If, however, your attack happens afterhours, such as in the middle of the night, you need to go to the ER. Tell the ER doctor your GI doctor suspects SOD and you need to be tested for pancreatitis and elevated LFTs.

I find that it is best to have your blood tested, like, at least an hour or so into your attack. Don't go at the first sign of pain is what I'm saying. Let the "damage" have time to happen so it will show on the blood work.

I also have to call my doctor to follow up and get results from blood work. I used to get frustrated, but then I realized a lot of doctoc offices are that way. Doctors have a lot of patients and paper work--lab work--must get lost. I just changed my expectations and learned I needed to be proactive and call.

Pam--When an attack hits, only time cures the pain. I haven't found anything that really effectively takes away the pain. Narcotics take the edge off. My doctor prescribes me Lortab to take during an attack. Phenergan helps with nausea. My doctor also prescribes me Robinul Forte--a smooth muscle relaxant, which works on the digestive system--to help prevent attacks. That helps a lot. I take 2mg twice a day. I believe Robinul Forte is similar to Levsin.

Take care both of you!

Jennio

 
Old 03-31-2006, 06:53 AM   #14
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Re: Sphincter of Oddi dysfunction discussion

Jennio - thank you for the tip on getting a blood test done before going for the ERCP. I'm still waiting for my GI doc to call me back (waiting two weeks today) to chat about the next step in my testing and possibly sending me to the SOD specialists in Milwaukee, WI. I think I will check with him on getting blood drawn during a "so called" attack to see if my enzymes are elevated. We haven't done this. He did mention something about testing my liver function last time I met with him about 1.5 months ago. But, after looking at my chart he said here was no need to beacuse they tested a year ago and all was fine when they removed my gallbladder? But, that WASN'T during an attack! Also at the last appointment he once mentioned something about trying Nitro meds? What is that, is it for the pain? Is it nitroglycerin? I thought that was for heart patients? What does it do? I'm full of questions today.

Pam - when I go through this pain - I drink Maalox Max (right out of the bottle - I know...sounds disgusting) and pop rolaids. I carry it with me wherever I go and keep a bottle in my desk at work. Don't know if it's coincidence or not, but it seems to do somewhat of a good job, or maybe it's just that after a while the pain takes it course and works its way out. Also, Gaviscon helps me. When I bend over and belch that seems to eliminate some of the pain as well. I haven't had any of these attacks for two weeks now - yeah, I'm on a roll.

How often do you two get these attacks?

 
Old 03-31-2006, 08:27 AM   #15
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Re: Sphincter of Oddi dysfunction discussion

red
Well, it sounds like you're having what my 15 yr. old granddaughter is having. She just turned 15 last week, and 4 weeks ago she had her g.b. removed laparoscopically. She's been to the E.R. 4 times, and in the hospital 2 days since then with exactly the same attacks she had before the g.b. was removed. She's missed 3 days of school this week alone.
They've performed every test there is, except the ERCP, which they will only do if her liver enzymes are elevated. So far, it's only the GGT blood test that shows an elevation. It's reading 102 as of the last time. Not sure what that indicates, but normal is 0-51. She's quite overweight--tall--and appears to be 17 or 18. She's under the care of a Pediatric G.I. doctor who has been very concerned and had all the tests run so far. However, we now have an appt. at a major medical center for her to see the G.I. folks there to evaluate all her tests and see if an ERCP is indicated. We don't want it if it isn't necessary, but this can't go on!! I feel for you and your problems and hope you will keep us posted and I'll do the same.
yanksgirl

 
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