Tired of Tests Spinster of Oddi Pain

[Soccermom]

Anyone Else Feel This Way?
Back in November 2001 I went to a Gastro.specialist complaining of RUQ pain that radiated to the back.  He performed an Endoscopy;removed 3 polyps and perscribed Nexium 40mg for GERD, ordered a DISADA Scan with Ejection Fraction; (reproduced my pain as soon as it was injected)Scan was abnormal.  I then was referred to a surgeon for Lap. gallbladder surgery DEC-18. Had gallbladder removed, no stones, not diseased, Surgeon said it was a "text book" case. I continued to experience pain after surgery, thought it was a "healing process".  In MAR-02 I went to my GP for my yearly exam.  She took standard blood tests.  Called me that week and advised me that my cholesterol was 250 and asked me if I drank much;I don't.  She told me my liver enzymes were "up a couple points". In April I went back to my Gastro. Dr. and told him of these results.  He ordered many, many blood tests (13 tubes worth) and and abdominal MRI. Suggested Spinster of Oddi Dysfunction. Perscribed Nitroglycerin for the pain and told me to take 2 Nexium vs. 1 for 30 days. He told me he would get back to me if anything else showed up in the tests. Blood tests 5/1 MTI 5/6.  To date I have not heard a word from my Gastro. Doc. However; my GP(also received copies of all tests) called yesterday and asked if I was taking any kind of iron pill or suppliment; I am not.What's that about? Also,I had bronchitis 2 weeks ago (Zithromax twice daily)and while on antibiotics pain was pretty much gone, interesting?  Nitro also helps (don't like to take it)I am constantly worried it might be more. HELP

[taylee]

Anyone else have any updates on their progress with SOD?
Soccermom, Addie, Ainee?
I haven't had an ercp either, still waiting to see Dr.
After waiting 3 long months to see him, the day I was going in, I decided to call and see if he was running on time, and they said I wasn't even in the computer for an appointment, needless to say I was very disappointed, disheartened and felt like I was left to fend for myself.
I wish this SOD would go away. It hurts.
Taylee

[sheza21]

I am a 22 year old female and last year I began to get severe pain in my upper abdo. I was sent to A&E (ER) 7 times, before finally taking my gallbladder out. I also had pancreatitis and fatty liver (even though i was on a low fat diet and do not drink excessive alcohol). I thought it was the end until the pain started to come back! But my gallbladder complete with stones and sludge had been removed!!! I have been getting sever pain practically nearly every day now, but my hospital haven't got the right equipment until the end of the year to do the pressure tests on my oddi. So until then its pain killers all the way. I never knew such a small thing could cause so much pain!

[ookpik]

I am relieved to see that others cannot take codeine, etc. without experiencing intense "gallbladder attack" type pain.  Now, thanks to this forum, I know I too have SOD.

Had my gallbladder out 13 yrs ago and experienced episodic pain thereafter.  After about a year, I went back to GP to see if there was a solution to the pain.  He sent me back to the surgeon who referred me to a gastroenterologist.  Gastro wanted to do an ERCP - I freaked out because of the possibility of severe complications.  Went to another gastro for an opinion (in Dallas) and he said that an ERCP wasn't really warranted, to give it time and it would get better.  It did, but I did and still do occasionally have "attacks".

Finally I recognized myself that most of the attacks occurred  when I would take cough medicine (prescription with codeine). About the time the coughing would stop, the intense pain would begin.

Talked with at least two drs - GP and OB/GYN about that - neither mentioned SOD.

I take Bentyl when it starts and that usually does the trick.

[Addie]

Update on my CT Scan I had on Tuesday.

The gastro doc called and said the Bile Duct showed 11 mm of dilation and something about the extrahepatic duct.  Since, I have had my gallbladder removed many years ago, the radiologist suggested to my gastro Doc to order a MRCP.  It is suppose to be safer than an ERCP and just as good at diagnosing a problem in the bilary duct and pancreatic duct. They have scheduled in for this coming Monday.  Now, something more to be concerned about.

Maybe the the surgeon left a stome in there  after all these years.

[Soccermom]

Please let us know what your GI doc says.  I can't believe this could all be caused by reflux.  Pepto Bismoth used to help some I have been on Nexium for 7 months with no relief. My 11 uear old says that she is going to grow up to be a Dr. so she can find a way to make me feel better and live forever :).

[Moppet]

You sound JUST LIKE ME! ALMOST EXACTLY. I have yet to find any relief.  I have had every test in the book and had the gallbladder removed.  Please Please email me with any news on this ***@****

For some reason my GI Doc thinks this is Acid Reflux...but after being on 2 doses of 40 mgs. of Protonix daily for 7 months  and still NO RELIEF and the pain goes into my back. I will be seeing my GI Doc this next week to see what he can pull out of his sleve.  I have tried so many things.

GOOD LUCK  TO US ALL!

[Soccermom]

Hi, my problem is I trust my Gastro. doc and if he says that it's not a good idea to have an ERCP and I can try and control it with Meds and diet, I will try.  It does not bother me every time I eat or dring (yet). I have read so many pros and cons on the ERCP, I don't know what to think.  I live in Central NY and I have yet to find a Specialist in ERCP.  I am tempted to start from scratch with a different DR. but I don't want to go through all the tests again.

I just with my blood work was ok, it scares me.  I had an episode w/my kidney's 2 years or so ago had a trace of blood in my urine w/no infection present but a burning pain. They did a IVP & CAT scan and found 2 spots.  Because one was on each kidney and they didn't show up on all views; urologist said it was probably my anatomy, not to worry. My blood work was all normal (back then) I go back every 6 mos. and do a Urine Cytology so far, all normal. Now my Cholesterol is up, my gallbladder is gone, liver enzymes are elevated, my iron is low and I still have this pain.  Seems like one thing after another and no one is offering any relief! Thought the GB surgery was the answer.. not.. have a great day!!

[taylee]

I agree, I am trying to control it, but IT is controlling me.
I am really considering it though.
Lor was brave.
Talk later!

[Soccermom]

Hi Taylee, I would be scared too; especially when 2 doctors when those levels of expertise in Gastrology tell you they don't recommend the procedure.  From what your Doctor's and mine have said combined, you've convinced me to try and control it other ways before I do anything else.  On the other hand, Lor feels great(lucky girl) .. makes you wonder..

[taylee]

I too have low iron. Don't know why and no one has said much about it.
It is hard to believe that in NY , you can't find an ERCP specialist. How does one actually know if they are, and HOW really good they are?
I think I am in the best hands possible in this state, but I always worry.
I trust my regular gi doctor pretty much, and he sent me to this guy. Plus he is the Director of the National Pancreas foundation.
He along with my GI dr, aren't highly recommending the ERCP and especially cutting, so that makes me even more nervous.
Well, thanks for your reply.
Keep me posted.
taylee

[Soccermom]

Has anyone had success with a liver/gall bladder cleanse? how do you do it and does it really work? It might be worth a try to get some relief.

[taylee]

Hi,
I used to get relief from Antibiotics when I had the gallbladder intact, but since the surgery haven't been taken any.
I do get relief if I get up and move around too, sitting worsens the cramping pain. I don't have elevated LFT's and had the abnormal hida scan before surgery. (gallbladder was contracting at 95%, which I guess means hyperkinetic).
Now I just have the pain which worsens after every meal and drink.
I can't believe that Dr. said he wouldn't do ERCP anymore because of the risks.
Where does everyone get the nerve up to get it done? I think in my case it is just when you can't take the pain anymore, you decide anything would be better than living like this.
Taylee

[Beaker]

Like you, I cannot take codine,narcotics or alcohol.  I have been in the ER three times before I figured out the pain killers were doing it to me.  I had a colonoscopy done and they gave me demorel (? spelling) and it caused pancreatitis.  Needless to say I am very careful about what the doctor prescribes.  Unfortunately we all have to make a life style change and stick with it.  Well, you know what the alternative is.  Go to a new physician and explain that you have SOD and that there are times it is unbearable.  I would hope he/she would help you.  Sorry you have been in pain for so many years.  Let us know how you are doing.  Good Luck!

[Soccermom]

Along with SOD has anyone else had: High Cholesterol, Intermittant Elevated Liver Enzymes, Low Iron, Intermittant High Blood Pressure, shortness of breath, positive DISADA Scan.  Relief from Antibiotics.  Also, my pain/pressure does not always start in the middle, it can start in the flank area too.  Sometimes 45 minutes AFTER eating and other times with nothing to eat. Is there any truth to these liver or gall bladder flushes; these test results are scaring me I'm about ready to try anything non-invasive. I'm afraid it might be kidney related. Before my GB surgery my bloodwork was fine.

[Addie]

I have lived with Sphincture of Odie disfunction for 32 years.

No one could diagnose my pain until I had an ERCP with a gastro doc at Herman Hospital in Houston.(1986) I am reading up on all the posts here and have no idea if I had a simple ERCP or more extensice as i did not suffer any pancreatitis symptoms although I have heard that Odie attacks are just as severe.

What triggers my attacks is pain meds, i.e. codeine and all related drugs that have codeine in them, and bascially all narcotic pain meds.  I took 1/2 vicodan for a bad tooth one time and since i recognize these attacks (childbirth was easier) I just layed on the floor for 8 hours in severe pain in a fetal position. I avoid most meds for fear of these attacks.

These pains started almost immediatley after having my gallbladder removed in 1970.  I personally feel I had a bad surgeon.

In 1986, the ERCP doc told me that i could go to a place in Racine, Wisconsin to have this taken care of as these docs were the guru's in this type of surgery.  I never went as I was scard to death that I would get worse.

I still occasionally have low roar pain but nothing like what codeine and other pains meds can do to me.

They said the ERCP showed delayed empyting in the 45 minute film...indicating the Odie problem......

16 years have passed since that ERCP and the Odie diagnosis.

Talking recently to a gastro doc here in Houston, he said he has discontinued doing ERCP's because of the possibilty of pancreatitis.  

I guess I will keep doing what I have been doing.....nothing.

[Beaker]

I am sorry I was not clear.  When a doctor does a sphincterotomy he/she does an incision to that perticular duct.  That in turn relieves the spasm until it heals back.  During that healing process, you need to stay on a diet your physician has prescribed for you.  If you have Sphincter of Oddi Dysfunction, you will need to make some life style changes.  No meat other than fish or chicken.  No high fatty foods and no gravey.  It is rough at first but after a while you will get use to it.  The alternative is pain.  Also, try to avoid stress, it just makes matters worse.  I have went through 8 years of testing before I discovered I had SOD.  SOD is grouped in with IBS but SOD is much harder to diagnosis.  You need to find a physician who speciality is the biliary tree.  Get on the internet and type in biliary tree and doctor.  Hopefully you will find someone close to you.  Ask you family physician if he/she knows of anyone with those qualifications.  If not you want someone who is experienced doing sphincterotomies.  I hope this information is of help to you.

[Genevamom]

when you say the doctor clipped your bile duct does that mean that now it is gone??  I've got to learn more about this as I don't know what I'm facing yet.  As I mentioned above they could not get into my bile duct and I'm going to have it done again by another specialist.  No pancreatitis though!!

[Soccermom]

Search w/google for: http://www.indiana.ede/~engs/hints/oddi.html
It will bring you directly to a great article."How to control your Sphinster of Oddi or Bile Duct Spasms (post cholecystectomy,post-gallbladder,papillary stenosis or biliary dyskinesia syndrome)

I am seeing so many people in pain from this syndrom, (along w/myself) it's good to know I'm not alone.... keep me posted as to what you think.  Oh, FIND ANOTHER DOCTOR!!!. Does your pain lessen whenever you are on antibiotics? just wondering..

[Bailey1]

Can someone explain what Oddi Dysfunction is?  I had my gall bladder out 5 wks. ago & although my pain is better & many of the old symptoms are gone, I still have pain under my right rib at the lower part of the rib.  It is just an annoying constant pain, which feels like pressure a lot of the time & feels like it goes through to my back.  The doctor said, "sorry the surgery didn't fix all your pain, but we told you it was a 50/50 chance," & he walked out of the office.

[Soccermom]

Your right, thank you.  I ran into my primary care Dr. last night while out to dinner.  She came over and asked if her office had contacted me about my iron level (right away I could feel my hands start to shake) and advised me to start taking a mulivit. w/iron because my iron count was "a little low".  So I am looking at this as a good sign, she did not say "make an appointment to see me right away". I think I will try the lifestyle & diet changes, (my stress level is way too high, especially worrying about all of this)I am also going to try taking my Nexium every other day, finding a multivit. that does not upset my stomach... any ideas?  and see if that helps. It helps just expressing to someone else who can understand my fears; pains etc.  Sometimes I think my family thinks I am making this all up.

[Beaker]

Sorry I misunderstood, I thought you had an ER visit.  If you have pain that is a burn in the upper right quadrant, you may have a small stone in the duct.  If the pain is right in the middle and is a rolling burning pain right over top of the stomach, it very well could be pancreatitis.  If the doctor has not gotten back with you, it could be many reasons but I would not wait until he calls you.  You never know how busy his office or how efficent his staff may be.  Give them a call, who knows someone may have lost your records.  They did mine at St Elizabeth Hospital.  Which like you, I waited for my doctor to call me and I was in his office for my next visit and he thought I did not go for the test.  So as you see, leave nothing to chance.  Sometimes, I can see why so many folks take pot shots at the medical industry.  I just fire them and then spread the word.  If you trust your physician, copy and paste all of these questions/answers and take them to him.  Let him know you feel lousy and you do not understand why.  If by chance you are diagnosised with Sphincter of Oddi Dysfunction, you will have to make a life style change when it comes to food and stress.  Believe me, I have done some house cleaning when it comes to stress and I feel much better for it.  Everyone else is miffed but that is their problem.  LOL!!!!!!!  Let us know how you are doing.

[Soccermom]

Thank you for your comments. I Never went to the ER pain has not gotten that bad yet,nothing like Lor or you.  Most of the time it just feels like someone is squeezing my right side tightly (flank area)or alot of pain/pressure/burning in RUQ and middle of breastbone area radiating to the middle of the back. (was scared this was kidney related)but Like I said;DISADA with Ej.Fr. reproduced symptoms to a tee. It puzzles me that when I get up in the morning I have no pain at all.  It's after I'm up and eat or drink my coffee and take my Nexium.  Was taking Buspar for palpitations but I stopped because I thought it might be adding to the pain. Also, seems like when I move around ie;yardwork, cleaning or taking antibiotics that stops the pain. Why would that be? I trust my Dr.'s but don't understand why no one is calling me. By the way; my grandmother died from Cancer of the Pancreas(mom's mom). I also take Atarax daily (have since I wall 11) for hives.  I am wondering if I stop all the meds (except the Atarax) if I would be better off.  Maybe the GB surgery worked and the meds are causing the pain....

[Beaker]

Like you and the rest of us,I went throught the same routine.  You need to find a gastroenterologist who's speciality is the biliary tree.  Like Lor, I am pain free unless I eat something high in fat or any other meat than chicken or fish.  Usually a university hospital will know of a physician who specializes in the biliary tree.  I had mine done at the University of Cincinnati Hospital,by Doctor Steve Martin. No he is not the same.  Although, this fellow did give me back my sense of humor.  LOL!!!  Here is a little plan to follow until you find the doctor who can help you.  Stay away from meat other than chicken and fish,no gravey.  The meat should be baked only.  Eating out is very hard to control fat content.  You are welcome to all the fruit and vegetables you like.  The lesson I learned is that since I don't have meat with my meals, I eat more pasta and breads.  Carbohydrates put on weight and make you tired.  Boo Hoo!  I am not in pain!  Go have the ERCP it really isn't a big deal unless the doctor who does it hasn't a clue what he/she are doing.  The majority of the time you do not end up pancreatitis.  I had my done at 1:30pm and Dr. Martin did a sphincterotomy and place a stent into my pancreatic duct and clipped my bile duct.  At 6:00pm I walked to the parking garage on my own.  If you get pancreatitis, the pain is not worse then the time you went to the ER.  They sent you home didn't they?  What do you have to lose but the pain.  Let us know how you are doing and good luck on your search.

[Lor]

I guess you have to decide how much longer you want to live with pain. I did get pancreatitis from having the ERCP with menometry. I did not from the more simpler ERCP. I can tell you I'd do it all over again knowing what I know now. I lived through what I call hell with that pain. My pain was so severe. It caused me to breakout into an all over body sweat. There were times I couldn't walk and had to crawl into the bathroom to vomit. I took over the year and a half I lived with this 15 different medications. Nothing helped me. Even went to the ER once. I never did again because they really can't help you. There job is to stop the pain. They gave me Demerol. Didn't help at all.
I was worried about pancreatitis, but I was to the point where this was interfering with the quality of my life. I didn't want my kids to watch mego through this anymore. When you go in for the ERCP with menometry. The Dr informs you what to look for so you catch the pancreatitis early. Catching it early is the key. I went into the hospital the morning after my sphincterotomy and it was painful. It took a good week before I was really feeling good. I did go on a field trip the day after I got out of the hospital. I continued to have the sweats for a few more days. By a month there were no signs I had it. It is a scary thing. I don't know what would of happened if I didn't go through with it.