I’ve been quiet lately, as I haven’t been feeling great.
For years (11 to be exact) I’ve been having attacks of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.
The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these episodes.
A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.
Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.
I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.
So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these attacks and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).
3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.
The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained [here](http://www.ercp.ucla.edu/pages/info/biliary/sphincter-of-Oddi-dysfunction.html)). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.
The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.
[This page](http://www.joplink.net/prev/200111/04.html) thoroughly explains the problem and the treatment.
hi all, it’s my first time here. my mom has been suffering with abdominal pain for 20+ years. just recently she was told she had SOD. i was doing some online research and saw this trial listed. does anyone know anything about it?
There’s been a lot talk of the trial here over the years, but I don’t think anyone has reported joining it. Part of the reason is that one of the exclusions is having a prior ERCP which many folks here have had. I had my first ERCP 2 weeks ago, as a matter of fact.
I will say that my doctor was not keen on the trial. He said, “why would you join a study that’s trying to figure out how not to treat your condition?”
Hi Marce!
My Dr. in Mn, Dr. Marty Freeman, who is well known for his SOD knowledge, recommended Dr. Franklin Kasmin in NYC when I asked him for a referral in that area for someone else. I trust him alot and am comfortable passing on the recommendation he made. Good luck! Please let us know how you do.
Kris
Marce, I can also reccomend Dr. Jackson Kuan
718-358-3535 of Flushing, Queens, NY. Please tell him Judanna gave you the recco. He performed my first ERCP w/ major papilla sphincterotomy and is a professor here at 2 hospitals. He also did my colonoscopy, endoscopy and if I do need surgery on my anal sphincter as well, I will only trust him to do it. He is an American and very kind and the perfect gentleman. He explains everything because he is a professor !
Hi Judi,
Could you please tell me how you are doing since your ERCP? I’m leaving for SC on Monday to see a specialist there. I have bloodwork and an MRCP on Tuesday. Depending what he finds or don’t find, I don’t know what he looking for, then he will tell me it he’s going to do an ERCP. I had an ERCP 3 years ago and didn’t help at all. I hope you are doing good. I’ll be driving 12 hours to see this Dr, I hope it’s worth the drive.
Oh goodness, where do I begin? Long story, but the quick version is that I haven’t been doing all that great since the ERCP. I’ve been in a bit of pain and even spent one day in the ER. I’ve lost 13 lbs. since the beginning of the year, as eating anything more than toast, oatmeal or soup has been incredibly difficult and I’m getting bloated easily. Tonight for dinner I had 3/4 of a baked potato. That’s it.
The ERCP showed that I had a dilated duct and the surgical clips from my gallbladder surgery are a bit too close. So the sphincterotomy wasn’t enough to relieve my symptoms in itself. But it helped in confirming the SOD diagnosis once and for all. I’m Type II borderline Type III.
He thinks there’s a chance that I have gastroparesis, which he says sometimes goes with SOD. It’s an overall motility problem, I guess. So next week or so I’m having a gastric emptying study to either confirm or rule it out.
I sent you an email a couple of weeks ago, Robin. Did you get it?
I didn’t get your Email. I’m so sorry you are still sick. Are you on any medicines? I’ m in pain everyday, but not so sick I can’t eat. I don’t know if it’s my meds or not but some foods turned my stomach just thinking about eating them. I’ve had the gastric emptying study and it didn’t show any thing. My only ERCP wasn’t that bad, it was when I went on Elavil, then added Tramadol and Levsin. I can live like this, but would really like my old life back. What else can the Drs. do for you? I feel so bad for you.
Wow Robin! That is crazy that you have to drive 12 hours to get a good specialist! I hope you are doing this with plenty of rest stops or an overnight stay. I know sitting in a car for any amount of time really kills me. Good Luck to you and I will be thinking of you on Tuesday.
Karen
Did you recently start another web group ? I read on here that you were thinking about it and then might close this one down and I didn’t get any
posts from here for about 3 weeks and I just started getting them again a
few days ago which leads me to posting here again.
I’m sorry to hear that you’re still not feeling better and I’m wondering if you are taking enzymes ? Also, if you’re still having pain since your ercp have they checked your amylase or lipase since your procedure ?
I’m glad you didn’t close this site down and it also seems easier to respond to
other posts now. Did you do something different ?
I do hope you start feeling better soon and thank you for your blog ;;0)
Hi Nicole, Welcome to our group. All of us have SOD, and other underlining problems. What state are you guys from? Has your mom been referred to a gastro specialist? I have only dealt with this for 5 years, and it is no fun! Has your mother had her Gallbladder out as well?. Everyone here is very helpful, and we share not only our problems with each other, but we offer ideas that may help, information for Dr’s and different studies each of have found that may help. Sorry for all of the questions, not trying to be nosey, just getting a general background of what your mom and your family have went through. Take care, Michele/MN
I have to say it – Dr. Peter Cotton and the staff at MUSC in Charleston, SC are amazing! Went a few weeks ago to have my second ERCP (first one was for SOD two years ago – I relapsed). Test confirmed pancreatic sphincter dysfunction! Many, many thanks to MUSC for seeing me and for treating me! Anyone heading to SC, you are in good hands!
Thanks for letting me know about Dr. Cotton. I’m ready to get this over with. We leave Monday morning, spent the night in a Hotel by the Hopital and go to my appt. starting at 8 am. Julie, you said you went for your second ERCP. How long did you not have pain with the first one? The Drs. up here keep saying once you have an ERCP, the problem is fixed, yeah right. Thanks again, Robin
I had my first ERCP and sphincterotomy in July 2008. Spent 48 hours in recovery. Was followed by 6 great pain free months. Then relapsed with elevated lipase and pancreatitis on and off (and many other symptoms that went along with it, which I’m told has never been seen with SOD – I think it is all linked). Then starting in Nov. 2009 I had 4 spasm attacks (the kind that is too painful for words – hard to breathe and can only cry or scream), a 5-9 level of daily pain, more ER visits and many full days in bed. My GI doctor said that he believed that I had pancreatic sphincter dysfunction which is very rare. He said I was very ill and sent me to Dr. Cotton. I think I cried everyday in Dec. and even cried a few minutes before having my ERCP when talking with Dr. Cotton. I’ve never felt so desperate for answers. But Dr. Cotton was great, and sure enough the manometry confirmed the pressure. He performed the sphincterotomy. It was amazing! 24 hours of a long recovery and just like that I was like a new person. I could eat again, walk without getting winded, the color of my skin went back to normal, the bulge in upper abdomen went away and the best part of all – the pain went away! I’ve had some discomfort here and there but over all I can’t believe I have my life back. Now the true test is to see if it will last.
Having SOD is not easy. It’s something you have to battle – you just have to be ready to fight and never give up! There are always options! I really hope everything goes well for you, Robin. I truly believe you are in great hands! They are very honest, kind and great at what they do! Please know that you are not alone and I will be thinking of you! Please keep us posted.
Hi Julie!
When your dr. said you had pancreatic sphincter dysfunction, does that mean he addressed your pancreatic duct with a stent vs your common bile duct? I have pancreas divisum and will be having an ERCP on Tuesday where a stent will be put in my pancreatic duct. Your results are encouraging to me and I am hoping for the same! Thanks for sharing your story.
He preformed a pancreatic sphincterotomy and placed a stent in the main pancreatic duct. It will be removed in a month or fall out on it’s own before then. They do that to help reduce the risk of pancreatitis during the recovery hours. In my case, they didn’t want to perform the pancreatic sphincterotomy unless the pancreatic manometry came back abnormal because it can be very delicate and can actually make things worst. There is also an option of Botox which many doctors are now trying to help relax the opening but it only lasts for 3-6 months. I’m not sure if any of this would help your case but it is something that you can ask your doctor about. I’m not sure how pancreas divisum works but I read that sphincterotomy is used to help. Kris, have you had one performed already? When did they find that you had pancreas divisum? Do you also have SOD? What have they done for you so far? What kind of stent are you getting? What are your symptoms? I’ll keep you in my thoughts. I hope you can find some relief with this upcoming ERCP.
HI ALL,I READ EVERY COMMENT POSTED HERE, MY QUESTION IS HOW IS EVERYONE DOING AFTER THEIR SPHINCTEROMIES. THERE IS A LOT OF POSTS DEALING WITH PAIN ECT. I WOULD LIKE MORE INFO. ON HOW YOU ARE ALL DOING, AND ANY COMPLICATIONS AFTER SPHINCTEROMY. I HAVE HAD THIS PROCEEDURE DONE 4 TIMES BY AN EXPERIENCED SPECIALIST AND AM HAVING PAIN AGAIN DAILY. THE LAST ONE WAS IN OCTOBER 09 . HAVE A GOOD WEEKEND ALL.
GRACE
Hi Grace,
Have you ever had a stent put in after any of those sphincterotomies? If not, that might be the next step the dr might do. I don’t know if you recall that I posted on here awhile ago that after my first sphincterotomy I was pain free for 2 years..no problems. Then the same story after my second one..2 years again pain free. Third time they stented..dr used too big of stents and I had pain every day. Then 3 years later and a different dr just put in a smaller stent and is talking progressive stenting for a year. I know that I have pain every single day now. Plus I still get “flare ups” also. Some so severe I have ended up in the ER as have several others on here. Did you have periods of no pain after any of your sphincterotomies? Does your dr have a plan for you?
hi Grace -
This is Gracie, remember ? At least I think I talked to you last Fall but
even if not, it’s irrelevant anyway I had an ercp w/large cut (sphincterotomy)
to my common bile duct and a temporary stent placed in my pancreatic duct
that was removed two weeks later.
I was scared to death since my 1st and only other ercp started up acute
pancreatitis and nearly killed me but this one did not cause pancreatitis this
time
This ercp was performed one year ago by Dr. Freeman in MN and although I
have daily pain I consider it a huge success and I wish I had done it much
sooner. My diagnosis at that time was Papillary Stenosis/SOD I/Biliary I
and had my initial gi doctor known what he was doing, then my SO probably
wouldn’t be as stenosed as it is.
I adhere to a very strict diet although not as strict as it was a year ago at which time I could only eat up to 10 gm fat per day w/very low protein and sugar.
I am not diabetic nor have I ever had high blood sugars, at least to my knowledge,
other than the time I was hospitalized with my 1st ercp and had insulin
injections during that hospitalization.
I realize that most sphincterotomies are only a temporary “fix” and it seems
that eventually the SOD turns into chronic pancreatitis. I am due for another
EUS and am anxious to see what the findings will be in regard to chronic
pancreatitis.
Sorry about the length of this post, just thought I would give you a general
background of where I’ve been for the past year and where I am now.
I can’t remember who did your sphincterotomies ? Was it Peter Cotton ? Anyway,
best to you and I hope you’re feeling well today !!!
HI All again,
Thanks Nymphaea and Kris for the suggestions. I looked up Dr Kasmin an didn’t see him listed in the St. Vincent’s Hospital Pancreatic and Biliary Center. I’ll call on Monday to find out more info.
Question for all: Does your pain get worse after certain foods or narcotics?
Hi! i’m not sure where he practices out of. Dr. Freeman suggested a google search to get the info.
Foods such as raw vegetables and fruits, high fiber, like brown rice, and processed foods are a definite trigger for me. Hot dogs and sauces like alfredo sauce are also no-no’s! I don’t get worse after certain narcotics. I’ve read and heard that morphine can be a trigger, but haven’t had much experience with that.
Hi Kris
How are you feeling lately ? I’ve missed you from the SODP website although I haven’t been there much as of late. Are you still seeing Dr. Freeman and/or having yearly eus, mrcp’s w/wo secretin ?
Is it true that you “quit’ the SODP website ? Heck i didn’t even know that was
possible.
Are you posting here only or have you found other websites useful as well ?
I hope to see more of you as time marches on ! ! ! ! !
Hi Gracie!
It’s good to hear from you. I’m doing about the same. I had an EUS and a pancreatic function test that showed 2 of 9 criteria for CP and reconfirmed the divisum. I am still seeing Dr. Freeman. He will be doing an ERCP on Tuesday where he will put a stent into my pancreatic duct. I’m praying for good results!
I did quit the SODP group. Yes, you can elect to no longer belong. I hope you’re doing well!
Hey again -
Well at least you’re posting here and it really is good to read your posts again !
I don’t know if you ever “met” another member who used to post on SODP but
her name is Sam and you two remind me so much of each other, i.e. always cheerleading other members on when they’re having another “bad day”.
I have had a few questions I’ve wanted to ask of you and one is that I’m wondering if your prior ercp gave you any pain relief at all ? Also, when was your last EUS and has Dr. Freeman talked about doing another MRCP w/secretin ? How is your brother doing now ? I think that I remember you
saying that your brother also has pancreas divisum and he was relatively
pain free until the last few years ? Have you talked to Dr. Freeman if you do
end up getting a bona fide diagnosis of cp would he consider that your cp is of
an autoimmune type, particularly since your brother has these pancreas issues also ?
What was the pancreatic function test you had recently and didn’t you already have some other criteriae for cp prior to your most recent EUS ?
Sorry for so many questions but I guess you can tell I’ve been saving them up to ask of you when I “ran into you again .” Also, I hope I’m not repeating any
questions I’ve asked before – just can’t seem to retain anything anymore
I will keep you in my prayers for your upcoming procedure this Tuesday and please let me know how well you do also ?
Hi Kris
I forgot to address my last post to you so hopefully you will find it and
know the post that does not have a NAME to whom it was written,
well, it was written to YOU – Sorry for that ;(
Hi! No worries on the posts! Thanks for thinking of me. I really appreciate it. I had my 1st ERCP last June where MF put a stent in my cbd. I didn’t have any relief from it. This time, he’s going to put one in my pancreatic duct. He said it’s controversial to do so without evidence of CP, as currently defined by the medical community. He also said he’s been having some success in doing this, so because it’s him doing it, I’m willing to try it. I don’t think that he thinks it could be autoimmune pancreatitis because my brother also has divisum. He believes my issues are more related to that. David is doing better, but has had a few flare-ups over the last couple of years. He had a pretty severe one in Dec., but has been ok since. He is going to start seeing when he can switch providers on his insurance in April in the event he has another flare-up.
The pancreatic function test is a relatively new one that they are using at the U of M in conjunction with MRCP with secretin and EUS to diagnose CP. It was a different dr. than Freeman who did the tests in Dec. He told me that the U of M is the only place he knows of that are using all 3 of these tests to diagnose CP. I had my 1st EUS in Jan. of ‘09, which was when I was first diagnosed with divisum. I wasn’t told that I had any criteria for CP after that test, but I should ask Dr. Freeman to clarify if there was a change between this test and the one I had in Dec. I had an MRCP with secretin in June of ‘09. He didn’t suggest repeating it. I guess i’ll learn more after tomorrow and will post what I do learn!
I do remember Sam. Is she doing well? Thank you so much for your kind comments and for thinking of me. I hope that you are doing alright as well.
Take care!
Thanks all for the replys to my post. It seems like everyone still has problems after sphincterotomies .
Judi I am in the exact same place as you, some foods definately trigger I have days where I dont need any pain meds, then bam pain so bad.I live on rice and toast and all bland foods
I also have pain in my bowel with spasms and nausea when the pain and spasm in my ducts start, seems like the whole digestive system goes highwire. Do any of you have bad constipation where you are in a bad phase. Unfortunatley I have to take Percocet and nausea meds when I have bad pain or would just end up in the ER. I realise that that is going to be a way of life for me I am so sick and tired of this whole issue.
I do want to say that this sight has helped me tremendously as I sometimes think it is only me that has this problem then I check bad on the posts and see that some have the same issues and believe it or not that is a comfort as you start to think that something is wrong. So it seems like we all still have pain after sphincterotomies to some degree even when we have had the best specialist. Has anyone remained completely pain free?.
Thanks again everyone.
Hi Grace!
You’re certainly not alone! I’ve come to accept that this disease is a journey and is an unfortunate way of life. I’ve learned that even the best specialists don’t understand why in spite of the sphincterotomies, we still have pain. Fortunately, there is active research going on that will hopefully provide the answers and more importantly, the solutions!
I can sometimes have constipation right before a bad attack, but when I am in one, I have diarrhea. For me, this could have something to do with the fact that I have severe abdominal adhesions in addition to the SOD.My dr. believes they are somehow interrelated, but does not know how. I had surgery twice last year to have them removed, but it didn’t help. Unfortunately when you have them, they tend to come back, with a vengeance. I won’t be doing that surgery again unless I end up with a bowel obstruction that would require it.
Hang in there! Like I said, you are not alone! It really helps to have the support and understanding of what others go through. I’d go crazy without it!
Kris
Hi , Yes I did have a stent put in the last time, for 3 days then it passed. It was a long recovery longer than the last 3 times. It has been 5 months since I had it done and the pain is slowly returning.
It has not reached the unbearable stage yet but I do require Percocet at times. You know I sometimes feel that I can handle the pain but not the nausea it is a daily thing. I take Zofran for that and it is very affective.
My specialist is at Duke University Hospital. I think the next step my be open surgery, I am totally not ready for that yet.
I did have complete resoulution of my pain twice and it was wonderful for a few months I felt great, no nausea or pain then over time pain, and nausea just returned.
I do hope that more can be done to give a more permanent outcome for all with this problem as everyone seems to report that their symptomes returned. It would be good if some of the doctors that deal with this could read some of these posts and realise that more reasearch should be done to find a cure for SOD
We just keep on hoping, and trying to get on with our lives even though this takes a lot of the joy out of life.
Hope you all have a better pain free week.
Is there any medical specialist that is interested in finding a cure for this disorder? I have been suffering with this for years and I count everyday as a great day because I know what bad days are like. I feel for all of you who have this too..No one understands nor do they know the pain that you have on a daily basis. I have constant pain and nausa. Please keep chatting that maybe someone out there will listen and find a cure.
Can you outline the 9 criteria for CP the used with you? I suspect elevated enzymes and dilated ducts are the big ones but I can’t think of what the other 7 would be?
I have divisum as well but was told this was all clear on the basis of the manometry test and ercp. One doc did think that I may have subtle pancreatitus that doesn’t show up so easily.
I do have a very similar response to you with fiber which make me wonder.
Hi Brett -
I’m so sorry to read that you’re going through some particularly rough times – an angry pancreas is no fun AT ALL
I read that you are requesting the 9 criteria from Kris and since she is having an ercp today I figured that since I have this info anyway I would write it down
here. Also, this article lists 11 criteria rather than the 9 Dr. Freeman has told me about. These criteria are determined by the EUS, a minimally invasive test and are divided into two sets of features, 1) Parenchymal 2) Ductal and are as follows:
I ha the spinchterotomy doe in Nov. of 07 by Dr. Sherman at IU Med Center in Indy and a stent put in. I have been very fortunate to have been free of the intense pain since then. I am cautiously optimistic at this time, but know that if I ever have issues again, I will go back to him in a heart beat.
I had a bad attack last night and out of desperation started poking around. I’d read about palpating the GB but never paid much attention as poking that area never hurt .
I happened to be taking a deep breath at the time and bingo got immediate pain reproduction by pressing over the GB.
Now I check (and finally recall) the palpation test for GB pain requires a deep breath – and for the pain to go away when you exhale.
A lot of the symptoms didn’t point to GB – but now when I couple this to the high ejection fraction I’m almost confident enough to go ahead with removal. I’ll keep you guys updated.
If you have everything else normal it might be worth a try. Lie back take a very deep breath and hold it poke your fingers deep up and under the right rig cage at nipple level and work inward.
(When I’m not having an attack the pain is mild and hard to find – during an attack it’s immediate) As you breath out, maintain the pressure and the pain should resolve as you blow out.
The is because the GB rises and fall with inspiration and expiration. It’s an old outdated test now because it’s not specific to GB.
But if you’ve ruled out malignancy, pancreatitus etc it might help diagnosis. Follow up with a hida scan might show an abnormal EF as well and save an unnecessary sphincterotomy.
It;s too early to say much either way but it’s worth looking into.
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure. Investigators did not gather data on those patients who did not receive a cholecystectomy. Here some extracts:
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure.
The data are preliminary at this point, but the findings suggest that surgery may be warranted in patients with high ejection fraction, according to Dr. Holes-Lewis.
Dear Brett,
Regarding your inquiry about high gallbladder ejection fraction on HIDA (hepatobiliary) scan.
It is just becoming evident that a high gallbladder ejection fraction on HIDA (hepatobiliary) scan can be evidence of gallbladder dysfunction and can be associated with significant pain. I am a physician with expertise in Nuclear Medicine. My colleagues and I are in the process of submitting cases to the literature showing that we have removed gallbladders in patients with high gallbladder ejection fractions and found that their pain was relieved and their gallbladders showed chronic inflammation on microscopic examination.
High or abnormal gallbladder ejection fraction can cause a variety of symproms, some people just have nausea, others have pain, nausea, diarrhea & vomiting. Even if there are no symptoms those with high ejection fractions over 80% should have a surgical consult. High ejection fraction, or deeper contractions otherwise named, usually are the culprit for abdominal pain at the least. If you haven’t yet had a surgical consult then definately get his/her opinion ASAP. Almost all our pt’s with symptoms and this problem get immediate relief from gallbladder removal.
Good luck tomorrow! I really hope that your EUS test comes back normal. I know I was happy when they told me they didn’t find any masses or permanent damage to my pancreas. But I do hope you get the answers you are looking for. It sounds like Dr. Freeman is taking the correct steps. Keep us posted.
I wish symptom resolution had been my result! My ejection fraction rate was 89%, yet my problems became worse post GB surgery. Freeman’s explanation for this was that if SOD is the underlying cause, it can exacerbate the problem. Relieivng the pressure in my cbd didn’t do it, o let’s hope this am’s ERCP does it with the stent going into my pancreatic duct. Stay tuned!
Thanks for thinking of me, Julie! I don’t think I made it very clear in my post. I’m having an ERCP with a duct being put into my panceatic duct to treat the condition of pancreas divisum that I have.
HAve a good one!
Best of good fortune to you with your ercp and you already know you’re in good
hands with Dr. Freeman ;0) Please let us know how you do and I am assuming
he wants an overnight stay for you ?
Blessings & Prayers,
Me again
I wanted to send a private message to you and although I know I’ve sent one before I can’t recall your last name so thought it best to ask first. Again, I hope your procedure goes smoothly and you get some pain relief.
Just curious if anyone who has had a sphincterotomy takes Welchol to help with excess bile? It’s crazy, before having the sphincterotomies I wasn’t getting the bile I needed because it was just going back into the pancreas. Now I’m getting too much because the sphincter is always open. Just took one tonight for the first time and it really seemed to make a difference. Just wanted to see what everyone else is doing. Just curious.
I’m not sure you’ve been given the right explanations. If the SO was too tight or stenosed closed, bile would most likely back up the common bile duct into the gall bladder – if you still have it – causing one of the objective signs of SOD – dilated ducts – and into the liver itself if the GB has been removed.
I don’t know of any way it could back up into the pancreas.
Welchol actually lowers cholesterol by binding. It;s possible a sphincterotomy could allow more bile into the duodeneum if it had been closed before so you could now be getting more than you’re used to – though there’s no objective data of sphincterotomies causing this that I can find.
What can cause a problem with excessive bile is GB removal and welchol is used for this this purpose as it binds it – drugs like Questran, colestid – cholestramine are also used to lower bile production.
I had my gallbladder removed two years ago for acalculous cholecystitis. I continued to have relapsing pancreatitis. Four months later I had a main biliary sphincterotomy for severe ampullary stenosis and spasm with removal of choledochal sludge. Once again I relapsed with pancreatitis, elevated lipease and epigastrium and RUQ pain. Now I just had a pancreatic sphincterotomy with stent. The main biliary sphincter and pancreatic sphinter are connected but the pancreatic sphincter is slightly more inside the main biliary sphincter and it is a bit harder to treat. If one has pancreatic sphincter hypertension, it can cause bile back up into the pancreatic ducts which causes pancreasitis. Elevated lipease usually suggests pancreatic problems instead of liver. So yes, bile can back up in the pancreas and not just the liver. I didn’t know that either until my GI doctor explained it to me. Crazy, right?
No that actually make sense Julie, and ductal anatomy does vary. Typically the division between both ducts is such that the pancreatic duct is slightly behind.
Now I think about it if a stone in the CBD can cause pancreatitus then clearly pressure can back up into that duct as well.
Hi All, I would like to know if anyone has had a transduodenal Sphincteroplasty, after 4 sphincterectomies the pain has returned with a vengance, my GI doctor did say that this approach may be the next thing.
I would appreciate any comments.
‘Thanks
Transduodenal sphincteroplasty is the frequently offered next step following repeated reclosure after ES. I’ve lost the link but the John Hopkins website outlines it clearly with diagrams.
It’s not a fun procedure and you’re on and IV feed for up to a week post op. I hear it can be successful in such cases though.
My doc recommends trying progressive senting – form small to large after the first reclosed sphincterotomy.
I have a question for everyone. My docs say SOD does not always lead to chronic pancreatitis, but I have seen so many people who have SOD who end up with CP. Has anyone here heard anything about that? It is so frustrating since so little is published about this disease.
Well, I hate to say it, but everything I’ve read and been told is that CP is the ultimate end results. I’ve head confirmed pancreas divisum since Jan. of ‘09. I had an ERCP is July with a stent in my cbd, which didn’t help. I had an ERCP on Tuesday to have an stent put into my pancreatic duct. Dr. Freeman had a very hard time finding my pancreatic duct. He located it after 45 mins, but decided not to proceed with the stent placemenbt since he’d been inside for this loing. Evidently, the more probing and longer time they are in there creates an even higher risk for a pancreatic attacj, We will repeat the ERCP on the 25th of March. Again, my misfortunate understanding of SOD is that it wil lead to CP at some point. This is just my knowledge and interpretation of what I’ve read and discussed with my dr. I hope the same isn’t true for you!
Wow I’m so excited to see that I’m not the only one with chronic pain relating to SPOD. Recently had horrible experience at the ER. I have been dealing with SPOD for 7 years , 4 ercps pancreatitis and numerous er visits. Dr Freeman 2 years ago checked my pressures and did relieve some pressure from pancreatic duct. Still he can’t find why I have elevated pancreatic pressure. I feel I’m at a brick wall. In October went back to Dr and he told me he does’nt want to go back in unless necesary,but now he thinks my condition has evolved into chronic pancreatitis. The bad thing is my enzymes stay somewhat normal and my ct scans look fine. I’m on oxycodone and methadone 2 time a day just to work and take care of my family. Had a horrible 8-9 pain scale attack couldn’t take it talked to Dr. Freemans office they said go to the hospital. Of course they checked my lipase and did ct scan ,normal, and said the dr was in sugery all day. There wasn’t anything they could do for me since this was a chronic problem I need to see my primary dr. they deal with real emergencies. What do you do when they just sent you in a circle, but cry. I feel like there is no where to turn. I want to be productive but I feel since I’m a complicated case no one wants to deal with me. Has anyone else felt this way.
I am sorry you had a bad experience at the ER that happened to me during my one and only trip to the ER. I got the “we only treat acute conditions lecture” when my lab work and CT scan were normal. Since then I have had 3 ERCP’s with sphincterotomy, 2 with post ERCP pancreatitis and a diagnosis of pancreas divisum and still have the same pain. The ER would not treat someone suspecting a heart attack so badly.
Regarding SOD leading to CP I wouldn’t despair to much. I’ve had chronic pain for 28 years.
Enzymes, CT, MRCP and US all normal to date. I just had ERCP of both ducts (I have divisum) with extensive cannulation, manipulation and mannometry and still no sign of pancreatitus.
I notice that more than a few of the people on here take pain meds like Percocet or Oxy or Vicodin. I have read that opioid meds can cause the sphincter to spasm, causing more pain ? Or is it just morphine that does that. It seems like a catch 22 situation. I’m curious about this because I injured my back and have been prescribed Vicodin.
Hey Drex you are right the pain killing drugs get SODer’s in a catch 22 ! I belive in the fall of 2005 I got in this as well as the Winter of 2006. There were no factual diagnosis given to me until Aug. 2008 ! So, there I was at home experimenting w/ Vicodin, which was given to me for Intestitial Cystisis of the Bladder attacks which were equally as severe as SOD, only you can not walk. You could get stuck in a restaurant, curb or city bus and then you would just be stuck. So, then by accident one day in 2003, I was flaring with IC during moon time, and of course this is ripe time for a migraine and low and behold, it also made my migraine become more bearable. But what I didn’t know is that the same constriction Morphine products do to the SOD, it does to the Basilar Artery of the brain and then although I might be able to tolerate the migraine better, the vicodin would actually make the migraine LAST Longer ! So, curative definitely not and just like Vicodin can cause SOD, it can also cause Basilar type migraine. I gave up totally on ALL migraine products by December 2007 when my pancreatic juices backed up into my duodenum and cause and ulcer like feeling , where I could not eat or even drink water and what was found on Endoscopy ? A chemical like irritation, hey they weren’t sure but I was not ever going to take a chance like that again, so I decided no more Vicodin ever. Then when demerol, dilaudid and tramadol all gave me viscious Basilar migraines, with full stroke symptoms, it was obvious I could never have a morphine product again.
Brett, interestingly enough, I have been diagnosed with chronic & acute pancreatitis without having elevated enzymes ever, or a drinking habit, or necrosis. Just a swollen pancreatic head seen on an MRCP possibly regarded as an artifact d/t the fact it was only seen on 1 slice. When I asked, like you, how could it be so, I was told, there were 2 kinds of pancreatitis 1 w/ elevations in lab results and 1 w/0.
Typically the look for evidence of pancreatic inflammation on MRCP and US – and as Kris will tell you they have 9 criteria.
Neither are accurate enough IMHO to be conclusive. They tell you an MRCP will pick up divisum 80 – 90% but it sure missed mine. If they can miss an entire duct they can miss anything and I think the opposite holds true with artifacts. I’d want a repeat study showing the same thing before I concluded it was pancreatitus.
Regarding opiates the evidence they case sphincter spasm is unequivocal. But they also do a number on the gut in general. If you can tolerate opiates there may be other factors involved. Given that I did just fine with then until recently.
In one study I have they found no SO spasm with tramadol.
In a similar study they look at pressure with opiate administration with and without a gall bladder. It went up considerably in animals with the GB removed – but not with it – show the GB act as a pressure reservoir.
In my case Nymph I can’t see how divisum would case pancreatitus with no evidence at all such that it flares big time with alcohol fiber, SSRIs and opiates – but does just fine after ERCP, manometry and 2 hours of manipulation. It just doesn’t add up.
Yes Drex, you are right I had meant to give my monthly Cymbalta update : I have been using Cymbalta for nearly 3 ms. I am up to 50mg./night. The 1st week of increase, I need ursadiol and enzymes w/ my very lowfat diet, however week 2 & 3, I am in no pain and can eat a normal menu of anything w/ out any ursadiol or enzymes. My stats show that 2/3 of the time, it is like I don’t even have SOD ! However, should I need an antibiotic treatment, the Cymbalta is less effective in controlling the SOD.
We were snowed in today and I made chicken cultet sandwhich on sprouted grain bread w/ arugala, vine tomato and salsa for lunch & was able to enjoy a walk to our corner bar/ restaurant and have a glass of Australian white wine, jalapeno poppers sour cream and chicken w/ cheese tortellini soup. I made chocolate no fat brownies and added 1 cup of shredded coconut for a snack.
Before Cymbalta, none of this would have been possible. I’m 144lbs. / 5′7″ / and a size 4, so I’m a healthy weight and make sure I eat small amts of food every 3 hours, however lamb is the only red meat I eat.
I hear ursadiol is very expensive – but hopefully no longer mostly derived from bile farms in china where they extract it from bears? Though the practice still occurs.
I think it lowers cholesterol and dissolves gall stones if I recall correctly. Why do they have you on it Nymph?
No, Brett, thanks for bringing that out in the open again. It is totally synthetic in the states. We don’t allow its import here. I thought the same thing at first and panicked ! I grew up with bears and have stickers of them on my car ! There was no way I wanted one in a pen w/ my name on it ! My doc just suggested it on day, he said sometimes the ducts are narrow and not working right and little bile crystals get stuck and block or “sludge up the ducts” . All I know is I said sure I would try it, a couple weeks after my 1st sphincterotomy when I was still having a little trouble, and the next day I was fine. The doc said don’t be suprised if eventually you don’t need it. After 2 ms. I didnt need it for 2 more ms. & then suddenly, nothing worked. Then 1 year later it worked again, & now, I only need it the week when the Cymbalta is raised and I’m waiting for it to kick in. Cymbalta works on the brain & sustance P. I personally believes it relaxes smooth muscle and all sphincters are smooth muscle. They even say some people can’t begin a flow of urine & some men have ED from it. I think it also might relax vasculature, because to go from 8 Basilar type Migraines to 2 per month, must relax my constriction in my brain as well. And how do you explain my fibro improovement ? That has greatly calmed down and I just spoke to a well versed Ayurveda practitioner, who said that it was amazing I had results in 2 weeks ; most people don’t have positive reactions till 8 ms ! Maybe that’s when my dosage will level out ?
In addition to treating anxiety and depression, Cymbalta also treats the pain that can sometimes be involved in depression. It is also used to treat diabetic neuropathy and there seem to be alot of trials underway to treat alot of pain related disorders including fibromyalgia. I ‘m glad it’s working for you. I don’t know why or how it works, but who cares as long as it works, right? I tried to take it a few years ago for anxiety/depression, but it made the top of head feel like someone was stabbing it after only 2 days, and I did not sleep either. At least I think it was cymbalta. Maybe I’ll try it again.
omg! i went in August of 2009, and the dr had to do another cut on me during the ercp, i started hurting so i had to spend the night in the hospital. recovered from that, which was my 2nd time to have them to cut it, and now, out of the blue, i was walking out of a store, and here it came!! mine starts with a squeezing in my sternum area, then i start getting dizzy, almost like i’m fixin to pass out, i got in my vehicle, and the pain just got worse, squeezing tighter & tighter…i thought i was either going to die, or just pass out, its hard to breath, and i can only moan or yell, idk… then almost throw up..thinking what the heck am i going to do?? i cant drive, should i call 911? finally, it eases up, and i head home….omg, are they starting AGAIN??? the only thing they have ever given me is nitro tablets to put under my tongue, and i really dont know which is worse, the headache you get from taking those, or the squeezing pain… im scared and frustrated!!
Janice,
Are you describing a “bloating” feeling ? I have experienced a horrible bloating,
squeezing feeling up & under my breasts (ribcage) on 3 separate occasions when
I was assaulted by acute pancreatitis requiring hospitalization. This is the
one thing that scares the heck out of me, not even the jabbing pain freaks me out
like the bloating/squeezing symptom does ;0(
well, i dont know. after my last procedure, where you are supposed to just wake up and go home, the nurses got me up, i told them i was hurting, they didnt care. put me in a wheel chair, took me to the room where my husband was, while we waited on the dr to stop by and give us the ok to go home, by the time he arrived, i was doubled in a knot in pain, he ask if i was hurting in my back under my shoulder blade, i said yes, he said he was afraid i had pancreatitus, so i had to spend the night. the nurse told me my ducts were very, very tiny, that the dr had a hard time getting the tube or whatever it is they use during the ercp through….i dont understand..i mean, how many times can they cut the duct? is it possible there is more than one to cut? if i have another attack, i will have to call them. i know what they will say, i will be sent to the lab to have blood drawn and think they will check to see if some enzyme is high. and if i have another attack, go to the er….oh me…
I can’t take the ssri’s, they tear me up. I take remeron which also helps me sleep and is in kind of a category by itself when it comes to anti depressants. When I get my pain, it is more in my back near my right shoulder blade, rather than in the front.
I have diagnosed SOD I/PAPILLARY STENOSIS/BILIARY I DISEASE. THIS WAS
DIAGNOSED BY DR. MARTY FREEMAN OF MINNEAPOLIS, MINNESOTA VIA
ERCP.
ALL OF MY PAIN IS LOCATED IN MY BACK AND IN MY RIGHT SHOULDER BLADE
REGION AND BECAME WORSE FOLLOWING GALLBLADDER SURGERY – A
CONDITION THAT IS CALLED POST-CHOLE SYNDROME.
IT IS NOT UNUSUAL TO HAVE THIS PAIN LOCATED HERE AND IN FACT IS
VERY COMMON.
THE REASON I AM TYPING IN ALL CAP’S IS THAT I ALMOST LOST MY MIND WHEN BRETT SAID THAT HE HAS NEVER HEARD OF SO PAIN BEING LOCATED THERE.
ALSO I CAN GIVE YOU THE NAME OF A COUPLE OF WEBSITES WHERE YOU WILL READ LOTSA POSTS FROM MEMBERS WHO EXPERIENCE PAIN THERE. I’M SURE THAT JUDI WILL NOT MIND BECAUSE SHE HAS MENTIONED THIS HERE BEFORE.
Christine. What I meant was I’ve never seen it written that SO pain refers to the shoulder blade. You’ll see it written for GB pain all the time as a classic symptom but I have no articles that mention this for the SO.
I don’t like to speculate here as I have no experience or education in this area and I don’t want to mislead anybody. I try to report only what I read in well researched articles.
But since SO blockage should mimic the same effect as GB blockage the pain should be the same. I just have never seen it reported.
Pain in the right shoulder blade is typically related to the biliary system – and it’s classic for the gall bladder. I’ve heard nothing of SO pain being here though.
Luckily I don’t have breasts for the pain to get under.
I used to be fine on SSRIs then out of the blue they did the same thing – worse attacks ever within 12 hours.
Is you GB still there Drex?
Janice you mention small ducts – do you mean CBD and pancreatic duct or do you have pancreas divisum?
Brett, what else other than SO or GB would fall under biliary system disorder? I had thought that such pain could be related to SO. I had GB out in May and still get that pain (along with URQ in front that we all thought was from GB).
Thanks,
Michele
I’m not Brett but I do know totally of what you speak in regard to the continuing pain you’re getting in your front (or back) upper right quadrant (even after gallbladder removal) and it’s called post-cholecystectomy syndrome. Just google it and you will unfortunately find it everywhere ;0(
I’m sorry but I can’t help you with biliary system disorders other than what I have
experienced/been diagnosed but I know there are many.
Brett,
I had my GB out three years ago, and it’s been fun, fun, fun , ever since. (sarcasm). I have never had any negative test results : liver function tests O.K., good pancreatic ennzymes, no dilation of the duct on MRCP, no divisum. Just pain sometimes burning. Any “attacks” I have had have always been in the middle of the night. they wake me up with a nasty URQ pain followed by severe nausea, sweating, etc.. then I don’t feel well for several days afterward. this has only happened three times.
The biliary system entails the GB and the drainage ducts including the SO. The technical definition is – Of or relating to bile, the bile ducts, or the gallbladder.
I’m told SO pain mimics GB pain pretty closely but it’s hard to get specifics and doctors frequently contradict themselves. One source says the pain is not after meals another says it is – even the Rome criteria is being debated.
10 to 20% of people develop SOD as a direct result of having the GB removed. It’s believed to result from disturbance to the nervous supply of the SO. Some doctors don’t believe you can develop SOD without GB removal.
I’m trying to decide now whether to have my GB removed or not – you guys experience isn’t encouraging.
Brett,
Negative on the ulcers. I have been scoped so much I could probably do it myself at this point. The only odd thing that showed up on any of my scans is a hemangioma on my liver, which I am told is nothing of importance. The pain, sometimes its pain some times it’s more of a discomfort, didn’t really start in earnest until about a year or so after I had my gallbladder out. I’m not in your situation, so I don’t know what you’re going through, but I have asked several times if I could have a gallbladder transplant, get a new one put in. because not having one has not been fun. Unless someone can definitely point to your GB and say ” Yep, that’s the problem” I wouldn’t let them touch me. Once you start having surgeries and they start removing body parts, you’re never the same.
I said this before to you Drex, as well as another that the pain you are describing could be postcholecystectomy syndrome which occurs I think in approximately 20% of people who have their gallbladder removed.
Please do me a favor and respond to this post that you did at least read this. I’m starting to feel either invisible or ignored and if you’re not responding just because
you don’t think I know what I’m talking about, well then at least tell me that.
I’d agree with Cristie here. I just assumed you had automatically been tested for SOD if you had pain post GB removal. It should be an automatic conclusion given it’s prevalence.
I looked at the John Hopkins website and they do report one location for SOD pain being in the shoulder blade. I expected it to be the same but this is the first written confirmation I’ve found. And I was considering writing it in all capitals.
As a few folks here have said before – but bears repeating, the surgery cuts the nerve supply to the SO and is a MAJOR cause of SOD. Transplanting the GB would not solve the problem (and no doc in his right mind would even consider it, given you need to be on anti rejection meds for the rest of your life with immunosuppression. ) – but cutting the SO might.
There is good research to show that GB removal works in a lot of cases – 80%. There’s no way to tell if it will or not in acalculous GB disease and HIDA scans are almost worthless at predicting surgical success. You throw the dice and cross your fingers. Sorry you lucked out but I think you can be sure it’s SOD now with high
confidence – especially now you can rule out more common causes like ulcers.
I’d recommend a trial of sub lingual nitrate next time you get an attack. If it works in 15 minutes I don’t think you need to look much further.
I’m so glad to find this site. I started having major problems in ‘08 & my gastro dr. insisted it was my GB so I had it removed in Dec. ‘08. Then I had REAL problems and they thought it was pancreatic cancer for awhile. Luckily it’s not. I had a Sphincterotomy in Dec. ‘09 by Dr. Sherman @ IU and had relief for about 2 weeks. All my bloodwork, CT’s, MRI’s, PET SCAN, MRCP’S, etc. show nothing but the ERCP that Dr. Sherman did finally showed a major problem & he also placed a stent. I’ve started taking my pancreatic enzymes again & that seems to help some because if I don’t take it, I have immediate flare-ups & have severe pain. I don’t know what to do though because I think it’s CP, but no doctor agrees. Help!?!?
Hi Berta,
Where is your pain? What are your symptoms since having the sphincterotomy? You said you are taking pancreatic enzymes and they help. Makes me think that maybe you should get your pancreatic ducts looked at. Have you had a pancreatic monometry? You may have a hypertensive pancreatic sphincter. It’s another form of SOD and not very common but I have it. Also, I would suggest getting an Endoscopic Ultrasound (EUS) of the pancreas. It gets close to the pancreas and ducts to see if there is any damage or masses. I would suggest seeing Dr. Cotton in SC. They have an amazing team there and they listen. I believe your pain is real and I hope you find someone who will help you find some answers. Best of luck! Stay strong!
I should also add that I have Pernicious Anemia, pre-cancerous cells of the throat & major acid reflux since the GB was removed. I think that this is all related to the SOD and possible CP. Any ideas?
Cristie,
My apologies . I was not intentionally ignoring your posts as I was not aware they were all directed at me. I am fully aware of post-cholesytectomy syndrome, as I have been dealing with problems post surgery for over 3 years and have “googled” it to death. But thanks for the information anyway. For me, my pain and symptoms have changed over time and from what I can gather post-chole syndrome could in fact be SOD. Although, I would have to say I if I do have it, it would have to be type III, which means no help for me. Brett, you mentioned sublingual nitrate, I was wondering if taking L-Arginine daily would be of any help, as it increases Nitric Oxide in the bloodstream ? By the way, the gallbladder transplant was a joke.
Thanx Drex -
I really was starting to feel invisible when all I was trying to do was inform you of post-chole syndrome that I now understand you already know plenty enough
about ;(
I’m sorry for all you’ve been through but I do have faith there are treatments, cures just around the corner and waiting for somebody (s) who is currently researching and/or doing these procedures to discover.
Thank you again for acknowledging my post, I really appreciate that you did.
The Drs. at John’s Hopkins would not do an ERCP on me. Did lots of test and said they couldn’t find anything. One GI said I was stressed and the other said I needed to start walking, I would feel better. I have had pain for 4 years this month. Last month I made an appoint with a specialist at Charleston, SC, thanks to one of this support group’s member. Dr. Cotton did an ERCP and could not even find my duct going to my pancreas. He said my pancreas were not functioning and that’s why I have pain. He sent in the surgeon and he want’s to do a Total Pancreatecomy with Autologous Islet Cell Transplant. Wow, I go from one Dr. who says walk, I’ll be fine to the next who says this. Thank you God for leading me to someone who would help me find out what the problem is. These Drs. at John’s Hopkins has no idea what they have done to my mind. I started to believe I was crazy, trying to put the pain out of my head. But now I Do feel better knowing what is going on inside my body. The Dr. can’t believe I’ve only been on the meds I’ve been on and not some heavy stuff (which they gave me there, but not taking it). The surgeon thinks my pancreas are like this because either from the ERCP and Sphinctomy I had many years ago at UMMC or I was born like it. I go back in April to SC. I am not possitive I will have this surgery but I have had lots of post op test done already. I live about 600 miles away for SC, but it’s worth being treated like a real person.
Wow Robin. What a story. I feel so bad that those drs. blew you off the way they did at John Hopkins. Walk and you’ll feel better? right. Unfortunately, we’ve all been treated this way to some degree on this journey. Did the do a pancreatic function test while you were there? The TP/AIT surgery is a big surgery. There is a new support group called Pancreatitis_A Ray of Hope on yahoo. There is alot of good information. Tracey, one of the members had this surgery a couple of years ago in MN. If you join, I’m sure she’ll be happy to share her experience with you.I’m so sorry that you’re going through all of this, but am also happy that you found Dr. Cotton and his team. I’ve heard alot of good things about him. Take care and let us know what you decide to do.
Kris
Robin,
I am glad they are treating you so well in SC. I have gotten very different advice from some of the GI doctors that I have seen. It is incredibly difficult to know what to do. Best Wishes,
Hi again,
My symptoms before & after the Sphincterotomy are extreme bloating, gas, constipation, diarrhea, nausea, gastritis, pain on the left & right upper quadrants of stomach, sides & back, extreme sweating with the pain and intense itching in my back when I eat. I have also started having excrutiating acid reflux that hurts even into my ears since I had the GB surgery. Before the Sphincterotomy I would have this intense stomach pain as well about 6 minutes after my stomach realized that I had food in it. That pain is at least gone but the rest has come back with a vengeance. I have lost 33 lbs since ‘08 when I started having all of these problems. The only thing that alleviates my problems are not eating or drinking anything but then the acid reflux gets severe! I’ve had ERCP, EUS, MRCP, HIDA Scan, CT Scans, MRI’s, Ultrasounds, X-Rays & blood work done like crazy. Only when the ERCP was done did Dr. Sherman realize that I had major blockage and needed the stent and the ducts to be cut. I’m starting to lose my mind since everyone wants me to believe it’s all in my head. My current dr. said he doesn’t understand why the enzymes are working other than maybe it’s psychosimatic (sp?) or in other words that I’ve convinced myself that I need the enzymes. Please help! Any ideas? Also, I’m in Las Vegas and the quality of care here is poor but I was sent to UCLA, I went to Mayo Clinic on my own in Phoenix and they referred me to Dr. Sherman @ Indiana University. He’s supposed to be the leading researcher on Sphincter of Oodi. He thought that my pancreas looked normal other than striations that he didn’t know what was causing them. He’s hopeful that the Sphincterotomy would be a permanent solution.
Boy you’ve been through so much and continue to go through it ! For me 2006
and 2007 were such nightmares of frustration and pain except I at least was
fortunate enough it could be documented that my common bile duct was dilated and I then developed post-ERCP acute pancreatitis that whacked out my pancreatic and liver enzymes. So at least everybody was on the same page as far as no question I had developed pancreatitis – just nobody knew why
I don’t understand that if Dr. Sherman saw blockage why he or anyone else would think it’s all in your head ? I also have talked to others who have seen Dr. Sherman
and he is known to be a very good GI doctor so I would think that records of your ERCP report would inform your local doctor of your major blockage ?
Unfortunately it’s not surprising at all that your local doctor doesn’t understand
your need for enzymes because most don’t, at least none so far as other members of other websites I’ve talked to. I cannot even tell you the number of people I know who have been helped by enzymes (including me) and any doctor who tells you that you are psychosomatic because you think they are helping needs to be
fired ! ! ! ! ! What does Dr. Sherman have to say about the enzymes ? Did he prescribe them ? Do you have copies of all your medical records including your
ERCP?
Okay and since you’re asking, I would first of all get all medical records if you haven’t already and if Dr. Sherman thinks he “fixed” you then I would take those records and get a 2nd opinion with another well known GI such as Dr. Marty
Freeman (MN) who is my GI doc and who does lotsa ERCP’s, the EUS, secretin MRCP’s, etc.
Lastly, insofar as your pancreas looking normal, unfortunately our technology
is such that although it has come a long way, it is still very much in its infancy
as far as the pancreas is concerned in that it takes quite a lot of damage for it to show up, even with ERCP, EUS or secretin MRCP ;( Also, there is much dispute
on the # criteria required to determine that it is indeed pancreatitis. Still another
point is that you could have an ERCP or EUS today and have it look normal, then
have another 6 mos or 1 yr from now and have it show lotsa damage and I’ve seen this happen in at least 2 cases in the last year.
Please don’t hesitate to keep asking questions and I can recommend another pancreatitis/sod website that could prove very helpful also: Pancreatitis_ARayofHope Remember Knowledge is Power ! ! ! ! ! !
Thanks for much for the insight!!! I will look him up. Wow, Tucson is much closer to home than Indianapolis. I wish I would have known about him. Thanks again!!
Hope it helps. Hope he helps! I have heard good things about him. They also have a large pancreas center there which could help you with the pancreas thing. If you go, let us know what you think of him!
I am so relieved to find others out there dealing with the same symptions and feelings that I have had. In October of 2008 I was buckled over in pain. Went to several appointments and testings. Dr said I had gall stones and needed to have my gallbladder removed. That was removed on November 7, 2007. Dr said you will feel better in 2-14 days. 30 day, then 60 days passed. I wasn’t feeling better but getting worse. Went back to the Dr who took my gallbladder out. He said it is just like having a baby, everyone is different. I didn’t believe him. So I went for a 2nd opinion. Dr. Lee in Lincoln, NE thought this it might have something to do with my sphincter of oddi. He did more blood work and determined that it was possibility. He doesn’t do ERCP here in Nebraska but he referred me to a Dr in St. Louis, MO. So March 2008 my husband and I drove down to Midwest Endocsopy in St. We meet with Dr. Alapardy (not sure if I spelled that right) on Monday. Dr’s felt I was a good cannidate for for the ERCP to see what was going on inside of me. In the procedure they determined that my bile ducts were closed up, so they cut them, put in stents. Procedure went well. Two days later the stents were taken out. They had me heavily medicated. My husband said I was an awful patient. So on Friday we headed home. I was given a Fat restriction diet to follow. 20 grams per day and 7 maxium per meal. That was hard to get used to but I tried very hard. First few months, I didn’t feel the greated, but at about 6 months, felt better than I had for a very long time. Then in January of 2009 I started to have pain again. I was devastated! It couldn’t be happening again. I had followed what they told me to do. I had the blood work ran again a couple of times. It all said the same thing. It was definately happening again. This time much more painful. So we headed to St Louis again the end of March 2009. I missed my son’s last two birthdays because I have been in St. Louis in the hospital. I didn’t even meet with the Dr this time, they just scheduled the procedure again. I felt like I was in a nightmare. I was terrified. I felt like they would find something worse this time. But it was the same. Bile Ducts closed. They put stents in and took them out days later, then we were on our way home. This time around hasn’t been the best. I have been exhausted all of the time, I get other illnesses fairly easily. I have followed the diet restrictions once again. So I am coming up on my anniversary for my 2nd procedure and I have started to have pain again. I am terrified and don’t want to do this again. My dr has ordered the blood work but I can’t get myself to go and get it done. I just keep hoping it is a false alarm this time. Thank you so much for your stories it has definately helped me.
It’s very interesting reading all of your stories, seem like once you get this, it never goes away. I’m interested, what do you all do when you are out & about and one of these “attacks” hit? Me personally, I try to find a place to hide. Once I was in the mall with my son, and I was so dizzy, feeling like I was going to pass out from the pain, I went into a dressing room, and was down on my knees, hanging over a trash can. The attack I had in August, a week before they did my last ercp, I had to go to the ER, I was laying on the bed, they had given me something for pain, BAM! I thought I was going to die, really, I started calling for the nurse, I was hanging over the tall trash can beside my bed..in horrible pain….I hate the attacks, they hurt so bad, and I have to get away from any people, guess it embarrases me… just wondering what ya’ll do.
Janice, I have to agree with you that it is very embarrasing and something people just don’t understand because it is so rare. I get a lot of people who look at me like I am making this up. Like this is something that I created for attention. I am the opposite, I wish it would have never happened to me and that it would just go away. Unfortunately, I don’t think I will ever be pain free.
I've been blogging here since January 2003, on whatever topics are in front of me at the moment.
Lately, I've been focused on nonprofit technology. I am Vice President of Operations of C3: Colorectal Cancer Coalition, a nonprofit organization I helped start in 2005.
I live in Southern New Jersey. I've been married to Eric Sohn for 15 years, and I'm Mom to two great girls.
When I'm not online or chasing after kids or our new puppy, you can probably find me knitting.
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hi all, it’s my first time here. my mom has been suffering with abdominal pain for 20+ years. just recently she was told she had SOD. i was doing some online research and saw this trial listed. does anyone know anything about it?
Hi Nicole…welcome to the site.
There’s been a lot talk of the trial here over the years, but I don’t think anyone has reported joining it. Part of the reason is that one of the exclusions is having a prior ERCP which many folks here have had. I had my first ERCP 2 weeks ago, as a matter of fact.
I will say that my doctor was not keen on the trial. He said, “why would you join a study that’s trying to figure out how not to treat your condition?”
HI Judi,
Can anyone recommend a great DR in NYC area who understands SOD
Best,
Marce
Hi Marce!
My Dr. in Mn, Dr. Marty Freeman, who is well known for his SOD knowledge, recommended Dr. Franklin Kasmin in NYC when I asked him for a referral in that area for someone else. I trust him alot and am comfortable passing on the recommendation he made. Good luck! Please let us know how you do.
Kris
Marce, I can also reccomend Dr. Jackson Kuan
718-358-3535 of Flushing, Queens, NY. Please tell him Judanna gave you the recco. He performed my first ERCP w/ major papilla sphincterotomy and is a professor here at 2 hospitals. He also did my colonoscopy, endoscopy and if I do need surgery on my anal sphincter as well, I will only trust him to do it. He is an American and very kind and the perfect gentleman. He explains everything because he is a professor !
Hi Judi,
Could you please tell me how you are doing since your ERCP? I’m leaving for SC on Monday to see a specialist there. I have bloodwork and an MRCP on Tuesday. Depending what he finds or don’t find, I don’t know what he looking for, then he will tell me it he’s going to do an ERCP. I had an ERCP 3 years ago and didn’t help at all. I hope you are doing good. I’ll be driving 12 hours to see this Dr, I hope it’s worth the drive.
Oh goodness, where do I begin? Long story, but the quick version is that I haven’t been doing all that great since the ERCP. I’ve been in a bit of pain and even spent one day in the ER. I’ve lost 13 lbs. since the beginning of the year, as eating anything more than toast, oatmeal or soup has been incredibly difficult and I’m getting bloated easily. Tonight for dinner I had 3/4 of a baked potato. That’s it.
The ERCP showed that I had a dilated duct and the surgical clips from my gallbladder surgery are a bit too close. So the sphincterotomy wasn’t enough to relieve my symptoms in itself. But it helped in confirming the SOD diagnosis once and for all. I’m Type II borderline Type III.
He thinks there’s a chance that I have gastroparesis, which he says sometimes goes with SOD. It’s an overall motility problem, I guess. So next week or so I’m having a gastric emptying study to either confirm or rule it out.
I sent you an email a couple of weeks ago, Robin. Did you get it?
I didn’t get your Email. I’m so sorry you are still sick. Are you on any medicines? I’ m in pain everyday, but not so sick I can’t eat. I don’t know if it’s my meds or not but some foods turned my stomach just thinking about eating them. I’ve had the gastric emptying study and it didn’t show any thing. My only ERCP wasn’t that bad, it was when I went on Elavil, then added Tramadol and Levsin. I can live like this, but would really like my old life back. What else can the Drs. do for you? I feel so bad for you.
Wow Robin! That is crazy that you have to drive 12 hours to get a good specialist! I hope you are doing this with plenty of rest stops or an overnight stay. I know sitting in a car for any amount of time really kills me. Good Luck to you and I will be thinking of you on Tuesday.
Karen
Hi Judi -
Did you recently start another web group ? I read on here that you were thinking about it and then might close this one down and I didn’t get any
posts from here for about 3 weeks and I just started getting them again a
few days ago which leads me to posting here again.
I’m sorry to hear that you’re still not feeling better and I’m wondering if you are taking enzymes ? Also, if you’re still having pain since your ercp have they checked your amylase or lipase since your procedure ?
I’m glad you didn’t close this site down and it also seems easier to respond to
other posts now. Did you do something different ?
I do hope you start feeling better soon and thank you for your blog ;;0)
Hi Nicole, Welcome to our group. All of us have SOD, and other underlining problems. What state are you guys from? Has your mom been referred to a gastro specialist? I have only dealt with this for 5 years, and it is no fun! Has your mother had her Gallbladder out as well?. Everyone here is very helpful, and we share not only our problems with each other, but we offer ideas that may help, information for Dr’s and different studies each of have found that may help. Sorry for all of the questions, not trying to be nosey, just getting a general background of what your mom and your family have went through. Take care, Michele/MN
I have to say it – Dr. Peter Cotton and the staff at MUSC in Charleston, SC are amazing! Went a few weeks ago to have my second ERCP (first one was for SOD two years ago – I relapsed). Test confirmed pancreatic sphincter dysfunction! Many, many thanks to MUSC for seeing me and for treating me! Anyone heading to SC, you are in good hands!
Thanks for letting me know about Dr. Cotton. I’m ready to get this over with. We leave Monday morning, spent the night in a Hotel by the Hopital and go to my appt. starting at 8 am. Julie, you said you went for your second ERCP. How long did you not have pain with the first one? The Drs. up here keep saying once you have an ERCP, the problem is fixed, yeah right. Thanks again, Robin
Hi Robin,
I had my first ERCP and sphincterotomy in July 2008. Spent 48 hours in recovery. Was followed by 6 great pain free months. Then relapsed with elevated lipase and pancreatitis on and off (and many other symptoms that went along with it, which I’m told has never been seen with SOD – I think it is all linked). Then starting in Nov. 2009 I had 4 spasm attacks (the kind that is too painful for words – hard to breathe and can only cry or scream), a 5-9 level of daily pain, more ER visits and many full days in bed. My GI doctor said that he believed that I had pancreatic sphincter dysfunction which is very rare. He said I was very ill and sent me to Dr. Cotton. I think I cried everyday in Dec. and even cried a few minutes before having my ERCP when talking with Dr. Cotton. I’ve never felt so desperate for answers. But Dr. Cotton was great, and sure enough the manometry confirmed the pressure. He performed the sphincterotomy. It was amazing! 24 hours of a long recovery and just like that I was like a new person. I could eat again, walk without getting winded, the color of my skin went back to normal, the bulge in upper abdomen went away and the best part of all – the pain went away! I’ve had some discomfort here and there but over all I can’t believe I have my life back. Now the true test is to see if it will last.
Having SOD is not easy. It’s something you have to battle – you just have to be ready to fight and never give up! There are always options! I really hope everything goes well for you, Robin. I truly believe you are in great hands! They are very honest, kind and great at what they do! Please know that you are not alone and I will be thinking of you! Please keep us posted.
Hi Julie!
When your dr. said you had pancreatic sphincter dysfunction, does that mean he addressed your pancreatic duct with a stent vs your common bile duct? I have pancreas divisum and will be having an ERCP on Tuesday where a stent will be put in my pancreatic duct. Your results are encouraging to me and I am hoping for the same! Thanks for sharing your story.
Kris
Hi Kris.
He preformed a pancreatic sphincterotomy and placed a stent in the main pancreatic duct. It will be removed in a month or fall out on it’s own before then. They do that to help reduce the risk of pancreatitis during the recovery hours. In my case, they didn’t want to perform the pancreatic sphincterotomy unless the pancreatic manometry came back abnormal because it can be very delicate and can actually make things worst. There is also an option of Botox which many doctors are now trying to help relax the opening but it only lasts for 3-6 months. I’m not sure if any of this would help your case but it is something that you can ask your doctor about. I’m not sure how pancreas divisum works but I read that sphincterotomy is used to help. Kris, have you had one performed already? When did they find that you had pancreas divisum? Do you also have SOD? What have they done for you so far? What kind of stent are you getting? What are your symptoms? I’ll keep you in my thoughts. I hope you can find some relief with this upcoming ERCP.
Robin,
How are you doing?
HI ALL,I READ EVERY COMMENT POSTED HERE, MY QUESTION IS HOW IS EVERYONE DOING AFTER THEIR SPHINCTEROMIES. THERE IS A LOT OF POSTS DEALING WITH PAIN ECT. I WOULD LIKE MORE INFO. ON HOW YOU ARE ALL DOING, AND ANY COMPLICATIONS AFTER SPHINCTEROMY. I HAVE HAD THIS PROCEEDURE DONE 4 TIMES BY AN EXPERIENCED SPECIALIST AND AM HAVING PAIN AGAIN DAILY. THE LAST ONE WAS IN OCTOBER 09 . HAVE A GOOD WEEKEND ALL.
GRACE
Hi Grace,
Have you ever had a stent put in after any of those sphincterotomies? If not, that might be the next step the dr might do. I don’t know if you recall that I posted on here awhile ago that after my first sphincterotomy I was pain free for 2 years..no problems. Then the same story after my second one..2 years again pain free. Third time they stented..dr used too big of stents and I had pain every day. Then 3 years later and a different dr just put in a smaller stent and is talking progressive stenting for a year. I know that I have pain every single day now. Plus I still get “flare ups” also. Some so severe I have ended up in the ER as have several others on here. Did you have periods of no pain after any of your sphincterotomies? Does your dr have a plan for you?
hi Grace -
I had an ercp w/large cut (sphincterotomy)
This is Gracie, remember ? At least I think I talked to you last Fall but
even if not, it’s irrelevant anyway
to my common bile duct and a temporary stent placed in my pancreatic duct
that was removed two weeks later.
I was scared to death since my 1st and only other ercp started up acute
pancreatitis and nearly killed me but this one did not cause pancreatitis this
time
This ercp was performed one year ago by Dr. Freeman in MN and although I
have daily pain I consider it a huge success and I wish I had done it much
sooner. My diagnosis at that time was Papillary Stenosis/SOD I/Biliary I
and had my initial gi doctor known what he was doing, then my SO probably
wouldn’t be as stenosed as it is.
I adhere to a very strict diet although not as strict as it was a year ago at which time I could only eat up to 10 gm fat per day w/very low protein and sugar.
I am not diabetic nor have I ever had high blood sugars, at least to my knowledge,
other than the time I was hospitalized with my 1st ercp and had insulin
injections during that hospitalization.
I realize that most sphincterotomies are only a temporary “fix” and it seems
that eventually the SOD turns into chronic pancreatitis. I am due for another
EUS and am anxious to see what the findings will be in regard to chronic
pancreatitis.
Sorry about the length of this post, just thought I would give you a general
background of where I’ve been for the past year and where I am now.
I can’t remember who did your sphincterotomies ? Was it Peter Cotton ? Anyway,
best to you and I hope you’re feeling well today !!!
HI All again,
Thanks Nymphaea and Kris for the suggestions. I looked up Dr Kasmin an didn’t see him listed in the St. Vincent’s Hospital Pancreatic and Biliary Center. I’ll call on Monday to find out more info.
Question for all: Does your pain get worse after certain foods or narcotics?
Hi! i’m not sure where he practices out of. Dr. Freeman suggested a google search to get the info.
Foods such as raw vegetables and fruits, high fiber, like brown rice, and processed foods are a definite trigger for me. Hot dogs and sauces like alfredo sauce are also no-no’s! I don’t get worse after certain narcotics. I’ve read and heard that morphine can be a trigger, but haven’t had much experience with that.
Hi Kris
How are you feeling lately ? I’ve missed you from the SODP website although I haven’t been there much as of late. Are you still seeing Dr. Freeman and/or having yearly eus, mrcp’s w/wo secretin ?
Is it true that you “quit’ the SODP website ? Heck i didn’t even know that was
possible.
Are you posting here only or have you found other websites useful as well ?
I hope to see more of you as time marches on ! ! ! ! !
Warm regards,
Hi Gracie!
It’s good to hear from you. I’m doing about the same. I had an EUS and a pancreatic function test that showed 2 of 9 criteria for CP and reconfirmed the divisum. I am still seeing Dr. Freeman. He will be doing an ERCP on Tuesday where he will put a stent into my pancreatic duct. I’m praying for good results!
I did quit the SODP group. Yes, you can elect to no longer belong. I hope you’re doing well!
Kris
Hey again -
Well at least you’re posting here and it really is good to read your posts again !
I don’t know if you ever “met” another member who used to post on SODP but
her name is Sam and you two remind me so much of each other, i.e. always cheerleading other members on when they’re having another “bad day”.
I have had a few questions I’ve wanted to ask of you and one is that I’m wondering if your prior ercp gave you any pain relief at all ? Also, when was your last EUS and has Dr. Freeman talked about doing another MRCP w/secretin ? How is your brother doing now ? I think that I remember you
saying that your brother also has pancreas divisum and he was relatively
pain free until the last few years ? Have you talked to Dr. Freeman if you do
end up getting a bona fide diagnosis of cp would he consider that your cp is of
an autoimmune type, particularly since your brother has these pancreas issues also ?
What was the pancreatic function test you had recently and didn’t you already have some other criteriae for cp prior to your most recent EUS ?
Sorry for so many questions but I guess you can tell I’ve been saving them up to ask of you when I “ran into you again .” Also, I hope I’m not repeating any
questions I’ve asked before – just can’t seem to retain anything anymore
I will keep you in my prayers for your upcoming procedure this Tuesday and please let me know how well you do also ?
Best,
Hi Kris
I forgot to address my last post to you so hopefully you will find it and
know the post that does not have a NAME to whom it was written,
well, it was written to YOU – Sorry for that ;(
Hi! No worries on the posts! Thanks for thinking of me. I really appreciate it. I had my 1st ERCP last June where MF put a stent in my cbd. I didn’t have any relief from it. This time, he’s going to put one in my pancreatic duct. He said it’s controversial to do so without evidence of CP, as currently defined by the medical community. He also said he’s been having some success in doing this, so because it’s him doing it, I’m willing to try it. I don’t think that he thinks it could be autoimmune pancreatitis because my brother also has divisum. He believes my issues are more related to that. David is doing better, but has had a few flare-ups over the last couple of years. He had a pretty severe one in Dec., but has been ok since. He is going to start seeing when he can switch providers on his insurance in April in the event he has another flare-up.
The pancreatic function test is a relatively new one that they are using at the U of M in conjunction with MRCP with secretin and EUS to diagnose CP. It was a different dr. than Freeman who did the tests in Dec. He told me that the U of M is the only place he knows of that are using all 3 of these tests to diagnose CP. I had my 1st EUS in Jan. of ‘09, which was when I was first diagnosed with divisum. I wasn’t told that I had any criteria for CP after that test, but I should ask Dr. Freeman to clarify if there was a change between this test and the one I had in Dec. I had an MRCP with secretin in June of ‘09. He didn’t suggest repeating it. I guess i’ll learn more after tomorrow and will post what I do learn!
I do remember Sam. Is she doing well? Thank you so much for your kind comments and for thinking of me. I hope that you are doing alright as well.
Take care!
Kris
Thanks all for the replys to my post. It seems like everyone still has problems after sphincterotomies .
Judi I am in the exact same place as you, some foods definately trigger I have days where I dont need any pain meds, then bam pain so bad.I live on rice and toast and all bland foods
I also have pain in my bowel with spasms and nausea when the pain and spasm in my ducts start, seems like the whole digestive system goes highwire. Do any of you have bad constipation where you are in a bad phase. Unfortunatley I have to take Percocet and nausea meds when I have bad pain or would just end up in the ER. I realise that that is going to be a way of life for me I am so sick and tired of this whole issue.
I do want to say that this sight has helped me tremendously as I sometimes think it is only me that has this problem then I check bad on the posts and see that some have the same issues and believe it or not that is a comfort as you start to think that something is wrong. So it seems like we all still have pain after sphincterotomies to some degree even when we have had the best specialist. Has anyone remained completely pain free?.
Thanks again everyone.
Hi Grace!
You’re certainly not alone! I’ve come to accept that this disease is a journey and is an unfortunate way of life. I’ve learned that even the best specialists don’t understand why in spite of the sphincterotomies, we still have pain. Fortunately, there is active research going on that will hopefully provide the answers and more importantly, the solutions!
I can sometimes have constipation right before a bad attack, but when I am in one, I have diarrhea. For me, this could have something to do with the fact that I have severe abdominal adhesions in addition to the SOD.My dr. believes they are somehow interrelated, but does not know how. I had surgery twice last year to have them removed, but it didn’t help. Unfortunately when you have them, they tend to come back, with a vengeance. I won’t be doing that surgery again unless I end up with a bowel obstruction that would require it.
Hang in there! Like I said, you are not alone! It really helps to have the support and understanding of what others go through. I’d go crazy without it!
Kris
Hi , Yes I did have a stent put in the last time, for 3 days then it passed. It was a long recovery longer than the last 3 times. It has been 5 months since I had it done and the pain is slowly returning.
It has not reached the unbearable stage yet but I do require Percocet at times. You know I sometimes feel that I can handle the pain but not the nausea it is a daily thing. I take Zofran for that and it is very affective.
My specialist is at Duke University Hospital. I think the next step my be open surgery, I am totally not ready for that yet.
I did have complete resoulution of my pain twice and it was wonderful for a few months I felt great, no nausea or pain then over time pain, and nausea just returned.
I do hope that more can be done to give a more permanent outcome for all with this problem as everyone seems to report that their symptomes returned. It would be good if some of the doctors that deal with this could read some of these posts and realise that more reasearch should be done to find a cure for SOD
We just keep on hoping, and trying to get on with our lives even though this takes a lot of the joy out of life.
Hope you all have a better pain free week.
Is there any medical specialist that is interested in finding a cure for this disorder? I have been suffering with this for years and I count everyday as a great day because I know what bad days are like. I feel for all of you who have this too..No one understands nor do they know the pain that you have on a daily basis. I have constant pain and nausa. Please keep chatting that maybe someone out there will listen and find a cure.
Kris,
Can you outline the 9 criteria for CP the used with you? I suspect elevated enzymes and dilated ducts are the big ones but I can’t think of what the other 7 would be?
I have divisum as well but was told this was all clear on the basis of the manometry test and ercp. One doc did think that I may have subtle pancreatitus that doesn’t show up so easily.
I do have a very similar response to you with fiber which make me wonder.
Hi Brett -
I’m so sorry to read that you’re going through some particularly rough times – an angry pancreas is no fun AT ALL
I read that you are requesting the 9 criteria from Kris and since she is having an ercp today I figured that since I have this info anyway I would write it down
here. Also, this article lists 11 criteria rather than the 9 Dr. Freeman has told me about. These criteria are determined by the EUS, a minimally invasive test and are divided into two sets of features, 1) Parenchymal 2) Ductal and are as follows:
Parenchymal Features:
1. Gland atrophy 2. Hyperechoic foci 3. Hyperechoic stranding
4. Cysts 5. Lobularity
Ductal Features:
1. Narrowing 2. Dilation 3. Irregularity 4. Calculi
5. Side branch dilation 6. Hyperechoic walls
An EUS score cutoff of 5 criteria has been found to have good sensitivity & specificity for CP.
I hope this helps and that you start feeling better very soon.
Regards,
I ha the spinchterotomy doe in Nov. of 07 by Dr. Sherman at IU Med Center in Indy and a stent put in. I have been very fortunate to have been free of the intense pain since then. I am cautiously optimistic at this time, but know that if I ever have issues again, I will go back to him in a heart beat.
I had a bad attack last night and out of desperation started poking around. I’d read about palpating the GB but never paid much attention as poking that area never hurt .
I happened to be taking a deep breath at the time and bingo got immediate pain reproduction by pressing over the GB.
Now I check (and finally recall) the palpation test for GB pain requires a deep breath – and for the pain to go away when you exhale.
A lot of the symptoms didn’t point to GB – but now when I couple this to the high ejection fraction I’m almost confident enough to go ahead with removal. I’ll keep you guys updated.
If you have everything else normal it might be worth a try. Lie back take a very deep breath and hold it poke your fingers deep up and under the right rig cage at nipple level and work inward.
(When I’m not having an attack the pain is mild and hard to find – during an attack it’s immediate) As you breath out, maintain the pressure and the pain should resolve as you blow out.
The is because the GB rises and fall with inspiration and expiration. It’s an old outdated test now because it’s not specific to GB.
But if you’ve ruled out malignancy, pancreatitus etc it might help diagnosis. Follow up with a hida scan might show an abnormal EF as well and save an unnecessary sphincterotomy.
It;s too early to say much either way but it’s worth looking into.
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure. Investigators did not gather data on those patients who did not receive a cholecystectomy. Here some extracts:
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure.
The data are preliminary at this point, but the findings suggest that surgery may be warranted in patients with high ejection fraction, according to Dr. Holes-Lewis.
Dear Brett,
Regarding your inquiry about high gallbladder ejection fraction on HIDA (hepatobiliary) scan.
It is just becoming evident that a high gallbladder ejection fraction on HIDA (hepatobiliary) scan can be evidence of gallbladder dysfunction and can be associated with significant pain. I am a physician with expertise in Nuclear Medicine. My colleagues and I are in the process of submitting cases to the literature showing that we have removed gallbladders in patients with high gallbladder ejection fractions and found that their pain was relieved and their gallbladders showed chronic inflammation on microscopic examination.
High or abnormal gallbladder ejection fraction can cause a variety of symproms, some people just have nausea, others have pain, nausea, diarrhea & vomiting. Even if there are no symptoms those with high ejection fractions over 80% should have a surgical consult. High ejection fraction, or deeper contractions otherwise named, usually are the culprit for abdominal pain at the least. If you haven’t yet had a surgical consult then definately get his/her opinion ASAP. Almost all our pt’s with symptoms and this problem get immediate relief from gallbladder removal.
Kris,
Good luck tomorrow! I really hope that your EUS test comes back normal. I know I was happy when they told me they didn’t find any masses or permanent damage to my pancreas. But I do hope you get the answers you are looking for. It sounds like Dr. Freeman is taking the correct steps. Keep us posted.
I wish symptom resolution had been my result! My ejection fraction rate was 89%, yet my problems became worse post GB surgery. Freeman’s explanation for this was that if SOD is the underlying cause, it can exacerbate the problem. Relieivng the pressure in my cbd didn’t do it, o let’s hope this am’s ERCP does it with the stent going into my pancreatic duct. Stay tuned!
Thanks for thinking of me, Julie! I don’t think I made it very clear in my post. I’m having an ERCP with a duct being put into my panceatic duct to treat the condition of pancreas divisum that I have.
HAve a good one!
Best of good fortune to you with your ercp and you already know you’re in good
hands with Dr. Freeman ;0) Please let us know how you do and I am assuming
he wants an overnight stay for you ?
Blessings & Prayers,
Me again
I wanted to send a private message to you and although I know I’ve sent one before I can’t recall your last name so thought it best to ask first. Again, I hope your procedure goes smoothly and you get some pain relief.
Just curious if anyone who has had a sphincterotomy takes Welchol to help with excess bile? It’s crazy, before having the sphincterotomies I wasn’t getting the bile I needed because it was just going back into the pancreas. Now I’m getting too much because the sphincter is always open. Just took one tonight for the first time and it really seemed to make a difference. Just wanted to see what everyone else is doing. Just curious.
Thanks Julie,
I’m not sure you’ve been given the right explanations. If the SO was too tight or stenosed closed, bile would most likely back up the common bile duct into the gall bladder – if you still have it – causing one of the objective signs of SOD – dilated ducts – and into the liver itself if the GB has been removed.
I don’t know of any way it could back up into the pancreas.
Welchol actually lowers cholesterol by binding. It;s possible a sphincterotomy could allow more bile into the duodeneum if it had been closed before so you could now be getting more than you’re used to – though there’s no objective data of sphincterotomies causing this that I can find.
What can cause a problem with excessive bile is GB removal and welchol is used for this this purpose as it binds it – drugs like Questran, colestid – cholestramine are also used to lower bile production.
Hi Brett,
I had my gallbladder removed two years ago for acalculous cholecystitis. I continued to have relapsing pancreatitis. Four months later I had a main biliary sphincterotomy for severe ampullary stenosis and spasm with removal of choledochal sludge. Once again I relapsed with pancreatitis, elevated lipease and epigastrium and RUQ pain. Now I just had a pancreatic sphincterotomy with stent. The main biliary sphincter and pancreatic sphinter are connected but the pancreatic sphincter is slightly more inside the main biliary sphincter and it is a bit harder to treat. If one has pancreatic sphincter hypertension, it can cause bile back up into the pancreatic ducts which causes pancreasitis. Elevated lipease usually suggests pancreatic problems instead of liver. So yes, bile can back up in the pancreas and not just the liver. I didn’t know that either until my GI doctor explained it to me. Crazy, right?
No that actually make sense Julie, and ductal anatomy does vary. Typically the division between both ducts is such that the pancreatic duct is slightly behind.
Now I think about it if a stone in the CBD can cause pancreatitus then clearly pressure can back up into that duct as well.
Incidentally – sorry if I implied you were wrong – clearly I was way off and didn’t stop to think before replying.
No worries. We are all friends on here just trying to learn from each other.
Hi All, I would like to know if anyone has had a transduodenal Sphincteroplasty, after 4 sphincterectomies the pain has returned with a vengance, my GI doctor did say that this approach may be the next thing.
I would appreciate any comments.
‘Thanks
Transduodenal sphincteroplasty is the frequently offered next step following repeated reclosure after ES. I’ve lost the link but the John Hopkins website outlines it clearly with diagrams.
It’s not a fun procedure and you’re on and IV feed for up to a week post op. I hear it can be successful in such cases though.
My doc recommends trying progressive senting – form small to large after the first reclosed sphincterotomy.
I have a question for everyone. My docs say SOD does not always lead to chronic pancreatitis, but I have seen so many people who have SOD who end up with CP. Has anyone here heard anything about that? It is so frustrating since so little is published about this disease.
Well, I hate to say it, but everything I’ve read and been told is that CP is the ultimate end results. I’ve head confirmed pancreas divisum since Jan. of ‘09. I had an ERCP is July with a stent in my cbd, which didn’t help. I had an ERCP on Tuesday to have an stent put into my pancreatic duct. Dr. Freeman had a very hard time finding my pancreatic duct. He located it after 45 mins, but decided not to proceed with the stent placemenbt since he’d been inside for this loing. Evidently, the more probing and longer time they are in there creates an even higher risk for a pancreatic attacj, We will repeat the ERCP on the 25th of March. Again, my misfortunate understanding of SOD is that it wil lead to CP at some point. This is just my knowledge and interpretation of what I’ve read and discussed with my dr. I hope the same isn’t true for you!
Wow I’m so excited to see that I’m not the only one with chronic pain relating to SPOD. Recently had horrible experience at the ER. I have been dealing with SPOD for 7 years , 4 ercps pancreatitis and numerous er visits. Dr Freeman 2 years ago checked my pressures and did relieve some pressure from pancreatic duct. Still he can’t find why I have elevated pancreatic pressure. I feel I’m at a brick wall. In October went back to Dr and he told me he does’nt want to go back in unless necesary,but now he thinks my condition has evolved into chronic pancreatitis. The bad thing is my enzymes stay somewhat normal and my ct scans look fine. I’m on oxycodone and methadone 2 time a day just to work and take care of my family. Had a horrible 8-9 pain scale attack couldn’t take it talked to Dr. Freemans office they said go to the hospital. Of course they checked my lipase and did ct scan ,normal, and said the dr was in sugery all day. There wasn’t anything they could do for me since this was a chronic problem I need to see my primary dr. they deal with real emergencies. What do you do when they just sent you in a circle, but cry. I feel like there is no where to turn. I want to be productive but I feel since I’m a complicated case no one wants to deal with me. Has anyone else felt this way.
I am sorry you had a bad experience at the ER that happened to me during my one and only trip to the ER. I got the “we only treat acute conditions lecture” when my lab work and CT scan were normal. Since then I have had 3 ERCP’s with sphincterotomy, 2 with post ERCP pancreatitis and a diagnosis of pancreas divisum and still have the same pain. The ER would not treat someone suspecting a heart attack so badly.
Michelle,
How did they diagnose pancreatitus if you enzymes and CT are normal?
Regarding SOD leading to CP I wouldn’t despair to much. I’ve had chronic pain for 28 years.
Enzymes, CT, MRCP and US all normal to date. I just had ERCP of both ducts (I have divisum) with extensive cannulation, manipulation and mannometry and still no sign of pancreatitus.
So it’s not guaranteed.
Thanks much for your info. You always have so much to contribute.
I notice that more than a few of the people on here take pain meds like Percocet or Oxy or Vicodin. I have read that opioid meds can cause the sphincter to spasm, causing more pain ? Or is it just morphine that does that. It seems like a catch 22 situation. I’m curious about this because I injured my back and have been prescribed Vicodin.
Hey Drex you are right the pain killing drugs get SODer’s in a catch 22 ! I belive in the fall of 2005 I got in this as well as the Winter of 2006. There were no factual diagnosis given to me until Aug. 2008 ! So, there I was at home experimenting w/ Vicodin, which was given to me for Intestitial Cystisis of the Bladder attacks which were equally as severe as SOD, only you can not walk. You could get stuck in a restaurant, curb or city bus and then you would just be stuck. So, then by accident one day in 2003, I was flaring with IC during moon time, and of course this is ripe time for a migraine and low and behold, it also made my migraine become more bearable. But what I didn’t know is that the same constriction Morphine products do to the SOD, it does to the Basilar Artery of the brain and then although I might be able to tolerate the migraine better, the vicodin would actually make the migraine LAST Longer ! So, curative definitely not and just like Vicodin can cause SOD, it can also cause Basilar type migraine. I gave up totally on ALL migraine products by December 2007 when my pancreatic juices backed up into my duodenum and cause and ulcer like feeling , where I could not eat or even drink water and what was found on Endoscopy ? A chemical like irritation, hey they weren’t sure but I was not ever going to take a chance like that again, so I decided no more Vicodin ever. Then when demerol, dilaudid and tramadol all gave me viscious Basilar migraines, with full stroke symptoms, it was obvious I could never have a morphine product again.
Brett, interestingly enough, I have been diagnosed with chronic & acute pancreatitis without having elevated enzymes ever, or a drinking habit, or necrosis. Just a swollen pancreatic head seen on an MRCP possibly regarded as an artifact d/t the fact it was only seen on 1 slice. When I asked, like you, how could it be so, I was told, there were 2 kinds of pancreatitis 1 w/ elevations in lab results and 1 w/0.
Typically the look for evidence of pancreatic inflammation on MRCP and US – and as Kris will tell you they have 9 criteria.
Neither are accurate enough IMHO to be conclusive. They tell you an MRCP will pick up divisum 80 – 90% but it sure missed mine. If they can miss an entire duct they can miss anything and I think the opposite holds true with artifacts. I’d want a repeat study showing the same thing before I concluded it was pancreatitus.
Regarding opiates the evidence they case sphincter spasm is unequivocal. But they also do a number on the gut in general. If you can tolerate opiates there may be other factors involved. Given that I did just fine with then until recently.
In one study I have they found no SO spasm with tramadol.
In a similar study they look at pressure with opiate administration with and without a gall bladder. It went up considerably in animals with the GB removed – but not with it – show the GB act as a pressure reservoir.
In my case Nymph I can’t see how divisum would case pancreatitus with no evidence at all such that it flares big time with alcohol fiber, SSRIs and opiates – but does just fine after ERCP, manometry and 2 hours of manipulation. It just doesn’t add up.
Nymphaea,
How is the Cymbalta working for you? Still good, I hope.
Yes Drex, you are right I had meant to give my monthly Cymbalta update : I have been using Cymbalta for nearly 3 ms. I am up to 50mg./night. The 1st week of increase, I need ursadiol and enzymes w/ my very lowfat diet, however week 2 & 3, I am in no pain and can eat a normal menu of anything w/ out any ursadiol or enzymes. My stats show that 2/3 of the time, it is like I don’t even have SOD ! However, should I need an antibiotic treatment, the Cymbalta is less effective in controlling the SOD.
We were snowed in today and I made chicken cultet sandwhich on sprouted grain bread w/ arugala, vine tomato and salsa for lunch & was able to enjoy a walk to our corner bar/ restaurant and have a glass of Australian white wine, jalapeno poppers sour cream and chicken w/ cheese tortellini soup. I made chocolate no fat brownies and added 1 cup of shredded coconut for a snack.
Before Cymbalta, none of this would have been possible. I’m 144lbs. / 5′7″ / and a size 4, so I’m a healthy weight and make sure I eat small amts of food every 3 hours, however lamb is the only red meat I eat.
I hear ursadiol is very expensive – but hopefully no longer mostly derived from bile farms in china where they extract it from bears? Though the practice still occurs.
I think it lowers cholesterol and dissolves gall stones if I recall correctly. Why do they have you on it Nymph?
Any thoughts on why the Cymbalta is so effective?
No, Brett, thanks for bringing that out in the open again. It is totally synthetic in the states. We don’t allow its import here. I thought the same thing at first and panicked ! I grew up with bears and have stickers of them on my car ! There was no way I wanted one in a pen w/ my name on it ! My doc just suggested it on day, he said sometimes the ducts are narrow and not working right and little bile crystals get stuck and block or “sludge up the ducts” . All I know is I said sure I would try it, a couple weeks after my 1st sphincterotomy when I was still having a little trouble, and the next day I was fine. The doc said don’t be suprised if eventually you don’t need it. After 2 ms. I didnt need it for 2 more ms. & then suddenly, nothing worked. Then 1 year later it worked again, & now, I only need it the week when the Cymbalta is raised and I’m waiting for it to kick in. Cymbalta works on the brain & sustance P. I personally believes it relaxes smooth muscle and all sphincters are smooth muscle. They even say some people can’t begin a flow of urine & some men have ED from it. I think it also might relax vasculature, because to go from 8 Basilar type Migraines to 2 per month, must relax my constriction in my brain as well. And how do you explain my fibro improovement ? That has greatly calmed down and I just spoke to a well versed Ayurveda practitioner, who said that it was amazing I had results in 2 weeks ; most people don’t have positive reactions till 8 ms ! Maybe that’s when my dosage will level out ?
In addition to treating anxiety and depression, Cymbalta also treats the pain that can sometimes be involved in depression. It is also used to treat diabetic neuropathy and there seem to be alot of trials underway to treat alot of pain related disorders including fibromyalgia. I ‘m glad it’s working for you. I don’t know why or how it works, but who cares as long as it works, right? I tried to take it a few years ago for anxiety/depression, but it made the top of head feel like someone was stabbing it after only 2 days, and I did not sleep either. At least I think it was cymbalta. Maybe I’ll try it again.
There’s some evidence to show SSRIs and SSNRIs can really do a number on IBSD sufferers – but may help IBS C.
So many things to consider – It’s sure worth a try and looks like it can do miracles in the right people.
It was a well mean DR who put me on effexor that started my nightmare.
omg! i went in August of 2009, and the dr had to do another cut on me during the ercp, i started hurting so i had to spend the night in the hospital. recovered from that, which was my 2nd time to have them to cut it, and now, out of the blue, i was walking out of a store, and here it came!! mine starts with a squeezing in my sternum area, then i start getting dizzy, almost like i’m fixin to pass out, i got in my vehicle, and the pain just got worse, squeezing tighter & tighter…i thought i was either going to die, or just pass out, its hard to breath, and i can only moan or yell, idk… then almost throw up..thinking what the heck am i going to do?? i cant drive, should i call 911? finally, it eases up, and i head home….omg, are they starting AGAIN??? the only thing they have ever given me is nitro tablets to put under my tongue, and i really dont know which is worse, the headache you get from taking those, or the squeezing pain… im scared and frustrated!!
Janice,
Are you describing a “bloating” feeling ? I have experienced a horrible bloating,
squeezing feeling up & under my breasts (ribcage) on 3 separate occasions when
I was assaulted by acute pancreatitis requiring hospitalization. This is the
one thing that scares the heck out of me, not even the jabbing pain freaks me out
like the bloating/squeezing symptom does ;0(
Sounds identical to my attacks. I didn’t used to actually pass out until recently – now I do if I don’t sit down quickly.
I get the squeezing right in the middle under the sternum – sometimes it’s off the the right a bit.
Janice do you have any evidence of pancreatitus?
well, i dont know. after my last procedure, where you are supposed to just wake up and go home, the nurses got me up, i told them i was hurting, they didnt care. put me in a wheel chair, took me to the room where my husband was, while we waited on the dr to stop by and give us the ok to go home, by the time he arrived, i was doubled in a knot in pain, he ask if i was hurting in my back under my shoulder blade, i said yes, he said he was afraid i had pancreatitus, so i had to spend the night. the nurse told me my ducts were very, very tiny, that the dr had a hard time getting the tube or whatever it is they use during the ercp through….i dont understand..i mean, how many times can they cut the duct? is it possible there is more than one to cut? if i have another attack, i will have to call them. i know what they will say, i will be sent to the lab to have blood drawn and think they will check to see if some enzyme is high. and if i have another attack, go to the er….oh me…
I can’t take the ssri’s, they tear me up. I take remeron which also helps me sleep and is in kind of a category by itself when it comes to anti depressants. When I get my pain, it is more in my back near my right shoulder blade, rather than in the front.
I have diagnosed SOD I/PAPILLARY STENOSIS/BILIARY I DISEASE. THIS WAS
DIAGNOSED BY DR. MARTY FREEMAN OF MINNEAPOLIS, MINNESOTA VIA
ERCP.
ALL OF MY PAIN IS LOCATED IN MY BACK AND IN MY RIGHT SHOULDER BLADE
REGION AND BECAME WORSE FOLLOWING GALLBLADDER SURGERY – A
CONDITION THAT IS CALLED POST-CHOLE SYNDROME.
IT IS NOT UNUSUAL TO HAVE THIS PAIN LOCATED HERE AND IN FACT IS
VERY COMMON.
THE REASON I AM TYPING IN ALL CAP’S IS THAT I ALMOST LOST MY MIND WHEN BRETT SAID THAT HE HAS NEVER HEARD OF SO PAIN BEING LOCATED THERE.
ALSO I CAN GIVE YOU THE NAME OF A COUPLE OF WEBSITES WHERE YOU WILL READ LOTSA POSTS FROM MEMBERS WHO EXPERIENCE PAIN THERE. I’M SURE THAT JUDI WILL NOT MIND BECAUSE SHE HAS MENTIONED THIS HERE BEFORE.
HAVE A GOOD DAY ! ! !
Christine. What I meant was I’ve never seen it written that SO pain refers to the shoulder blade. You’ll see it written for GB pain all the time as a classic symptom but I have no articles that mention this for the SO.
I don’t like to speculate here as I have no experience or education in this area and I don’t want to mislead anybody. I try to report only what I read in well researched articles.
But since SO blockage should mimic the same effect as GB blockage the pain should be the same. I just have never seen it reported.
Hi Brett,
Right shoulder blade pain is very common in SO and it isn’t fun. Here it is in writing from a few places:
http://clinicaltrials.gov/ct2/show/NCT00471315
(go down to Detailed Description)
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=7AB086B0-AB01-446E-B011-2E67CAFEF96D&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF
(go down to Symptoms)
http://sphincter-of-odii-sod.blogspot.com/2007/05/following-is-excerpt-from-ucla-medical.html
Pain in the right shoulder blade is typically related to the biliary system – and it’s classic for the gall bladder. I’ve heard nothing of SO pain being here though.
Luckily I don’t have breasts for the pain to get under.
I used to be fine on SSRIs then out of the blue they did the same thing – worse attacks ever within 12 hours.
Is you GB still there Drex?
Janice you mention small ducts – do you mean CBD and pancreatic duct or do you have pancreas divisum?
Brett, what else other than SO or GB would fall under biliary system disorder? I had thought that such pain could be related to SO. I had GB out in May and still get that pain (along with URQ in front that we all thought was from GB).
Thanks,
Michele
I’m not Brett but I do know totally of what you speak in regard to the continuing pain you’re getting in your front (or back) upper right quadrant (even after gallbladder removal) and it’s called post-cholecystectomy syndrome. Just google it and you will unfortunately find it everywhere ;0(
I’m sorry but I can’t help you with biliary system disorders other than what I have
experienced/been diagnosed but I know there are many.
Best,
Brett,
I had my GB out three years ago, and it’s been fun, fun, fun , ever since. (sarcasm). I have never had any negative test results : liver function tests O.K., good pancreatic ennzymes, no dilation of the duct on MRCP, no divisum. Just pain sometimes burning. Any “attacks” I have had have always been in the middle of the night. they wake me up with a nasty URQ pain followed by severe nausea, sweating, etc.. then I don’t feel well for several days afterward. this has only happened three times.
Incidentally Drex your symptoms sound more like a duodenal ulcer – though I had similar symptoms before the pain became constant.
The biliary system entails the GB and the drainage ducts including the SO. The technical definition is – Of or relating to bile, the bile ducts, or the gallbladder.
I’m told SO pain mimics GB pain pretty closely but it’s hard to get specifics and doctors frequently contradict themselves. One source says the pain is not after meals another says it is – even the Rome criteria is being debated.
10 to 20% of people develop SOD as a direct result of having the GB removed. It’s believed to result from disturbance to the nervous supply of the SO. Some doctors don’t believe you can develop SOD without GB removal.
I’m trying to decide now whether to have my GB removed or not – you guys experience isn’t encouraging.
Brett,
Negative on the ulcers. I have been scoped so much I could probably do it myself at this point. The only odd thing that showed up on any of my scans is a hemangioma on my liver, which I am told is nothing of importance. The pain, sometimes its pain some times it’s more of a discomfort, didn’t really start in earnest until about a year or so after I had my gallbladder out. I’m not in your situation, so I don’t know what you’re going through, but I have asked several times if I could have a gallbladder transplant, get a new one put in. because not having one has not been fun. Unless someone can definitely point to your GB and say ” Yep, that’s the problem” I wouldn’t let them touch me. Once you start having surgeries and they start removing body parts, you’re never the same.
I said this before to you Drex, as well as another that the pain you are describing could be postcholecystectomy syndrome which occurs I think in approximately 20% of people who have their gallbladder removed.
Please do me a favor and respond to this post that you did at least read this. I’m starting to feel either invisible or ignored and if you’re not responding just because
you don’t think I know what I’m talking about, well then at least tell me that.
I’d agree with Cristie here. I just assumed you had automatically been tested for SOD if you had pain post GB removal. It should be an automatic conclusion given it’s prevalence.
I looked at the John Hopkins website and they do report one location for SOD pain being in the shoulder blade. I expected it to be the same but this is the first written confirmation I’ve found. And I was considering writing it in all capitals.
As a few folks here have said before – but bears repeating, the surgery cuts the nerve supply to the SO and is a MAJOR cause of SOD. Transplanting the GB would not solve the problem (and no doc in his right mind would even consider it, given you need to be on anti rejection meds for the rest of your life with immunosuppression. ) – but cutting the SO might.
There is good research to show that GB removal works in a lot of cases – 80%. There’s no way to tell if it will or not in acalculous GB disease and HIDA scans are almost worthless at predicting surgical success. You throw the dice and cross your fingers. Sorry you lucked out but I think you can be sure it’s SOD now with high
confidence – especially now you can rule out more common causes like ulcers.
I’d recommend a trial of sub lingual nitrate next time you get an attack. If it works in 15 minutes I don’t think you need to look much further.
Brett
You can certainly post THAT article right here if you want ? And in CAPITALS if you are still so inclined ? lol
Best,
I’m so glad to find this site. I started having major problems in ‘08 & my gastro dr. insisted it was my GB so I had it removed in Dec. ‘08. Then I had REAL problems and they thought it was pancreatic cancer for awhile. Luckily it’s not. I had a Sphincterotomy in Dec. ‘09 by Dr. Sherman @ IU and had relief for about 2 weeks. All my bloodwork, CT’s, MRI’s, PET SCAN, MRCP’S, etc. show nothing but the ERCP that Dr. Sherman did finally showed a major problem & he also placed a stent. I’ve started taking my pancreatic enzymes again & that seems to help some because if I don’t take it, I have immediate flare-ups & have severe pain. I don’t know what to do though because I think it’s CP, but no doctor agrees. Help!?!?
Hi Berta,
Where is your pain? What are your symptoms since having the sphincterotomy? You said you are taking pancreatic enzymes and they help. Makes me think that maybe you should get your pancreatic ducts looked at. Have you had a pancreatic monometry? You may have a hypertensive pancreatic sphincter. It’s another form of SOD and not very common but I have it. Also, I would suggest getting an Endoscopic Ultrasound (EUS) of the pancreas. It gets close to the pancreas and ducts to see if there is any damage or masses. I would suggest seeing Dr. Cotton in SC. They have an amazing team there and they listen. I believe your pain is real and I hope you find someone who will help you find some answers. Best of luck! Stay strong!
I should also add that I have Pernicious Anemia, pre-cancerous cells of the throat & major acid reflux since the GB was removed. I think that this is all related to the SOD and possible CP. Any ideas?
Cristie,
My apologies . I was not intentionally ignoring your posts as I was not aware they were all directed at me. I am fully aware of post-cholesytectomy syndrome, as I have been dealing with problems post surgery for over 3 years and have “googled” it to death. But thanks for the information anyway. For me, my pain and symptoms have changed over time and from what I can gather post-chole syndrome could in fact be SOD. Although, I would have to say I if I do have it, it would have to be type III, which means no help for me. Brett, you mentioned sublingual nitrate, I was wondering if taking L-Arginine daily would be of any help, as it increases Nitric Oxide in the bloodstream ? By the way, the gallbladder transplant was a joke.
Thanx Drex -
I really was starting to feel invisible when all I was trying to do was inform you of post-chole syndrome that I now understand you already know plenty enough
about ;(
I’m sorry for all you’ve been through but I do have faith there are treatments, cures just around the corner and waiting for somebody (s) who is currently researching and/or doing these procedures to discover.
Thank you again for acknowledging my post, I really appreciate that you did.
The Drs. at John’s Hopkins would not do an ERCP on me. Did lots of test and said they couldn’t find anything. One GI said I was stressed and the other said I needed to start walking, I would feel better. I have had pain for 4 years this month. Last month I made an appoint with a specialist at Charleston, SC, thanks to one of this support group’s member. Dr. Cotton did an ERCP and could not even find my duct going to my pancreas. He said my pancreas were not functioning and that’s why I have pain. He sent in the surgeon and he want’s to do a Total Pancreatecomy with Autologous Islet Cell Transplant. Wow, I go from one Dr. who says walk, I’ll be fine to the next who says this. Thank you God for leading me to someone who would help me find out what the problem is. These Drs. at John’s Hopkins has no idea what they have done to my mind. I started to believe I was crazy, trying to put the pain out of my head. But now I Do feel better knowing what is going on inside my body. The Dr. can’t believe I’ve only been on the meds I’ve been on and not some heavy stuff (which they gave me there, but not taking it). The surgeon thinks my pancreas are like this because either from the ERCP and Sphinctomy I had many years ago at UMMC or I was born like it. I go back in April to SC. I am not possitive I will have this surgery but I have had lots of post op test done already. I live about 600 miles away for SC, but it’s worth being treated like a real person.
Wow Robin. What a story. I feel so bad that those drs. blew you off the way they did at John Hopkins. Walk and you’ll feel better? right. Unfortunately, we’ve all been treated this way to some degree on this journey. Did the do a pancreatic function test while you were there? The TP/AIT surgery is a big surgery. There is a new support group called Pancreatitis_A Ray of Hope on yahoo. There is alot of good information. Tracey, one of the members had this surgery a couple of years ago in MN. If you join, I’m sure she’ll be happy to share her experience with you.I’m so sorry that you’re going through all of this, but am also happy that you found Dr. Cotton and his team. I’ve heard alot of good things about him. Take care and let us know what you decide to do.
Kris
Robin,
I am glad they are treating you so well in SC. I have gotten very different advice from some of the GI doctors that I have seen. It is incredibly difficult to know what to do. Best Wishes,
Hi again,
My symptoms before & after the Sphincterotomy are extreme bloating, gas, constipation, diarrhea, nausea, gastritis, pain on the left & right upper quadrants of stomach, sides & back, extreme sweating with the pain and intense itching in my back when I eat. I have also started having excrutiating acid reflux that hurts even into my ears since I had the GB surgery. Before the Sphincterotomy I would have this intense stomach pain as well about 6 minutes after my stomach realized that I had food in it. That pain is at least gone but the rest has come back with a vengeance. I have lost 33 lbs since ‘08 when I started having all of these problems. The only thing that alleviates my problems are not eating or drinking anything but then the acid reflux gets severe! I’ve had ERCP, EUS, MRCP, HIDA Scan, CT Scans, MRI’s, Ultrasounds, X-Rays & blood work done like crazy. Only when the ERCP was done did Dr. Sherman realize that I had major blockage and needed the stent and the ducts to be cut. I’m starting to lose my mind since everyone wants me to believe it’s all in my head. My current dr. said he doesn’t understand why the enzymes are working other than maybe it’s psychosimatic (sp?) or in other words that I’ve convinced myself that I need the enzymes. Please help! Any ideas? Also, I’m in Las Vegas and the quality of care here is poor but I was sent to UCLA, I went to Mayo Clinic on my own in Phoenix and they referred me to Dr. Sherman @ Indiana University. He’s supposed to be the leading researcher on Sphincter of Oodi. He thought that my pancreas looked normal other than striations that he didn’t know what was causing them. He’s hopeful that the Sphincterotomy would be a permanent solution.
Hi Berta
Boy you’ve been through so much and continue to go through it ! For me 2006
and 2007 were such nightmares of frustration and pain except I at least was
fortunate enough it could be documented that my common bile duct was dilated and I then developed post-ERCP acute pancreatitis that whacked out my pancreatic and liver enzymes. So at least everybody was on the same page as far as no question I had developed pancreatitis – just nobody knew why
I don’t understand that if Dr. Sherman saw blockage why he or anyone else would think it’s all in your head ? I also have talked to others who have seen Dr. Sherman
and he is known to be a very good GI doctor so I would think that records of your ERCP report would inform your local doctor of your major blockage ?
Unfortunately it’s not surprising at all that your local doctor doesn’t understand
your need for enzymes because most don’t, at least none so far as other members of other websites I’ve talked to. I cannot even tell you the number of people I know who have been helped by enzymes (including me) and any doctor who tells you that you are psychosomatic because you think they are helping needs to be
fired ! ! ! ! ! What does Dr. Sherman have to say about the enzymes ? Did he prescribe them ? Do you have copies of all your medical records including your
ERCP?
Okay and since you’re asking, I would first of all get all medical records if you haven’t already and if Dr. Sherman thinks he “fixed” you then I would take those records and get a 2nd opinion with another well known GI such as Dr. Marty
Freeman (MN) who is my GI doc and who does lotsa ERCP’s, the EUS, secretin MRCP’s, etc.
Lastly, insofar as your pancreas looking normal, unfortunately our technology
is such that although it has come a long way, it is still very much in its infancy
as far as the pancreas is concerned in that it takes quite a lot of damage for it to show up, even with ERCP, EUS or secretin MRCP ;( Also, there is much dispute
on the # criteria required to determine that it is indeed pancreatitis. Still another
point is that you could have an ERCP or EUS today and have it look normal, then
have another 6 mos or 1 yr from now and have it show lotsa damage and I’ve seen this happen in at least 2 cases in the last year.
Please don’t hesitate to keep asking questions and I can recommend another pancreatitis/sod website that could prove very helpful also: Pancreatitis_ARayofHope Remember Knowledge is Power ! ! ! ! ! !
Best,
Berta: Have you tried the University Medical Center in Tucson? Dr. John Cunningham has done a lot of work on Oddi dysfunction and is recommended by Dr. Freeman. Here is info on him: http://www.umcarizona.org/body.cfm?xyzpdqabc=0&id=27&action=detail&ref=230
Thanks for much for the insight!!! I will look him up. Wow, Tucson is much closer to home than Indianapolis. I wish I would have known about him. Thanks again!!
Hope it helps. Hope he helps! I have heard good things about him. They also have a large pancreas center there which could help you with the pancreas thing. If you go, let us know what you think of him!
I am so relieved to find others out there dealing with the same symptions and feelings that I have had. In October of 2008 I was buckled over in pain. Went to several appointments and testings. Dr said I had gall stones and needed to have my gallbladder removed. That was removed on November 7, 2007. Dr said you will feel better in 2-14 days. 30 day, then 60 days passed. I wasn’t feeling better but getting worse. Went back to the Dr who took my gallbladder out. He said it is just like having a baby, everyone is different. I didn’t believe him. So I went for a 2nd opinion. Dr. Lee in Lincoln, NE thought this it might have something to do with my sphincter of oddi. He did more blood work and determined that it was possibility. He doesn’t do ERCP here in Nebraska but he referred me to a Dr in St. Louis, MO. So March 2008 my husband and I drove down to Midwest Endocsopy in St. We meet with Dr. Alapardy (not sure if I spelled that right) on Monday. Dr’s felt I was a good cannidate for for the ERCP to see what was going on inside of me. In the procedure they determined that my bile ducts were closed up, so they cut them, put in stents. Procedure went well. Two days later the stents were taken out. They had me heavily medicated. My husband said I was an awful patient. So on Friday we headed home. I was given a Fat restriction diet to follow. 20 grams per day and 7 maxium per meal. That was hard to get used to but I tried very hard. First few months, I didn’t feel the greated, but at about 6 months, felt better than I had for a very long time. Then in January of 2009 I started to have pain again. I was devastated! It couldn’t be happening again. I had followed what they told me to do. I had the blood work ran again a couple of times. It all said the same thing. It was definately happening again. This time much more painful. So we headed to St Louis again the end of March 2009. I missed my son’s last two birthdays because I have been in St. Louis in the hospital. I didn’t even meet with the Dr this time, they just scheduled the procedure again. I felt like I was in a nightmare. I was terrified. I felt like they would find something worse this time. But it was the same. Bile Ducts closed. They put stents in and took them out days later, then we were on our way home. This time around hasn’t been the best. I have been exhausted all of the time, I get other illnesses fairly easily. I have followed the diet restrictions once again. So I am coming up on my anniversary for my 2nd procedure and I have started to have pain again. I am terrified and don’t want to do this again. My dr has ordered the blood work but I can’t get myself to go and get it done. I just keep hoping it is a false alarm this time. Thank you so much for your stories it has definately helped me.
Terri Keller, 38
Pleasant Dale, NE
It’s very interesting reading all of your stories, seem like once you get this, it never goes away. I’m interested, what do you all do when you are out & about and one of these “attacks” hit? Me personally, I try to find a place to hide. Once I was in the mall with my son, and I was so dizzy, feeling like I was going to pass out from the pain, I went into a dressing room, and was down on my knees, hanging over a trash can. The attack I had in August, a week before they did my last ercp, I had to go to the ER, I was laying on the bed, they had given me something for pain, BAM! I thought I was going to die, really, I started calling for the nurse, I was hanging over the tall trash can beside my bed..in horrible pain….I hate the attacks, they hurt so bad, and I have to get away from any people, guess it embarrases me… just wondering what ya’ll do.
Janice, I have to agree with you that it is very embarrasing and something people just don’t understand because it is so rare. I get a lot of people who look at me like I am making this up. Like this is something that I created for attention. I am the opposite, I wish it would have never happened to me and that it would just go away. Unfortunately, I don’t think I will ever be pain free.
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