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.
Getting ready to leave for Charleston this morning and a coldsore of all things has popped up on my lip!! I guess I won’t be having an ERCP on Tuesday after all. No way am I putting that mouth piece on that coldsore for the procdure. Guess I will have to reschedule if he wants to do the ERCP, will have to see what Dr. Cotton says Monday.
Stress is a big trigger for me and coldsores. I didn’t think that I was stressing that much over finally getting to see Dr. Cotton. I am scared of the ERCP for sure but I didn’t think I was stressing to the point for a cold sore to rear its ugly head! So I am guessing this will be a short trip and I will have to make another if he decides that I need an ERCP.
You are probably already on your way to Charleston and really, I can’t think of what words it would take to ease your mind about the ercp (that is, IF he decide’s it’s a go). Let me just say that I’ve heard gobs and gobs of good things about Dr. Cotton and if any doctor can do it right I’m sure he’s the one.
I will backtrack to February 11, 2009 when I finally got the nerve/courage up
to allow MF (Dr. Freeman-MN) to do my ERCP and if I could only turn back the hands of time as well as erase the likely damage done to my pancreas by choosing
NOT to have the ercp done …….
Oh well, at least I DID finally decide to go through with it and I am feeling sooooooo much better. Now I’m not totally out of pain, but since the ercp and my enzymes , I can even eat more than just a few months ago. My diagnosis is Papillary Stenosis and I know the outcome for SOD I is more favorable than sod 2 or 3, but my cbd & pancreatic ducts are still dilated (my cbd wildly dilated)lol and I know I have more pain and ercp’s in my future.
So I just wanted you to know that I’m another who was terrified from another ercp but if you go to someone who really knows what you’re doing (AND YOU ARE), then I think that if say you do develop post-ercp AP, that it will be very minimal.
Best Wishes & Lots of Prayers Are Being Sent Your Way,
Bedhead..did you go ahead with the ERCP? Hoping you are felling good. Waiting to hear how you and Brett are doing. Thoughts and prayers are with you guys!
This question is to all the females here on this site. I hope I don’t offend you males here. I have noticed and we have mildly discussed this topic before about anyone noticing more pain around the time of their menstrual cycle? I have mentioned this several times to my GI doc and he said that although he has not heard that but it might be possible since it does involve the hormones and alot of things can be affected by hormones. I am 48 years old and think I am just starting menopause. Since this is a new phase of life for me I do not know how the SOD is going to act through this. I could always tell you when I would start because my pain got increasingly worse and sure enough within a day it started. So I have not had a cycle in about 2 1/2 months but the past 2 weeks I have been spotting steady. My SOD pain has been worse so I’m trying to figure out if there is any correlation between the two. I believe there definatly is. Have any of you other women experienced this? Sorry if I gave too much info for some but I would really like to know how others are affected by this. Thanks for your replys. Karen
P.S. I would be curious to see what Dr. freeman thought of this but I am not a patient of his.
Hi Karen! I asked Dr. Freeman whether SOD is somehow hormone related since it so much more prevalent in women. He said that they don’t really know. That’s when we had the conversation that you may have read in one of my posts when he said that because SOD is primarily a women’s disease, there hasn’t been much research done. He believes this is highly unfair and has said he is doing everything he can to try to educate others in the medical profession.
I had a partial hysterectomy in 1991. I had my left ovary removed 5 years ago and my right one just in May. I’m now on HRT. I can’t make any comments regarding periods and increased SOD episodes. i didn’t have this nightmare back when I had periods. It does make sense to me that there is something hormone related. Hopefully, one day there will be more research and hope for all of us going forward.
Thanks for your words. But I didn’t mean “partying,” I have never been that kind of person and my friends aren’t really either. I am an opera singer, I sang with the MN opera twice, at the Ordway for performing arts three times and with the MN orchestra five times all before I graduated high school. I also was selected my freshman year of college to sing for the pope as the soloist (didn’t make many friends, all the senior were upset it went to a freshman). Singing is something I love and wish I could still do. I have missed SO many oppurtunites since getting super ill. I really had a chance to make it in the music world and I feel that has been taken away from me. sometimes its hard but normally I am told I have a great sprirt and am very possitive (but I have my moment of not).
TP = total pancreatectomy. TP/IAT = total pancreatectomy and islet autotransplantation
Melea,
Your accomplishments are tremendous and hopefully your recovery will be another accomplishment to add to your list. Keep focused on how you would like your life to be 5 years from now. The sky’s the limit on this meditation. Really claim it in your mind. See yourself passing this stage of your life and keep taking your brain to the next level until you see yourself exactly as you want to see yourself. The mind is extremely powerful in the healing process. Use it. You can make a collage board of magazine photos to depict your future. Look at it every morning and the last thing before you go to sleep. Another meditation is to go deep within your body until you can see all organs working and deep breathing see them all working in harmony. These meditations take practice, but you already know, you are diligent to accomplish much w/ the discipline you have. Now make your brain work in a new way and the mind/body connection will help your healing further. The so called “friend wannabees” which expressed their jealousy with you in the past hurt you to a certain extent. Allow yourself to feel this and let it go once and for all. Sometimes we burry past hurts deep and Sometimes our bodies physically turn our hurt feelings & stress into actual illness. It ’s a way our bodies scream out for attention when they are not being listened to. I hope I gave you some good ideas for your next couple of days. Where you place your mind makes all the difference. You are in charge of your own healing journey and you will decide which procedures to have or not to have, and who you will choose to treat you and when. Don’t give up that power to anyone. I’m here if you need me, for anything.
Nymphaea
Thanks for your words. But I didn’t mean “partying,” I have never been that kind of person and my friends aren’t really either. I am an opera singer, I sang with the MN opera twice, at the Ordway for performing arts three times and with the MN orchestra five times all before I graduated high school. I also was selected my freshman year of college to sing for the pope as the soloist (didn’t make many friends, all the senior were upset it went to a freshman). Singing is something I love and wish I could still do. I have missed SO many oppurtunites since getting super ill. I really had a chance to make it in the music world and I feel that has been taken away from me. sometimes its hard but normally I am told I have a great sprirt and am very possitive (but I have my moment of not).
TP = total pancreatectomy. TP/IAT = total pancreatectomy and islet autotransplantation. TPN = total parental nurtistion which is food by vein. I have a port in my chest that has a needle in it 24/7
I understand what you mean about getting together with friends. I am not as sick as you are, but hesitate to make plans because I know I will probably not feel like going. I am still working but it is getting harder and harder and now I think my fourteen month old and I have the swine flu. My company is notorious for letting people go who are or have been sick for various reasons. I would definitely prefer to work. Good luck with your ERCP. I am having my 3rd this year on the 19th.
I’m wondering,
1)what is your diagnosis ?
2)have you had any relief from your 2 previous ercp’s?
3)who is the person doing your ercp’s?
I apologize if you’ve already posted answers to the above, just I have sometimes have difficulty navigating this blog (& this is not meant to be a criticism of your
blog Judy – I love it):)
Also Julie, your company should not be allowed to mistreat their employees in such an awful way. My husband and I have a small structural engineering business and we would NEVER do that to anyone ! The Family Medical Leave Act should protect you & I would put all of your facts in order now just in case you are forced to take some time off in the future.
Best to You and my warmest regards,
1. Sphincter of Oddi dysfunction, pancreas divisum, and early chronic pancreatitis
2. I had relief from nausea after having the biliary sphincter, but no pain relief from the ERCP’s
3.
GI doctor #1 was really nice but did not do ERCP’s and sent me to GI doctor #2.
#2 GI doctor cut the bilary sphincter when the pressure was high. The in a second ERCP he cut the minor papilla. Then he told me my pain was not GI related. My primary care MD recommend a second opinion from GI MD #3 and #4.
#3 GI doctor did not do ERCP and wanted to scope my stomach. (I believe just because he could bill my insurance for it)
#4 GI doctor does research in SOD and told me I should just get my pancreas removed.
I had trouble getting some lab results and ended up reading the report from my last ERCP. I am not a doctor, but it did not sound very “fixed”. I then went to a new primary care MD that came very highly recommended who has sent me to GI MD #5.
GI MD #5 is really nice. I am not very optomistic, but at least he is willing to try.
My work let one lady who was in and out of the hospital with heart attacks. She sued them and got her job back. I know of 2 other people who were let go around illnesses. One had been promoted for doing good work. One time my company was over staffed and they decided to let the old people go. One elderly lady sued and got her job back. I am not sure how many days I can call in sick before I need to take FMLA. When your FMLA is up, human resources just sends you a letter telling you your employment has ended. Human resources is very sneaky at my company.
Dear Julie,
Sometimes a push out the door is just what you need to get to the next phase of your life. I was in NYC on SAT and I wanted to go into ABC carpet and home and thank them. They hired me when I healed from my first bout of SOD, when I got a preteens body back after a 7 month couch affair. Then the night before I was to report for work my first day, they called me and said don’t bother coming in, they gave the job to someone else. I took it really hard, I was 3 ms recovered now and nobody seemed to want me to work for them. Then my significant other said, “Why don’t you go back to school for medicine, afterall you know about more medicine than anyone I know who is not involved in the trade” Well somedays make all the difference in the world.
3 yrs later I was a licensed Acupuncturist with a practice in my home.
So, follow your heart Julie even if the descision doesn’t seem practical. You have 1 life (this time around) and sometimes life happens to us while we’re making other plans !
Nymphaea
Melea, When you were having your pancreatic tests done, were your enzyme levels ok? Maybe you can shed a little light for me about panceatic bicarbonits, or a pancreatic insufficiency. I am hoping I hear the official results early this week, since Dr. Freeman will be back today. You have made some amazing accomplishments, and you seem to be a very strong person, so with your strong will, and help from all of us, you will be back doing what you love. I hope everyone has a tolerable day, Michele/MN
I am so sorry I just realized as I was going through the blogs that you wrote this weeks ago!
I don’t remember my numbers this isn’t my only med issue, we are more worried about my wbc and hemo and such.
What I know about bicarbonate and insufficiency are very basic. Pancreatic insufficiency is the inability of the exocrine pancreas to produce and transport enough disgestive enzymes to break down food in the intestine and to allow absorption. Most common case is recurrent pancreatitis. Pancreatis bicarbonate is a base and critical to neutralizing the acid coming into the small intestine from the stomach. The mechanism underlying bicarbonate secretion is essentially the same as for acid secretion parietal cells and is dependenton the enzyme carbonic anhydrase. In pancreatic duct cells, the bicarbonate is secreted into the lumen of the duct and hence into pancreatic juice. In short enzymes and bicarbonate travel through the pancreatic duct to the duodenum. Normal ranges are 22-30mmol/L
I received the information on the study that is being done on SOD. It does not promise to help the participants, but is more gathering information to help future SOD sufferers. My doctors don’t think I am ready for an ERCP yet, so I am not going to join. If you are going to have the procedure done though and would be willing to help with the study you might want to check it out. The study is being done in multiple locations: Alabama, Indiana, Maryland, Minnesota, South Carolina, Texas, and Washington state. http://clinicaltrials.gov/ct2/show/NCT00688662
I hope you all have a pain free day.
Hello everyone, I have no news to report, because I can’t get an answer myself. But I did come across a web site today while I was researching. PubMed.gov . We can never have enough information or places to get it. I hope everyone is having a good day, mine isn’t so great but I’m doing some deep breathing to make it to 4:30 at work. Michele/Mn
This is a very good resource Michelle ! We used it in med school constantly and even had to base our most important paper on research from it. I did the study on whether it was healthy for the human body to live on a fat free diet and anybody who would like a copy and give me their Email !
Well I got a phone call this afternoon, not really clarifying the results, but to set up an appointment on December 14th to have a Secretin MRCP done and then a clinic visit after that. I wish a good night to everyone. Michele/MN
Hi Michele/MN!
I’m sorry you have more waiting to do. I think that’s the one I had done when I was hospitalized in June. It was like an MRI, but they place something on your stomach that helps them focus on our trouble zone. It was long. I’m sorry you’re not feeling well. I haven’t been, either. I was in the ER at the U again on Monday afternoon. I had the sharpest pain I’ve ever had with this hit me while I was at work. I almost thought I was having a heart attack. They checked for that and the ususal. Of course, everything wsa normal. They are so nice to me. They’re not judgemental at all and give me the meds I need. I emailed Dr. Freeman yesterday to let him know, but haven’t heard back. I know he’s buried after being gone. I’m hoping for a better day for both of us! Kris
I’m sorry you’re not feeling up to par. Its nice that the er nurses and such were nice, I don’t always get that, especially if my labs and such come back normal. What did they give you for pain?
Also about dr freeman, he did an ERCP on me yesterday I was his secong of the day so at 930am and he came and checked up on me at 1030pm last night. So I know he is very busy, but he normally is good about getting back to patients.
Dr freeman almost cancelled my ERCP because of my labs, my vitamin d was a “. . .” Highlighted red and said has no trace amounts. He was very shocked and said he has never heard of one that low let alone seen one that low, he also called dr sanjeevi to look at it and she said the same thing.
Hi! They gave me Dilaudid, which has seemed to break the cycle. I think they can tell by my records since I also see Dr. Carter that I’m not a drug seeker. He had suggested startinga longer acting pain medication during my last visit, but I told him I didn’t want to do that yet. The ER nurses were nice, but the woman dr. was a little crabby until she came back from reading my records. Then she was much nicer and authorized the Dilaudid. That’s interesting about your vitamin D levels being so low. My mom heard something about people with pancreatic issues needing more vitamin D. About a month ago, I started taking 5000 units a day. I can’t tell any difference so far, but who knows over time! I’m assuming that you’re still in the hospital.I hope you’re feeling OK. Please let me know what the results were. And thanks for the update on Dr. Freeman. He is really good at getting back to his patients. I knew he was doing your ERCP yesterday and would be behind after being gone. I’ll hear soon. I’m anxious to hear how Brett’s and I think it was Karen who also had theirs yesterday went.
Hi Kris,
I’m so sorry that you are not feeling well. About 3 months ago I had “cardiac event” as the dr called it and ended up in ER by ambulance and after all the testing and not being able to eat I starting having alot of pain from the SOD so they gave me diluadid and boy that helped alot! The nurses and dr then were wonderful! Several times I have been tempted to go to the ER because the pain meds I take just don’t do much when I am having a bad flare up but I always wondered if they would think I was just a drug seeker or how I would be treated. Do you tell them you have SOD when you go in to the ER Kris? Do they know what that is?
I have my ERCP on the 3rd..I think it was Brett and Bedhead that were having theirs done yesterday. I hope they are both better now and the pain is gone for them. Must be going around in the air because I have also not been feeling very well the past few days. I came home early last night from work. I have found that with this chronic pain that if I cannot take enough meds at work to stay ahead of it then it can get real bad real quick. It is much harder to get the pain to go away if I can’t stay on top of it when it first begins.
I hope you are doing much better now Kris. I know that after a bad flare up then the next day I am just sore i guess you can call it from the muscle spasming. Like having a charley horse.
Melea I do hope you are feeling better. I had labs done one day from my new primary dr and thought she was crazy when she said she wanted to test my Vitamin D levels..I said ok but it’s fine I’m sure! Well i was very low so I was taking 50,000 IU once weekly and now she told me I just need maintenance so I am taking 1,000 IU once daily. I never did feel any different when it was low or now. I think it can affect your muscles and energy levels. Did they give you Vitamin D in the hospital?
Hi Karen! I couldn’t reply to your post to me, so I’m replying to the once you sent Melea. I just don’t understand how this works sometimes! If I have to go to the ER, I always now go to the ER at the U of M. All of my records are there, and I also have all of my prescriptions filled at the outpatient pharmacy there. I don’t want there to be any question about why I’m there. I do tell them that I have SOD and also abdominal adhesions, which they can quickly confirm from my records. The adhesions can cause partial intermittent bowel obstructions. Sometimes I can’t tell what is going on! Yesterday day was really tough, but today is much better.
Some nurses and doctors know right away what SOD is and some don’t. If you have to go to the ER, is it possible for you to go to the hospital that your doctor is affiliated with? It really helps if they can access your records. I’m sorry about confusing your ERCP date with Bedhead’s. I hope it went well for her, too.
I know exactly what you mean about pain getting out of control quickly if you don’t stay on top of the meds. For that reason, I now take them every 3-4 hours from the time I get up until late afternoon. I can cope at home with more pain, but not at work!
I hope that you are feeling better soon. Please stay in touch! Did I ever give you my email address? I think I did, but just in case, it’s krisl1204@yahoo.com.
Your Vitamin D was low because you are not absorbing any fat. You are passing it all. Viamin A D E & K are all fat absorbed. Hopefully you will get your sunshine soon ! That will help ! Glad to see you are done with it !
Morning everyone, Kris, I have never heard of Dilaudid, does it make you tired or anything?
Melea, I hope you are feeling ok today after your ERCP. I can’t wait to see Dr. Freeman, I’m going to ask him if his ears ring a lot, because of all of us talking about him.. LOL
Nymphaea, I would like to read a copy of that, my email is meeen1@msn.com ( I’m not really mean, it’s an inside joke between me and my best friend) Michele/MN
Hi! It is a strong pain medication. It does make me pretty drowsy, but like Michele A. said, at that point one should be napping! It’s especially strong in IV form, but works very quickly. No, I don’t think anyone has heard from Brett or Bedhead yet after their ERCP’s.
Dilaudid is a form of the old fashioned drug you probably heard of in movies Laudum ? Its another lovely opiate, If you give to much to a patient their oxygen level drops too low and they can pass out or die. Ask me how I know. LOL . I swear when I walk into an ER they can’t get nothing straight !
I had Dilaudid after my GB surgery after the usual (Percocet, Vicodin) did nothing. It was awesome. Pretty powerful stuff, so it did make me tired (though it could have been the recovery itself) – but Kris if you are in so much pain that you need it, maybe it’s not the worst thing to be home napping! Hope it works well for you and you feel better soon! I was so sorry to see that you landed back in the ER.
Michele/MN sorry that you aren’t getting a clear answer. Hope you are feeling OK and your tests go well. Isn’t it something, one test usually just leads to another… sounds like overall you are in very good hands though. Let us know how it goes and if you get more clarification on your results.
I guess no one has independently heard from Brett since the ERCP?
I returned home today from Charleston, S.C. I had an ERCP done by Dr. Peter Cotton. The manometry was normal. The main pancreatic duct was narrow , so he did a ballon stent. I do not have SOD. I did get a dx tho, I have chronic pancreatitis. The pain I have been dealing with all this time was my pancreas.
I wish you all the best of luck with your SOD problems. I highly recommend MUSC and Dr. Peter Cotton. A little info about Dr. Cotton. He is the worlds expert on ERCP. He is who brought the procedure to the United States from Europe. As my GI put it, “Cotton is the godfather of the ERCP”. I was treated very well by the entire staff. It is their practice to keep you over night after an ERCP just in case pancreatitis sets in. I stayed over night and the next day because he wanted me to have an EUS to confirm the chronic pancreatitis dx and to make sure there were no cysts or cancer.
I asked how many ERCP’s they do per day and was told as many as 6-8 per day. If you go to a teaching school such as MUSC it is key that you not sign consent forms to let a resident or fellow do the procedure, wait until you speak to the professer and ask that he or she do your procedure, you have that right. They won’t tell you that because it is a teaching school but speak up for yourself. I certainly didnt want someone practicing on me, so I asked Dr. Cotton if he would perform my ERCP and he did. Same when I had my EUS I asked and it wasnt a problem.
In closing I really wish you all find treatment for your SOD.
Note to Brett… I asked about botox and Dr. Cotton has used it about 50 times.
Thank you for your update. How are you feeling? What is the next course of action for you? You are right on about not letting the residents perform the procedure Observation is OK, actually doing the procedure is not! I will be interested in your next step. Did you have the EUS? I’ve done a lot of research and communication with others who have SOD. My understanding is that SOD always leads to either chronic or acute pancreatitis. I really hope that you will continue to communciate with us and let us know how you’re doing. I also hope that your doctors have a plan laid out to help you cope. I’m happy for you that you finally have the answers. I wish you all the best and hope to hear from you again soon! Can I also ask if you ever had elevated enzymes and LFTs before your ERCP? I apologize for not remembering your full story. You know how posts go on here…..
Hello everyone!
Well I finally had to go to the ER last night. I just couldn’t get the pain to go away. The dr and the nurse were wonderful. They had actually heard of SOD and were very understanding. The Dr said he was impressed that I knew what ALT and AST were. I told him that with this disease I keep real close tabs on those numbers. They came back elevated last night which I kind of figured they would. He was surprised that I am having to wait so long to have my ERCP done. They gave me diluadid again which helped so much. They gave me one shot IV and it didn’t go completely away so the nurse gave me another shot which stopped the pain. The Dr also wrote me a prescription for #30 more of them to get me through the weekend. He was a very understanding Dr. which I was very thankful for. I had called my dr before going to the ER and left a message for her that I had taken 2 pain pills and got no relief so half hour later I took another 1 1/2 tablets with still no pIn relief and wanted to know how much I could take and still be ok or what should I do? The nurse called me back and said that I am only supposed to be taking 5 tablets daily and if I run out then I am “cold turkey” because the dr wouldn’t fill it early. I said I am not asking her to fill it early I still have alot left. I’m just asking what to do now since I can’t get the pain to go away. The nurse said that I have already overdosed on the tylenol..I said no I haven’t it’s only 325 mg of tylenol and you can have 4 gms in 24 hours so a person can take 12 of those a day and still be within the guidlines of tylenol. She was such a witch..she said well let me ask the dr and I’ll get back to you. My husband was soooo mad he got in the car and started going down to the dr’s office to talk to her and tell her what the nurse said. In the meantime the nurse called me back and said I needed o go to the ER. I called my husband and he turned around and got me and we headed to the ER. My dr could have just written a prescription for something stronger when I get these bad flare ups and saved me 6 hours in the ER but she wouldn’t. I have an appointment already scheduled with her on Monday and she is going to hear about it once again how I was treated by the nurse. I can’t believe how rude people can be when they know nothing about this disease. I have mentioned before in previous posts about how reluctant I was to go to the ER for this pain but last night I couldn’t hold out. I am glad that I went now.
How is everyone else feeling? Still no word from Brett?
Bedhead..I am so glad that you are doing ok and got some answers. Like Kris I am also interested in you next step of treatment. Please keep us posted .
I am sorry that things are going so poorly. I can’t beleive how long you have to wait for you ERCP either, its ridiculous. When you feel bad, you do not need any other frustrations.
Hi Karen! I’m so sorry you had to go into the ER, but I’m also very glad that you did and found an empathetic doctor and nurses once you were there. Dr. Freeman and Dr. Carter (my dr. at the Palliative Care Center) have both said that sometimes, the IV pain meds is the only thing you can do to break the pain cycle.
I ended up in the ER myself last Monday. While at work, I had a sudden huge pain in the usual spot under my right rib cage, but this time it radiated into my breastbone. I got scared about whether or not it could be my heart. I had one of my employees dirve me to the ER. When I have to go, I always go to the U of M where my records are. The dr., a woman, was a little hesitant at first to give me pain medication. She said she had to read my records first. I said “please do.” About 15 mins later, in comes the nurse with the IV Zofran and IV Dilaudid. It is the only thing that works for me. They ran the LFT, AST and LFT tests, which, as usual, were normal. They also did some other blood test where the tube of it was put on ice to send to the lab. THe nurse said it was testing for metabolic changes and that normal would be a really good thing, which is was. The dr. told the nurse to give me another dose of Dilaudid and to send me home to contact Dr. Freeman.
I let him know via email that I was on the ER. I asked alot of questions about whether or not one could be in the condition of chronic pancreatits without having elevated enzymes, etc. He replied to my email, but didn’t address the questions. I don’t blame him. He probably doesn’t want his opinions in writing about a potential diagnosis without having further conversations with me. Plus, he should be compensated for his time. I then emailed his nurse and asked for an appt., just to address questions. I have an appt. on the 7th of Dec.
I had a rough week, but started feeling better yesterday. I’m getting concerned because I feel so weak sometimes. I’ve lost about 5 lbs. over the last month because of the nausea and increased pain when I eat. I seem to have come out of this last flare-up that really has lasted about a month! Each time I have one, it seems like it takes longer and longer to come out of it. Do you ever feel weak from all of this? Have you still been able to work? I made it through last week working, but I don’t know how!
I see Dr. Carter on Monday. When I saw him a month ago, he wanted me to start on a long acting pain medication. I told him I wanted to hold off because I can take the Oxycodone and function. I’m concerned what another type of pain med will do to me in terms of being able to function. I will discuss this with him and consider it. I decided to take next week off as I still have 7 remaining days of vacation to use before year end. That may be a good time to try something new to see what it does. Other than that, I don’t know that there are any other treatment options available. Dr. Freeman has said he won’t cut my SO again. I’m assuming he doesn’t want to for concern about scarring as Brett referred to in his post. That will be one of my questions. He’s also said he doens’t want to go into my pancreatic ducts even though I have Pancreas Divisum because that could make it worse. Why will be another question. While I certainly don’t want any risky procedures done, I just wish there were something that could fix me. You can read in my post to Brett about my brother, who is SOD I and had a sphincertoplasty successfuly done. I will also ask about that, but I di know it’s a massive, scary surgery.
I’m sorry about that judgemental nurse at your doctor’s office. Does she not know that you work in a pharmacy and have a higher than the average person’s knowledge about medications and safety? I’m assuming you like the doctor or you wouldn’t still be going to that office. When is your ERCP?
Sorry I didn’t reply sooner. The screen on my laptop died Sat. am. I felt like my right arm was gone! I’ve got my work laptop at home now until I get my own replaced.
I hope you are doing better! I’ll look forward to hearing from you again.
Kris,
I could write your responses myself Kris! You are so much like what I am going through as well! You really do help me by letting me know what Dr. Freeman says to you. Thanks so much for that. My new GI doc that will be doing my ERCP on the 3rd said that if the stenting for a year doesn’t work then he would refer me to a surgeon and would just “fillet it open” meaning a spincterplasty. I asked what the long term effects of that would be and he said nothing. I have heard that it is kind of a last resort procedure? I need to do more research on that before I go that route.
I have also been told by my primary dr that maybe I need something longer acting and will discuss this with my pain management dr when I see him for the first time this Friday. The ER doc gave me a script for Diluadid and that has helped me alot when it gets real bad.
I am working but just cut my hours down to 4 days a week now can barely make it through the days sometimes. Yesterday was a bad one. I would have stayed home but there was no one there to cover for me so I went in for 9 hours..it was brutal! My pain is getting worse now after I eat which used to make it better and I am getting more nauseated as well. The ER doc and the new GI doc both asked me if I have ever been diagnosed with chronic pancreatitis. I said no. I need to see what the symptoms of that is.
I am so weak during a flare up and afterward I am just so sore..like when you get a charley horse in your leg then it’s sore the next day. My energy level is almost non-existent now.
I have also wondered about continued cutting of the spincter and scar tissue building up and the new GI doc said you can cut it as many times as you need to. Then he said he will probably stent for a year.
I am so sorry that you ended up in the ER also..I am just glad that the Dr’s are able to read your charts and can understand what is going on with you. I really lucked out when I went in. The dr knew what SOD was! Please keep me updated on what your pain dr says to you. What is your next step? Are you at just pain management at this point?
Again thanks for all of your insight and information..it really does help me alot!!
Thanks Kris,
Karen
Boy, we do sound like we’re in the exact same place! It’s the same for me, the pain is now worse after I eat where eating seemed to help before. And, the nausea is worse overall. I really appreciate your support as well. It helps me so much to be able to share our common stories and also to hear what your doctors say, too. I just wish we hadn’t met this way.
I am just in pain management at this point. I’m just taking a quick break at work right now. I’ll write more later. Hang in there!
Well a lot has happened since my last post and have a lot of new information I think posters here will find useful.
Firstly my feeling you must attend a speciality center has been completely validated.
I had an ERCP 2 days ago. They asked thoroughly about past reactions to anaesthetic before starting. They doc assurred me they would us propofol not pethedine – this is routine for them as pethadine cases SO spasm.
The ERCP found I had pancreas diversium – 2 ducts- one inside the ampulla with the SO and a second exit further down. I also had a diverticulum close to the ampulla.
The Doc spent over an hour exploring. She did a die injection into the pancreatic ducts (ERCP) and manomety testing of the pancreatic duct. Pressures were normal.
She could not enter the bile duct and test the SO due to the diversium and the diverticuli so the SO was not tested. As such she ordered a DIDA scan – a more sophistocated HIDA scan.
The test was completely normal – apparently a DIDA scan can’t differentiate well between SOD or GB dysfunction – if you have a abnormal ejection fraction. BUT if the ejection fraction is normal you can rule out SOD.
Basically if the SO is spasming the GB can’t eject bile and it backs up casusing pain.This shows up as a low EF. Normal EF means the SO must be open.
I had no increase in pain or pancreatitus after both tests. The doc is now convinced it is duodenal hyperalgesia and IBS. The studies I’ve presented here pretty much confirm it.
So it seems if you are type 111, normal enzymes and duct diameter, the probability is that it is not SOD . There are exceptions as shown here but the probability is low – and only 8% get relief at 2 years with sphincterotomy.
A big point of concern is that endoscopiclly cutting the SO is not to be taken lightly. Apparently the heat and trauma of the cautery wire can cause it to reclose and scar later with a quite high frequency (as reported here) – much more than the 10% at 10 years we are told. This is far less of a problem with open sphincteroplasty but that proceedure is scary.
The Doc sees a lot of reclosures – at least 30% – she does not recut as the problem almost always reoccurs after it has happened once. Rather they use progressive senting – small to bigger – to stretch it open.
Cutting a perfectly healthy SO can lead to a scarred closed sphincter later an add SO problmes to preexisting issues.
She also told me cutting the SO propely reduces both SO and pancreatic duct pressures so pancreatic duct stenting is unnecessary. Her rate of pancreatitus was 4%.
So it seems viscreral hyperalgesia can cause severe pain that mimics SOD and a lot of patients are getting ERCPs and ES unnecessarily which can lead to other problems. So you definitely want manometry and speciality center testing before considering ES. My first doc was going to blindly cut it if I begged him and was concinved the duodeneum could not be a source of pain.
As for the real source of the pain it seems visceral hyperalgesia is the problem. It’s a new and poorly understood area but it seems it’s similar to other chronic pain syndromes. Recent research shows
the glial cells are involved in sensitising the pain receptors and there are drugs now that may be directed at this.
What I know for sure is – pethedine, opiates, codine, SSRIs and caffine are major triggers. Everybody should insist on propofol if there is any doubt. After a major invasive proceedures with pancreatic duct manipulation and injection I had no increased pain at all and it’s quite clear the initial endoscopy with pethadine started all this problem.
Most doc don’t believe that the sot of pain we get can arise for the duodeneum and bowel alone and we must have psychological issues. If you’re type 111 you need to be very careful, do you own research and be your own advocated.
Wow Brett
What a relief for you finally, you must be relieved to finally have the diagnosis of all your pain. Reading your post was very interesting, I was curious about visceral hyperalgesia , so went and did some reading on the subject. It’s amazing that it all stems to the CNS , and that the sensory neurons can produce so much pain within our internal organs , just by consuming food. One question I have for you , when this pain all began did you have some illness or event that may have triggered it all off?Also what medications have they prescribed to you for when you get the pain? I understand Propofol to be used to help with the induction and maintenance of anaesthetics, so I can see why it would have helped with post manipulation pain. It makes me question my own diagnosis , you have given me inspiration to speak up next time and do my own research into whats foing on within my body. I’m seriously thinking for the future of going to the specialty centre that you went to , they obviously know shat there talking about. They gave you the full works by the sounds of it , and at least now you know it’s not your SO. How was she towards you in regards to all the information and research you had done? Well Brett I’m so happy for you mate , and lets hope your now on your way to a long , healthy and pain free life . I hope to talk again soon .
Hi Brett! It’s great to hear from you! I’m so glad you’re doing well. You certainly did learn alot. Dr. Freeman has also told me that he would not recut my SO, even though he found significantly high pressure is my CBD. The scarring issue is probably the reason. I also have pancreas divisum, as does my brother. Divisum is a congential vs. hereditary birth defect. Both the radiologist who discovered it through an EUS and Dr. Freeman were surprised when I advised them of my brother, as the odds of 2 siblings with this is highly unusual. My brother is SOD I. He had a severe acute attack of pancreatitis about 9 years ago with a pseudocyst the size of a basketball. He was very ill, hospitalized for weeks. After he had surgery to remove the pseudocyst and had recovered, he had the sphincteroplasty done. He went through a tough couple of years recovering from the whole thing and now is primarily able to control it by diet, although he has an occasional flare-up.
Maybe the sphincteroplasty is why he has done better than I have.
Now, the question for you is, are there medications that will be able to control the pain you cope with? Have you started them yet? Do you know how this condition started? Questions, questions!
Thanks so much for sharing your story. I hope you will still continue to communicate with us and let us know even though you’re technically “SODless”!
Hello Everyone, Had a rough couple of days, should have went to te ER on Sunday night, but didn’t want to be stuck there for five hours, so I went in yesterday morning to my regular Dr, and had to get a Morphine shot for the pain, which only helped a few hours, then I had to take my pain meds. Brett, I’m glad you are doing ok, and we are all glad to have you back.
Kris when you get that Dilaudid shot does it make you tired? This is the second time I have got a Morphine shot, and I could not sleep at all when I got home. I started to doze off and then I was up in a fog for the rest of the day. I am at work today, but I am really struggling to stay. I’m still in pain, and I am so tired It’s hard to keep my eyes open. I hope everyone is having a tolerable day!!!
Michele/Mn
Hi! I’m sorry you’re having such a hard time. I know all too well what that is like. Dilaudid and Morphine have the same effect on me, they keep me awake and foggy. I hate having to take these meds. I’m doing better these last 2 days. I wish I knew why so I could do it all the time. Not perfect by any stretch, but better. It just seems that these flare-ups happen, they take longer to come out of and I really can’t pinpoint what causes them or what helps them to go away, other than time. It’s frustrating, as we all know too well. I hope you get some rest tonight and feel a little better tomorrow.
I am sorry to hear that so many of you are having a bad time! Michele/MN – have you ever been given Dilaudid pills to take at home for pain? I had them after my GB surgery and I slept a lot – not sure if that also was because of the recovery but I was able to sleep. I took Percocet last week and was loopy but also unable to sleep and somewhat anxious, which was not something that I remember happening before. Percocet and Vicodin did nothing for me after the surgery, which is why I got the “better” stuff.
Brett and Bedhead, glad to see you back. Brett, the findings you post are very interesting. Maybe this could guide the GI medical community from thinking there is no such thing as SOD III to something along the lines of – if you otherwise would be diagnosed as SOD III, these are the other things that should be considered. I have read a lot about doctors not believing that SOD III exists, but perhaps it means that instead of dismissing people with biliary pain but no other objective findings, there should be other avenues to explore. I am lucky not to have been dismissed by my doctor (who thinks probably not SOD absent raised enzyme levels or positive scan but willing to keep retesting and looking for other causes), but clearly many people are not. I hope there are more doctors out there like yours who really went after the root of your pain and may have found an answer. Do you still have your GB? Do you think the DIDA scan would be helpful in evaluating for SOD post GB removal? We have discussed the likelihood that the HIDA scan very well may not be.
Kris and Karen, hope you are feeling better soon too!! Karen, if I were there I would have gone with your husband to yell at the doctor! The way some of you have been treated by doctors acting like you are crack addicts really adds insult to injury.
I’m quite sure SOD type111 exists but it’s hard to diagnose – impossible without manometry- and there are a lot of other conditions that mimic the symptoms. What is clear is you must not cut a perfectly healthy sphincter as a test treatment – which is a fairly common practice. I think this is where botox has a crucial and under used diagnostic role in type 111 but it seems a simple DIDA scan can accurately rule the SO out in some cases.
I’m not sure where I am now but it’s clear I’m going to have to figure this out myself – as I’ve run out of tests. What I need is a doctor House and he’s only on TV.
I’ve been reading up on chronic pain syndromes and new medications that are proving successful in controlling hyperalgesia. Naloxone looks promising but I just can’t accept this is the problem in my case.
I’m a bit concerned about the doctor being unable to actually test the SO and get a canula in the duct. Her report says it’s due to the angulation as a result of the divisum and not stricture. I figured if she can’t get a canula in there it must be a problem with it emptying but she doesn’t think so and the DIDA scan seems to prove this.
What amazes me is I had an endoscopy, CT scan, MRCP, US and none picked up the divisum or the diverticuli. The second pancreatic duct exit is quite large and the diviticulum is 5 mm – larger than many cancers so….? I think it’s clear folks with negative tests results need to keep pushing and get the best help they can find.
My GB is intact and the DIDA scan found a 96% GBEF (ejection fraction) at 60 mnutes. So it’s at least it’s ejecting properly. As she says, this most likely rules out the SO as a problem. However I just read you can have quite bad chronic GB inflammation and a normal DIDA scan. You’d think the stimulated contraction with CCK would at least reproduce pain but apparently this is not always the case.
So a GB problem is still possible but I’m now at the stage where the only way to find out for sure is to remove it. I’m working from signs and symptoms now to try to figure this out.
Since it’s flares with opiates but propofol is OK, normal GBEF – maybe not a GB problem. Drinking water significantly relieves attacks so does sub lingual nitrates – sounds like smooth muscle spasming with some sort of food blockage stimulating attacks.
The colonoscopy I had only goes to the terminal ileum (upper end of the large bowel – beginning really if you go top to bottom ) the endoscopy only goes to the first half of the duodenum. That leaves the remainder of the duodenum, the jejunum and the ilium unchecked ie most of the small intestine. Given they’ve already found one diverticuli it seems quite possible there are more and this is the root of the problem.
Treatment is antibiotics anti inflammatories and a high fiber diet so it’s worth a try starting here.
For those reporting recurrent problems with endoscopic ES I think I’d try progressive stenting first and avoid re-cuts but I’d be concerned about ductal damage. The doc told me the heat from the cutting wire is what causes scarring and potential reclosure. When you later re cut it, you add more heat damage and scarring and a second reclosure is almost guaranteed.
Open sphincteroplasty is ultimately a better solution but apparently you’re in hospital for 7 days after on an IV feed tube afterward – doesn’t sound like fun.
Hi Brett,
Glad you are doing well. There are some commonalities that we all have that don’t seem to be examined in available research Data. We know that pancreas divisum effects 7% of our global society, but do we know what percentage of these also have SOD ? Another stat I once researched was that 1/1000 get pancreatitis just from pancreas divisum alone. Yet PD is so extremely hard to find, I know in my own personal case it took a CAT SCAN w/ a contrast and a “PERFECT” result for my pancreas specialist to go with the Radiologist and look at my CAT slice by slice in over 100 slices to find my pancreas was COMPLETELY severed with divisum. Also my labs for the past 5 years have been perfect, but my ducts were too thin and immature to perform manometry. My original Sphincterotomy, was amazingly sucessful for 4 months and BINGO it wore off with my next attack + minor papilla sphincterotomy/reovery included lasted 5 ms. with 1 month total recovery and then while placed on Neurontin for 2 ms for MS prodrome, absolute total resolution of ALL SOD problems until I have to come off the Nuerontin for 10 lbs of weight gain. Then I go it alone back on Enzymes only for 2 months and Bingo . . .another Serious SOD attack. We add Ursodial (Synthetic Bear Bile) to the mix and I progress to eating like a 5yr old. Then 2 weeks later and Bingo. . . I’m back where I started. So, now I’m on 4 Pancreatase MT20’s per meal, 300mg Usodial per meal and 1200mg Nuerontin per night for sucessful pain relief and happy that yesterday I had a cupcake !
One connection to my atttacks is that they seem to have a similiar precursor, and that is antibiotic treatment. I have IC of the bladder since I was 5 and we are more prone to bladder infections. My last two traveled to my kidney and lasted a very long time 3 1/2 weeks and 6 weeks respectively. Even my very first serious SOD attack came after a bout of antibiotics. I’ve read that Doxycycline and Macrobid are two offenders and I was on both from August 19th to Oct 5th along with Ciprofloxin.
We live in a very chemically treated society and I know in these posts we all speak mainly about our SOD, but perhaps we should also start sharing other diseases we have that might be relevant to begin to start seeing the patterns. I don’t mind being the 1st:
Interstitial Cystitis of the Bladder 38yrs.
Hashimotos Thyroid 27yrs.
Basilar Artery Migraines 20 years
SOD 5 1/2 years
Possible MS Prodrome 6 ms.
Flares brought on my Hep B Vaccine & Antibiotics.
Complete 100% Pain Relief from Gabapentin/Nuerontin
STILL BEING ABLE TO FINISH MY MEDICAL DEGREE AND HELP OTHERS : PRICELESS
Many, Many thanks Nymph,
(Sorry couldn’t resist the name contraction) Your response is a big help.
I’ve just done a lot more reading on divisum (it was only touched on in my degree and I don’t specialize in this area so I never use the little I did learn). After more reading I’m at a bit of a loss where to go.
It seems in the vast majority of cases PD are asymptomatic but it can rarely cause pancreatitus alone as you say. I suspect this is by partial blockage of the minor duct (ventral I think) which carries 70% of the pancreatic fluids to the duodeneum with the major duct inside the ampula carrying only 30% – and your case seems to indicate such – given the initial success of sphincterotomy to the minor papilla.
But why did they go for pancreatic enzymes if all your blood tests for enzyme levels were normal – intuition?
What I don’t understand is how PD can be the source of symptoms in the absence of documented pancreatitus or elevated enzymes as your case – and several websites suggest ? Perhaps minor blockage insufficient to elevate enzymes may be an issue – especially with ducts too narrow to cannulate? How did they decide to do the sphincteroplasties without manometry evidence?
I had both ducts cannulated , both manomerty tested (with normal pressures) and both injected with die for the ERCP. My wonderful doc took hours investigating and expected some pretty bad symptoms afterward. Yet I got no pancreatitus or increase in symptoms at all following the exhaustive testing. If I had pancreas issues I think they would have shown up after all that.
So I suspect as the doc says, my PD is asymptomatic but I’ve just written her to see if there’s any chance PD can be symptomatic with normal pressures and duct diameters in both ducts just to be sure. I’ve ask about the diverticuli as well.
I’ve just found that having a diverticului close to the ampula can be a real problem causing mechanical distortion and obstruction of the CBD resulting in cholangitis, fever jaundice and mid abdominal pain . ( I have one out of 3).
Furthermore a negative DIDA scan apparently doesn’t rule out low grade billary obstruction or SOD only higher grade obstructions in type 11 and 111. It also has no bearing at all on acalculous GB disease.
So it could be symptoms from severe IBS as the doc now thinks, PD, diverticuli causing obstruction, diverticuli elsewhere with diverticulitis, acalculous GB, and still possibly SOD.
I’m just not sure where to go from here but I wish lyrica/gabapentin worked as well for me. I’m very happy to hear it works so well for you. I was on 100 mg per day 2 times a day – a pretty low dose – maybe if I tried again with a higher dose?
Just reading your history and your cheery attitude puts me to shame. All the best with med school – we sure do need more female docs. The one I just saw was fantastic.
If she’s kind enough to respond top my email questions I post an update.
Hello Brett,
My code name is due to my practitioner status, as my real name is very unique, and as I collect water lillies, this is Latin for water lilly !
But I have some clarifications on my case for you. The terms SOD and “Biliary Diskenesia” were thrown around for the first time in my life just 1 ms. prior to my cholecystectomy. But at that time I was 38 and told I was too young in the state of NY to have an ERCP w/o findings, that is no stones blockages or positive labs.
However I did have a low Ejection fraction in my very painful Hida-Scan test. This confirmed the need for a lap chole in their minds and it was done. In recovery my significant other came to visit me and saw everyone silently sipping tea and apple juice and I was the only one crying my eyes out in pain begging for more pain meds and telling him not to leave and that something was very wrong, but he kept saying stop crying, nobody else is ! 48 hours later I was rushed back to the ER from my home w/ a subsequent bile leak in the Fossa. (Sphincters out of hand perhaps ?)
Although this did delay my going back to work by a couple of weeks, I did eventually go back to work and eat again. And 3 ms. later I had Hep B shot 2 and Hep B shot 3 was given 4 ms. later, thats when I noticed yellow stools and tea colored urine. Figuring I had had too much ice tea that week, I shrugged it off. I left for India on an adventurous vacation. But when I returned, July ‘05, my doc was vacationing and I went to another for a check up due to contacting an infected finger which was healing and a case of traveler’s diarrhea. She said,”Hey I have these enzymes samples here, that are new and might help your digestion a bit while you recover completely.”
I said, “I know what enzymes are, the natural store gave them to me a year ago when my gall bladder pained me out of the blue for 2 weeks and then vanished”
“Oh well these are stronger, you’ll like them. Nobody’s using them, so take the whole box !”
But after a couple of days I thought “I’m not taking these, these are for people who have Pancreatitis and I don’t have that !!!!”
My own Dr. concurred when she returned and I shelved them in my cabinet.
It wasn’t until Sept ‘05 that I was screaming bloody murder w/ RUQ pain boring through to my back and radiating up to my right shoulder, the day after eating fried cheese blintzes and a chocolate mousse desert at a local diner.
I was hospitalized for 8 days and again they thought ERCP should be done to Rule out SOD and after a 2 day NPO prep, the test was denied due to my age being too young (Now 39) and absence of findings w/ the risk of pancreatitis. Now on the 8th day I received a call from my friends who worked the USA military base and they told me that it was very strange that I was being denied this test due to a risk of pancreatitis when I had the very same SYMPTOMS ! So I was for warned !
In the months to come I was scheduled various tests endoscopy, colonoscopy and MRCP. MRCP was the only test to show a finding of an inflamed pancreatic head, but it was possibly to be dismissed as an artifact due to its showing on only 1 axial slice. I knew better.
My care was transferred to a sister hospital’s care and I had an appt. w/ a Liver specialist. After my first 5 minutes of speaking he said, “I’m sorry I’m not a pancreas specialist, but I’ll find you the best I know “. By the time I met her, it was 4 ms. later and I was 30 lbs lighter. After a duodenalcolonoscopy and perfect labs, no sign of celiac or other pathology, She scheduled me a CAT w/ a contrast and a EUS. Well the CAT w/ the contrast at first was reported perfect but she made an appt. to meet w/ the radiologist and they spent hours looking at every slice and finally pieced together pancreas divisum. With this diagnosis she and her team treated me for 2 years on ironically the same enzymes I had in my cubbard which I told her I had been using on my own and that they were the only way I could eat with some reduction in my pain. Every year I was given an MRI as a check up and they just kept ordering enzymes. Until my attack of July ‘08. Her hospital, New York Prestbyterian, could do nothing for my attack except give me a basilar artery migraine with stoke symptoms from inducing a fast. And coerce me into having another endoscopy with no findings. They Dilauded me into oblivion and sent me home telling me to follow up with my GI. MY GI WAS THEIR GI !!! So, I knew what I must do. The previous December ‘07, I had gone through a terrible shock and couldn’t eat with out burping and had a burning pain in my stomache. The ER thought it could be an ulcer and I looked in my providers book and found a GI in my town of Queens, being that I just didn’t feel up to going all the way into Manhattan, in the winter when I felt so sick. While I waited my turn, I saw a sign posted that he had won a teacher of the year award from his medical students for endoscopy. So, when he too wanted to do an endoscopy on me in his office to rule out an ulcer the next day. I of course agreed. But, interestingly enough when he had asked for my history and I explained, he knew I had described what his SOD patients were, but being asymptomatic at the time and living on enzymes sucessfully he let that matter go. My case of gastritis looked to be chemical in nature as my insides were raw. But after 1 ms or Nexium, it all cleared up. And emotionally I got over my shock.
So, in ‘08 when I was told to return to my GI I now decided he was my GI ! And after my story revealed, I had now had 2/3 of my medical degree completed and his diagnosis of SOD was simply a validation of my self diagnosis and I agreed to an emergency Sphincterotomy. He explained the manometry procedure done in Indiana but said, he did not do it himself and I opted for the sphincterotomy regardless. When he got in there, he found my Spincter of Oddi completely swelled shut and he gave it a giant opening ! And 4 ms later when he was at a loss as to what to do with my case, I went to Indiana for a 2nd oppinion and another ERCP and this time a stented Minor papilla Feb ‘09 and I have still had to rely on Enzymes or Nuerontin since then. And I did have the pain change after the procedure as it now had travelled up to my xiphoid process and I though I was having a heart attack because it radiated up over both sides of my chest. I now for the first time had elevated LIPASE post ERCP, however such resolved. Other than some lymph nodes at the site of the minor papilla stent, the EUS findings were unremarkable.
My most recent attack has me on the Pancreatase, Ursodial & Nuerontin(Gabapentin)which is an anti spasmotic and anti epileptic. (I’m afraid you are a bit confused, Lyrica (Pregabalin) is a common RA medication along w/ treating other auto immune pathologies.) I am not taking the latter. I did titrate up to the dose of 2400mg this past summer, but now, I’m trying to take the minum of 1200mg on during my eating hours, thinking my weight wont get out of hand. If herbs work to any sucess, our next plan is for me to take the Nuerontin every other day. As it has proven to keep my migraines at bay along with my MS symptoms.
My area of specialty is acupuncture, so I finished my degree in April ‘09 and have my own practice.
I do believe your dosage of Nuerontin to be a baby’s dose, and since this needs to be titrated up every 2 weeks as needed, and I’m a 150lb. 5′7″ female who needs 100mg per waking hour respectively maybe you should try again.
I’m glad my info can help you, but I thought that I should add : Between Jan 2003 & Dec 2007, I did use Vicodin for IC & Migraine (not knowing that it simply drugged me into a migraine of longer duration.) I always wondered if this is what truly caused my sphincters failure in the end, but how does one explain my attack of July ‘08 which is basically still ongoing despite RX, a 2nd spinterotomy and deitary restrictions, and no Vicodin for now almost 2 years ?
I hope you can deaden your pain symdrome with proper levels of Nuerontin(Gabapentin), because if it helps me with 3 of my problems it could help you with one !
Nymphaea
Thanks Nymph,
Your story is amazing – and gives me inspiration not to give up yet.
Lyrica is Gabapentin/Neurontin in Australia. Acetaminophen is paracetamol here for example – quite confusing and it’s tripped me up a few times.
I thought the dose of neurontin was way too low as well but the GI specialist insisted this was the effective dose in my case and more would bring on side effects.
My symptoms just make no sense to me at all and I just can’t accept that they are due to IBS or even visceral hyperalgesia alone.
I get early satiety with ever meal after about 5 minutes and can only eat small amounts. This usually progresses to a lot of pressure and sometimes pain in 10 minutes. Usually the pain is tolerable but I get frequent attacks that are not.
During the attacks I get sweating, elevated HR, hot flushing with waves of nausea and can black out if standing.
Opiates, codine, caffine, alcohol, wheat bran, SSRIs (effexor) large meals and tomato paste are definite triggers of severe attack. Drinking a lot of water and using the nitrate spray definitely helps.
Like you I used to get bright yellow watery diarrhea with each attack but this has stopped since I’ve been taking doxipin – (a TCA and anticholenergic).
Prior to the endoscopy 10 months ago I only had intermittent attacks with minimal pain between. Now I have constant pain with frequent attacks.
Following the recent endoscopy and ERCP with propofol
I had no exacerbation so the anesthetic (and IV morphine after for the attack) was definitely the trigger and not the actual proceedure.
Given it seems the now the billary and pancreatic ducts and sphincters are OK. That only leaves small bowel diverticuli, gasteroparesis and maybe acalculous GB. I definitely have a motility disorder and get a lot of loud rumbling.
I just can’t believe I can get this pain level with no evidence of pathology. The doc I saw for the ERCP has agreed to answer some questions for me so I may have more information soon. In the meantime I think I’ll get some more neurontin.
3 out of the 5 of the GI doctors I say thought that the pancreas divisum was a bad things contributing to my problems. 2 out of the 5 thought well allot of people have that and it was not a part of the problem, so it seems that GI doctors can’t agree on that.
I thought that having an ejection fraction of greater than 70 could be as problematic as having a low ejection fraction, but I am not sure where I read that.
Well guys, I guess this report explains everything if you want expert care , go to the country with the most people. Looks like India is handling this much better than the USA !!!
Pancreas divisum (PD) is the most common congenital variant of the pancreas, affecting 5% to 14% of the population. The ventral duct only drains the ventral pancreas through the major papilla, whereas the majority of the pancreas drains via the dorsal duct through the minor papilla. We report the case of a 21-year-old woman with recurrent acute pancreatitis who presented with the rare finding of choledochal cyst and pancreas divisum (PD). She underwent minor papilla sphincterotomy and pancreatic duct stenting. Comparable literature findings of PD and choledochal cyst are discussed with regard to the presented case.
How to cite this article:
Arulprakash S, Balamurali R, Pugazhendhi T, Kumar SJ. Pancreas divisum and choledochal cyst. Indian J Med Sci 2009;63:198-201
How to cite this URL:
Arulprakash S, Balamurali R, Pugazhendhi T, Kumar SJ. Pancreas divisum and choledochal cyst. Indian J Med Sci [serial online] 2009 [cited 2009 Nov 18];63:198-201. Available from: http://www.indianjmedsci.org/text.asp?2009/63/5/198/53166
¤ Introduction
Pancreas divisum, resulting from a fusion failure of the ventral and dorsal pancreatic buds and characterized by a dominant Santorini duct, is considered to be a predisposing factor for recurrent attacks of acute pancreatitis. Choledochal cyst disease is dilatation of the extrahepatic biliary tree or intrahepatic biliary tree or both. It is a potential premalignant condition, and therapy of choledochal cysts should be surgical. Association between pancreas divisum and pancreatobiliary malunion has been reported in literature. Very few reports of association between pancreas divisum and choledochal cyst are described in literature.
¤ Case Report
A 21-year-old woman was admitted to our hospital with recurrent episodes of postprandial right upper quadrant abdominal pain, nausea and vomiting. She had an uneventful pregnancy and had delivered 3 months back. On physical examination, she had mild tenderness in epigastric and left hypochondrium region. Findings of systemic examination were otherwise normal. The results of a complete blood count and the serum levels of glucose and electrolytes, as well as lipid profile and calcium level, were within the normal range, as were the results of renal function tests. Total bilirubin was 0.4 mg % (normal, 0.1-1 mg %); AST- 44 U/L (normal, <40 U/L); ALT- 58 U/L (normal, <40 U/L); and alkaline phosphatase- 103 IU (normal, 35-135 IU). Serum amylase (638 U) and serum lipase (762 U) were elevated. Ultrasonogram of abdomen showed edematous pancreas. CT scan abdomen showed bulky pancreas; a lobulated non-enhancing intra-pancreatic collection in head and neck of pancreas, measuring 4.4 × 3.1 cm, with perilesional fat stranding. Upper Gastrointestinal endoscopy findings were unremarkable. Patient was treated as having mild acute pancreatitis, and she improved. While on follow-up after 6 months, she was admitted with similar episode, and then the pain was associated with hyperamylasemia (S. amylase, 1728 U). Magnetic resonance cholangio pancreatogram (MRCP) done during the episode showed type I choledochal cyst with pancreas divisum and resolving pancreatitis [Figure 1],[Figure 2]. Endoscopic retrograde cholangio pancreatogram (ERCP) confirmation and endoscopic minor papilla stenting and sphincterotomy were done. Patient was symptom free on follow-up, and excision of the choledochal cyst was planned.
¤ Discussion
Pancreas divisum results from a failure of the ducts of the embryological dorsal and ventral pancreas to fuse, the pancreatic exocrine secretion is drained preferentially via the Santorini duct and minor papilla, with only the uncinate process and part of the pancreatic body emptying through the duct of Wirsung and ampulla of Vater. Association of PD and recurrent pancreatitis may be attributed to a relative obstruction of the pancreatic juice flow through a relatively narrow minor papilla (dominant dorsal duct syndrome), causing increased intraductal pressure, duct distension, pain and pancreatitis. [1] This hypothesis is indirectly supported by cessation of recurrent pancreatitis attacks after endoscopic treatment in some patients.
Variants of pancreatic ductal abnormalities include classical PD type I, with total failure of fusion; type II, with dorsal duct dominant drainage; and type III, incomplete divisum where a small communicating branch is present. ERCP and autopsy reports suggest an incidence of PD of approximately 7% (1%-14%). Symptomatic (less than 5%) PD patients develop acute, recurrent, idiopathic pancreatitis and postcholecystectomy syndrome. [1]
Choledochal cyst disease is dilatation of the extrahepatic biliary tree or intrahepatic biliary tree or both. Choledochal cysts are rare, occurring in approximately 1:100, 00 -150,000 live births. [2] The majority (80%) of these are diagnosed before 10 years of age. Choledochal cysts are generally classified into 5 types, using the Todani modification. [3] The environment within a choledochal cyst is one of bile stasis, frequently resulting in the formation of stones and/or sludge, as well as biliary tract infection. The classic triad of right upper quadrant pain, mass and jaundice is seen more commonly in children. Adults may present with cholangitis or pancreatitis. The anatomic variant of a long common channel for the common bile and pancreatic ducts is known to be associated with choledochal cysts. It has been proposed that this anatomic variant promotes reflux of pancreatic juice into the common bile duct, resulting in inflammation, weakening of the bile duct wall and dilatation. [4]
Pancreatobiliary malunion is a congenital anomaly in which the junction of the pancreatic and biliary ducts located outside the duodenal wall, giving rise to a long common pancreatobiliary channel with a high risk of biliary tract carcinoma. [5],[6] Absence of a sphincter at the pancreatobiliary junction allows regurgitation of pancreatic juice and results in cystic lesions of bile duct. [4] A similar hypothesis of a significant reflux of pancreatic juice to the bile duct can explain the association of choledochal cyst with pancreas divisum. Cystic bile duct anomalies require treatment due to 2 major reasons: first, the pain or recurrent episodes of cholangitis and pancreatitis; second, the malignant potency with a high risk of developing cystic adenocarcinoma of the bile duct. The type I cyst has the highest predominance of cancer, followed by the type IV cyst, with type III being the least common cyst harboring cancer. [7] The management of patients with choledochal cysts consists of immediately treating any acute biliary tract process and planning an elective operative procedure. Surgery includes excision/ hepaticojejunostomy, ERCP sphincterotomy (type III cysts) and lobectomy (intrahepatic cysts). [8]
Due to paucity of reports, the exact incidence of association of PD with choledochal cyst is largely unknown. Clinically significant PD should be intervened by surgical sphincteroplasty or endoscopic methods (sphincterotomy, dilatation, stenting). Minor papilla endotherapy is most effective in patients with pancreas divisum and with recurrent acute pancreatitis with or without ductal changes, although patients with chronic pain and pancreas divisum respond poorly.
Bile duct resection, papillectomy, hepaticojejunostomy and jejunal reinsertion of the uncinate pancreatic duct in the same jejunal loop have been reported in literature. [9] We planned a similar procedure for this patient. As she was a lactating mother, she decided to delay surgery by few months. Endoscopic minor papilla sphincterotomy was performed in this patient to prevent a recurrent episode of pancreatitis and discharged with advice of definite surgery.
To conclude, pancreas divisum with cystic bile duct lesions is a rare anatomic association. Significant reflux of pancreatic juice to the bile duct resulting in bile duct cyst can explain this association. Therapy should be a surgical resection of choledochal cyst under consideration of all particular individual anatomical features, as these bile duct anomalies represent precancerous lesions.
It’s easy to read articles like this and assume that PD must be the smoking gun.
But it seems a great many folks with PD are asymptomatic and the rate of problematic PD is only slightly higher than normal populations.
I have some real suspicions in my case that PD must be involved but when you have normal duct diameters, no dilation, normal enzymes with no indication of pancreatitus, and normal manometry testing it’s hard to persuade the docs to do something.
The statement in the article that patient with PD and chronic pain do poorly is not encouraging as well.
I might see if I can convince the docs to trial botox or stenting.
You’re the best! I love your attitude! The only previous medical issues I had were horrible menstrual cycles and subsequent uterine fibroids. I had a partial hysterectomy in 1991 at age 31. I called it my 2nd birthday for many years. I had no further issues until 5 years ago, when I had a large complex ovarian cyst that ruptured before the scheduled surgery. The surgeon doing the procedure was supposed to remove both ovaries. He told me he was too tired to take the right one out after struggling for 2 1/2 hours to remove the left one through the lap procedure. 3 years ago is when my URQ pain began and so did this journey. A colonoscopy 2 1/2 years ago discovered severe abdominal adhesions. It took the dr. an hour and a half to get the scope through. NOT FUN! He advised me to go straight to the ER if I ever had severe abdominal pain. 6 mos. later was my 1st ER visit with all the usual testing coming back normal. I think it was that day I began to hate the word normal! Numerous ER visits, a hospitalization last summer finally landed me back to the dr. performing the colonoscopy. He ran every test imagineable. I did comment to some friends that he, too, was a Dr. House with out the Vicodin addiction!
As it turns out, he used to work with Dr. Freeman and also did ERCPs before leaving to start his own practice. He was the first to mention SOD. He send me to Dr. Freeman in Jan. of this year. An EUS that month determined pancreas divisum. Dr. Freeman wanted me to have surgery for lysis of adhesions before he would do the ERCP. I had that in March. During that surgery, it was discovered that my remaining ovary was bad and had to be removed, but they didn’t do it during the adhesion surgery because they didn’t have signed consent. Dr. Freeman wanted me to have my GB removed during that surgery in the hopes it would help since I had to have surgery anyway. In May, my remaining ovary was removed along with my GB. The adhesions were back and were lysed again. In June, I’m back in the ER, hospitalized this time for testing and pain management for 3 days. (I’d voluntarily gone off my pain meds post surgery, thinking I was going to be fine. It was there that I was told that both of my conditions were so painful that I should never have done that.) I had an MRCP-S while hospitalized. I think that is the test that showed dilation in my CBD. I had my ERCP with the temporary stent in July, with no improved results.
Thanks for listening to my long saga. So, I have the 2 conditions. Abdominal adhesions, which can cause partial intermittent bowel obstructions and SOD II. Dr. Freeman had me consult with a surgeon he works with at the U of M regarding another lysis of adhesions surgery. The surgeon said he would consider it in Jan. or Feb. next year so the adhesions would have more time to “settle in” after the last surgery. Both times, there were significant adhesions wrapped around my gall bladder in addition to many other areas. Oh, I forgot to mention that the adhesions were caused by the fluid emitted from the cyst that ruptured 5 years ago. I guess they can cause excessive scarring. This makes sense to me because both my sons were born C-Section, and I had the partial hysterectomy. I had absolutely no problems after those surgeries until a couple years after that cyst ruptured. I keep wondering what triggered all of this to become active. I’ve read that one can begin having issues with adhesions many years after the event that caused them occured. I’ve also read of women who have endometriosis who have severe abdominal pain and that endometriosis is, in efect, adhesions. . I’ve also wondered whether or not I had undiagnosed endometriosis for years prior to the partial hysterectomy.
It will be interesting to hear from others if they experienced anything along these lines.
Thanks again for reading this. Long, I know, but I really learn from others experience and circumstances and hope to give back the same.
Hey Kris,
Already our stories have more in common ! I had 1 bikini line C section done in 1986, a partial of that opened w/ a laparoscopy Ovarian Hemoraghic Cyst removal 1988, a 2nd C section in 1988, a 2nd Ovarian cyst removal w/ partial opening again 1995, and then a partial opening 1 more time for a tubal ligation in 1990. I most certainly have adhesions and of course completely severed rectis abdominis ! Although adhesions alone can go anywhere and wreak havoct, perhaps, all those knock out drugs for all those procedures are what we need to look into deeper. After all the doc’s are admitting to seeing a rise in SOD cases like never before, perhaps we PD patients are more at risk for chemically induced SOD ? See how comparing other notes really helps ? ! Maybe our group will be the one that makes some headway in the solving of this MEDICAL MYSTERY TOUR !
Funny you should comment on Dr. House….as I’ve gone through this journey, I’ve joked that I need him. I think I did…in Dr. Freeman, but he’s not crazy!
A couple more comments. My brother had the sphincteroplasty beecause they couldn’t reach his SO. Now I’m wondering if it’s because he has divisum. All I know is that he has done better with this horrible condition after a long recovery from that procedure than anyone I communicate with who has it.
Also, Dr. Freeman has told me in this past that he thinks my divisum is incidental to my condition. I’ve never really asked why he thinks that. It seems so many who have that have these issues. That’s another question for the list on the 7th!
Incidental my ass, Kris, maybe he can’t explain its relevance but that’s a whole different story, now isn’t it ? You see our condition wouldn’t be on the top of any GI’s list to solve unless he had it himself . Let’s be honest, it’s too rare and there’s no money in it !
Michele A, & Kris, No I have never had Dilaudid, They give me vicodin10/325 and when I have an episode that needs something stronger I have percocet. But the other night none of that helped, so I went in for the shot, and like you said it puts you in a fog, and decreased the pain for a few hours, then had to take my regular meds anyway. I keep calling to see if I can get some kind of report that has been written about my last tests, but have had no luck.. You would think that if I can be told some gastritous was seen on the EUS, I had low bicarbinates , and they saw some pancreatic insufficiencies, something would be written up or typed up saying that, to support getting my next tests done Dec.14th.
Nymphaea, You are so right… If these doctors went through this there would be a lot more research and possible cures. I need to get back into a more positive mind frame, and out of the rut this lingering episode has caused. I hope everyone is having a good day, take care. Michele/MN
That seems unusual that you couldn’t get your test results if you ask for them. Have you asked for them before and received them? What is your next test? I’m just full of questions today, aren’t I? I know how hard it is to not feel down when we feel so sick sometimes. I was in that same mood last weekend. These flare-ups that linger are really rough and take their toll emotionally as well as physically. If you’d like to talk on the phone sometime, please put your email address on here. I’ll send you my phone numbers. You can call anytime. It will help us both! I hope today is a better one for you!
Brett,
Hi , found another article about your problem but it says very little, basically just that diverticuli can impede the function of the Sphincters. Next time I’ll just send you the link. Wow ! The medication name change is a big eye opener for me, next time I travel out of the country I will be very careful !!! I need Nuerontin as a temp daily soon to go every other day and Lyrica was an experiment for my migraines many years ago and gave me severe muscle contractions ! I wonder how the companies get away w/ it ?
May I ask how old you are ? And how long you had these GI problems ? One article is stating that because the PD is abnormal, the bile flows in erractic ways and actually burns the tissues near the sphincters ! First time I’ve heard it, but, hey its plausible.
Two questions for the whole group, are we ever allowed to have a glass of wine with dinner anymore ? And are all of you mostly vegetarians by now ?
Ok going to have pills and breakfast.
I’m 49 and have had the problem since I was 21. It seems Lyrica may be a different medication than gabapentin but prescribed for the same things in Australia. I ask specifically for Gabapentin and got a script for Lyrica. I assumed it was a brand name for the same generic – now I’m not so sure?
I used to be able to drink moderate amount of alcohol without a problem but no longer.
Given my So and BD was at such an angle it could not be canulated, I think a problem here is most likely and my doc was a bit hasty ruling it out on the basis of the DIDA scan.
Here’s a few extracts that show scintigraphy is not very effective in detecting low grade type 111 obstruction:
Ruffolo and associates evaluated 81 patients with symptoms suggestive of biliary disease but normal ERCP and no gallbladder stones on transcutaneous ultrasound by scintigraphic gallbladder ejection fraction and endoscopic SOM [9]. Fifty-three per cent of patients had SOD and 49% had an abnormal gallbladder ejection fraction. SOD occurred with a similar frequency in patients with an abnormal gallbladder ejection fraction (50%) and a normal ejection fraction (57%).
Four studies [29,32–34] have shown a correlation between hepatobiliary scintigraphy and ERCP with SOM. Overall, it appears that patients with dilated bile ducts and high-grade obstruction are likely to have a positive scintigraphic study. Esber and colleagues [35] found that patients with lower-grade obstruction (Hogan–Geenen classification Types II and III) generally have normal scintigraphy, even if done after cholecystokinin provocation.
Adding morphine provocation
Morphine has been shown to cause SO contraction, as assessed manometrically. The value of adding morphine provocation to hepatobiliary scintigraphy was recently reported [34]. Thirty-four patients with a clinical diagnosis of Type II and Type III SOD underwent scintigraphy with and without morphine and subsequent biliary manometry. The standard scan did not distinguish between patients with normal and abnormal SOM. However, following provocation with morphine, there were significant differences in the time to maximal activity and the percentage of excretion at 45 and 60 minutes. Using a cut-off value of 15% excretion at 60 min, the use of morphine during hepatobiliary scintigraphy increased the sensitivity and specificity for SOD detection to 83% and 81%, respectively.
Laboratory abnormalities consisting of transient elevation of liver function tests, typically during episodes of pain, are present in less than 50% of patients
Given the diverticuli, the angulation, the response to morphine and sub lingual nitrates I don’t think you need to be a rocket scientist to figure out the main problem.
The doc I got was Professor Toouli’s partner. She was good but I’m going to try schedule an appointment with him. If he can’t get in he duct to measure the pressure maybe he’ll consider a diagnostic trial of botox.
Hi!
I really appreciate all of the research you and Brett do! My non-medical brain has a hard time understanding some of the lingo, but you guys certainly pose many interesting theories about the cause of this. I sure wish someone would figure it out. All I know is that there is something very wrong with me!
I do have a glass of wine with dinner sometimes. It does not cause me increased pain. It seems to relax me and helps some. My daily cycle is always the same. I feel pretty good in the am. The pain and nausea begin to increase mid am whether I eat or not. It’s always worse mid day. It used to ease somewhat mid afternoon. Now it just stays and by the end of the day, I am exhausted, really nauseated and feel weak. I’m taking my pain meds now every 3-4 hours as directed instead of trying to stretch them out for 4-6. My dr. at the Palliative Care Center talked about putting me on a long acting pain med last month, but I wanted to hold off for fear of what the effect would be while trying to work. I see him Monday and am on vacation next week, so it would be a good time to start a new medication. No more wine with dinner if I start on a medication like that!
I saw your comments about Lyrica. I was on it for a couple of months and recently went off as I didn’t see any difference while taking it. It seems like it’s a pretty risky medication. I got a survey in the mail from my pharmacy yesterday, asking me to participate and share my experiences as it is a high risk medication. That in itself was enough to make me think I’m better off without it!
Nymphaea-I will be in touch tonight. A friend stopped by last night and it got late, so I went to bed!
Kris, Thank You, Yes I would love to talk.. Well I received the report, but now I’m scared because it said there was a anechoic cyst on my liver. I have tried looking it up, and I’m more confused. My pancreas looked good, and there was no visible sign of pancreatitis or divisum, just an insufficiency and low bicarbonates. Carrie noted on the papers if I had specific questions about it, to contact Dr. Sudell. But when I called his nurse last time, she told me to talk to Dr.Freeman, so I guess I will wait until my appointment on the 14th. My email is meeen1@msn.com
Michele/Mn
Hello buddy,
Not many men with this how did you get so lucky ? Thankfully we’re all out of the box thinkers. I have another lead for you. Proglumide RX . Its an antagonist to CCK. Generally given to ulcer and stomach cancer patients. You and I have another similar clue. We feel sick only 5 minutes after we start eating. Just when a Cholecystokinen would be released. If we stop the CCK release, do we stop the pain ? I had a hunch last weekend and I went with it. Told my GI, but he said no. But it has been given for SOD I found research supporting this. (I know you believe this !) We are all staring at our ducts and valves like we are nothing more than plumbing gone wrong. What if the secret lies in nuerological function ? For god sake if you think of it we’re a hydro electric pump. The bile is the water flowing, but what turns it on and off is the body’s electricity and hormonal nueropeptides such as CCK. There’s a nuerological component here that is not being addressed, because Nuerologists are not GI’s and vice versa. Vagus nerve inhibition ? I’m open to suggestions here, even arguements because there’s too many missing pieces to this puzzle.
I had much the same thought. I get the pain within 5 minutes of eating as well. I figured this was CCK release causing GB contraction against a tight sphincter.
But with the DIDA scan I was put on a continuous CCK infusion. I was sacred witless it was going to cause a severe attack – but nothing happened, no increase in pain.
There’s a big part of the picture missing.
You’d need to be careful with vagus nerve inhibition – it’s one of the 12 cranial nerves and has a role in all sorts of things.
What amazes me is that celiac ganglion blocks work well for folks with cancer – 80% but less well in folks with benign conditions at 40% . So in many cases the pain must be arising from structures that do not send noxious afferent signals through the celiac ganglion. If I recall all the viscera, GB and pancreatic afferents go through the celiac ganglion so????
Hi Michele!
That is frustrating to not be able to get some answers. One of the scary things about getting a report while not being at the doctor’s office when receiving it is not being able to ask immediate questions. Did you already try calling Dr. Sudell’s nurse about this report? Or, maybe you could email Dr. Freeman. I’ve emailed him a few times. He’s always replied within 24 hours. However, he may not want to interpret test results in an email. I’m just thinking as I’m typing. Or, would your PCP be willing to discuss it with you? I feel bad that you have to wait so long for potential answers. I will email you later. I’ve got to get ready for work.
Brett,
One more thing, You said you use an aticholernegic. And in Judi Sohn’s original post she speaks of Gatorade spurring an attack. Electrolytes spurring an attack hmmmmm. I remember something uncanny. November 2005 , me the incredible shrinking woman started telling people she thought she was turning the corner when she started drinking gatorade !!! My sphincter wasn’t opening an closing until I had some electrolytes which stimulated the process. Right ? The same electrolytes which over stimulated Judi Sohn into pain ? What do electrolytes to to nerve function ? What if part of our problem is a potassium/ salt channel exchange malfunction. Wouldn’t Gatorade throw that all out of whack but initially shock the SOD into action ?
I can get significant relief by drinking a lot of water as soon as I feel an attack coming on.
At first I assumed I was clearing some sort of blockage – and still consider it a possibility for something like gastroparesis – but no bezors were found on endoscopy.
I know the osmotic gradient plays a big role and the SO is sensitive to hydration status. I imagine electrolyte balance is also critical.
I also find walking helps but strenuous exercise is a real trigger.
Regarding the anticholenergic all the ones I have tried have been unsuccessful – scapolamine, atropine hyoscamine etc.
The TCA I’m on – Doxipen has an anticholenergic action – but I don’t think this is the primary mechanism of action.
It may be possible that direct antispasmodics like mebeverine or trimebutine are more effective. I don’t think they are available in the USA. Also the serotonin modifiers like Alosetron and tegaserode are worth a look but they have also been pulled from the market in the USA – and one was only recommended for women – zelnorm I think it was called.
Lastly baclorfen may be worth a try as well – it’s a pretty powerful muscle relaxant.
Kris, I can’t wait to hear from you, I talked to Carrie and she gave me his email but it came back to me, so I must of did something wrong. I hope everyone has a good pain free weekend.
Hi Brett
I was working in pharmacy for 17 years prior to venturing back to uni to study nursing , I knew of a neuro physician in Ipswich who used to prescribe Lyrica for a few of his patients. In saying that I finished 10 months agao in pharmacy so within that time the government may have taken Lyrica off the PBS. We used to have a far greater number of scripts for Nuerontin/Gantin , being the better drug I think .We had Lyrica on our shelves because of this one doctor’s patients getting their scripts at our pharmacy , but in defiantly wasnt a popular one.
I work in a pharmacy still and we do see alot more prescriptions for gabapentin then lyrica. I am on Lyrica but told my dr that I am weaning myself off of it bacause it was making my eyesight blurry and was affecting my driving. I didn’t think that it helped any anyway. I was on Gabapentin before that but I think it stopped working so the dr switched me to the Lyrica. They are not the same medication. They are both used for nerve pain but are not the same thing.
Kris,
I went to my new pain dr yesterday and I really liked him. He said that I haven’t been taking enough of the medication to get the pain under control. He changed me to a long acting pain med three times a day (oxycontin) and then prescribed Diluadid for breakthrough pain. I wanted to try it this weekend because I don’t try new meds until I have a couple days to see how they are going to affect me first but the pharmacy was out of the oxycontin until Tuesday. I can’t believe that I am taking these meds. I sure didn’t see this in my future! The dr said his goal is to try to get me to even out with the pain and not have the highs and lows anymore. He said the body can handle alot of pain meds if you truly are in pain. You need to match the pain level with the medication in your blood levels. He said I wasn’t taking enough of the pain medication to get the blood level up to match it and therefore I kept having these spikes in the pain. I always try to take the least amount of pain medication I can because it freaks me out that I have to take it in the first place. I guess that wasn’t the best thing to do. I was real happy that he knew what SOD was! He wants to see my in a 2 to 3 weeks to see how I’m doing. I was real impressed with him. My husband is so relieved and excited that this might actually help get my pain under control.
On a happier note..my daughter is stationed in the Air Force here and right now she is on “deployment” at an Air Base that is only 2 hours from here so I get to see her alot. She asked if I would be interested in hosting some soldiers for Thanksgiving that are away from their families and are getting ready to go to Afganistan. I said I would love to! So we are going to have extra guests for Thanksgiving and I can’t think of a better way to spend it! Please think of all of our soldiers that are away from families this holiday and pray for their safe return. I also have a son in the Air Force that just got back from Kuwait and my daughter served in Afganistan 2 years ago so I am very blessed to have them home safe.
I hope everyone has a nice relaxing weekend.
I’m seeing my pain management doctor tomorrow. He talked to me about going on a long acting pain medication. I said I wanted to wait another month to see how things go. Well, if he’s still willing to do it, I’m going to. I can’t take these spikes, either. I have to take the oxycodone every 3-4 hours. Like you, I tiey to take the least amount. I’ve discovered that taking them as prescribed every 3-4 hours helps instead of waiting 4-6 like I used, does help. I can definitely tell when it’s time to take them again as the pain is starting to spike at about 3 hours. I hate having to take them, too. It’s the only way to have some semblance of normalcy in my life. I’m on vacation all of this week, so it will be a good time to see how the news meds he may prescribe will affect me before trying to work while taking them.
I’m so happy your kids are home safe. You will have a wonderful Thanksgiving with your extra guests. I’ll be thinking of you, your family and your guests and wishing them safety while in Afganistan.
I had my 3rd ERCP Thurs. just got out of the hospital today from the pancreatitis. My sphincters were both tight only 6 months later from the last ERCP. The pancreatitic stent did not prevent the pancreatitis again. The MD said that the duct spasmed like he had not seen in anyone else before, probably why baclofen works the best for me. The side effects stink.
Kris,
The duration of action for oxycodone is 3-4 hours. It completely makes sense that it does not last longer for you.
I am not sure who asked but Lyrica and Neurontin. They are very similar typically it depends on your doctors preferrence as to which they prescribe. Neurtonin is available in generic. All medications have side effects. These need to be tapered and stopped abruptly.
My husband was wondering if others on here had elevated liver enzymes. If so do you know what your levels are? When I went to the ER my ALT was 220 and my AST was 152. I guess it depends on who you talk to if they are concerned about those numbers or not. One dr told me that is high and my GI dr said that is high but not bad. I never get told my amalyse and lipase so I’m assuming those are normal. But then again I never get the figures on the ALT and AST unless I ask for them.
I don’t know what my numbers are. I’ve always been told that they’re normal. I really learned to dislike that word. I know normal is good, but I sometimes wish they would show what I feel! I should ask Dr. Freeman what the pressures were in my common bile duct when he did my ERCP. He just old me that they were extremely high.
Hi Karen, I have been diagnosed with SOD type II. I had a succesful ERCP done in April where both my pancreatic duct and bile duct pressures were high. He cut the muscle in my bile duct and cut my pancreatic duct and placed a temporary stent. My ALT level prior to this, like a month before was 449 (normal is 0-52) and my AST level was 347 (normal 0-36). I still occasionally have pain especially the week of my menstral cycle. I notice it seems to be bothersome when it’s cold?? and of course when i eat or drink certain things. caffeine is a big NO for me as is most processed foods. I’ve learned to live around not eating these things which is fine as long as I can have a pain free day! I have 4 kids to chase after and I’m making up for my missed time from before my ERCP I was worthless.
Hope all are having a good weekend!
Michelle/Indiana
Hi Michelle/Indiana,
I guess your lft’s were high! You have the same triggers as I do. I have always told my male GI that this pain was worse with my menstrual cycle and he said he has never heard of that. I am so happy for you that your ERCP was successful! Was this your first one? My first 2 were great with no pain at all for 2 years in between! I’m just hoping that I can get that again when I have my next one in 10 days..Yikes! I am starting to get really nervous about it now. Thanks for your reply.
Take care
Karen
Wow ! I’m envious 2yrs. pain free from an ERCP ? I have also only had 2, but they were 4ms. & 5ms pain free only . The second one gave me worse pain for 2 ms. prior to the 5 ms. of eating w/o pain, so I guess I had to earn it.
An orthopedic doc once said to me, that during menses, whatever your Achilles Heel is what will bother you.
Nymphaea,
I am going in for my 6th ERCP on Dec. 3rd! Only the first two gave me pain relief. The third one they put in 2 large stents and I have had pain ever since..for 3 1/2 years now.
Hi Michelle, Who did the ERCP on you? I know the answer is here somewhere but I can’t find it. I have put Drs. on hold for right now. I will attemped in the future to find a new Dr. , hopefully one who will listen to me. I’ve had one ERCP and stent, it didn’t help. I gave up going to Drs. after the GI at John’s Hopkins said he didn’t think I had SOD anymore because I don’t vomit. Oh well, I just know if it wasn’t for pain management I would not be alive or wouldn’t want to be.
Hi Robin, I went to Dr. Fogel at Indiana University Hospital. I did get pancreatitis afterwards and was in the hospital a little over a week. But, my drastic change from before ERCP to now I think it was worth it. I can seem to manage my pain now through trial and error and I read this blog everyday which helps.
Karen, Yes that was my first ERCP and I am a little nervous after reading how many have had to have repeat ERCP’s. Although Dr. Fogel told me that I am not a good candidate to ever get ERCP done unless it’s the absolute last resort since I am considered to be high risk for pancreatitis now. I am now 7 months post and nothing as severe as before I had it done. Don’t get me wrong I still have bad days here and there, but it’s not like it was everyday prior.
Good Luck to you on your ERCP I will definately be thinking about you.
Have most of you gotten the pancreatitis from post ERCP? So it does seem most women have more issues with pain around mensus. Has anyone found any ‘tricks’ to help relieve? My saviour has been a heating pad that I use about majority of the time. I use it about everynight when I go to bed. I’m not sure if it helps ‘open up’ the ducts as heat does cause expanding or what?? but it honestly does help. I think it’s my security blanket. lol
I hope you all have a nice evening and happy Turkey Day!
I was also a patient of Dr. Fogel, in Indiana. My pain worsened after the stent placement but not till about 24 hrs after ERCP w/ stent of minor papilla. The pain was so severe above my xiphoid process I thought I was having a heart atack. We were in a Pittsburgh subburb driving and we were 45 min from the nearest hospital. We made it there to find out it was Post ERCP pancreatitis attack w/ elevated Lipase for the 1st time in my life. They gave me something for pain, but its rather a blur for me. Then my regular doc gave me something for pain but I was allergic went into a seizure w/ migraine and the nightmare just snowballed. Finally 10 days later got the stent taken out. And realized I still needed Enzymes to eat and a low fat diet. I wasn’t “Cured” but I could eat more now than I could before the procedure. But 3 ms later I had to go on daily Nuerontin for MS symptoms and I could eat anything I want from an ice cream sundae to a lobster bisque soup to anything in between. But come August I came off the Nuerontin and even though I went back on enzymes right away, after 2 months I had another serious attack and landed back in the hospital for a 3 day stay. So, when I say I got 5ms. relief, after that stent it counts the RX treatment and I don’t know that it should maybe I only got 3-4 ms. non medicated relief. So, I don’t think I would ever be a good candidate for it ever again either.
My SOD does not get worse during my cycle. Just if I go off diet and have some animal product. Yet a cupcake now and then is ok. I think the white wine I had last night caused my pain to feel like a buring pain, yet I had a light beer bud lime, a little over a week ago and it did not hurt at all.
Can not tolerate pizza,Dairy, red meats, OILs, butter or deserts, egg yolks or fat in general,no matter how many enzymes I take, but I notice I can’t even tolerate fat free yogurt or pretzles without enzymes.
Does anyone else have this too ?
Sometimes I wonder if my problem is more pancreas divisum than SOD, since they both have been cut ? Why do most of us keep having problems even after Sphincterotomy ?
Also may I ask my American friends, how do you handle Thanksgiving when you can’t eat what everyone else is having ? Do you bring special food or do you start not showing up to holidays in general ? See, since I am allergic to morphine products, I can only take Nuerontin and keep to a very strict diet. I feel so sad when everyone is eating and having a good time and I’m eating organic pea soup. (That was last Christmas) This Thanksgiving it looks like we are going to a restaurant which means you have to chose from different dinners that are available, now I’m really scared. They won’t have time to make anything special for me, and it will be embarassing for me.
Are any of you on special avoidance diets ? Or are you all on pain meds ?
I did a bit more research and Lyrica and gabapentin are in the same class but different medications. It’s a bit like the cholesterol med statins – lipitor and crestor are different meds but in the same group.
I also found more info on IBS and I think I need to bit the bullet and realize that this is the problem. CCK causes vigorous GB contraction and if the SO was a problem it would have sent the pain through the roof.
But wheat bran give me a severe attack – which is common in IBS. I think the problem here is that IBS is looked up as a mild problem so people with severe pain are misdiagnosed – hence the low success rate for ES in type 111 cases.
It’s interesting in that the response to morphine and nitrate mimics SOD but CCK should rule it out.
Brett -
Are you saying that you are thinking you have some form of IBS and that SOD III
cases are IBS ? I know many (too many) who think they are SOD III but their
doctors are saying IBS so are you thinking that very well could be true. I know
that if I suggest this that they will probably think I’ve joined up with their doc’s
and run me out of what? their websites? ha
Anyway, I would be very interested in how you’ve come to this idea.
Thank you for any information you may be able to give and good to see you posting again.
What I think is going on is what the research now suggests – quite a few separate studies in fact. It seems to show that many – possibly most type 111 SOD diagnoses are in fact a form of IBS – what they call an IBS variant.
I’m not saying this applies at all to types 1 and 11. But EVEN in those with type 111 who were found to have manometrically documented elevated pressures (about 50%) only 8% reported improvement at 2 year follow up after ERCP and ES.
The studies that have found 50% improvement in type 111 post ERCP were all done at before one month post op – during a phase when there is considerable placebo effect. None of these studies were controlled for placebo. And when looked at longer term, the results are far from impressive.
So the feeling now is that even in those with positive manometry in type 111, it’s a marker for rather than a cause of the problem. Further studies that placed recording instruments in the small bowel have found motility disorders and could reproduce the patient’s pain with duodenal distention.
What appears to be the real cause of pain is altered motility patterns and visceral hypersensitivity of the small intestine. True IBS occurs in the large intestine and colon so the pain is typically lower. It can occur concurrently with the above – and in fact typically does.
The altered motility causes all sorts of problems – bacterial migration into the small bowel where it shouldn’t be and the hypersensitivity causes extreme pain. Small bowel divertuculi are common and apparently a result of the altered motility pattern.
In the past few weeks I’ve switched to drinking more water and using normafibe – an insoluble fiber. I’ve noticed significant improvement. I was using a soluble wheat fiber and eventually realized it was a major trigger. I just found out that soluble fibers likely irritate the duodenum and can be digested by bacteria to make things worse in IBS.
In my case at least the evidence is mounting against a billiary or pancreatic etiology – given no exacerbation with CCK and normal pressures and I think all type 111s should consider this possibility before undertaking risky procedures.
I was lucky in that I got no pancreatitus at all from extensive
manometry testing but I picked a specialty center
CCK did send my pain through the roof Ever since my first one June 2004. And the 3 others as well, 2 were before my cholecystectomy and 2 were after but the murderous pain was consistent. This tells me it was always SOD and if they realized it or felt they were able to test for it, I would still have a Gall Bladder, no small “unecessary organ” in Chinese Medicine. Regardless, If you do have IBS, Brett, then fine, but anyone who is that sensitive to wheat should be exploring possibilities of Celiac. Regardless, of what you’ve been told, if you take yourself off all wheat products as a trial, it certainly can’t hurt, the question is, will you improove. Afterall, IBS’ers seem to love their Hyoscyamine RX and you’ve made it clear, it did nothing for you as me. Is your heritage among the Northern Europeans, such as the majority of the Celiac er’s ? Have they completely ruled out Crohns & Ulcerative Colitis ? I imagine after 20+ yrs they have. Illeitis as well ? I mean they know you have divaticulitis right outside your SOD, but they are sure this has no impact on its functioning. Really ? If this was a trial, I do believe that would be called guilt by association. No ?
Nymphaea
I’m curious about the enzymes some of talked about. Does anyone on here use them? I have type II SOD and was curious how this works and side effects.
Thanks,
Michelle/Indianapolis
The enzymes are “pancreatic Enzymes” The type I am most familar with are called Pancreatase (MT20’s.) The measurement in question. A “normal” dosage is 4 capsules w/ every meal. Should you be used to 4+ meals a day, you may find them constipating. Regardless, they have Talc as a binder ingredient and such an ingredient is unecessary and could be harmful in the longterm, but most likely cost effective. For any other info you can Google the RX name I used earlier and read more about your possible contraindications and family allergies.
Nymphaea
Usually multiple, and protrude from mesenteric side of bowel
Pathogenesis thought to be due to a motor dysfunction of the smooth muscle or the myenteric plexus, resulting in disordered contractions of the small bowel, generating increased intraluminal pressure, and resulting in herniation of the mucosa and submucosa through the weakest portion of bowel.
Type 111 SOD and Visceral hyperalgesia:
Sustained benefit is the desired outcome of sphincterotomy for SOD. Undoubtedly, ERCP followed by a night or two (or longer) in the hospital with abdominal pain has a huge placebo effect. Too many of the published studies on SOD therapy have had depressingly short follow-up. Wehrmann et al. (22) found that 70% of patients with type II SOD and 39% of those with type III reported symptomatic improvement 4–6 wk after sphincterotomy. However, at a median 2.5 yr follow-up, the sustained benefit for type II was 60% but only 8% for type III (p < 0.01). These investigators found no statistical difference in abnormal sphincter pressures between type II and type III patients (62.5%vs 50%).
TYPE III: THE (VISCERAL HYPERALGESIA) TWILIGHT ZONE OF SOD
Two explanations have been offered for the poor correlation between the results of SOM and response to ES in type III SOD: (i) SOD may be a marker for—but not a cause of—pain in type III SOD patients, or (ii) SOD has a causative role in a subset of type III patients, but SOM cannot accurately detect this. Personally, I believe that many patients labeled as having type III SOD have a diffuse gastrointestinal motility disturbance, characterized by visceral hyperalgesia and intolerance of gaseous distention. Desautels et al. (23) have shown that patients with type III SOD exhibit duodenal-specific visceral hyperalgesia, with duodenal distension reproducing their symptoms.
The studies:
1. Pain in SOD type III is thought to be of biliary origin with little objective data, and treatment is often unsatisfactory. Chronic abdominal pain without a biological disease marker is similar to irritable bowel syndrome, in which many patients exhibit visceral hyperalgesia. This study tested the hypothesis that duodenal-specific visceral afferent sensitivity exists in patients with SOD type III. METHODS: Eleven patients with chronic abdominal pain after cholecystectomy and 10 controls underwent duodenal and rectal barostat studies to evaluate visceral pain perception measured with a visual analog scale. All subjects underwent psychological testing. RESULTS: Patients with SOD type III exhibited duodenal but not rectal hyperalgesia compared with controls. There were no differences in duodenal compliance between the groups. Duodenal distention reproduced symptoms in all but 1 patient. CONCLUSIONS: Patients with SOD type III exhibited duodenal-specific visceral hyperalgesia, and duodenal distention reproduced symptoms in all but 1 patient. Abdominal pain in these patients may not originate exclusively from the biliary tree.
2.Some patients may be having pain from altered gut motility of the stomach, small bowel or colon (irritable bowel or pseudo-obstruction variants). There is increasing evidence that upper GI motility disorders may masquerade as pancreatobiliary-type pain (i.e., discrete right upper quadrant pain). Multiple preliminary studies show disordered duodenal motility in such patients [88, 89, 90]. This area needs much more study to determine the frequency, significance, and/or coexistence of these motor disorders along with SOD. A recent study [91] suggested that Type III patients have duodenal specific visceral hyperalgesia with pain reproduction by duodenal distention.
3.Patients with chronic epigastric to right upper quadrant pain are often considered to have gallbladder of sphincter of Oddi dysfunction, but standard tests are nondiagnostic. In 62 consecutive patients with this compliant undergoing antroduodenal manometry, we correlated a change on duodenal motility with spasm of the ampulla of Vater/duodenal wall. This distinctive motility pattern occurred and was analyzed in 35% of patients. It is characterized by increased duodenal wall tone with phasic contractions of 19-22 or 41-44 contractions/min or by phasic activity alone. The subjects with spasm also underwent cholecystokinin cholescintigraphy, and 50% showed either significantly delayed gallbladder emptying of hilum to small intestine emptying, or both. The disorder appears to be secondary to a loss of neural inhibitory control and a dysfunctional small-bowel pacemaker. Antroduodenal manometry is an essential diagnostic procedure that complements sphincter of Oddi manometry in evaluation of unexplained right upper quadrant pain.
4.Sphincter of Oddi dysfunction (SOD) is associated with abdominal pain and is treated by sphincterotomy. Of 215 patients who underwent biliary sphincterotomy for SOD in our institution, 26 reported no improvement and 25 of those were found to have pancreatic sphincter dysfunction and subsequently underwent pancreatic septotomy. Nine patients remained symptomatic after the second intervention. Six of those nine patients, and seven of the 16 patients who improved after the septotomy, agreed to undergo an ambulatory duodenojejunal (DJ) manometry. DJ manometry was abnormal in four of the six symptomatic patients but only in one of seven patients who became asymptomatic after endoscopic treatment. We conclude that the persistence of symptoms after endoscopic ablation of the biliary and pancreatic sphincters is associated with abnormal intestinal motility, which may explain in part the lack of response to the endoscopic treatment.
I think firstly insoluble fiber and more water. Then rifaximin
for the bacterial overgrowth possibly followed with a probiotic culture.
Also powerful smooth muscle relaxants like mebeverine or baclorfen for attacks rather than the weaker anticholenergics.
Lastly one of the drugs found to control chronic pain syndromes like nalaxone.
I’ll let you guys know how it works out.
I’m not encouraging anybody to bypass important tests for SOD and pancreatitus. But if all tests are normal and you get a type 11 diagnosis it seems the probability is that it’s a small bowel motility disorder and I’d proceed with caution regarding sphincter ablation surgery.
Me also – but there appears to be no alternatives and surgery sure isn’t curing many type 111 SODs.
I have found that if I get nausea in lying it eases somewhat by sitting up. I also get attacks if I’m upside down for any reason or bent over for awhile. I’m starting to think all those docs that told me a hiatus hernia is asymptomatic might be missing a big contributor.
Hello Everyone, I just wish I was done with tests, so I can get some kind of regimen going instead of just my pain medication. I have tried to watch what I eat, but that doesn’t work. I have looked up a lot of information on pancreatic insufficiency along with my SOD, and since I have to wait until December 14th for my clinic visit and test, I might go and get some vitamins and things on my own.
I wish everyone a happy pain free thanksgiving!!!!
I disagree respectfully with your doctor. Writing a food journal is not a hard task and what you learn from it in your own personal case could teach you and your doctor something about the DZ . Just cause he can’t substantiate claims of trigger foods , doesn’t mean you can’t. Personally when I have an attack, first its no tolerance to fats, then the next month no tolerance to protein & fats and then the following month its fats, protein & carbs.
Can you imagine how far we could come in this DZ if we had a survey to compare the diet triggers associated with the DZ and how many patients would have there concerns validated ?
With knowledge there is power. The proverbial Ostrich w/ the head in the sand never did anyone any good, Except maybe the Ostrich ?
Kris,
How was your dr visit? Did he give you a longer acting pain med to try? I hope so. I started my oxycodone on Tuesday night and took the next one on Wednesday morning about 5 am then went back to bed and I just laid there thinking..”Hey..I’m not in pain!” I was literally pain free for the first time in 6 months! I didn’t want to move for fear that it would go away. That lasted until about noon and I was scheduled to take another pill but I was at work so I didn’t/couldn’t until I knew how they were going to affect me. I am so excited that I can’t hardly stand it. Maybe this will really help!
My ERCP is next Thursday and I am starting to freak out now!! I know I need to do this but it doesn’t get any easier to do!
I hope you all have a wonderful Thanksgiving and can spend it with your friends and family!
Karen
Hi! I’m so happy for you! I also take Oxycodone. It helps alot. It’s a giddy feeling to not hurt so much. The Oxycodone kept my pain at about a 1-2 for the first month. Then another major flare-up hit. It still helped, but not as much. I came out of that one after a few weeks, felt better for about a week and the pain was staying under control with the Oxycodone. Bam. Along comes another flare-up. This last one stayed around for abut 5 weeks! I landed in the ER one day because of it. I’ve been feeling better for about the last week. (Until yesterday again.)
My appt. with the pain dr. was on Monday. I always see him the first thing in the am, which is always my best time of day, plus, I was not in a major flare-up time.I also see a Social Worker there. She had done hypnosis with me the month before for pain management. I have been able to use the technique for relaxation and it can help the pain a little bit, which I told her. Anyway, when I asked him about the long acting pain meds, he said that he had talked to the Social Worker and had heard I had a really good appointment and that he wanted me to try the acupuncturist I was seeing that afternoon before adding any more medication. (He had asked me to try acupuncture, so I did make an appointment. He said the less medications, the better. I agree with that, but I also need to be comfortable. That is the belief he’s always told he holds as well.
I wasn’t impressed with the acupuncturist. I totally believe in the concept of acupuncture, but this guy was way out there. I communicated with Nymphaea about the visit. She suggested trying someone else.
The doctor also told me to call for a refill on my Oxycodonoe instead of giving me my rx like he usually does. He always gives me more than I can use in a month, so I leave the rx at the pharmacy for about 10 days until I need it. I’m going to call them on Monday and let him know about the acupuncturist and the fact that I’m not feeling well again. He was in a hurry as he was late from dropping his daughter at daycare and the traffic. I told him about the ER visit. He seemed a little upset that no one had called him. He said I could have had him paged and he would have come to the ER. I didn’t know it was OK to do that. I told the dr. at the ER that I was a patient of his. I guess I would have thought the ER dr. would have called him if that is the protocol. I will definitely have him paged if I have to go again.
So, now I’m a little, but not overly, worried about getting my medication. None of us need that stress on top of this condition! It will be ok. He’s never been rushed with me before. I think it was just the day. It also makes me wonder what the ER dr. said in her notes. She was kind of a crabby dr., also rushed because they had 4 people come in with chest pain right when I got there.
Thank you for thinking of me! I’m so happy you’re doing better. I really hope you have a great Thanksgiving with your family and your special extra guests. Please pass on my wishes for safety and a quick trip back home from Afghanistan.
Your ERCP is the 3rd, correct? I’m sure we’ll be in touch before than, but know that I’ll be thinking of you on that day.
I am so sorry to hear about your dr and how he treated you when you went to see him. Does he not remember that he is the one that wanted you to try the longer acting pain med? Then when you’re finally ready to try it he forgets that he wanted that? I hate when dr’s do that. My old GI dr would tell me one thing then the next visit it would be something totally different! You’re so right that you don’t need that stress about not getting enough pain meds on top of dealing with this horrible disease. I wonder why he had the change of attitude all of a sudden. Like you I am wondering if it was something that the ER doc said? Almost sounds like it.
It was really nice to have a dr that knew what I had and had been dealing with for years. He said the oxycontin that he prescribed for me was twice daily dosing but he thinks people do better with three times daily dosing and I have to agree with him. By about 8 hours I can feel it wearing off and I take another one. It is supposed to be one tablet every 12 hours. One thing that I don’t like about it is that one of the side effects is sweating and flushing and I get enough of that already with the premenopause that I am going through!
So are you going to call his office on Monday Kris and ask him to prescribe you oxycontin or something else longer acting? Like you said maybe he was just having a bad day. I am so thankful for this new dr I could just cry with relief! I called his office on Wednesday and told his receptionist to tell him that I loved him!!
I am also hoping that after nest Thursday that I might not need the pain meds anymore! I know I am wishing big!
Keep me informed on your dr and I wish you the best!! Good Luck to you!
Karen
Yes, he was really rushed and running late from the traffic in the rain and from dropping his 2 1/2 year old daughter off at day care. I also think that he thought I was responding well to the social worker who does hypnotherapy. On top of that , he knew I was seeing an acupuncturist the same day. He wanted to see how that went before I started on the long acting pain meds that he had recommended. I think the issue is mine. I did have good results from the hypnotherapy in terms of the ability to relax, which helps the pain to a minimal level. At the end of the day, I need to stop trying to be a pleaser and be more honest about how I’m feeling. I was better that day because
i saw him first thing in the am, which is my best time. But, I think his reponse was based on the fact that the social worker said I was responding well to that aspect, which I am to the point I described. I just think that he believes I can get more relief from that and the acupuncture he prescribed based on my comments to the social worker. I can employ parts of what she is teaching, but I didn’t do a very good job of explaining that it is more for relaxation vs. pain control. I think he took the leap that I can utilize that technique to minimize my pain, so I don’t need the long acting pain meds. I am way too much of a care taker and want to make people feel that what they are doing for me is working, and I didn’t do a very good job of explaining how it helps me relax, but itsn’t helping with the significant pain. I will be telling the full truth in greater detail when I call Monday and explain that the flare-up started again on Wednesday and that I
have had to increase my dosage. He prescibes 2 of the Ozxycodone every 3-4 hours, which is 16 a day. On a normal day, I take 6. I take as much as 10 on a bad day, just as prescribed. I try not to take them in the evening as they keep me awake. So, they basically just get me through the day.
I’m ok until the end of next week at the avg. 8 per day dosage. I just hate having to worry about it. However, I know he won’t make me go without, so it should be ok. He just said to call. I hope the day comes that I don’thave to take pain meds any more. I am meeting with Dr. Freeman again onthe 7th. I have many questions. I would like him to do another EUS and the pancreatic function test to see if anything has changed. If not, then I have to accept that these adhesions are my primary diagnosis with SOD being 2nd. I’ll know alot more soon. The one thing I do know is that it is getting harder and harder to maintain and function every day. I’ve been on vacation this week. I can tell I feel better if I’m able to take a break and rest for a bit several times a day, as much as I hate admitting it, it really helps alot. It’s hard to do that when you’re working!
Thank you again for being here and for being so understanding! I’ll keeo you posted after I talk to his nurse on Monday. In the meantime, I hope oyou are continuing to feel ok until your ERCP on the 3rd. Please stay in touch!
I was also very concerned about the ERCP and got myself really worked up. I couldn’t stand another prolonged attack like the endoscopy brought on. I had a great deal of difficulty getting on the table .
It was a total storm in a tea cup. I had no problem, and no extra pain at all after a 90 minute ERCP and manometry of both pancreatic ducts, and a failed attempt at canulating the common bile duct.
My case may not be typical but I think a lot of the flare ups they ascribe to the ERCP is really a reaction to the anesthetic by folks with irritable intestines .
If you insist that they use propofol and have an experienced doctor you trust, I wouldn’t worry too much.
Incidentally for those trialling acupuncture. The current understanding from researchers like Melzack and Wall is that the low frequency of needle twiddling stimulates an area in the thalamus (part of the brain) called the PAGA to release endorphines – natural opiates.
The probability is that the natural opiates don’t have the GI problems of synthetic are released in enormously smaller amounts ones and are more effective. Unfortunately the effect is transient and not curative so you’re likely to need acupuncture daily to get prolonged pain relief. The stuff abut energy meridians and chi is not scientifically valid.
The studies show the effect post acupuncture lasts 20 minutes to an hour. Any effect beyond that is likely placebo – which incidentally is also an endorphen mediated response.
But if they are not twiddling the needles (rotating them in their fingers at a frequency of 8 to 10 hertz) you won’t get any real effect. Incense candles etc on the needles do nothing.
There is some evidence to suggest that TENS (transcutaneous electrical neural stimulation) works the same as acupuncture and the units can be purchased cheaply enough to use whenever you want. There was one study that found a 20% reduction in SO tone (contraction) following tens application to the epigastric region.
I want to wish everyone a Happy Thanksgiving. I have not been posting much, but reading everything. I am glad most of you are getting adequate pain meds. I agree with the doctor that said not to try and figure out what causes the attacks………………I can find no single food item itself, but a consideration of multiple factors. So far, I am in mild pain and can control it. My doctor is looking into scar tissue setting mine off and I really hope that is the answer. I don’t know…………………maybe know one really does.
Your comment about scar tissue setting it off is interesting. I have severe adhesions as a result of a ruptured ovarian cyst 5 years ago. I’ve had surgery twice in the last 6 months for adhesions. I’ve also had an ERCP which showed very high pressures in my common bile duct. My doctor is Dr. Freeman at the University of MN. He has said he knows there is a correlation, but doesn’t know how. He had hoped, as did I, that surgery for the removal of adhesions would address the problem. Unfortunately, it has not helped. Please let me know about how you’re doing and what you find out in this regard. I’ll do the same. Happy Thanksgiving to you as well!
Ever had one of those epiphany moments when it all comes together. I just did.
On researching small bowel diverticulitis I found the most common cause is small a bowel motility disorder. So I linked to that and found the following. Here’s some important extracts:
These lesions are frequently associated with small intestine motility disorders. The most common symptom is nonspecific epigastric pain or a bloating sensation – the pain can be severe and cholicky in nature.
Intestinal motility disorders apply to abnormal intestinal contractions, such as spasms and intestinal paralysis. This phrase is used to describe a variety of disorders in which the gut has lost its ability to coordinate muscular activity because of endogenous or exogenous causes. Intestinal motility disorders may be primitive or secondary and may manifest in a variety of ways, including abdominal distension and recurrent obstruction; severe abdominal colicky pain; severe constipation; and gastroesophageal reflux disease or intractable, recurrent vomiting.
The clinical presentation of patients with intestinal motility disorders is protean and may vary from simple nausea and maldigestion to severe abdominal pain, vomiting, diarrhea, an inability to eat, weight loss, and other symptoms.
IBS, the more commonly diagnosed disorder of intestinal motility, has been considered a disease of the colon for decades, but research on GI motility has demonstrated that underlying motility disturbances can occur in the small bowel.
Vagal function; the release of NITRIC OXIDE (the active agent in sub lingual nitrate sprays), vasoactive intestinal polypeptide, and motilin; and nutrients of the meal and other enterohormones also affect GI motility. Pain and distention may be almost continuous or separated by periods of clinical improvement.
Patients may have a history of weight loss or previous abdominal operations with no obstructing lesion found, or they may have a family history positive for the condition. Irritable bowel syndrome: Accessional abdominal pain, nausea, and irregular bowel habits that intensify during stress are the most common symptoms in patients with IBS.
Medications such as codeine and opioides may severely exacerbate symptoms and patients with suspected motility disorders should not use traditional anesthetics.
I think it’s pretty clear now what the cause of the problem really is in my case and a lot of those diagnosed as type 111 SOD. What I find alarming is the number of GI specialists who are not familiar with this condition when there is a society devoted to this problem in the USA.
There are a number of recommended treatments from medical to surgical. I won’t give them here as it’s complex. But it’s surprising how close I already was.
Avoid fermentable foods, more water, more insoluble fiber, antibiotics then certain promotility medications.
I won’t be posting here much further as it’s clear now I don’t have SOD – and neither do most type 111s. I’ll be happy to answer any further question that I can on the topic.
Do you have adhesions that you believe have lead to your condition? I’ve been told that abdominal adhesions can form not just from surgery, but as in my case, from the fluid emitted by the ovarian cyst that ruptured, and by other causes that could result in significant inflammation in the abdomen. I’ve had every test there is done pertaining to motility disorder. Nothing has shown positive except for constipation, which I keep under control through using MiraLax and Senna tablets. I also take Align, which is a probiotic. I still have daily pain and nausea. I’ve tried every diet from lactose free, low fiber, high fiber, gluten free and low fat. High fiber made it worse. Low fat and not eating processed foods helps some. Have you had success with the diet adjustments and medications you’re taking or is it too soon to tell? Please let us know how you’re doing.
I have no adhesions or past surgeries Kris. I’m no expert in this area but ovarian cysts should cause bowel obstructions only so I wouldn’t expect nausea to be a symptom and the pain should be lower abdominal?
My experience pretty much validates the stuff I’ve read recently. Small meals – lots of water and avoid fermentable foods. Soluble fiber is fermentable and REALLY flares me big time – wheat bran etc and this is typical in IBS.
Insoluble fiber works quite well – as it can’t be digested by bacteria. Normafib seems to help quite a bit – It’s and Australian brand but they should have something similar. Just make sure it’s insoluble fiber and start with very small doses.
I’d be interested to know what tests they did to assess your GI motility? It does seem you can have pain in the absence of a motility disorder (and other things like SOD etc) – with visceral hyperalgesia alone – but small bowel Diverticuli are present in 50% of folks with a motility dosorder. Mine is loudly audible at times so it’s pretty obvious. Diarrhea typically results from rapid transit time and is also evidence of a possible motility disorder, reduced peristalsis from a motility disorder results in consipation and gastroparesis. So there’s 2 types of IBS – diarrhea predominant and constipation predominant. Treatment varies for each type.
There’s just so many potential medications to try I’m not sure what to do next. Since the pain resolves in my case with nitrates I think my problem is more one of GI spasm – so I’m thinking of mebeverine (colofax) or boclofen first with an antibiotic.
IBS studies have found significant improvement with Rifaximin and most small bowel motility disorders induce bacterial overgrowth.
Hi Brett! I answered you yesterday, but it looks like it didn’t post for some reason. Anyway, I’ve had the following tests done relative to motility:
Pelvic Floor Study
Gastric Emptying Study
Transit Time Study
Hydrogen Breath Test
They were all normal. My adhesions are the result of the fluid emitted from the ovarian cyst that ruptured. They were diagnosed during a colonscopy in 2007. The doctor performing it said it was the most difficult colonsocopy he’d ever done and that he’d done thousands. Not a distinction one wants to have!
When I had surgery this past March to have them removed, they found them wrapped around my remaining ovary, wrapped all over my intestines and my gall bladder. They were back in the same places during surgery again in May. The symptoms of adhesions also are pain and nausea, just as with SOD. They can cause partial intermittent bowel obstruction. I’ve been told that the fluid caused inflammation, which caused the adhesions. The surgeon told me that anything that causes significant inflammation in the abdominal cavity can cause adhesions. Adhesions are also very difficult to diagnose. I saw that Nymphaea asked for your email address in the event that you leave the group. I’d love to stay in contact and would like to know how you’re doing.
Would you like to give us your e-mail Brett, just in case you decide to leave the group and would like to keep in touch ? If you are right about your own specific case I guess this is further proof that this is a woman’s problem !
Your dead right in that this is predominately a female problem – and most commonly occurs post GB removal.
What really burns me up – and has me itching to file a complaint is my “specialist” refused to listen when I said the research shows this problem is pretty rare in males – and especially rare in males with an intact GB AND that type 111 SOD is frequently not SOD at all. So the probability of being true SOD is likely less than 1%. On top of that I have all the symptoms of small bowel IBS.
I reminded him of the old medical saw – when you hear hoof beats think horses not zebras but he brushed that aside.
The only thing that stops me is we all have made some bad calls and mistakes and I’m responding to my own annoyance rather than real desire to help others.
I may send a letter noting how important manometry is and how many unnecessary test I had because it wasn’t available here.
There’s still a slim possibility the divisum or the CBD is symptomatic and I got a false negative from the manometry – and the DIDA scan but it seems very unlikely now.
Sounds like you have a lot of issues Kris – and true obstruction. Have they considered a partial bowel resection? I have and 82 year old patient and friend who was just admitted for severe abdominal pain. A diverticuli ruptured so they did emergency surgery and resected a portion of his colon. He survived and now has recovered fully – with no pain. Gets you thinking….?
Thanks, Brett!
I did consult with a colon surgeon early in this journey. He is th eone who ordered the pelvic floor study and the transit time test. He told me the only option was to have my entire colon removed. I went to another colon surgeon for a 2nd opinion. He said that would not only be a mistake, but would be dangerous. They’ve never been able to see exactly where the obstruction is during all of the testing. I guess why that’s why they label it “partial intermittent obstruction”. Dr. Freeman had me consult with a general surgeon at the U of M for the possibility of another adhesion removal surgery, only this time with a barrier put in. He wanted to wait until Jan. or Feb. to discuss it again since it had only been 4 months since my previous adhesion surgery when I saw him. I will add this question to my list for Dr. Freeman on Monday. I really appreciate your support and insight. Thanks for your email. I’ll stay in touch!
Have a good one!
SO MANY PEOPLE, SUCH LITTLE HELP. i AM A 57 YEAR OLD MAN, WHO HAS REGULAR ‘GALL BLADDER’ ATTACKS YEARS AFTER REMOVAL, THE GI’S I’D SEEN HAVE ASKED THE SAME 10 QUESTIONS ABOUT BOWEL MOVEMENTS AND CONCLUDED IT’S JUST SOME NASTY I.B.S. THING, MEANWHILE I’M IN THE HOSPITAL OVER AND OVER WITH THESE STIFLING EVENTS THAT PUT ME IN BED FOR A WEEK AT A TIME HEAVING MY GUTS OUT, WISHING I COULD DIE TO ESCAPE THE AGONY.. MY INSURANCE PAYED ME FOR A YEAR BUT THE THE LACK OF PATHOLOGY AFTER 2 YEARS OF BEING SICK HAS MADE IT DIFFICULT TO COLLECT. BUT HE TESTS DONE WERE FOR PORPHORIA AND ALL THE WRONG STUFF..BLOODWORK HAS TONS OF HIGHS, BILLI.ALWAYS .OCCASIONAL LIVER, GAMMA. WHITE BLOOD ,NUETROPHILIS. ALWAYS ELEVATED. MY DR SAID I HAD HAD ENOUGH OPINIONS AND SHOULD SEE A SHRINK. BUT HE NEVER SOLICITES MY HOSPITAL RECORDS SO HE KNOWS SQUAT. MY WIFES DR SAW ME [A G.I.] HE SUSPECTED S.O.D. IMMEDIATLY BUT CANNOT DIAGNOSE OR OPERATE. WE GOT THE NAME OF A VANCOUVER DR WHO MIGHT BE ABLE TO SHED SOME LITE IN MY DEMISE, AND ASKED FOR A REFERAL, THROUGH MY DR. WHO ACTUALLY LAUGHS AT ME, SAID “HE EVER HEARD OF S.O.D.” HERE HAVE SOME MORE MORPHINE, THAT I THINK CAN MAKEMY ATTACKS WORSE OR PROLONGED SOMETIMES, BUT HAVE HEARD NOTHING AND IT’S BEEN ALMOST 2 MONTHS, OUT OF DESPERATION I HAVE E MAILED THE SOD DR BUT HAVE HAD NO RESPONSE. MY INSURANCE IS 2 YEARS BEHIND IN PAYMENTS, I HAVE APPEALED AND GOT A LAWYER TO HELP SORT OUT THIS PERSONAL HEALTH AND FINANCIAL MAYHEM..ALL I WANT IS THIS THING FIXED, IT’S LIKE HAVING A MONSTER UNDER YOUR BED THAT COMES OUT WHENEVER YOU LEAST EXPECT IT, AND BEATS YOU RELENTLESLY..MY HEART GOES OUT TO ALL OF YOU..
David,
So, sorry it seems you are one of the rare guys who has joined our club. You will find very much help here, even some doctor referrals. Please tell us your state or province and we will try to recco you the closest Doctor we know who can help you. How long has your suffering been going on ? We are all here for you. Wishing you the ability to control this monster and cage it !
The agony is so severe you want to die and the Docs think it’s in your head. Definitely stop the morphine. Whether it’s SOD or IBS it can make both severely worse – and brought on the attacks in my case.
Since you’ve had you GB out the probability of being SOD is higher in your case – male or not. Elevated WBC and neutrophills possibly indicates some sort of infection. Liver enzymes and bilirubin should definitely not be ignored and could be type 11 SOD.
Firstly get rid of the docs that want you to have a psych eval and give you more morphine. It takes time to find a good doc who’s experienced in this area but it’s absolutely critical! You could ask for an US or MRCP to determine if your duct diameters are normal – but elevated enzymes alone is enough for type 11 SOD without further investigation. Some docs will do endoscopic sphincterotomy on the bases of elevated enzymes alone.
Find a doc who’ll refer you to a specialist center that can do manometry. You simply can’t mess around with traditional physicians in this area – they are a complete waste of time and often do more harm than good.
In the meantime get yourself some sub lingual nitrate spray. You may not need a prescription even – you don’t in Australia. It may not help if you have a stenosed sphincter (type 1) but it will for type 2 – and will likely ease the pain a lot more than morphine.
The good news is the probability is high that it’s SOD and if so there’s an effective cure. I’m optimistic for you.
David, Welcome to the group. I am sorry you have had such a bad experience with the doctors in your area. It’s bad enough to feel horrible, but than to be treated they way also stinks. I don’t know if you are familiar with the website- CLINICAL TRIALS.GOV, but I took it upon myself to look and see if there was anyone in Washington, and there is. VIRGINIA MASON MEDICAL CENTER, Seattle Washington. The contact is a Alice Stead 206-341-1450. They are currently recruiting for SOD patients. I thought that might help. We are all here for you, even if you just need a place to vent, we understand. Take care, Michele/MN
Hi David,
Where do you live? I apologize if you mentioned it earlier and I missed it.
I have talked with The recruiter for the EPISOD study they are doing at Virginia Mason and she said that they are looking for people who have never had a spincterotomy. She said I am well past the point of treatment that they are looking for. They are very good there at virginia Mason. I am actually having my sixth ERCP by a Dr. Brandabur tomorrow as a matter of fact. He is world renowned I have heard and people fly in to meet with him from all over the world. If you have any questions about the GI Dept at Virginia Mason please don’t hesitate to ask me and I will do my best to help you. Welcome aboard!
Karen
OK everyone..please pray for me that I might find some answers and the dr’s can get me some relief from this awful pain and nausea tomorrow! I check in at 10:00 am and I believe the procedure is at 11:00 am but might be a little later than that. It is an overnight stay in the hospital so I will get on here in the next few days to let you know how it went.I need to calm down and not be so freaked out about it. I’m sure I will be fine. Please keep me in your thoughts..I very much appreciate all of you! Take care and will talk to you soon,
Karen
Hi Michele!
It was good talking to you last night. I hope you were able to get some sleep and that you feel better today. Let me know how it’s going! We’ll talk soon.
Hi Karen!
I was thinking about you yesterday, knowing it was the day of your ERCP. I’m praying that all went well and that you get some relief and answers. Please let us know as soon as you can how you’re doing and what you found out. You’re still in my thoughts and prayers!
Well I am home now. Thanks to you all for your kind words and prayers. The Dr did put in a stent yesterday and found that I had an ulcer. He said my stomach looked like someone poured bleach down it. He also said that I have the smallest biliary duct of anyone he has seen. So now we leave this stent in for 3 months and then see if we need to go to a bigger one next or if this takes care of it. I had a real bad experience coming out of the anesthia this time. They said I was very combative and I woke up to everyone holding me down and yelling at me and I am very claustropobic so it was a bad experience. My dr said he wouldn’t touch me from now on without being under a general anesthia. I still have quite a bit of pain now but hopefully that will go away in the next couple of days.
Take care everyone,
Karen
It’s good to hear from you! Wow. What an experience. What will you be taking for the ulcer? Hopefully, getting that under control will help some of your symptoms! I think you said you’ve had a similar experience with anesthesia. There must be a different type that you could tolerate better. This had to be a terrifying experience for you! I’m so hopeful this stent will help you. Rest lots and feel better soon!Please keep us updated as to how you’re doing.
Hi! I take that once a day. It does help. I did get my meds straightened out. It was no problem at all. I was probably just being paranoid based on past experiences and the fact that he asked me to call this time instead of giving the prescription when I was there like he usually does. I called his nurse on Monday. She said she’d take care of it right away. She even called back only 15 minutes later to tell me that it was ready, so I picked it up on Thursday. This week has been better. Yesterday was my birthday and it was the best day I’d had in a long time. I said it was a birthday present from God! My boyfriend, Paul, and I met some friends for dinner. It’s been awhile since I’ve gone out socially. It’s tough enough to make it through the work day, as you know too well! I had a good time and feel fortunate that I got out and did something normal. Today is a little tougher, probably because of the food I ate. Are you still having alot of pain from the ERCP? Thanks for thinking of me!
Everyone in the endoscopy center knows who I am, I am pretty sure it is because I have been combative. With my first ERCP I even had a cut inside my mouth. They are nice enough not to say anything to me about it. They give me so much Versed that I usually do not remember anything for 4-5 hours after the procedure. At least those are 4-5 hours that I don’t remember that I am in pain. I can have good days, but it has been over 2 years since I have had a pain free day. I am going to see a new pain specialist next week since my last one went off the deep end. One of my friends over dinner suggested that I try methadone for pain. Methadone is also used for maintanece of hopelessly addicted heroin addicts. I had to laugh because it is probably less humiliating and degrading to be a heroin addict than to go see a pain specialist.
The specialist I saw told me doing repeat ES, after a reclosure is a bad idea as you just add more scar tissue to a sphincter that is almost certain to reclose – and this sounds like your story in a nutshell.
She said she had good results with progressive stenting so I think you’re on the right track this time. You probably will need at least a second larger stent after the first one but think of this as a good thing opening up the duct slowly over time.
Did the doc talk to you about treatment for helicobactor prylori? Unless you’re taking high doses of NSAIDs it’s the only possible cause for the ulceration and gastritis.
Either way the prognosis looks good for a full recovery.
Typically they prescribe prilosec, nexium or some other PPI with Amoxicilin, Falgyl and bismuth. Some are not using the bismuth now and just an antibiotic cocktail with a PPI.
The original researcher Robin Warren used bismuth and got good results so I think the bismuth is a better option – and is the main ingredient in peptobismal .
Have they considered putting boxing gloves on you before you go under?
Hi Everyone….Well it has been almost 7 weeks since I had my ERCPw/spinc…..I was doing really really well….no nausea and rest of lower GI back to normal…just some twinges of pain now and again…I was thrilled. In the last week I’ve started having problems again. ….terrible bloating, nausea and the pain….I’m so frustrated and hopeless….my regular GI has already told me….you had the procedure that takes care of the problem! Now what do I do…..I’ve noticed that some of you here had emailed Dr. Freeman or Dr. Cotton……Do they accept inquiries if you are not their patient?? Any comments are greatly appreciated. Take care-Laura
Hi Laura!
I’m sorry your having symptoms again. It has to be so hard to have had the relief and now to be back where you were before. Your GI dr. is wrong.Many of us who have had the procedure have had either no relief or temporary relief. I had no relief from mine. Dr. Freeman said unfortunately that does happen. I’ve heard from others that he does accept inquiries from those who aren’t his patient. It would definitely be worth trying to contact him. i hoe you feel better!
Hi Laura,
Please don’t let your Dr tell you that there is nothing else they can do. I was in that same situation about 3 months ago and I finally said enough! This can’t possibly be all they can do for me. I changed GI Dr’s and my new one said that he is starting out with a small stent which I just had put in Thurs and will change out every 3 months with larger ones if necessary. He told me that I’m only 48 and I have a life to live! I started crying when he told me that. He said this is a common problem. He is in Seattle which is alot bigger city than my last GI dr was in and I think he knows alot more about this disease. I hope you can see another dr that can help you more because there are more things that can be done. Was that your first spincterotomy?
Hello everyone,
Have been reading your posts. Thank you. Ipersonally was on the upswing until I got another bladder infection and was given AVELOX antibiotic and after the 2nd day, only 1/2 hr. after my pill, I had an SOD attack. I’m still bad off and we have an ice storm and my GI wont return my call and my GP never has a covering doc w/ no weekend hours. The bladder infection is severe. And the SOD is severe intermittantly. I have realized that every SOD attack was pre empted by a course of antibiotics. I have kept notes of all this. Although I give acurate history when I have an attack, no doc has ever seen my connection to SOD through antibiotic use. hopefully this info is helpful as I am awake beecause of the pain.
Thanks,
Did a a hospital run this morning. Through Fast Track I could find another antibiotic that would not give me SOD. They picked Cipro. Oooops big mistake, also a Floroquinolone ! So, I had tetra cycline and macrobid still in my house, so, I’ll have to make due until my bladder culture comes in on WED. And then we’ll figure out which of the 2 choices I made will be most adventageous, for me. Cymbalta is being tested for SOD, good for migraine prevention and fibromyalgia. I would rather be on one drug then many, not really such a bad idea. New job starts tomorrow and I will be taking care of patients from 11-8 without lunch or dinner breaks, just eat between patients, so I have to get over this soon. Sod feels better then last night Avelox is in the garbage and Cipro is sitting in my cabinet waiting for desparation. Have any of you also had SOD III attacks brought on by antibiotics ?
I can’t say that I have, but I haven’t had a need to take them in a long time.I tried to call you tonight, but your voicemail didn’t kick in. I am concerned about how you’re doing and wanted to check in. You’re going to have a demanding day tomorrow. I hope you feel better and are able to manage. I hope you’re better and all goes well. It’s always tough starting a new job. These issues make it even more challenging. Give a call if you feel up to it. Just know that I’m thinking about you and am praying you are getting better.
Hang in there, honey! I’m always available if you want to talk.
Sorry about that Kris. Danny was hooking up a new phone system. Missed you. Bladder is better on Tetracycline and mega water drinking ! No SOD attack. Looks like I killed that one early Ready to start getting ready. Reporting at 11AM for duty ! Bringing a lot of water ! And lunch and dinner already packed. Hopefully today will be an early night, so I can fully recover. Thanks for your well wishes. Talk to you soon.
Nymphaea
Kris , i am glad i read your post , i havent had a bout with the pain in my side for at least a year , i wound up with a infection in my leg caused from bryers while deer hunting , the doc put me on cipro , then clindamycin and lord here we go i feel like i am dying , ontop of the pain in the side , the cipro has screwed up my muscles and tendons , lost of muscle pain , i thought i was done with the sod , it use to be brought on by coke , now it looks like antibotics , for god sake stay away from the cipro , i had my gallbladder removed 2 and a half years ago now it feels like it is back !!!!
Hi Shawn! It does. Sometimes it feels like a knife stabbing right through into my back and sometimes it feels like it wraps around my ribcage. Also, sometimes i can feel it as far down as to the right of my belly button.I’m sorry you’re having a tough time. I hope your doctor is helping you!
Hi Kris! I haven’t posted for awhile but I have been reading a lot of the posts. Happy belated birthday!! I am glad you got to have a nice celebration without any attacks! I basically am in the same spot as I was, no diagnosis yet, more testing. Just coming out of pity party where I was too dejected to even follow up but I have decided I really need to keep going because the alternative of living with this crud without a diagnosis is not an option! The way you describe the pain sounds just like me. Question – when yours is acting up, is it hard (or impossible) to lie on your right side? Does physical exertion (lifting something, stretching) ever bring on the pain? If anyone else is reading this, can you answer if this has happened to you?
Hi! Thanks for the birthday wishes! It’s good to hear from you. I’ve been wondering how you’re doing. It does get really hard to cope with this. I’m glad you’re going to keep pushing forward to get the tests and ultimately, a diagnosis. Let us know what tests are happening and when!
Yes, I have a very difficult time lying on my right side and it’s more difficult when it’s flaring up. Yup. Physical exertion can bring on pain in me for sure.
Hang in there and remember, you can come here any time…even just to vent! These issues are life changing and it’s really hard to get used to. It helps so much to have a place like this with the great people here who understand.
I hope you have a great day. I’ll look forward to hearing from you soon!
Thanks so much Kris! I love my sphincter friends. =) This site really does help! Interesting that you have the same experiences with lying on right side and physical exertion. Here’s another one – cold water? Sometimes within a few sips the pain really flares up. Also sometimes happens with coffee on an empty stomach, but there are some things I cannot live without! =) I am going for a CT scan next week. If I am correct, not really a chance it will be able to pinpoint SOD but can identify and/or rule out other things. Not sure what to hope for at this point. I know you know the pain of normal results! You were diagnosed SOD II because of the pain plus high pressures, right? So you went for ERCP without definitive diagnosis? Sorry, hard to keep stories straight. This can be so dejecting because it always had seemed to me that debilitating pain attacks mean something is acutely wrong and then you can fix the problem with a trip to the doctor/ER /hospital and be fine. As we all know, not really the case..
Thanks again, and hope that you are having a pain free week!
Hi Shawn !
Hope you get over the SOD pain soon. Mine took about 6 weeks after Cipro and thankfully 48 hours after having Levaquin (Avelox), 1 pill Fri & Sat night. Thank goodness I stopped and thank goodness I figured out once and for all what was causing my attacks ! (Though Floroquinolones : Cipro, Levaquin, Avelox) never gave me a problem B4 my Hep B Vaccines ! Used to go on them all the time for UTI’s. (Prone to bad UTI’s because of a bladder Disease called Interstitial Cystitis or Painful Bladder Syndrome) Sadly, though, all the antibiotics which get rid of Bladder infections are TOXIC to the kidney ! So For you, its very difficult to tell which pain is Right Sided Kidney pain and which is SOD PAIN which hurts in all the areas you mentioned and yes is also in the right Flank (Similarly w/ KIDNEY) And I have no diabetes or high Blood pressure or weight problem am only 43 and My Kidney Function is going down ! NOT GOOD ! So, yes these antibiotics are miracles to infection, but hurt us in many other ways !
Thanks! I think it’s from practice making perfect! After having to explain it to so many doctors throughout this journey, I’ve learned how to minimize the words!
Hi Nymphea <,
This pain is driving me nuts , although i havent been diagnosed with sod i am sure that is what it is , i hope at least , the pain has my lower back hurting like hell and pressure in my bladder area , i find tha soma a muscle relaxre helps a whole lot ,i figured it is the cipro that brought all this on but it dont seem to want to go away , my right side is sore as hell but has got alot better with the muscle relaxer ,fried food really sets it off how about you all.soma is the one i am taking
Now Shawn,
Lets make one thing straight. We don’t use the “F” word here on this site : Fried. Non of us can have fried food and would end up in an ER if we tried. I want to also be perfectly clear. Your bladder pain has nothing to do w/ SOD pain, and lower back pain does not Jive either, unless you are referring to Thoracic/ Lumbar junction. OK I’m hoping we are all on the same page here. Now, many other organ problems are set off by “F” foods, Gall Bladder, IBS, Stones, blockages. So, get to a decent GI who knows about SOD and allow yourself to be tested & questioned acurately. None of us have diagnosed ourselves, and many of us have been misdiagnosed 1st. Better safe than sorry. Rule out everything else out first !
Nymphaea is right on! Fried foods are a no-no. For me, high fiber foods are another no-no. I ate brown rice the other day at lunch and contemplated a trip to the ER. A low fat, low fiber seems to help. I can eat dairy, especially cottage cheese. (Michele in MN is smiling….we’ve talked and this is her staple, too!) Please find a good GI doctor to get the proper diagnosis as Nymphaea suggests. It’s tough to do and you may have to go through a few of them, but it’s worth the work to find the right one.
Hello everyone, Haven’t been able to post in awhile, but I have been reading posts, and have had everyone in my thoughts. Karen and Nymphaea, I am glad to hear your doing a little better. Nymphaea and Kris thank you for the laugh this morning about the F word and the cottage cheese. LOL I needed that this morning, what started out as an ok morning is starting to get icky.
Laura, hang in there, it can feel very hopeless sometimes, especially when your told your problem should be fixed.
Shawn, I hope you are feeling some releif. I have tried muscle relaxers, but they make me more sleepy than anything, and don’t really help as much as my pain meds do.
Wishing everyone a pain free or pain tolerable day!
Michele/MN
i have been to doc after doc i mentioned SOD to the doc that removed my gallbladder he says it is too much coke , LOL i dont know what the problem is i have been fighting this foe 15 plus years . thought i had it beat then the cipro and clindamycin has set it off again , the pain is funny sometimes it is moderate to bad then other times it is just a sore feeling in the ribcage liver area.i was fine last night , So i ate salsbury steak with mashed potatoes and gravy , and you know it woke up this morning in pain .
Well the next few days should be different. I started seeing a new Dr., a emergency room Dr. says he will try and help me and my pain. He ordered an MRI of my back to rule out that. I also told him I would like to try and go off my Nortripyaline to see if I can lose this 40 LBs I’ve put on since I’ve been on the stuff. I will still be on the Tramadole and Levsin. He is weaning me off starting tomorrow, going down on the MG. If all this makes the SOD worse I will go back on it, but for now I will try this.
Hi, just wanted to let you all know I was rushed to the er Sunday night and have been hear ever since. My labs have been getting worse everyday, today lipase is over 3000. Dr freeman has decided he wants to do an ERCP tomorrow. He said I have smoldering pancreatitis. And he thinks placing a stent is the only thing that will help. Dr Sutherland was also here and he thinks I should do the TP IAT.
Wow!
I’m sorry to hear that, Melea! Have you decided what to do? The ERCP with the stent might be the 1st step as it is certainly far less invasive. Let us know! I’ve been having a tough few days again. I saw Dr. Freeman on Monday. He’s ordered another EUS and the pancreatic function test. These will be done next Thursday. Please let us know how you’re doing and what you decide.
Yes I had the ERCP I just got back to my room around 10pm. Since I have smoldering pancreatitis hw was very worried to do a procedure that is likely cause pancreatitis. So he said he went in and dropped the stent in and got out as fast as he could. Don’t feel any better yet but that doesn’t mean anything. On Monday they are sending me another dr to talk to me about placing a pain pump. Has anyone else here had/has a pain pump? If yes did you like it?
How are you doing today? I can’t stop thinking about smoldering pancreatitis – that sounds so positively awful. Did you talk to the doctor yet about pain pump? Sorry that I have no input on that – have not had one. Hope you are doing better.
Hi Kris,
I am so sorry that you are having problems again. Seems like with this you just get feeling better and think you’ve got it kicked for a while and are going to get a break and then you start having problems again. It is so frustrating I know! I hope that your tests on Thurs show something. Let us know how everything goes.
Hang in there!
Karen
Isn’t that the truth? I’ve learned to appreciate the better days. Today’s been a better one again. How have you been doing? I hope you’re improving after your ERCP. Please let us know. I’ll post after the tests. The radiologist may tell me something about the EUS or he could wait and have me see Dr. Freeman again. The pancreatic function test has to be sent to NY for analysis. I know it takes 3-4 weeks to get the results, so I’ll post what I do find out on Thursday.
I am still in more pain than I thought I would be in. It is definately not the intense pain that it was before the stent placement but I was hoping (dreaming) that I would be pain free after ward. I am still glad that I did it and still hoping that it still gets better in time.
Hi Karen! I just saw this your post this am. I’ve not had one before, either. My understanding is that it shows whether or not your pancreas is functioning correctly. I believe it can show evidence of chronic pancreatitis that other tests may not. I know it takes 3-4 weeks to get the results. I’m a little worried about what will be discovered during the EUS and that test, but it’s better to know than to not know. I should find out about the EUS right away.
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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Getting ready to leave for Charleston this morning and a coldsore of all things has popped up on my lip!! I guess I won’t be having an ERCP on Tuesday after all. No way am I putting that mouth piece on that coldsore for the procdure. Guess I will have to reschedule if he wants to do the ERCP, will have to see what Dr. Cotton says Monday.
Stress is a big trigger for me and coldsores. I didn’t think that I was stressing that much over finally getting to see Dr. Cotton. I am scared of the ERCP for sure but I didn’t think I was stressing to the point for a cold sore to rear its ugly head! So I am guessing this will be a short trip and I will have to make another if he decides that I need an ERCP.
You are probably already on your way to Charleston and really, I can’t think of what words it would take to ease your mind about the ercp (that is, IF he decide’s it’s a go). Let me just say that I’ve heard gobs and gobs of good things about Dr. Cotton and if any doctor can do it right I’m sure he’s the one.
I will backtrack to February 11, 2009 when I finally got the nerve/courage up
to allow MF (Dr. Freeman-MN) to do my ERCP and if I could only turn back the hands of time as well as erase the likely damage done to my pancreas by choosing
NOT to have the ercp done …….
Oh well, at least I DID finally decide to go through with it and I am feeling sooooooo much better. Now I’m not totally out of pain, but since the ercp and my enzymes , I can even eat more than just a few months ago. My diagnosis is Papillary Stenosis and I know the outcome for SOD I is more favorable than sod 2 or 3, but my cbd & pancreatic ducts are still dilated (my cbd wildly dilated)lol and I know I have more pain and ercp’s in my future.
So I just wanted you to know that I’m another who was terrified from another ercp but if you go to someone who really knows what you’re doing (AND YOU ARE), then I think that if say you do develop post-ercp AP, that it will be very minimal.
Best Wishes & Lots of Prayers Are Being Sent Your Way,
Cristie/Gracie
Bedhead..did you go ahead with the ERCP? Hoping you are felling good. Waiting to hear how you and Brett are doing. Thoughts and prayers are with you guys!
This question is to all the females here on this site. I hope I don’t offend you males here. I have noticed and we have mildly discussed this topic before about anyone noticing more pain around the time of their menstrual cycle? I have mentioned this several times to my GI doc and he said that although he has not heard that but it might be possible since it does involve the hormones and alot of things can be affected by hormones. I am 48 years old and think I am just starting menopause. Since this is a new phase of life for me I do not know how the SOD is going to act through this. I could always tell you when I would start because my pain got increasingly worse and sure enough within a day it started. So I have not had a cycle in about 2 1/2 months but the past 2 weeks I have been spotting steady. My SOD pain has been worse so I’m trying to figure out if there is any correlation between the two. I believe there definatly is. Have any of you other women experienced this? Sorry if I gave too much info for some but I would really like to know how others are affected by this. Thanks for your replys. Karen
P.S. I would be curious to see what Dr. freeman thought of this but I am not a patient of his.
Hi Karen! I asked Dr. Freeman whether SOD is somehow hormone related since it so much more prevalent in women. He said that they don’t really know. That’s when we had the conversation that you may have read in one of my posts when he said that because SOD is primarily a women’s disease, there hasn’t been much research done. He believes this is highly unfair and has said he is doing everything he can to try to educate others in the medical profession.
I had a partial hysterectomy in 1991. I had my left ovary removed 5 years ago and my right one just in May. I’m now on HRT. I can’t make any comments regarding periods and increased SOD episodes. i didn’t have this nightmare back when I had periods. It does make sense to me that there is something hormone related. Hopefully, one day there will be more research and hope for all of us going forward.
Thanks for your words. But I didn’t mean “partying,” I have never been that kind of person and my friends aren’t really either. I am an opera singer, I sang with the MN opera twice, at the Ordway for performing arts three times and with the MN orchestra five times all before I graduated high school. I also was selected my freshman year of college to sing for the pope as the soloist (didn’t make many friends, all the senior were upset it went to a freshman). Singing is something I love and wish I could still do. I have missed SO many oppurtunites since getting super ill. I really had a chance to make it in the music world and I feel that has been taken away from me.
sometimes its hard but normally I am told I have a great sprirt and am very possitive (but I have my moment of not).
TP = total pancreatectomy. TP/IAT = total pancreatectomy and islet autotransplantation
Melea,
Your accomplishments are tremendous and hopefully your recovery will be another accomplishment to add to your list. Keep focused on how you would like your life to be 5 years from now. The sky’s the limit on this meditation. Really claim it in your mind. See yourself passing this stage of your life and keep taking your brain to the next level until you see yourself exactly as you want to see yourself. The mind is extremely powerful in the healing process. Use it. You can make a collage board of magazine photos to depict your future. Look at it every morning and the last thing before you go to sleep. Another meditation is to go deep within your body until you can see all organs working and deep breathing see them all working in harmony. These meditations take practice, but you already know, you are diligent to accomplish much w/ the discipline you have. Now make your brain work in a new way and the mind/body connection will help your healing further. The so called “friend wannabees” which expressed their jealousy with you in the past hurt you to a certain extent. Allow yourself to feel this and let it go once and for all. Sometimes we burry past hurts deep and Sometimes our bodies physically turn our hurt feelings & stress into actual illness. It ’s a way our bodies scream out for attention when they are not being listened to. I hope I gave you some good ideas for your next couple of days. Where you place your mind makes all the difference. You are in charge of your own healing journey and you will decide which procedures to have or not to have, and who you will choose to treat you and when. Don’t give up that power to anyone. I’m here if you need me, for anything.
Nymphaea
Thanks for your words. But I didn’t mean “partying,” I have never been that kind of person and my friends aren’t really either. I am an opera singer, I sang with the MN opera twice, at the Ordway for performing arts three times and with the MN orchestra five times all before I graduated high school. I also was selected my freshman year of college to sing for the pope as the soloist (didn’t make many friends, all the senior were upset it went to a freshman). Singing is something I love and wish I could still do. I have missed SO many oppurtunites since getting super ill. I really had a chance to make it in the music world and I feel that has been taken away from me.
sometimes its hard but normally I am told I have a great sprirt and am very possitive (but I have my moment of not).
TP = total pancreatectomy. TP/IAT = total pancreatectomy and islet autotransplantation. TPN = total parental nurtistion which is food by vein. I have a port in my chest that has a needle in it 24/7
Melea,
I understand what you mean about getting together with friends. I am not as sick as you are, but hesitate to make plans because I know I will probably not feel like going. I am still working but it is getting harder and harder and now I think my fourteen month old and I have the swine flu. My company is notorious for letting people go who are or have been sick for various reasons. I would definitely prefer to work. Good luck with your ERCP. I am having my 3rd this year on the 19th.
Hey Julie -
I’m wondering,
1)what is your diagnosis ?
2)have you had any relief from your 2 previous ercp’s?
3)who is the person doing your ercp’s?
I apologize if you’ve already posted answers to the above, just I have sometimes have difficulty navigating this blog (& this is not meant to be a criticism of your
blog Judy – I love it):)
Also Julie, your company should not be allowed to mistreat their employees in such an awful way. My husband and I have a small structural engineering business and we would NEVER do that to anyone ! The Family Medical Leave Act should protect you & I would put all of your facts in order now just in case you are forced to take some time off in the future.
Best to You and my warmest regards,
Cristie/Gracie
Cristie,
1. Sphincter of Oddi dysfunction, pancreas divisum, and early chronic pancreatitis
2. I had relief from nausea after having the biliary sphincter, but no pain relief from the ERCP’s
3.
GI doctor #1 was really nice but did not do ERCP’s and sent me to GI doctor #2.
#2 GI doctor cut the bilary sphincter when the pressure was high. The in a second ERCP he cut the minor papilla. Then he told me my pain was not GI related. My primary care MD recommend a second opinion from GI MD #3 and #4.
#3 GI doctor did not do ERCP and wanted to scope my stomach. (I believe just because he could bill my insurance for it)
#4 GI doctor does research in SOD and told me I should just get my pancreas removed.
I had trouble getting some lab results and ended up reading the report from my last ERCP. I am not a doctor, but it did not sound very “fixed”. I then went to a new primary care MD that came very highly recommended who has sent me to GI MD #5.
GI MD #5 is really nice. I am not very optomistic, but at least he is willing to try.
My work let one lady who was in and out of the hospital with heart attacks. She sued them and got her job back. I know of 2 other people who were let go around illnesses. One had been promoted for doing good work. One time my company was over staffed and they decided to let the old people go. One elderly lady sued and got her job back. I am not sure how many days I can call in sick before I need to take FMLA. When your FMLA is up, human resources just sends you a letter telling you your employment has ended. Human resources is very sneaky at my company.
Dear Julie,
Sometimes a push out the door is just what you need to get to the next phase of your life. I was in NYC on SAT and I wanted to go into ABC carpet and home and thank them. They hired me when I healed from my first bout of SOD, when I got a preteens body back after a 7 month couch affair. Then the night before I was to report for work my first day, they called me and said don’t bother coming in, they gave the job to someone else. I took it really hard, I was 3 ms recovered now and nobody seemed to want me to work for them. Then my significant other said, “Why don’t you go back to school for medicine, afterall you know about more medicine than anyone I know who is not involved in the trade” Well somedays make all the difference in the world.
3 yrs later I was a licensed Acupuncturist with a practice in my home.
So, follow your heart Julie even if the descision doesn’t seem practical. You have 1 life (this time around) and sometimes life happens to us while we’re making other plans !
Nymphaea
Melea, When you were having your pancreatic tests done, were your enzyme levels ok? Maybe you can shed a little light for me about panceatic bicarbonits, or a pancreatic insufficiency. I am hoping I hear the official results early this week, since Dr. Freeman will be back today. You have made some amazing accomplishments, and you seem to be a very strong person, so with your strong will, and help from all of us, you will be back doing what you love. I hope everyone has a tolerable day, Michele/MN
Michele/MN,
I am so sorry I just realized as I was going through the blogs that you wrote this weeks ago!
I don’t remember my numbers this isn’t my only med issue, we are more worried about my wbc and hemo and such.
What I know about bicarbonate and insufficiency are very basic. Pancreatic insufficiency is the inability of the exocrine pancreas to produce and transport enough disgestive enzymes to break down food in the intestine and to allow absorption. Most common case is recurrent pancreatitis. Pancreatis bicarbonate is a base and critical to neutralizing the acid coming into the small intestine from the stomach. The mechanism underlying bicarbonate secretion is essentially the same as for acid secretion parietal cells and is dependenton the enzyme carbonic anhydrase. In pancreatic duct cells, the bicarbonate is secreted into the lumen of the duct and hence into pancreatic juice. In short enzymes and bicarbonate travel through the pancreatic duct to the duodenum. Normal ranges are 22-30mmol/L
I hope you had a great thanksgiving!
I received the information on the study that is being done on SOD. It does not promise to help the participants, but is more gathering information to help future SOD sufferers. My doctors don’t think I am ready for an ERCP yet, so I am not going to join. If you are going to have the procedure done though and would be willing to help with the study you might want to check it out. The study is being done in multiple locations: Alabama, Indiana, Maryland, Minnesota, South Carolina, Texas, and Washington state. http://clinicaltrials.gov/ct2/show/NCT00688662
I hope you all have a pain free day.
Hello everyone, I have no news to report, because I can’t get an answer myself. But I did come across a web site today while I was researching. PubMed.gov . We can never have enough information or places to get it. I hope everyone is having a good day, mine isn’t so great but I’m doing some deep breathing to make it to 4:30 at work. Michele/Mn
This is a very good resource Michelle ! We used it in med school constantly and even had to base our most important paper on research from it. I did the study on whether it was healthy for the human body to live on a fat free diet and anybody who would like a copy and give me their Email !
Well I got a phone call this afternoon, not really clarifying the results, but to set up an appointment on December 14th to have a Secretin MRCP done and then a clinic visit after that. I wish a good night to everyone. Michele/MN
Hi Michele/MN!
I’m sorry you have more waiting to do. I think that’s the one I had done when I was hospitalized in June. It was like an MRI, but they place something on your stomach that helps them focus on our trouble zone. It was long. I’m sorry you’re not feeling well. I haven’t been, either. I was in the ER at the U again on Monday afternoon. I had the sharpest pain I’ve ever had with this hit me while I was at work. I almost thought I was having a heart attack. They checked for that and the ususal. Of course, everything wsa normal. They are so nice to me. They’re not judgemental at all and give me the meds I need. I emailed Dr. Freeman yesterday to let him know, but haven’t heard back. I know he’s buried after being gone. I’m hoping for a better day for both of us! Kris
I’m sorry you’re not feeling up to par. Its nice that the er nurses and such were nice, I don’t always get that, especially if my labs and such come back normal. What did they give you for pain?
Also about dr freeman, he did an ERCP on me yesterday I was his secong of the day so at 930am and he came and checked up on me at 1030pm last night. So I know he is very busy, but he normally is good about getting back to patients.
Dr freeman almost cancelled my ERCP because of my labs, my vitamin d was a “. . .” Highlighted red and said has no trace amounts. He was very shocked and said he has never heard of one that low let alone seen one that low, he also called dr sanjeevi to look at it and she said the same thing.
Hope all is well.
Hi! They gave me Dilaudid, which has seemed to break the cycle. I think they can tell by my records since I also see Dr. Carter that I’m not a drug seeker. He had suggested startinga longer acting pain medication during my last visit, but I told him I didn’t want to do that yet. The ER nurses were nice, but the woman dr. was a little crabby until she came back from reading my records. Then she was much nicer and authorized the Dilaudid. That’s interesting about your vitamin D levels being so low. My mom heard something about people with pancreatic issues needing more vitamin D. About a month ago, I started taking 5000 units a day. I can’t tell any difference so far, but who knows over time! I’m assuming that you’re still in the hospital.I hope you’re feeling OK. Please let me know what the results were. And thanks for the update on Dr. Freeman. He is really good at getting back to his patients. I knew he was doing your ERCP yesterday and would be behind after being gone. I’ll hear soon. I’m anxious to hear how Brett’s and I think it was Karen who also had theirs yesterday went.
Take care, Melea!
Kris
Hi Kris,
I’m so sorry that you are not feeling well. About 3 months ago I had “cardiac event” as the dr called it and ended up in ER by ambulance and after all the testing and not being able to eat I starting having alot of pain from the SOD so they gave me diluadid and boy that helped alot! The nurses and dr then were wonderful! Several times I have been tempted to go to the ER because the pain meds I take just don’t do much when I am having a bad flare up but I always wondered if they would think I was just a drug seeker or how I would be treated. Do you tell them you have SOD when you go in to the ER Kris? Do they know what that is?
I have my ERCP on the 3rd..I think it was Brett and Bedhead that were having theirs done yesterday. I hope they are both better now and the pain is gone for them. Must be going around in the air because I have also not been feeling very well the past few days. I came home early last night from work. I have found that with this chronic pain that if I cannot take enough meds at work to stay ahead of it then it can get real bad real quick. It is much harder to get the pain to go away if I can’t stay on top of it when it first begins.
I hope you are doing much better now Kris. I know that after a bad flare up then the next day I am just sore i guess you can call it from the muscle spasming. Like having a charley horse.
Melea I do hope you are feeling better. I had labs done one day from my new primary dr and thought she was crazy when she said she wanted to test my Vitamin D levels..I said ok but it’s fine I’m sure! Well i was very low so I was taking 50,000 IU once weekly and now she told me I just need maintenance so I am taking 1,000 IU once daily. I never did feel any different when it was low or now. I think it can affect your muscles and energy levels. Did they give you Vitamin D in the hospital?
Hi Karen! I couldn’t reply to your post to me, so I’m replying to the once you sent Melea. I just don’t understand how this works sometimes! If I have to go to the ER, I always now go to the ER at the U of M. All of my records are there, and I also have all of my prescriptions filled at the outpatient pharmacy there. I don’t want there to be any question about why I’m there. I do tell them that I have SOD and also abdominal adhesions, which they can quickly confirm from my records. The adhesions can cause partial intermittent bowel obstructions. Sometimes I can’t tell what is going on! Yesterday day was really tough, but today is much better.
Some nurses and doctors know right away what SOD is and some don’t. If you have to go to the ER, is it possible for you to go to the hospital that your doctor is affiliated with? It really helps if they can access your records. I’m sorry about confusing your ERCP date with Bedhead’s. I hope it went well for her, too.
I know exactly what you mean about pain getting out of control quickly if you don’t stay on top of the meds. For that reason, I now take them every 3-4 hours from the time I get up until late afternoon. I can cope at home with more pain, but not at work!
I hope that you are feeling better soon. Please stay in touch! Did I ever give you my email address? I think I did, but just in case, it’s krisl1204@yahoo.com.
Take care!
Kris
Your Vitamin D was low because you are not absorbing any fat. You are passing it all. Viamin A D E & K are all fat absorbed. Hopefully you will get your sunshine soon ! That will help ! Glad to see you are done with it !
Morning everyone, Kris, I have never heard of Dilaudid, does it make you tired or anything?
Melea, I hope you are feeling ok today after your ERCP. I can’t wait to see Dr. Freeman, I’m going to ask him if his ears ring a lot, because of all of us talking about him.. LOL
Nymphaea, I would like to read a copy of that, my email is meeen1@msn.com ( I’m not really mean, it’s an inside joke between me and my best friend) Michele/MN
Hi! It is a strong pain medication. It does make me pretty drowsy, but like Michele A. said, at that point one should be napping! It’s especially strong in IV form, but works very quickly. No, I don’t think anyone has heard from Brett or Bedhead yet after their ERCP’s.
Dilaudid is a form of the old fashioned drug you probably heard of in movies Laudum ? Its another lovely opiate, If you give to much to a patient their oxygen level drops too low and they can pass out or die. Ask me how I know. LOL . I swear when I walk into an ER they can’t get nothing straight !
Oh no! That does not sounds like a good experience! Whew! You came out of it ok!
I do remember the reference in old movies to Laudum. I like trivia stuff. Thanks for sharing!
I had Dilaudid after my GB surgery after the usual (Percocet, Vicodin) did nothing. It was awesome. Pretty powerful stuff, so it did make me tired (though it could have been the recovery itself) – but Kris if you are in so much pain that you need it, maybe it’s not the worst thing to be home napping! Hope it works well for you and you feel better soon! I was so sorry to see that you landed back in the ER.
Michele/MN sorry that you aren’t getting a clear answer. Hope you are feeling OK and your tests go well. Isn’t it something, one test usually just leads to another… sounds like overall you are in very good hands though. Let us know how it goes and if you get more clarification on your results.
I guess no one has independently heard from Brett since the ERCP?
I returned home today from Charleston, S.C. I had an ERCP done by Dr. Peter Cotton. The manometry was normal. The main pancreatic duct was narrow , so he did a ballon stent. I do not have SOD. I did get a dx tho, I have chronic pancreatitis. The pain I have been dealing with all this time was my pancreas.
I wish you all the best of luck with your SOD problems. I highly recommend MUSC and Dr. Peter Cotton. A little info about Dr. Cotton. He is the worlds expert on ERCP. He is who brought the procedure to the United States from Europe. As my GI put it, “Cotton is the godfather of the ERCP”. I was treated very well by the entire staff. It is their practice to keep you over night after an ERCP just in case pancreatitis sets in. I stayed over night and the next day because he wanted me to have an EUS to confirm the chronic pancreatitis dx and to make sure there were no cysts or cancer.
I asked how many ERCP’s they do per day and was told as many as 6-8 per day. If you go to a teaching school such as MUSC it is key that you not sign consent forms to let a resident or fellow do the procedure, wait until you speak to the professer and ask that he or she do your procedure, you have that right. They won’t tell you that because it is a teaching school but speak up for yourself. I certainly didnt want someone practicing on me, so I asked Dr. Cotton if he would perform my ERCP and he did. Same when I had my EUS I asked and it wasnt a problem.
In closing I really wish you all find treatment for your SOD.
Note to Brett… I asked about botox and Dr. Cotton has used it about 50 times.
Thank you for your update. How are you feeling? What is the next course of action for you? You are right on about not letting the residents perform the procedure Observation is OK, actually doing the procedure is not! I will be interested in your next step. Did you have the EUS? I’ve done a lot of research and communication with others who have SOD. My understanding is that SOD always leads to either chronic or acute pancreatitis. I really hope that you will continue to communciate with us and let us know how you’re doing. I also hope that your doctors have a plan laid out to help you cope. I’m happy for you that you finally have the answers. I wish you all the best and hope to hear from you again soon! Can I also ask if you ever had elevated enzymes and LFTs before your ERCP? I apologize for not remembering your full story. You know how posts go on here…..
Kris
Hello everyone!
Well I finally had to go to the ER last night. I just couldn’t get the pain to go away. The dr and the nurse were wonderful. They had actually heard of SOD and were very understanding. The Dr said he was impressed that I knew what ALT and AST were. I told him that with this disease I keep real close tabs on those numbers. They came back elevated last night which I kind of figured they would. He was surprised that I am having to wait so long to have my ERCP done. They gave me diluadid again which helped so much. They gave me one shot IV and it didn’t go completely away so the nurse gave me another shot which stopped the pain. The Dr also wrote me a prescription for #30 more of them to get me through the weekend. He was a very understanding Dr. which I was very thankful for. I had called my dr before going to the ER and left a message for her that I had taken 2 pain pills and got no relief so half hour later I took another 1 1/2 tablets with still no pIn relief and wanted to know how much I could take and still be ok or what should I do? The nurse called me back and said that I am only supposed to be taking 5 tablets daily and if I run out then I am “cold turkey” because the dr wouldn’t fill it early. I said I am not asking her to fill it early I still have alot left. I’m just asking what to do now since I can’t get the pain to go away. The nurse said that I have already overdosed on the tylenol..I said no I haven’t it’s only 325 mg of tylenol and you can have 4 gms in 24 hours so a person can take 12 of those a day and still be within the guidlines of tylenol. She was such a witch..she said well let me ask the dr and I’ll get back to you. My husband was soooo mad he got in the car and started going down to the dr’s office to talk to her and tell her what the nurse said. In the meantime the nurse called me back and said I needed o go to the ER. I called my husband and he turned around and got me and we headed to the ER. My dr could have just written a prescription for something stronger when I get these bad flare ups and saved me 6 hours in the ER but she wouldn’t. I have an appointment already scheduled with her on Monday and she is going to hear about it once again how I was treated by the nurse. I can’t believe how rude people can be when they know nothing about this disease. I have mentioned before in previous posts about how reluctant I was to go to the ER for this pain but last night I couldn’t hold out. I am glad that I went now.
How is everyone else feeling? Still no word from Brett?
Bedhead..I am so glad that you are doing ok and got some answers. Like Kris I am also interested in you next step of treatment. Please keep us posted .
Karen,
I am sorry that things are going so poorly. I can’t beleive how long you have to wait for you ERCP either, its ridiculous. When you feel bad, you do not need any other frustrations.
Hi Karen! I’m so sorry you had to go into the ER, but I’m also very glad that you did and found an empathetic doctor and nurses once you were there. Dr. Freeman and Dr. Carter (my dr. at the Palliative Care Center) have both said that sometimes, the IV pain meds is the only thing you can do to break the pain cycle.
I ended up in the ER myself last Monday. While at work, I had a sudden huge pain in the usual spot under my right rib cage, but this time it radiated into my breastbone. I got scared about whether or not it could be my heart. I had one of my employees dirve me to the ER. When I have to go, I always go to the U of M where my records are. The dr., a woman, was a little hesitant at first to give me pain medication. She said she had to read my records first. I said “please do.” About 15 mins later, in comes the nurse with the IV Zofran and IV Dilaudid. It is the only thing that works for me. They ran the LFT, AST and LFT tests, which, as usual, were normal. They also did some other blood test where the tube of it was put on ice to send to the lab. THe nurse said it was testing for metabolic changes and that normal would be a really good thing, which is was. The dr. told the nurse to give me another dose of Dilaudid and to send me home to contact Dr. Freeman.
I let him know via email that I was on the ER. I asked alot of questions about whether or not one could be in the condition of chronic pancreatits without having elevated enzymes, etc. He replied to my email, but didn’t address the questions. I don’t blame him. He probably doesn’t want his opinions in writing about a potential diagnosis without having further conversations with me. Plus, he should be compensated for his time. I then emailed his nurse and asked for an appt., just to address questions. I have an appt. on the 7th of Dec.
I had a rough week, but started feeling better yesterday. I’m getting concerned because I feel so weak sometimes. I’ve lost about 5 lbs. over the last month because of the nausea and increased pain when I eat. I seem to have come out of this last flare-up that really has lasted about a month! Each time I have one, it seems like it takes longer and longer to come out of it. Do you ever feel weak from all of this? Have you still been able to work? I made it through last week working, but I don’t know how!
I see Dr. Carter on Monday. When I saw him a month ago, he wanted me to start on a long acting pain medication. I told him I wanted to hold off because I can take the Oxycodone and function. I’m concerned what another type of pain med will do to me in terms of being able to function. I will discuss this with him and consider it. I decided to take next week off as I still have 7 remaining days of vacation to use before year end. That may be a good time to try something new to see what it does. Other than that, I don’t know that there are any other treatment options available. Dr. Freeman has said he won’t cut my SO again. I’m assuming he doesn’t want to for concern about scarring as Brett referred to in his post. That will be one of my questions. He’s also said he doens’t want to go into my pancreatic ducts even though I have Pancreas Divisum because that could make it worse. Why will be another question. While I certainly don’t want any risky procedures done, I just wish there were something that could fix me. You can read in my post to Brett about my brother, who is SOD I and had a sphincertoplasty successfuly done. I will also ask about that, but I di know it’s a massive, scary surgery.
I’m sorry about that judgemental nurse at your doctor’s office. Does she not know that you work in a pharmacy and have a higher than the average person’s knowledge about medications and safety? I’m assuming you like the doctor or you wouldn’t still be going to that office. When is your ERCP?
Sorry I didn’t reply sooner. The screen on my laptop died Sat. am. I felt like my right arm was gone!
I’ve got my work laptop at home now until I get my own replaced.
I hope you are doing better! I’ll look forward to hearing from you again.
Kris
Kris,
I could write your responses myself Kris! You are so much like what I am going through as well! You really do help me by letting me know what Dr. Freeman says to you. Thanks so much for that. My new GI doc that will be doing my ERCP on the 3rd said that if the stenting for a year doesn’t work then he would refer me to a surgeon and would just “fillet it open” meaning a spincterplasty. I asked what the long term effects of that would be and he said nothing. I have heard that it is kind of a last resort procedure? I need to do more research on that before I go that route.
I have also been told by my primary dr that maybe I need something longer acting and will discuss this with my pain management dr when I see him for the first time this Friday. The ER doc gave me a script for Diluadid and that has helped me alot when it gets real bad.
I am working but just cut my hours down to 4 days a week now can barely make it through the days sometimes. Yesterday was a bad one. I would have stayed home but there was no one there to cover for me so I went in for 9 hours..it was brutal! My pain is getting worse now after I eat which used to make it better and I am getting more nauseated as well. The ER doc and the new GI doc both asked me if I have ever been diagnosed with chronic pancreatitis. I said no. I need to see what the symptoms of that is.
I am so weak during a flare up and afterward I am just so sore..like when you get a charley horse in your leg then it’s sore the next day. My energy level is almost non-existent now.
I have also wondered about continued cutting of the spincter and scar tissue building up and the new GI doc said you can cut it as many times as you need to. Then he said he will probably stent for a year.
I am so sorry that you ended up in the ER also..I am just glad that the Dr’s are able to read your charts and can understand what is going on with you. I really lucked out when I went in. The dr knew what SOD was! Please keep me updated on what your pain dr says to you. What is your next step? Are you at just pain management at this point?
Again thanks for all of your insight and information..it really does help me alot!!
Thanks Kris,
Karen
Boy, we do sound like we’re in the exact same place! It’s the same for me, the pain is now worse after I eat where eating seemed to help before. And, the nausea is worse overall. I really appreciate your support as well. It helps me so much to be able to share our common stories and also to hear what your doctors say, too. I just wish we hadn’t met this way.
I am just in pain management at this point. I’m just taking a quick break at work right now. I’ll write more later. Hang in there!
Kris
Well a lot has happened since my last post and have a lot of new information I think posters here will find useful.
Firstly my feeling you must attend a speciality center has been completely validated.
I had an ERCP 2 days ago. They asked thoroughly about past reactions to anaesthetic before starting. They doc assurred me they would us propofol not pethedine – this is routine for them as pethadine cases SO spasm.
The ERCP found I had pancreas diversium – 2 ducts- one inside the ampulla with the SO and a second exit further down. I also had a diverticulum close to the ampulla.
The Doc spent over an hour exploring. She did a die injection into the pancreatic ducts (ERCP) and manomety testing of the pancreatic duct. Pressures were normal.
She could not enter the bile duct and test the SO due to the diversium and the diverticuli so the SO was not tested. As such she ordered a DIDA scan – a more sophistocated HIDA scan.
The test was completely normal – apparently a DIDA scan can’t differentiate well between SOD or GB dysfunction – if you have a abnormal ejection fraction. BUT if the ejection fraction is normal you can rule out SOD.
Basically if the SO is spasming the GB can’t eject bile and it backs up casusing pain.This shows up as a low EF. Normal EF means the SO must be open.
I had no increase in pain or pancreatitus after both tests. The doc is now convinced it is duodenal hyperalgesia and IBS. The studies I’ve presented here pretty much confirm it.
So it seems if you are type 111, normal enzymes and duct diameter, the probability is that it is not SOD . There are exceptions as shown here but the probability is low – and only 8% get relief at 2 years with sphincterotomy.
A big point of concern is that endoscopiclly cutting the SO is not to be taken lightly. Apparently the heat and trauma of the cautery wire can cause it to reclose and scar later with a quite high frequency (as reported here) – much more than the 10% at 10 years we are told. This is far less of a problem with open sphincteroplasty but that proceedure is scary.
The Doc sees a lot of reclosures – at least 30% – she does not recut as the problem almost always reoccurs after it has happened once. Rather they use progressive senting – small to bigger – to stretch it open.
Cutting a perfectly healthy SO can lead to a scarred closed sphincter later an add SO problmes to preexisting issues.
She also told me cutting the SO propely reduces both SO and pancreatic duct pressures so pancreatic duct stenting is unnecessary. Her rate of pancreatitus was 4%.
So it seems viscreral hyperalgesia can cause severe pain that mimics SOD and a lot of patients are getting ERCPs and ES unnecessarily which can lead to other problems. So you definitely want manometry and speciality center testing before considering ES. My first doc was going to blindly cut it if I begged him and was concinved the duodeneum could not be a source of pain.
As for the real source of the pain it seems visceral hyperalgesia is the problem. It’s a new and poorly understood area but it seems it’s similar to other chronic pain syndromes. Recent research shows
the glial cells are involved in sensitising the pain receptors and there are drugs now that may be directed at this.
What I know for sure is – pethedine, opiates, codine, SSRIs and caffine are major triggers. Everybody should insist on propofol if there is any doubt. After a major invasive proceedures with pancreatic duct manipulation and injection I had no increased pain at all and it’s quite clear the initial endoscopy with pethadine started all this problem.
Most doc don’t believe that the sot of pain we get can arise for the duodeneum and bowel alone and we must have psychological issues. If you’re type 111 you need to be very careful, do you own research and be your own advocated.
Wow Brett
What a relief for you finally, you must be relieved to finally have the diagnosis of all your pain. Reading your post was very interesting, I was curious about visceral hyperalgesia , so went and did some reading on the subject. It’s amazing that it all stems to the CNS , and that the sensory neurons can produce so much pain within our internal organs , just by consuming food. One question I have for you , when this pain all began did you have some illness or event that may have triggered it all off?Also what medications have they prescribed to you for when you get the pain? I understand Propofol to be used to help with the induction and maintenance of anaesthetics, so I can see why it would have helped with post manipulation pain. It makes me question my own diagnosis , you have given me inspiration to speak up next time and do my own research into whats foing on within my body. I’m seriously thinking for the future of going to the specialty centre that you went to , they obviously know shat there talking about. They gave you the full works by the sounds of it , and at least now you know it’s not your SO. How was she towards you in regards to all the information and research you had done? Well Brett I’m so happy for you mate , and lets hope your now on your way to a long , healthy and pain free life . I hope to talk again soon .
Hi Brett! It’s great to hear from you! I’m so glad you’re doing well. You certainly did learn alot. Dr. Freeman has also told me that he would not recut my SO, even though he found significantly high pressure is my CBD. The scarring issue is probably the reason. I also have pancreas divisum, as does my brother. Divisum is a congential vs. hereditary birth defect. Both the radiologist who discovered it through an EUS and Dr. Freeman were surprised when I advised them of my brother, as the odds of 2 siblings with this is highly unusual. My brother is SOD I. He had a severe acute attack of pancreatitis about 9 years ago with a pseudocyst the size of a basketball. He was very ill, hospitalized for weeks. After he had surgery to remove the pseudocyst and had recovered, he had the sphincteroplasty done. He went through a tough couple of years recovering from the whole thing and now is primarily able to control it by diet, although he has an occasional flare-up.
Maybe the sphincteroplasty is why he has done better than I have.
Now, the question for you is, are there medications that will be able to control the pain you cope with? Have you started them yet? Do you know how this condition started? Questions, questions!
Thanks so much for sharing your story. I hope you will still continue to communicate with us and let us know even though you’re technically “SODless”!
Have a good one, Brett!
Kris
Hello Everyone, Had a rough couple of days, should have went to te ER on Sunday night, but didn’t want to be stuck there for five hours, so I went in yesterday morning to my regular Dr, and had to get a Morphine shot for the pain, which only helped a few hours, then I had to take my pain meds. Brett, I’m glad you are doing ok, and we are all glad to have you back.
Kris when you get that Dilaudid shot does it make you tired? This is the second time I have got a Morphine shot, and I could not sleep at all when I got home. I started to doze off and then I was up in a fog for the rest of the day. I am at work today, but I am really struggling to stay. I’m still in pain, and I am so tired It’s hard to keep my eyes open. I hope everyone is having a tolerable day!!!
Michele/Mn
Hi! I’m sorry you’re having such a hard time. I know all too well what that is like. Dilaudid and Morphine have the same effect on me, they keep me awake and foggy. I hate having to take these meds. I’m doing better these last 2 days. I wish I knew why so I could do it all the time. Not perfect by any stretch, but better. It just seems that these flare-ups happen, they take longer to come out of and I really can’t pinpoint what causes them or what helps them to go away, other than time. It’s frustrating, as we all know too well. I hope you get some rest tonight and feel a little better tomorrow.
Take care, Michele!
Kris
I am sorry to hear that so many of you are having a bad time! Michele/MN – have you ever been given Dilaudid pills to take at home for pain? I had them after my GB surgery and I slept a lot – not sure if that also was because of the recovery but I was able to sleep. I took Percocet last week and was loopy but also unable to sleep and somewhat anxious, which was not something that I remember happening before. Percocet and Vicodin did nothing for me after the surgery, which is why I got the “better” stuff.
Brett and Bedhead, glad to see you back. Brett, the findings you post are very interesting. Maybe this could guide the GI medical community from thinking there is no such thing as SOD III to something along the lines of – if you otherwise would be diagnosed as SOD III, these are the other things that should be considered. I have read a lot about doctors not believing that SOD III exists, but perhaps it means that instead of dismissing people with biliary pain but no other objective findings, there should be other avenues to explore. I am lucky not to have been dismissed by my doctor (who thinks probably not SOD absent raised enzyme levels or positive scan but willing to keep retesting and looking for other causes), but clearly many people are not. I hope there are more doctors out there like yours who really went after the root of your pain and may have found an answer. Do you still have your GB? Do you think the DIDA scan would be helpful in evaluating for SOD post GB removal? We have discussed the likelihood that the HIDA scan very well may not be.
Kris and Karen, hope you are feeling better soon too!! Karen, if I were there I would have gone with your husband to yell at the doctor! The way some of you have been treated by doctors acting like you are crack addicts really adds insult to injury.
Hope everyone feels good and/or feels better!
Michele A.
Thanks for the comments guys.
I’m quite sure SOD type111 exists but it’s hard to diagnose – impossible without manometry- and there are a lot of other conditions that mimic the symptoms. What is clear is you must not cut a perfectly healthy sphincter as a test treatment – which is a fairly common practice. I think this is where botox has a crucial and under used diagnostic role in type 111 but it seems a simple DIDA scan can accurately rule the SO out in some cases.
I’m not sure where I am now but it’s clear I’m going to have to figure this out myself – as I’ve run out of tests. What I need is a doctor House and he’s only on TV.
I’ve been reading up on chronic pain syndromes and new medications that are proving successful in controlling hyperalgesia. Naloxone looks promising but I just can’t accept this is the problem in my case.
I’m a bit concerned about the doctor being unable to actually test the SO and get a canula in the duct. Her report says it’s due to the angulation as a result of the divisum and not stricture. I figured if she can’t get a canula in there it must be a problem with it emptying but she doesn’t think so and the DIDA scan seems to prove this.
What amazes me is I had an endoscopy, CT scan, MRCP, US and none picked up the divisum or the diverticuli. The second pancreatic duct exit is quite large and the diviticulum is 5 mm – larger than many cancers so….? I think it’s clear folks with negative tests results need to keep pushing and get the best help they can find.
My GB is intact and the DIDA scan found a 96% GBEF (ejection fraction) at 60 mnutes. So it’s at least it’s ejecting properly. As she says, this most likely rules out the SO as a problem. However I just read you can have quite bad chronic GB inflammation and a normal DIDA scan. You’d think the stimulated contraction with CCK would at least reproduce pain but apparently this is not always the case.
So a GB problem is still possible but I’m now at the stage where the only way to find out for sure is to remove it. I’m working from signs and symptoms now to try to figure this out.
Since it’s flares with opiates but propofol is OK, normal GBEF – maybe not a GB problem. Drinking water significantly relieves attacks so does sub lingual nitrates – sounds like smooth muscle spasming with some sort of food blockage stimulating attacks.
The colonoscopy I had only goes to the terminal ileum (upper end of the large bowel – beginning really if you go top to bottom ) the endoscopy only goes to the first half of the duodenum. That leaves the remainder of the duodenum, the jejunum and the ilium unchecked ie most of the small intestine. Given they’ve already found one diverticuli it seems quite possible there are more and this is the root of the problem.
Treatment is antibiotics anti inflammatories and a high fiber diet so it’s worth a try starting here.
For those reporting recurrent problems with endoscopic ES I think I’d try progressive stenting first and avoid re-cuts but I’d be concerned about ductal damage. The doc told me the heat from the cutting wire is what causes scarring and potential reclosure. When you later re cut it, you add more heat damage and scarring and a second reclosure is almost guaranteed.
Open sphincteroplasty is ultimately a better solution but apparently you’re in hospital for 7 days after on an IV feed tube afterward – doesn’t sound like fun.
Hi Brett,
Glad you are doing well. There are some commonalities that we all have that don’t seem to be examined in available research Data. We know that pancreas divisum effects 7% of our global society, but do we know what percentage of these also have SOD ? Another stat I once researched was that 1/1000 get pancreatitis just from pancreas divisum alone. Yet PD is so extremely hard to find, I know in my own personal case it took a CAT SCAN w/ a contrast and a “PERFECT” result for my pancreas specialist to go with the Radiologist and look at my CAT slice by slice in over 100 slices to find my pancreas was COMPLETELY severed with divisum. Also my labs for the past 5 years have been perfect, but my ducts were too thin and immature to perform manometry. My original Sphincterotomy, was amazingly sucessful for 4 months and BINGO it wore off with my next attack + minor papilla sphincterotomy/reovery included lasted 5 ms. with 1 month total recovery and then while placed on Neurontin for 2 ms for MS prodrome, absolute total resolution of ALL SOD problems until I have to come off the Nuerontin for 10 lbs of weight gain. Then I go it alone back on Enzymes only for 2 months and Bingo . . .another Serious SOD attack. We add Ursodial (Synthetic Bear Bile) to the mix and I progress to eating like a 5yr old. Then 2 weeks later and Bingo. . . I’m back where I started. So, now I’m on 4 Pancreatase MT20’s per meal, 300mg Usodial per meal and 1200mg Nuerontin per night for sucessful pain relief and happy that yesterday I had a cupcake !
One connection to my atttacks is that they seem to have a similiar precursor, and that is antibiotic treatment. I have IC of the bladder since I was 5 and we are more prone to bladder infections. My last two traveled to my kidney and lasted a very long time 3 1/2 weeks and 6 weeks respectively. Even my very first serious SOD attack came after a bout of antibiotics. I’ve read that Doxycycline and Macrobid are two offenders and I was on both from August 19th to Oct 5th along with Ciprofloxin.
We live in a very chemically treated society and I know in these posts we all speak mainly about our SOD, but perhaps we should also start sharing other diseases we have that might be relevant to begin to start seeing the patterns. I don’t mind being the 1st:
Interstitial Cystitis of the Bladder 38yrs.
Hashimotos Thyroid 27yrs.
Basilar Artery Migraines 20 years
SOD 5 1/2 years
Possible MS Prodrome 6 ms.
Flares brought on my Hep B Vaccine & Antibiotics.
Complete 100% Pain Relief from Gabapentin/Nuerontin
STILL BEING ABLE TO FINISH MY MEDICAL DEGREE AND HELP OTHERS : PRICELESS
Many, Many thanks Nymph,
(Sorry couldn’t resist the name contraction) Your response is a big help.
I’ve just done a lot more reading on divisum (it was only touched on in my degree and I don’t specialize in this area so I never use the little I did learn). After more reading I’m at a bit of a loss where to go.
It seems in the vast majority of cases PD are asymptomatic but it can rarely cause pancreatitus alone as you say. I suspect this is by partial blockage of the minor duct (ventral I think) which carries 70% of the pancreatic fluids to the duodeneum with the major duct inside the ampula carrying only 30% – and your case seems to indicate such – given the initial success of sphincterotomy to the minor papilla.
But why did they go for pancreatic enzymes if all your blood tests for enzyme levels were normal – intuition?
What I don’t understand is how PD can be the source of symptoms in the absence of documented pancreatitus or elevated enzymes as your case – and several websites suggest ? Perhaps minor blockage insufficient to elevate enzymes may be an issue – especially with ducts too narrow to cannulate? How did they decide to do the sphincteroplasties without manometry evidence?
I had both ducts cannulated , both manomerty tested (with normal pressures) and both injected with die for the ERCP. My wonderful doc took hours investigating and expected some pretty bad symptoms afterward. Yet I got no pancreatitus or increase in symptoms at all following the exhaustive testing. If I had pancreas issues I think they would have shown up after all that.
So I suspect as the doc says, my PD is asymptomatic but I’ve just written her to see if there’s any chance PD can be symptomatic with normal pressures and duct diameters in both ducts just to be sure. I’ve ask about the diverticuli as well.
I’ve just found that having a diverticului close to the ampula can be a real problem causing mechanical distortion and obstruction of the CBD resulting in cholangitis, fever jaundice and mid abdominal pain . ( I have one out of 3).
Furthermore a negative DIDA scan apparently doesn’t rule out low grade billary obstruction or SOD only higher grade obstructions in type 11 and 111. It also has no bearing at all on acalculous GB disease.
So it could be symptoms from severe IBS as the doc now thinks, PD, diverticuli causing obstruction, diverticuli elsewhere with diverticulitis, acalculous GB, and still possibly SOD.
I’m just not sure where to go from here but I wish lyrica/gabapentin worked as well for me. I’m very happy to hear it works so well for you. I was on 100 mg per day 2 times a day – a pretty low dose – maybe if I tried again with a higher dose?
Just reading your history and your cheery attitude puts me to shame. All the best with med school – we sure do need more female docs. The one I just saw was fantastic.
If she’s kind enough to respond top my email questions I post an update.
Hello Brett,
My code name is due to my practitioner status, as my real name is very unique, and as I collect water lillies, this is Latin for water lilly !
But I have some clarifications on my case for you. The terms SOD and “Biliary Diskenesia” were thrown around for the first time in my life just 1 ms. prior to my cholecystectomy. But at that time I was 38 and told I was too young in the state of NY to have an ERCP w/o findings, that is no stones blockages or positive labs.
However I did have a low Ejection fraction in my very painful Hida-Scan test. This confirmed the need for a lap chole in their minds and it was done. In recovery my significant other came to visit me and saw everyone silently sipping tea and apple juice and I was the only one crying my eyes out in pain begging for more pain meds and telling him not to leave and that something was very wrong, but he kept saying stop crying, nobody else is ! 48 hours later I was rushed back to the ER from my home w/ a subsequent bile leak in the Fossa. (Sphincters out of hand perhaps ?)
Although this did delay my going back to work by a couple of weeks, I did eventually go back to work and eat again. And 3 ms. later I had Hep B shot 2 and Hep B shot 3 was given 4 ms. later, thats when I noticed yellow stools and tea colored urine. Figuring I had had too much ice tea that week, I shrugged it off. I left for India on an adventurous vacation. But when I returned, July ‘05, my doc was vacationing and I went to another for a check up due to contacting an infected finger which was healing and a case of traveler’s diarrhea. She said,”Hey I have these enzymes samples here, that are new and might help your digestion a bit while you recover completely.”
I said, “I know what enzymes are, the natural store gave them to me a year ago when my gall bladder pained me out of the blue for 2 weeks and then vanished”
“Oh well these are stronger, you’ll like them. Nobody’s using them, so take the whole box !”
But after a couple of days I thought “I’m not taking these, these are for people who have Pancreatitis and I don’t have that !!!!”
My own Dr. concurred when she returned and I shelved them in my cabinet.
It wasn’t until Sept ‘05 that I was screaming bloody murder w/ RUQ pain boring through to my back and radiating up to my right shoulder, the day after eating fried cheese blintzes and a chocolate mousse desert at a local diner.
I was hospitalized for 8 days and again they thought ERCP should be done to Rule out SOD and after a 2 day NPO prep, the test was denied due to my age being too young (Now 39) and absence of findings w/ the risk of pancreatitis. Now on the 8th day I received a call from my friends who worked the USA military base and they told me that it was very strange that I was being denied this test due to a risk of pancreatitis when I had the very same SYMPTOMS ! So I was for warned !
In the months to come I was scheduled various tests endoscopy, colonoscopy and MRCP. MRCP was the only test to show a finding of an inflamed pancreatic head, but it was possibly to be dismissed as an artifact due to its showing on only 1 axial slice. I knew better.
My care was transferred to a sister hospital’s care and I had an appt. w/ a Liver specialist. After my first 5 minutes of speaking he said, “I’m sorry I’m not a pancreas specialist, but I’ll find you the best I know “. By the time I met her, it was 4 ms. later and I was 30 lbs lighter. After a duodenalcolonoscopy and perfect labs, no sign of celiac or other pathology, She scheduled me a CAT w/ a contrast and a EUS. Well the CAT w/ the contrast at first was reported perfect but she made an appt. to meet w/ the radiologist and they spent hours looking at every slice and finally pieced together pancreas divisum. With this diagnosis she and her team treated me for 2 years on ironically the same enzymes I had in my cubbard which I told her I had been using on my own and that they were the only way I could eat with some reduction in my pain. Every year I was given an MRI as a check up and they just kept ordering enzymes. Until my attack of July ‘08. Her hospital, New York Prestbyterian, could do nothing for my attack except give me a basilar artery migraine with stoke symptoms from inducing a fast. And coerce me into having another endoscopy with no findings. They Dilauded me into oblivion and sent me home telling me to follow up with my GI. MY GI WAS THEIR GI !!! So, I knew what I must do. The previous December ‘07, I had gone through a terrible shock and couldn’t eat with out burping and had a burning pain in my stomache. The ER thought it could be an ulcer and I looked in my providers book and found a GI in my town of Queens, being that I just didn’t feel up to going all the way into Manhattan, in the winter when I felt so sick. While I waited my turn, I saw a sign posted that he had won a teacher of the year award from his medical students for endoscopy. So, when he too wanted to do an endoscopy on me in his office to rule out an ulcer the next day. I of course agreed. But, interestingly enough when he had asked for my history and I explained, he knew I had described what his SOD patients were, but being asymptomatic at the time and living on enzymes sucessfully he let that matter go. My case of gastritis looked to be chemical in nature as my insides were raw. But after 1 ms or Nexium, it all cleared up. And emotionally I got over my shock.
So, in ‘08 when I was told to return to my GI I now decided he was my GI ! And after my story revealed, I had now had 2/3 of my medical degree completed and his diagnosis of SOD was simply a validation of my self diagnosis and I agreed to an emergency Sphincterotomy. He explained the manometry procedure done in Indiana but said, he did not do it himself and I opted for the sphincterotomy regardless. When he got in there, he found my Spincter of Oddi completely swelled shut and he gave it a giant opening ! And 4 ms later when he was at a loss as to what to do with my case, I went to Indiana for a 2nd oppinion and another ERCP and this time a stented Minor papilla Feb ‘09 and I have still had to rely on Enzymes or Nuerontin since then. And I did have the pain change after the procedure as it now had travelled up to my xiphoid process and I though I was having a heart attack because it radiated up over both sides of my chest. I now for the first time had elevated LIPASE post ERCP, however such resolved. Other than some lymph nodes at the site of the minor papilla stent, the EUS findings were unremarkable.
My most recent attack has me on the Pancreatase, Ursodial & Nuerontin(Gabapentin)which is an anti spasmotic and anti epileptic. (I’m afraid you are a bit confused, Lyrica (Pregabalin) is a common RA medication along w/ treating other auto immune pathologies.) I am not taking the latter. I did titrate up to the dose of 2400mg this past summer, but now, I’m trying to take the minum of 1200mg on during my eating hours, thinking my weight wont get out of hand. If herbs work to any sucess, our next plan is for me to take the Nuerontin every other day. As it has proven to keep my migraines at bay along with my MS symptoms.
My area of specialty is acupuncture, so I finished my degree in April ‘09 and have my own practice.
I do believe your dosage of Nuerontin to be a baby’s dose, and since this needs to be titrated up every 2 weeks as needed, and I’m a 150lb. 5′7″ female who needs 100mg per waking hour respectively maybe you should try again.
I’m glad my info can help you, but I thought that I should add : Between Jan 2003 & Dec 2007, I did use Vicodin for IC & Migraine (not knowing that it simply drugged me into a migraine of longer duration.) I always wondered if this is what truly caused my sphincters failure in the end, but how does one explain my attack of July ‘08 which is basically still ongoing despite RX, a 2nd spinterotomy and deitary restrictions, and no Vicodin for now almost 2 years ?
I hope you can deaden your pain symdrome with proper levels of Nuerontin(Gabapentin), because if it helps me with 3 of my problems it could help you with one !
Nymphaea
Thanks Nymph,
Your story is amazing – and gives me inspiration not to give up yet.
Lyrica is Gabapentin/Neurontin in Australia. Acetaminophen is paracetamol here for example – quite confusing and it’s tripped me up a few times.
I thought the dose of neurontin was way too low as well but the GI specialist insisted this was the effective dose in my case and more would bring on side effects.
My symptoms just make no sense to me at all and I just can’t accept that they are due to IBS or even visceral hyperalgesia alone.
I get early satiety with ever meal after about 5 minutes and can only eat small amounts. This usually progresses to a lot of pressure and sometimes pain in 10 minutes. Usually the pain is tolerable but I get frequent attacks that are not.
During the attacks I get sweating, elevated HR, hot flushing with waves of nausea and can black out if standing.
Opiates, codine, caffine, alcohol, wheat bran, SSRIs (effexor) large meals and tomato paste are definite triggers of severe attack. Drinking a lot of water and using the nitrate spray definitely helps.
Like you I used to get bright yellow watery diarrhea with each attack but this has stopped since I’ve been taking doxipin – (a TCA and anticholenergic).
Prior to the endoscopy 10 months ago I only had intermittent attacks with minimal pain between. Now I have constant pain with frequent attacks.
Following the recent endoscopy and ERCP with propofol
I had no exacerbation so the anesthetic (and IV morphine after for the attack) was definitely the trigger and not the actual proceedure.
Given it seems the now the billary and pancreatic ducts and sphincters are OK. That only leaves small bowel diverticuli, gasteroparesis and maybe acalculous GB. I definitely have a motility disorder and get a lot of loud rumbling.
I just can’t believe I can get this pain level with no evidence of pathology. The doc I saw for the ERCP has agreed to answer some questions for me so I may have more information soon. In the meantime I think I’ll get some more neurontin.
Brett,
3 out of the 5 of the GI doctors I say thought that the pancreas divisum was a bad things contributing to my problems. 2 out of the 5 thought well allot of people have that and it was not a part of the problem, so it seems that GI doctors can’t agree on that.
I thought that having an ejection fraction of greater than 70 could be as problematic as having a low ejection fraction, but I am not sure where I read that.
Well guys, I guess this report explains everything if you want expert care , go to the country with the most people. Looks like India is handling this much better than the USA !!!
Pancreas divisum (PD) is the most common congenital variant of the pancreas, affecting 5% to 14% of the population. The ventral duct only drains the ventral pancreas through the major papilla, whereas the majority of the pancreas drains via the dorsal duct through the minor papilla. We report the case of a 21-year-old woman with recurrent acute pancreatitis who presented with the rare finding of choledochal cyst and pancreas divisum (PD). She underwent minor papilla sphincterotomy and pancreatic duct stenting. Comparable literature findings of PD and choledochal cyst are discussed with regard to the presented case.
Keywords: Bile duct cysts, choledochal cyst, congenital variants, pancreas divisum, pancreatobiliary malunion
How to cite this article:
Arulprakash S, Balamurali R, Pugazhendhi T, Kumar SJ. Pancreas divisum and choledochal cyst. Indian J Med Sci 2009;63:198-201
How to cite this URL:
Arulprakash S, Balamurali R, Pugazhendhi T, Kumar SJ. Pancreas divisum and choledochal cyst. Indian J Med Sci [serial online] 2009 [cited 2009 Nov 18];63:198-201. Available from: http://www.indianjmedsci.org/text.asp?2009/63/5/198/53166
¤ Introduction
Pancreas divisum, resulting from a fusion failure of the ventral and dorsal pancreatic buds and characterized by a dominant Santorini duct, is considered to be a predisposing factor for recurrent attacks of acute pancreatitis. Choledochal cyst disease is dilatation of the extrahepatic biliary tree or intrahepatic biliary tree or both. It is a potential premalignant condition, and therapy of choledochal cysts should be surgical. Association between pancreas divisum and pancreatobiliary malunion has been reported in literature. Very few reports of association between pancreas divisum and choledochal cyst are described in literature.
¤ Case Report
A 21-year-old woman was admitted to our hospital with recurrent episodes of postprandial right upper quadrant abdominal pain, nausea and vomiting. She had an uneventful pregnancy and had delivered 3 months back. On physical examination, she had mild tenderness in epigastric and left hypochondrium region. Findings of systemic examination were otherwise normal. The results of a complete blood count and the serum levels of glucose and electrolytes, as well as lipid profile and calcium level, were within the normal range, as were the results of renal function tests. Total bilirubin was 0.4 mg % (normal, 0.1-1 mg %); AST- 44 U/L (normal, <40 U/L); ALT- 58 U/L (normal, <40 U/L); and alkaline phosphatase- 103 IU (normal, 35-135 IU). Serum amylase (638 U) and serum lipase (762 U) were elevated. Ultrasonogram of abdomen showed edematous pancreas. CT scan abdomen showed bulky pancreas; a lobulated non-enhancing intra-pancreatic collection in head and neck of pancreas, measuring 4.4 × 3.1 cm, with perilesional fat stranding. Upper Gastrointestinal endoscopy findings were unremarkable. Patient was treated as having mild acute pancreatitis, and she improved. While on follow-up after 6 months, she was admitted with similar episode, and then the pain was associated with hyperamylasemia (S. amylase, 1728 U). Magnetic resonance cholangio pancreatogram (MRCP) done during the episode showed type I choledochal cyst with pancreas divisum and resolving pancreatitis [Figure 1],[Figure 2]. Endoscopic retrograde cholangio pancreatogram (ERCP) confirmation and endoscopic minor papilla stenting and sphincterotomy were done. Patient was symptom free on follow-up, and excision of the choledochal cyst was planned.
¤ Discussion
Pancreas divisum results from a failure of the ducts of the embryological dorsal and ventral pancreas to fuse, the pancreatic exocrine secretion is drained preferentially via the Santorini duct and minor papilla, with only the uncinate process and part of the pancreatic body emptying through the duct of Wirsung and ampulla of Vater. Association of PD and recurrent pancreatitis may be attributed to a relative obstruction of the pancreatic juice flow through a relatively narrow minor papilla (dominant dorsal duct syndrome), causing increased intraductal pressure, duct distension, pain and pancreatitis. [1] This hypothesis is indirectly supported by cessation of recurrent pancreatitis attacks after endoscopic treatment in some patients.
Variants of pancreatic ductal abnormalities include classical PD type I, with total failure of fusion; type II, with dorsal duct dominant drainage; and type III, incomplete divisum where a small communicating branch is present. ERCP and autopsy reports suggest an incidence of PD of approximately 7% (1%-14%). Symptomatic (less than 5%) PD patients develop acute, recurrent, idiopathic pancreatitis and postcholecystectomy syndrome. [1]
Choledochal cyst disease is dilatation of the extrahepatic biliary tree or intrahepatic biliary tree or both. Choledochal cysts are rare, occurring in approximately 1:100, 00 -150,000 live births. [2] The majority (80%) of these are diagnosed before 10 years of age. Choledochal cysts are generally classified into 5 types, using the Todani modification. [3] The environment within a choledochal cyst is one of bile stasis, frequently resulting in the formation of stones and/or sludge, as well as biliary tract infection. The classic triad of right upper quadrant pain, mass and jaundice is seen more commonly in children. Adults may present with cholangitis or pancreatitis. The anatomic variant of a long common channel for the common bile and pancreatic ducts is known to be associated with choledochal cysts. It has been proposed that this anatomic variant promotes reflux of pancreatic juice into the common bile duct, resulting in inflammation, weakening of the bile duct wall and dilatation. [4]
Pancreatobiliary malunion is a congenital anomaly in which the junction of the pancreatic and biliary ducts located outside the duodenal wall, giving rise to a long common pancreatobiliary channel with a high risk of biliary tract carcinoma. [5],[6] Absence of a sphincter at the pancreatobiliary junction allows regurgitation of pancreatic juice and results in cystic lesions of bile duct. [4] A similar hypothesis of a significant reflux of pancreatic juice to the bile duct can explain the association of choledochal cyst with pancreas divisum. Cystic bile duct anomalies require treatment due to 2 major reasons: first, the pain or recurrent episodes of cholangitis and pancreatitis; second, the malignant potency with a high risk of developing cystic adenocarcinoma of the bile duct. The type I cyst has the highest predominance of cancer, followed by the type IV cyst, with type III being the least common cyst harboring cancer. [7] The management of patients with choledochal cysts consists of immediately treating any acute biliary tract process and planning an elective operative procedure. Surgery includes excision/ hepaticojejunostomy, ERCP sphincterotomy (type III cysts) and lobectomy (intrahepatic cysts). [8]
Due to paucity of reports, the exact incidence of association of PD with choledochal cyst is largely unknown. Clinically significant PD should be intervened by surgical sphincteroplasty or endoscopic methods (sphincterotomy, dilatation, stenting). Minor papilla endotherapy is most effective in patients with pancreas divisum and with recurrent acute pancreatitis with or without ductal changes, although patients with chronic pain and pancreas divisum respond poorly.
Bile duct resection, papillectomy, hepaticojejunostomy and jejunal reinsertion of the uncinate pancreatic duct in the same jejunal loop have been reported in literature. [9] We planned a similar procedure for this patient. As she was a lactating mother, she decided to delay surgery by few months. Endoscopic minor papilla sphincterotomy was performed in this patient to prevent a recurrent episode of pancreatitis and discharged with advice of definite surgery.
To conclude, pancreas divisum with cystic bile duct lesions is a rare anatomic association. Significant reflux of pancreatic juice to the bile duct resulting in bile duct cyst can explain this association. Therapy should be a surgical resection of choledochal cyst under consideration of all particular individual anatomical features, as these bile duct anomalies represent precancerous lesions.
Great article many thanks,
It’s easy to read articles like this and assume that PD must be the smoking gun.
But it seems a great many folks with PD are asymptomatic and the rate of problematic PD is only slightly higher than normal populations.
I have some real suspicions in my case that PD must be involved but when you have normal duct diameters, no dilation, normal enzymes with no indication of pancreatitus, and normal manometry testing it’s hard to persuade the docs to do something.
The statement in the article that patient with PD and chronic pain do poorly is not encouraging as well.
I might see if I can convince the docs to trial botox or stenting.
You’re the best! I love your attitude! The only previous medical issues I had were horrible menstrual cycles and subsequent uterine fibroids. I had a partial hysterectomy in 1991 at age 31. I called it my 2nd birthday for many years. I had no further issues until 5 years ago, when I had a large complex ovarian cyst that ruptured before the scheduled surgery. The surgeon doing the procedure was supposed to remove both ovaries. He told me he was too tired to take the right one out after struggling for 2 1/2 hours to remove the left one through the lap procedure. 3 years ago is when my URQ pain began and so did this journey. A colonoscopy 2 1/2 years ago discovered severe abdominal adhesions. It took the dr. an hour and a half to get the scope through. NOT FUN! He advised me to go straight to the ER if I ever had severe abdominal pain. 6 mos. later was my 1st ER visit with all the usual testing coming back normal. I think it was that day I began to hate the word normal! Numerous ER visits, a hospitalization last summer finally landed me back to the dr. performing the colonoscopy. He ran every test imagineable. I did comment to some friends that he, too, was a Dr. House with out the Vicodin addiction!
As it turns out, he used to work with Dr. Freeman and also did ERCPs before leaving to start his own practice. He was the first to mention SOD. He send me to Dr. Freeman in Jan. of this year. An EUS that month determined pancreas divisum. Dr. Freeman wanted me to have surgery for lysis of adhesions before he would do the ERCP. I had that in March. During that surgery, it was discovered that my remaining ovary was bad and had to be removed, but they didn’t do it during the adhesion surgery because they didn’t have signed consent. Dr. Freeman wanted me to have my GB removed during that surgery in the hopes it would help since I had to have surgery anyway. In May, my remaining ovary was removed along with my GB. The adhesions were back and were lysed again. In June, I’m back in the ER, hospitalized this time for testing and pain management for 3 days. (I’d voluntarily gone off my pain meds post surgery, thinking I was going to be fine. It was there that I was told that both of my conditions were so painful that I should never have done that.) I had an MRCP-S while hospitalized. I think that is the test that showed dilation in my CBD. I had my ERCP with the temporary stent in July, with no improved results.
Thanks for listening to my long saga. So, I have the 2 conditions. Abdominal adhesions, which can cause partial intermittent bowel obstructions and SOD II. Dr. Freeman had me consult with a surgeon he works with at the U of M regarding another lysis of adhesions surgery. The surgeon said he would consider it in Jan. or Feb. next year so the adhesions would have more time to “settle in” after the last surgery. Both times, there were significant adhesions wrapped around my gall bladder in addition to many other areas. Oh, I forgot to mention that the adhesions were caused by the fluid emitted from the cyst that ruptured 5 years ago. I guess they can cause excessive scarring. This makes sense to me because both my sons were born C-Section, and I had the partial hysterectomy. I had absolutely no problems after those surgeries until a couple years after that cyst ruptured. I keep wondering what triggered all of this to become active. I’ve read that one can begin having issues with adhesions many years after the event that caused them occured. I’ve also read of women who have endometriosis who have severe abdominal pain and that endometriosis is, in efect, adhesions. . I’ve also wondered whether or not I had undiagnosed endometriosis for years prior to the partial hysterectomy.
It will be interesting to hear from others if they experienced anything along these lines.
Thanks again for reading this. Long, I know, but I really learn from others experience and circumstances and hope to give back the same.
Take care!
Kris
Hey Kris,
Already our stories have more in common ! I had 1 bikini line C section done in 1986, a partial of that opened w/ a laparoscopy Ovarian Hemoraghic Cyst removal 1988, a 2nd C section in 1988, a 2nd Ovarian cyst removal w/ partial opening again 1995, and then a partial opening 1 more time for a tubal ligation in 1990. I most certainly have adhesions and of course completely severed rectis abdominis ! Although adhesions alone can go anywhere and wreak havoct, perhaps, all those knock out drugs for all those procedures are what we need to look into deeper. After all the doc’s are admitting to seeing a rise in SOD cases like never before, perhaps we PD patients are more at risk for chemically induced SOD ? See how comparing other notes really helps ? ! Maybe our group will be the one that makes some headway in the solving of this MEDICAL MYSTERY TOUR !
Funny you should comment on Dr. House….as I’ve gone through this journey, I’ve joked that I need him. I think I did…in Dr. Freeman, but he’s not crazy!
A couple more comments. My brother had the sphincteroplasty beecause they couldn’t reach his SO. Now I’m wondering if it’s because he has divisum. All I know is that he has done better with this horrible condition after a long recovery from that procedure than anyone I communicate with who has it.
Also, Dr. Freeman has told me in this past that he thinks my divisum is incidental to my condition. I’ve never really asked why he thinks that. It seems so many who have that have these issues. That’s another question for the list on the 7th!
Wishing you all a great day!
Kris
Incidental my ass, Kris, maybe he can’t explain its relevance but that’s a whole different story, now isn’t it ? You see our condition wouldn’t be on the top of any GI’s list to solve unless he had it himself . Let’s be honest, it’s too rare and there’s no money in it !
Michele A, & Kris, No I have never had Dilaudid, They give me vicodin10/325 and when I have an episode that needs something stronger I have percocet. But the other night none of that helped, so I went in for the shot, and like you said it puts you in a fog, and decreased the pain for a few hours, then had to take my regular meds anyway. I keep calling to see if I can get some kind of report that has been written about my last tests, but have had no luck.. You would think that if I can be told some gastritous was seen on the EUS, I had low bicarbinates , and they saw some pancreatic insufficiencies, something would be written up or typed up saying that, to support getting my next tests done Dec.14th.
Nymphaea, You are so right… If these doctors went through this there would be a lot more research and possible cures. I need to get back into a more positive mind frame, and out of the rut this lingering episode has caused. I hope everyone is having a good day, take care. Michele/MN
Hi Michele!
That seems unusual that you couldn’t get your test results if you ask for them. Have you asked for them before and received them? What is your next test? I’m just full of questions today, aren’t I? I know how hard it is to not feel down when we feel so sick sometimes. I was in that same mood last weekend. These flare-ups that linger are really rough and take their toll emotionally as well as physically. If you’d like to talk on the phone sometime, please put your email address on here. I’ll send you my phone numbers. You can call anytime. It will help us both! I hope today is a better one for you!
Take care!
Kris
Brett,
Hi , found another article about your problem but it says very little, basically just that diverticuli can impede the function of the Sphincters. Next time I’ll just send you the link. Wow ! The medication name change is a big eye opener for me, next time I travel out of the country I will be very careful !!! I need Nuerontin as a temp daily soon to go every other day and Lyrica was an experiment for my migraines many years ago and gave me severe muscle contractions ! I wonder how the companies get away w/ it ?
May I ask how old you are ? And how long you had these GI problems ? One article is stating that because the PD is abnormal, the bile flows in erractic ways and actually burns the tissues near the sphincters ! First time I’ve heard it, but, hey its plausible.
Two questions for the whole group, are we ever allowed to have a glass of wine with dinner anymore ? And are all of you mostly vegetarians by now ?
Ok going to have pills and breakfast.
I’m 49 and have had the problem since I was 21. It seems Lyrica may be a different medication than gabapentin but prescribed for the same things in Australia. I ask specifically for Gabapentin and got a script for Lyrica. I assumed it was a brand name for the same generic – now I’m not so sure?
I used to be able to drink moderate amount of alcohol without a problem but no longer.
Given my So and BD was at such an angle it could not be canulated, I think a problem here is most likely and my doc was a bit hasty ruling it out on the basis of the DIDA scan.
Here’s a few extracts that show scintigraphy is not very effective in detecting low grade type 111 obstruction:
Ruffolo and associates evaluated 81 patients with symptoms suggestive of biliary disease but normal ERCP and no gallbladder stones on transcutaneous ultrasound by scintigraphic gallbladder ejection fraction and endoscopic SOM [9]. Fifty-three per cent of patients had SOD and 49% had an abnormal gallbladder ejection fraction. SOD occurred with a similar frequency in patients with an abnormal gallbladder ejection fraction (50%) and a normal ejection fraction (57%).
Four studies [29,32–34] have shown a correlation between hepatobiliary scintigraphy and ERCP with SOM. Overall, it appears that patients with dilated bile ducts and high-grade obstruction are likely to have a positive scintigraphic study. Esber and colleagues [35] found that patients with lower-grade obstruction (Hogan–Geenen classification Types II and III) generally have normal scintigraphy, even if done after cholecystokinin provocation.
Adding morphine provocation
Morphine has been shown to cause SO contraction, as assessed manometrically. The value of adding morphine provocation to hepatobiliary scintigraphy was recently reported [34]. Thirty-four patients with a clinical diagnosis of Type II and Type III SOD underwent scintigraphy with and without morphine and subsequent biliary manometry. The standard scan did not distinguish between patients with normal and abnormal SOM. However, following provocation with morphine, there were significant differences in the time to maximal activity and the percentage of excretion at 45 and 60 minutes. Using a cut-off value of 15% excretion at 60 min, the use of morphine during hepatobiliary scintigraphy increased the sensitivity and specificity for SOD detection to 83% and 81%, respectively.
Laboratory abnormalities consisting of transient elevation of liver function tests, typically during episodes of pain, are present in less than 50% of patients
Given the diverticuli, the angulation, the response to morphine and sub lingual nitrates I don’t think you need to be a rocket scientist to figure out the main problem.
The doc I got was Professor Toouli’s partner. She was good but I’m going to try schedule an appointment with him. If he can’t get in he duct to measure the pressure maybe he’ll consider a diagnostic trial of botox.
Hi!
I really appreciate all of the research you and Brett do! My non-medical brain has a hard time understanding some of the lingo, but you guys certainly pose many interesting theories about the cause of this. I sure wish someone would figure it out. All I know is that there is something very wrong with me!
I do have a glass of wine with dinner sometimes. It does not cause me increased pain. It seems to relax me and helps some. My daily cycle is always the same. I feel pretty good in the am. The pain and nausea begin to increase mid am whether I eat or not. It’s always worse mid day. It used to ease somewhat mid afternoon. Now it just stays and by the end of the day, I am exhausted, really nauseated and feel weak. I’m taking my pain meds now every 3-4 hours as directed instead of trying to stretch them out for 4-6. My dr. at the Palliative Care Center talked about putting me on a long acting pain med last month, but I wanted to hold off for fear of what the effect would be while trying to work. I see him Monday and am on vacation next week, so it would be a good time to start a new medication. No more wine with dinner if I start on a medication like that!
I saw your comments about Lyrica. I was on it for a couple of months and recently went off as I didn’t see any difference while taking it. It seems like it’s a pretty risky medication. I got a survey in the mail from my pharmacy yesterday, asking me to participate and share my experiences as it is a high risk medication. That in itself was enough to make me think I’m better off without it!
Nymphaea-I will be in touch tonight. A friend stopped by last night and it got late, so I went to bed!
Have a good one!
Kris
Kris, Thank You, Yes I would love to talk.. Well I received the report, but now I’m scared because it said there was a anechoic cyst on my liver. I have tried looking it up, and I’m more confused. My pancreas looked good, and there was no visible sign of pancreatitis or divisum, just an insufficiency and low bicarbonates. Carrie noted on the papers if I had specific questions about it, to contact Dr. Sudell. But when I called his nurse last time, she told me to talk to Dr.Freeman, so I guess I will wait until my appointment on the 14th. My email is meeen1@msn.com
Michele/Mn
Hello buddy,
Not many men with this how did you get so lucky ? Thankfully we’re all out of the box thinkers. I have another lead for you. Proglumide RX . Its an antagonist to CCK. Generally given to ulcer and stomach cancer patients. You and I have another similar clue. We feel sick only 5 minutes after we start eating. Just when a Cholecystokinen would be released. If we stop the CCK release, do we stop the pain ? I had a hunch last weekend and I went with it. Told my GI, but he said no. But it has been given for SOD I found research supporting this. (I know you believe this !) We are all staring at our ducts and valves like we are nothing more than plumbing gone wrong. What if the secret lies in nuerological function ? For god sake if you think of it we’re a hydro electric pump. The bile is the water flowing, but what turns it on and off is the body’s electricity and hormonal nueropeptides such as CCK. There’s a nuerological component here that is not being addressed, because Nuerologists are not GI’s and vice versa. Vagus nerve inhibition ? I’m open to suggestions here, even arguements because there’s too many missing pieces to this puzzle.
Interesting Nymph,
I had much the same thought. I get the pain within 5 minutes of eating as well. I figured this was CCK release causing GB contraction against a tight sphincter.
But with the DIDA scan I was put on a continuous CCK infusion. I was sacred witless it was going to cause a severe attack – but nothing happened, no increase in pain.
There’s a big part of the picture missing.
You’d need to be careful with vagus nerve inhibition – it’s one of the 12 cranial nerves and has a role in all sorts of things.
What amazes me is that celiac ganglion blocks work well for folks with cancer – 80% but less well in folks with benign conditions at 40% . So in many cases the pain must be arising from structures that do not send noxious afferent signals through the celiac ganglion. If I recall all the viscera, GB and pancreatic afferents go through the celiac ganglion so????
Hi Michele!
That is frustrating to not be able to get some answers. One of the scary things about getting a report while not being at the doctor’s office when receiving it is not being able to ask immediate questions. Did you already try calling Dr. Sudell’s nurse about this report? Or, maybe you could email Dr. Freeman. I’ve emailed him a few times. He’s always replied within 24 hours. However, he may not want to interpret test results in an email. I’m just thinking as I’m typing. Or, would your PCP be willing to discuss it with you? I feel bad that you have to wait so long for potential answers. I will email you later. I’ve got to get ready for work.
I hope you and everyone has a pain tolerant day!
Kris
Brett,
One more thing, You said you use an aticholernegic. And in Judi Sohn’s original post she speaks of Gatorade spurring an attack. Electrolytes spurring an attack hmmmmm. I remember something uncanny. November 2005 , me the incredible shrinking woman started telling people she thought she was turning the corner when she started drinking gatorade !!! My sphincter wasn’t opening an closing until I had some electrolytes which stimulated the process. Right ? The same electrolytes which over stimulated Judi Sohn into pain ? What do electrolytes to to nerve function ? What if part of our problem is a potassium/ salt channel exchange malfunction. Wouldn’t Gatorade throw that all out of whack but initially shock the SOD into action ?
Good questions.
I can get significant relief by drinking a lot of water as soon as I feel an attack coming on.
At first I assumed I was clearing some sort of blockage – and still consider it a possibility for something like gastroparesis – but no bezors were found on endoscopy.
I know the osmotic gradient plays a big role and the SO is sensitive to hydration status. I imagine electrolyte balance is also critical.
I also find walking helps but strenuous exercise is a real trigger.
Regarding the anticholenergic all the ones I have tried have been unsuccessful – scapolamine, atropine hyoscamine etc.
The TCA I’m on – Doxipen has an anticholenergic action – but I don’t think this is the primary mechanism of action.
It may be possible that direct antispasmodics like mebeverine or trimebutine are more effective. I don’t think they are available in the USA. Also the serotonin modifiers like Alosetron and tegaserode are worth a look but they have also been pulled from the market in the USA – and one was only recommended for women – zelnorm I think it was called.
Lastly baclorfen may be worth a try as well – it’s a pretty powerful muscle relaxant.
Kris, I can’t wait to hear from you, I talked to Carrie and she gave me his email but it came back to me, so I must of did something wrong. I hope everyone has a good pain free weekend.
Michele/Mn
Hi Michele!
I emailed you my phone numbers. I’m really lookikng forward to talking to you, too! Give a call when you can.
Take care!
Kris
Hi Brett
I was working in pharmacy for 17 years prior to venturing back to uni to study nursing , I knew of a neuro physician in Ipswich who used to prescribe Lyrica for a few of his patients. In saying that I finished 10 months agao in pharmacy so within that time the government may have taken Lyrica off the PBS. We used to have a far greater number of scripts for Nuerontin/Gantin , being the better drug I think .We had Lyrica on our shelves because of this one doctor’s patients getting their scripts at our pharmacy , but in defiantly wasnt a popular one.
I work in a pharmacy still and we do see alot more prescriptions for gabapentin then lyrica. I am on Lyrica but told my dr that I am weaning myself off of it bacause it was making my eyesight blurry and was affecting my driving. I didn’t think that it helped any anyway. I was on Gabapentin before that but I think it stopped working so the dr switched me to the Lyrica. They are not the same medication. They are both used for nerve pain but are not the same thing.
Kris,
I went to my new pain dr yesterday and I really liked him. He said that I haven’t been taking enough of the medication to get the pain under control. He changed me to a long acting pain med three times a day (oxycontin) and then prescribed Diluadid for breakthrough pain. I wanted to try it this weekend because I don’t try new meds until I have a couple days to see how they are going to affect me first but the pharmacy was out of the oxycontin until Tuesday. I can’t believe that I am taking these meds. I sure didn’t see this in my future! The dr said his goal is to try to get me to even out with the pain and not have the highs and lows anymore. He said the body can handle alot of pain meds if you truly are in pain. You need to match the pain level with the medication in your blood levels. He said I wasn’t taking enough of the pain medication to get the blood level up to match it and therefore I kept having these spikes in the pain. I always try to take the least amount of pain medication I can because it freaks me out that I have to take it in the first place. I guess that wasn’t the best thing to do. I was real happy that he knew what SOD was! He wants to see my in a 2 to 3 weeks to see how I’m doing. I was real impressed with him. My husband is so relieved and excited that this might actually help get my pain under control.
On a happier note..my daughter is stationed in the Air Force here and right now she is on “deployment” at an Air Base that is only 2 hours from here so I get to see her alot. She asked if I would be interested in hosting some soldiers for Thanksgiving that are away from their families and are getting ready to go to Afganistan. I said I would love to! So we are going to have extra guests for Thanksgiving and I can’t think of a better way to spend it! Please think of all of our soldiers that are away from families this holiday and pray for their safe return. I also have a son in the Air Force that just got back from Kuwait and my daughter served in Afganistan 2 years ago so I am very blessed to have them home safe.
I hope everyone has a nice relaxing weekend.
Oh Karen, this is great news!
I’m seeing my pain management doctor tomorrow. He talked to me about going on a long acting pain medication. I said I wanted to wait another month to see how things go. Well, if he’s still willing to do it, I’m going to. I can’t take these spikes, either. I have to take the oxycodone every 3-4 hours. Like you, I tiey to take the least amount. I’ve discovered that taking them as prescribed every 3-4 hours helps instead of waiting 4-6 like I used, does help. I can definitely tell when it’s time to take them again as the pain is starting to spike at about 3 hours. I hate having to take them, too. It’s the only way to have some semblance of normalcy in my life. I’m on vacation all of this week, so it will be a good time to see how the news meds he may prescribe will affect me before trying to work while taking them.
I’m so happy your kids are home safe. You will have a wonderful Thanksgiving with your extra guests. I’ll be thinking of you, your family and your guests and wishing them safety while in Afganistan.
Take care!
Kris
I had my 3rd ERCP Thurs. just got out of the hospital today from the pancreatitis. My sphincters were both tight only 6 months later from the last ERCP. The pancreatitic stent did not prevent the pancreatitis again. The MD said that the duct spasmed like he had not seen in anyone else before, probably why baclofen works the best for me. The side effects stink.
Kris,
The duration of action for oxycodone is 3-4 hours. It completely makes sense that it does not last longer for you.
I am not sure who asked but Lyrica and Neurontin. They are very similar typically it depends on your doctors preferrence as to which they prescribe. Neurtonin is available in generic. All medications have side effects. These need to be tapered and stopped abruptly.
These medications should NOT be stopped suddenly and should be tapered.
My husband was wondering if others on here had elevated liver enzymes. If so do you know what your levels are? When I went to the ER my ALT was 220 and my AST was 152. I guess it depends on who you talk to if they are concerned about those numbers or not. One dr told me that is high and my GI dr said that is high but not bad. I never get told my amalyse and lipase so I’m assuming those are normal. But then again I never get the figures on the ALT and AST unless I ask for them.
I don’t know what my numbers are. I’ve always been told that they’re normal. I really learned to dislike that word. I know normal is good, but I sometimes wish they would show what I feel! I should ask Dr. Freeman what the pressures were in my common bile duct when he did my ERCP. He just old me that they were extremely high.
Hi Karen, I have been diagnosed with SOD type II. I had a succesful ERCP done in April where both my pancreatic duct and bile duct pressures were high. He cut the muscle in my bile duct and cut my pancreatic duct and placed a temporary stent. My ALT level prior to this, like a month before was 449 (normal is 0-52) and my AST level was 347 (normal 0-36). I still occasionally have pain especially the week of my menstral cycle. I notice it seems to be bothersome when it’s cold?? and of course when i eat or drink certain things. caffeine is a big NO for me as is most processed foods. I’ve learned to live around not eating these things which is fine as long as I can have a pain free day! I have 4 kids to chase after and I’m making up for my missed time from before my ERCP I was worthless.
Hope all are having a good weekend!
Michelle/Indiana
Hi Michelle/Indiana,
I guess your lft’s were high! You have the same triggers as I do. I have always told my male GI that this pain was worse with my menstrual cycle and he said he has never heard of that. I am so happy for you that your ERCP was successful! Was this your first one? My first 2 were great with no pain at all for 2 years in between! I’m just hoping that I can get that again when I have my next one in 10 days..Yikes! I am starting to get really nervous about it now. Thanks for your reply.
Take care
Karen
Wow ! I’m envious 2yrs. pain free from an ERCP ? I have also only had 2, but they were 4ms. & 5ms pain free only . The second one gave me worse pain for 2 ms. prior to the 5 ms. of eating w/o pain, so I guess I had to earn it.
An orthopedic doc once said to me, that during menses, whatever your Achilles Heel is what will bother you.
Nymphaea,
I am going in for my 6th ERCP on Dec. 3rd! Only the first two gave me pain relief. The third one they put in 2 large stents and I have had pain ever since..for 3 1/2 years now.
Hi Michelle, Who did the ERCP on you? I know the answer is here somewhere but I can’t find it. I have put Drs. on hold for right now. I will attemped in the future to find a new Dr. , hopefully one who will listen to me. I’ve had one ERCP and stent, it didn’t help. I gave up going to Drs. after the GI at John’s Hopkins said he didn’t think I had SOD anymore because I don’t vomit. Oh well, I just know if it wasn’t for pain management I would not be alive or wouldn’t want to be.
Hi Robin, I went to Dr. Fogel at Indiana University Hospital. I did get pancreatitis afterwards and was in the hospital a little over a week. But, my drastic change from before ERCP to now I think it was worth it. I can seem to manage my pain now through trial and error and I read this blog everyday which helps.
Karen, Yes that was my first ERCP and I am a little nervous after reading how many have had to have repeat ERCP’s. Although Dr. Fogel told me that I am not a good candidate to ever get ERCP done unless it’s the absolute last resort since I am considered to be high risk for pancreatitis now. I am now 7 months post and nothing as severe as before I had it done. Don’t get me wrong I still have bad days here and there, but it’s not like it was everyday prior.
Good Luck to you on your ERCP I will definately be thinking about you.
Have most of you gotten the pancreatitis from post ERCP? So it does seem most women have more issues with pain around mensus. Has anyone found any ‘tricks’ to help relieve? My saviour has been a heating pad that I use about majority of the time. I use it about everynight when I go to bed. I’m not sure if it helps ‘open up’ the ducts as heat does cause expanding or what?? but it honestly does help. I think it’s my security blanket. lol
I hope you all have a nice evening and happy Turkey Day!
I was also a patient of Dr. Fogel, in Indiana. My pain worsened after the stent placement but not till about 24 hrs after ERCP w/ stent of minor papilla. The pain was so severe above my xiphoid process I thought I was having a heart atack. We were in a Pittsburgh subburb driving and we were 45 min from the nearest hospital. We made it there to find out it was Post ERCP pancreatitis attack w/ elevated Lipase for the 1st time in my life. They gave me something for pain, but its rather a blur for me. Then my regular doc gave me something for pain but I was allergic went into a seizure w/ migraine and the nightmare just snowballed. Finally 10 days later got the stent taken out. And realized I still needed Enzymes to eat and a low fat diet. I wasn’t “Cured” but I could eat more now than I could before the procedure. But 3 ms later I had to go on daily Nuerontin for MS symptoms and I could eat anything I want from an ice cream sundae to a lobster bisque soup to anything in between. But come August I came off the Nuerontin and even though I went back on enzymes right away, after 2 months I had another serious attack and landed back in the hospital for a 3 day stay. So, when I say I got 5ms. relief, after that stent it counts the RX treatment and I don’t know that it should maybe I only got 3-4 ms. non medicated relief. So, I don’t think I would ever be a good candidate for it ever again either.
My SOD does not get worse during my cycle. Just if I go off diet and have some animal product. Yet a cupcake now and then is ok. I think the white wine I had last night caused my pain to feel like a buring pain, yet I had a light beer bud lime, a little over a week ago and it did not hurt at all.
Can not tolerate pizza,Dairy, red meats, OILs, butter or deserts, egg yolks or fat in general,no matter how many enzymes I take, but I notice I can’t even tolerate fat free yogurt or pretzles without enzymes.
Does anyone else have this too ?
Sometimes I wonder if my problem is more pancreas divisum than SOD, since they both have been cut ? Why do most of us keep having problems even after Sphincterotomy ?
Also may I ask my American friends, how do you handle Thanksgiving when you can’t eat what everyone else is having ? Do you bring special food or do you start not showing up to holidays in general ? See, since I am allergic to morphine products, I can only take Nuerontin and keep to a very strict diet. I feel so sad when everyone is eating and having a good time and I’m eating organic pea soup. (That was last Christmas) This Thanksgiving it looks like we are going to a restaurant which means you have to chose from different dinners that are available, now I’m really scared. They won’t have time to make anything special for me, and it will be embarassing for me.
Are any of you on special avoidance diets ? Or are you all on pain meds ?
I did a bit more research and Lyrica and gabapentin are in the same class but different medications. It’s a bit like the cholesterol med statins – lipitor and crestor are different meds but in the same group.
I also found more info on IBS and I think I need to bit the bullet and realize that this is the problem. CCK causes vigorous GB contraction and if the SO was a problem it would have sent the pain through the roof.
But wheat bran give me a severe attack – which is common in IBS. I think the problem here is that IBS is looked up as a mild problem so people with severe pain are misdiagnosed – hence the low success rate for ES in type 111 cases.
It’s interesting in that the response to morphine and nitrate mimics SOD but CCK should rule it out.
Brett -
Are you saying that you are thinking you have some form of IBS and that SOD III
cases are IBS ? I know many (too many) who think they are SOD III but their
doctors are saying IBS so are you thinking that very well could be true. I know
that if I suggest this that they will probably think I’ve joined up with their doc’s
and run me out of what? their websites? ha
Anyway, I would be very interested in how you’ve come to this idea.
Thank you for any information you may be able to give and good to see you posting again.
Warm regards,
Thanks Cristi,
What I think is going on is what the research now suggests – quite a few separate studies in fact. It seems to show that many – possibly most type 111 SOD diagnoses are in fact a form of IBS – what they call an IBS variant.
I’m not saying this applies at all to types 1 and 11. But EVEN in those with type 111 who were found to have manometrically documented elevated pressures (about 50%) only 8% reported improvement at 2 year follow up after ERCP and ES.
The studies that have found 50% improvement in type 111 post ERCP were all done at before one month post op – during a phase when there is considerable placebo effect. None of these studies were controlled for placebo. And when looked at longer term, the results are far from impressive.
So the feeling now is that even in those with positive manometry in type 111, it’s a marker for rather than a cause of the problem. Further studies that placed recording instruments in the small bowel have found motility disorders and could reproduce the patient’s pain with duodenal distention.
What appears to be the real cause of pain is altered motility patterns and visceral hypersensitivity of the small intestine. True IBS occurs in the large intestine and colon so the pain is typically lower. It can occur concurrently with the above – and in fact typically does.
The altered motility causes all sorts of problems – bacterial migration into the small bowel where it shouldn’t be and the hypersensitivity causes extreme pain. Small bowel divertuculi are common and apparently a result of the altered motility pattern.
In the past few weeks I’ve switched to drinking more water and using normafibe – an insoluble fiber. I’ve noticed significant improvement. I was using a soluble wheat fiber and eventually realized it was a major trigger. I just found out that soluble fibers likely irritate the duodenum and can be digested by bacteria to make things worse in IBS.
In my case at least the evidence is mounting against a billiary or pancreatic etiology – given no exacerbation with CCK and normal pressures and I think all type 111s should consider this possibility before undertaking risky procedures.
I was lucky in that I got no pancreatitus at all from extensive
manometry testing but I picked a specialty center
CCK did send my pain through the roof Ever since my first one June 2004. And the 3 others as well, 2 were before my cholecystectomy and 2 were after but the murderous pain was consistent. This tells me it was always SOD and if they realized it or felt they were able to test for it, I would still have a Gall Bladder, no small “unecessary organ” in Chinese Medicine. Regardless, If you do have IBS, Brett, then fine, but anyone who is that sensitive to wheat should be exploring possibilities of Celiac. Regardless, of what you’ve been told, if you take yourself off all wheat products as a trial, it certainly can’t hurt, the question is, will you improove. Afterall, IBS’ers seem to love their Hyoscyamine RX and you’ve made it clear, it did nothing for you as me. Is your heritage among the Northern Europeans, such as the majority of the Celiac er’s ? Have they completely ruled out Crohns & Ulcerative Colitis ? I imagine after 20+ yrs they have. Illeitis as well ? I mean they know you have divaticulitis right outside your SOD, but they are sure this has no impact on its functioning. Really ? If this was a trial, I do believe that would be called guilt by association. No ?
Nymphaea
I’m curious about the enzymes some of talked about. Does anyone on here use them? I have type II SOD and was curious how this works and side effects.
Thanks,
Michelle/Indianapolis
The enzymes are “pancreatic Enzymes” The type I am most familar with are called Pancreatase (MT20’s.) The measurement in question. A “normal” dosage is 4 capsules w/ every meal. Should you be used to 4+ meals a day, you may find them constipating. Regardless, they have Talc as a binder ingredient and such an ingredient is unecessary and could be harmful in the longterm, but most likely cost effective. For any other info you can Google the RX name I used earlier and read more about your possible contraindications and family allergies.
Nymphaea
Here’s a few extracts form studies:
Small bowel diverticuli:
Usually multiple, and protrude from mesenteric side of bowel
Pathogenesis thought to be due to a motor dysfunction of the smooth muscle or the myenteric plexus, resulting in disordered contractions of the small bowel, generating increased intraluminal pressure, and resulting in herniation of the mucosa and submucosa through the weakest portion of bowel.
Type 111 SOD and Visceral hyperalgesia:
Sustained benefit is the desired outcome of sphincterotomy for SOD. Undoubtedly, ERCP followed by a night or two (or longer) in the hospital with abdominal pain has a huge placebo effect. Too many of the published studies on SOD therapy have had depressingly short follow-up. Wehrmann et al. (22) found that 70% of patients with type II SOD and 39% of those with type III reported symptomatic improvement 4–6 wk after sphincterotomy. However, at a median 2.5 yr follow-up, the sustained benefit for type II was 60% but only 8% for type III (p < 0.01). These investigators found no statistical difference in abnormal sphincter pressures between type II and type III patients (62.5%vs 50%).
TYPE III: THE (VISCERAL HYPERALGESIA) TWILIGHT ZONE OF SOD
Two explanations have been offered for the poor correlation between the results of SOM and response to ES in type III SOD: (i) SOD may be a marker for—but not a cause of—pain in type III SOD patients, or (ii) SOD has a causative role in a subset of type III patients, but SOM cannot accurately detect this. Personally, I believe that many patients labeled as having type III SOD have a diffuse gastrointestinal motility disturbance, characterized by visceral hyperalgesia and intolerance of gaseous distention. Desautels et al. (23) have shown that patients with type III SOD exhibit duodenal-specific visceral hyperalgesia, with duodenal distension reproducing their symptoms.
The studies:
1. Pain in SOD type III is thought to be of biliary origin with little objective data, and treatment is often unsatisfactory. Chronic abdominal pain without a biological disease marker is similar to irritable bowel syndrome, in which many patients exhibit visceral hyperalgesia. This study tested the hypothesis that duodenal-specific visceral afferent sensitivity exists in patients with SOD type III. METHODS: Eleven patients with chronic abdominal pain after cholecystectomy and 10 controls underwent duodenal and rectal barostat studies to evaluate visceral pain perception measured with a visual analog scale. All subjects underwent psychological testing. RESULTS: Patients with SOD type III exhibited duodenal but not rectal hyperalgesia compared with controls. There were no differences in duodenal compliance between the groups. Duodenal distention reproduced symptoms in all but 1 patient. CONCLUSIONS: Patients with SOD type III exhibited duodenal-specific visceral hyperalgesia, and duodenal distention reproduced symptoms in all but 1 patient. Abdominal pain in these patients may not originate exclusively from the biliary tree.
2.Some patients may be having pain from altered gut motility of the stomach, small bowel or colon (irritable bowel or pseudo-obstruction variants). There is increasing evidence that upper GI motility disorders may masquerade as pancreatobiliary-type pain (i.e., discrete right upper quadrant pain). Multiple preliminary studies show disordered duodenal motility in such patients [88, 89, 90]. This area needs much more study to determine the frequency, significance, and/or coexistence of these motor disorders along with SOD. A recent study [91] suggested that Type III patients have duodenal specific visceral hyperalgesia with pain reproduction by duodenal distention.
3.Patients with chronic epigastric to right upper quadrant pain are often considered to have gallbladder of sphincter of Oddi dysfunction, but standard tests are nondiagnostic. In 62 consecutive patients with this compliant undergoing antroduodenal manometry, we correlated a change on duodenal motility with spasm of the ampulla of Vater/duodenal wall. This distinctive motility pattern occurred and was analyzed in 35% of patients. It is characterized by increased duodenal wall tone with phasic contractions of 19-22 or 41-44 contractions/min or by phasic activity alone. The subjects with spasm also underwent cholecystokinin cholescintigraphy, and 50% showed either significantly delayed gallbladder emptying of hilum to small intestine emptying, or both. The disorder appears to be secondary to a loss of neural inhibitory control and a dysfunctional small-bowel pacemaker. Antroduodenal manometry is an essential diagnostic procedure that complements sphincter of Oddi manometry in evaluation of unexplained right upper quadrant pain.
4.Sphincter of Oddi dysfunction (SOD) is associated with abdominal pain and is treated by sphincterotomy. Of 215 patients who underwent biliary sphincterotomy for SOD in our institution, 26 reported no improvement and 25 of those were found to have pancreatic sphincter dysfunction and subsequently underwent pancreatic septotomy. Nine patients remained symptomatic after the second intervention. Six of those nine patients, and seven of the 16 patients who improved after the septotomy, agreed to undergo an ambulatory duodenojejunal (DJ) manometry. DJ manometry was abnormal in four of the six symptomatic patients but only in one of seven patients who became asymptomatic after endoscopic treatment. We conclude that the persistence of symptoms after endoscopic ablation of the biliary and pancreatic sphincters is associated with abnormal intestinal motility, which may explain in part the lack of response to the endoscopic treatment.
So what’s the best approach here?
I think firstly insoluble fiber and more water. Then rifaximin
for the bacterial overgrowth possibly followed with a probiotic culture.
Also powerful smooth muscle relaxants like mebeverine or baclorfen for attacks rather than the weaker anticholenergics.
Lastly one of the drugs found to control chronic pain syndromes like nalaxone.
I’ll let you guys know how it works out.
I’m not encouraging anybody to bypass important tests for SOD and pancreatitus. But if all tests are normal and you get a type 11 diagnosis it seems the probability is that it’s a small bowel motility disorder and I’d proceed with caution regarding sphincter ablation surgery.
Brett,
I just do not find the above regimen to be sufficient.
Me also – but there appears to be no alternatives and surgery sure isn’t curing many type 111 SODs.
I have found that if I get nausea in lying it eases somewhat by sitting up. I also get attacks if I’m upside down for any reason or bent over for awhile. I’m starting to think all those docs that told me a hiatus hernia is asymptomatic might be missing a big contributor.
Hello Everyone, I just wish I was done with tests, so I can get some kind of regimen going instead of just my pain medication. I have tried to watch what I eat, but that doesn’t work. I have looked up a lot of information on pancreatic insufficiency along with my SOD, and since I have to wait until December 14th for my clinic visit and test, I might go and get some vitamins and things on my own.
I wish everyone a happy pain free thanksgiving!!!!
Michele/MN
Michele,
My dr told me one time to not worry about trying to figure out what triggers these attacks because I would just drive myself crazy.
That’s about the best advise I’ve heard in a long time! It’s so true!
I disagree respectfully with your doctor. Writing a food journal is not a hard task and what you learn from it in your own personal case could teach you and your doctor something about the DZ . Just cause he can’t substantiate claims of trigger foods , doesn’t mean you can’t. Personally when I have an attack, first its no tolerance to fats, then the next month no tolerance to protein & fats and then the following month its fats, protein & carbs.
Can you imagine how far we could come in this DZ if we had a survey to compare the diet triggers associated with the DZ and how many patients would have there concerns validated ?
With knowledge there is power. The proverbial Ostrich w/ the head in the sand never did anyone any good, Except maybe the Ostrich ?
Kris,
How was your dr visit? Did he give you a longer acting pain med to try? I hope so. I started my oxycodone on Tuesday night and took the next one on Wednesday morning about 5 am then went back to bed and I just laid there thinking..”Hey..I’m not in pain!” I was literally pain free for the first time in 6 months! I didn’t want to move for fear that it would go away. That lasted until about noon and I was scheduled to take another pill but I was at work so I didn’t/couldn’t until I knew how they were going to affect me. I am so excited that I can’t hardly stand it. Maybe this will really help!
My ERCP is next Thursday and I am starting to freak out now!! I know I need to do this but it doesn’t get any easier to do!
I hope you all have a wonderful Thanksgiving and can spend it with your friends and family!
Karen
Hi! I’m so happy for you! I also take Oxycodone. It helps alot. It’s a giddy feeling to not hurt so much. The Oxycodone kept my pain at about a 1-2 for the first month. Then another major flare-up hit. It still helped, but not as much. I came out of that one after a few weeks, felt better for about a week and the pain was staying under control with the Oxycodone. Bam. Along comes another flare-up. This last one stayed around for abut 5 weeks! I landed in the ER one day because of it. I’ve been feeling better for about the last week. (Until yesterday again.)
My appt. with the pain dr. was on Monday. I always see him the first thing in the am, which is always my best time of day, plus, I was not in a major flare-up time.I also see a Social Worker there. She had done hypnosis with me the month before for pain management. I have been able to use the technique for relaxation and it can help the pain a little bit, which I told her. Anyway, when I asked him about the long acting pain meds, he said that he had talked to the Social Worker and had heard I had a really good appointment and that he wanted me to try the acupuncturist I was seeing that afternoon before adding any more medication. (He had asked me to try acupuncture, so I did make an appointment. He said the less medications, the better. I agree with that, but I also need to be comfortable. That is the belief he’s always told he holds as well.
I wasn’t impressed with the acupuncturist. I totally believe in the concept of acupuncture, but this guy was way out there. I communicated with Nymphaea about the visit. She suggested trying someone else.
The doctor also told me to call for a refill on my Oxycodonoe instead of giving me my rx like he usually does. He always gives me more than I can use in a month, so I leave the rx at the pharmacy for about 10 days until I need it. I’m going to call them on Monday and let him know about the acupuncturist and the fact that I’m not feeling well again. He was in a hurry as he was late from dropping his daughter at daycare and the traffic. I told him about the ER visit. He seemed a little upset that no one had called him. He said I could have had him paged and he would have come to the ER. I didn’t know it was OK to do that. I told the dr. at the ER that I was a patient of his. I guess I would have thought the ER dr. would have called him if that is the protocol. I will definitely have him paged if I have to go again.
So, now I’m a little, but not overly, worried about getting my medication. None of us need that stress on top of this condition! It will be ok. He’s never been rushed with me before. I think it was just the day. It also makes me wonder what the ER dr. said in her notes. She was kind of a crabby dr., also rushed because they had 4 people come in with chest pain right when I got there.
Thank you for thinking of me! I’m so happy you’re doing better. I really hope you have a great Thanksgiving with your family and your special extra guests. Please pass on my wishes for safety and a quick trip back home from Afghanistan.
Your ERCP is the 3rd, correct? I’m sure we’ll be in touch before than, but know that I’ll be thinking of you on that day.
Happy Thanksgiving to all!
Kris
I am so sorry to hear about your dr and how he treated you when you went to see him. Does he not remember that he is the one that wanted you to try the longer acting pain med? Then when you’re finally ready to try it he forgets that he wanted that? I hate when dr’s do that. My old GI dr would tell me one thing then the next visit it would be something totally different! You’re so right that you don’t need that stress about not getting enough pain meds on top of dealing with this horrible disease. I wonder why he had the change of attitude all of a sudden. Like you I am wondering if it was something that the ER doc said? Almost sounds like it.
It was really nice to have a dr that knew what I had and had been dealing with for years. He said the oxycontin that he prescribed for me was twice daily dosing but he thinks people do better with three times daily dosing and I have to agree with him. By about 8 hours I can feel it wearing off and I take another one. It is supposed to be one tablet every 12 hours. One thing that I don’t like about it is that one of the side effects is sweating and flushing and I get enough of that already with the premenopause that I am going through!
So are you going to call his office on Monday Kris and ask him to prescribe you oxycontin or something else longer acting? Like you said maybe he was just having a bad day. I am so thankful for this new dr I could just cry with relief! I called his office on Wednesday and told his receptionist to tell him that I loved him!!
I am also hoping that after nest Thursday that I might not need the pain meds anymore! I know I am wishing big!
Keep me informed on your dr and I wish you the best!! Good Luck to you!
Karen
Yes, he was really rushed and running late from the traffic in the rain and from dropping his 2 1/2 year old daughter off at day care. I also think that he thought I was responding well to the social worker who does hypnotherapy. On top of that , he knew I was seeing an acupuncturist the same day. He wanted to see how that went before I started on the long acting pain meds that he had recommended. I think the issue is mine. I did have good results from the hypnotherapy in terms of the ability to relax, which helps the pain to a minimal level. At the end of the day, I need to stop trying to be a pleaser and be more honest about how I’m feeling. I was better that day because
i saw him first thing in the am, which is my best time. But, I think his reponse was based on the fact that the social worker said I was responding well to that aspect, which I am to the point I described. I just think that he believes I can get more relief from that and the acupuncture he prescribed based on my comments to the social worker. I can employ parts of what she is teaching, but I didn’t do a very good job of explaining that it is more for relaxation vs. pain control. I think he took the leap that I can utilize that technique to minimize my pain, so I don’t need the long acting pain meds. I am way too much of a care taker and want to make people feel that what they are doing for me is working, and I didn’t do a very good job of explaining how it helps me relax, but itsn’t helping with the significant pain. I will be telling the full truth in greater detail when I call Monday and explain that the flare-up started again on Wednesday and that I
have had to increase my dosage. He prescibes 2 of the Ozxycodone every 3-4 hours, which is 16 a day. On a normal day, I take 6. I take as much as 10 on a bad day, just as prescribed. I try not to take them in the evening as they keep me awake. So, they basically just get me through the day.
I’m ok until the end of next week at the avg. 8 per day dosage. I just hate having to worry about it. However, I know he won’t make me go without, so it should be ok. He just said to call. I hope the day comes that I don’thave to take pain meds any more. I am meeting with Dr. Freeman again onthe 7th. I have many questions. I would like him to do another EUS and the pancreatic function test to see if anything has changed. If not, then I have to accept that these adhesions are my primary diagnosis with SOD being 2nd. I’ll know alot more soon. The one thing I do know is that it is getting harder and harder to maintain and function every day. I’ve been on vacation this week. I can tell I feel better if I’m able to take a break and rest for a bit several times a day, as much as I hate admitting it, it really helps alot. It’s hard to do that when you’re working!
Thank you again for being here and for being so understanding! I’ll keeo you posted after I talk to his nurse on Monday. In the meantime, I hope oyou are continuing to feel ok until your ERCP on the 3rd. Please stay in touch!
Lots of hugs!
Kris
I was also very concerned about the ERCP and got myself really worked up. I couldn’t stand another prolonged attack like the endoscopy brought on. I had a great deal of difficulty getting on the table .
It was a total storm in a tea cup. I had no problem, and no extra pain at all after a 90 minute ERCP and manometry of both pancreatic ducts, and a failed attempt at canulating the common bile duct.
My case may not be typical but I think a lot of the flare ups they ascribe to the ERCP is really a reaction to the anesthetic by folks with irritable intestines .
If you insist that they use propofol and have an experienced doctor you trust, I wouldn’t worry too much.
Incidentally for those trialling acupuncture. The current understanding from researchers like Melzack and Wall is that the low frequency of needle twiddling stimulates an area in the thalamus (part of the brain) called the PAGA to release endorphines – natural opiates.
The probability is that the natural opiates don’t have the GI problems of synthetic are released in enormously smaller amounts ones and are more effective. Unfortunately the effect is transient and not curative so you’re likely to need acupuncture daily to get prolonged pain relief. The stuff abut energy meridians and chi is not scientifically valid.
The studies show the effect post acupuncture lasts 20 minutes to an hour. Any effect beyond that is likely placebo – which incidentally is also an endorphen mediated response.
But if they are not twiddling the needles (rotating them in their fingers at a frequency of 8 to 10 hertz) you won’t get any real effect. Incense candles etc on the needles do nothing.
There is some evidence to suggest that TENS (transcutaneous electrical neural stimulation) works the same as acupuncture and the units can be purchased cheaply enough to use whenever you want. There was one study that found a 20% reduction in SO tone (contraction) following tens application to the epigastric region.
I want to wish everyone a Happy Thanksgiving. I have not been posting much, but reading everything. I am glad most of you are getting adequate pain meds. I agree with the doctor that said not to try and figure out what causes the attacks………………I can find no single food item itself, but a consideration of multiple factors. So far, I am in mild pain and can control it. My doctor is looking into scar tissue setting mine off and I really hope that is the answer. I don’t know…………………maybe know one really does.
Hi Donna!
Your comment about scar tissue setting it off is interesting. I have severe adhesions as a result of a ruptured ovarian cyst 5 years ago. I’ve had surgery twice in the last 6 months for adhesions. I’ve also had an ERCP which showed very high pressures in my common bile duct. My doctor is Dr. Freeman at the University of MN. He has said he knows there is a correlation, but doesn’t know how. He had hoped, as did I, that surgery for the removal of adhesions would address the problem. Unfortunately, it has not helped. Please let me know about how you’re doing and what you find out in this regard. I’ll do the same. Happy Thanksgiving to you as well!
Ever had one of those epiphany moments when it all comes together. I just did.
On researching small bowel diverticulitis I found the most common cause is small a bowel motility disorder. So I linked to that and found the following. Here’s some important extracts:
These lesions are frequently associated with small intestine motility disorders. The most common symptom is nonspecific epigastric pain or a bloating sensation – the pain can be severe and cholicky in nature.
Intestinal motility disorders apply to abnormal intestinal contractions, such as spasms and intestinal paralysis. This phrase is used to describe a variety of disorders in which the gut has lost its ability to coordinate muscular activity because of endogenous or exogenous causes. Intestinal motility disorders may be primitive or secondary and may manifest in a variety of ways, including abdominal distension and recurrent obstruction; severe abdominal colicky pain; severe constipation; and gastroesophageal reflux disease or intractable, recurrent vomiting.
The clinical presentation of patients with intestinal motility disorders is protean and may vary from simple nausea and maldigestion to severe abdominal pain, vomiting, diarrhea, an inability to eat, weight loss, and other symptoms.
IBS, the more commonly diagnosed disorder of intestinal motility, has been considered a disease of the colon for decades, but research on GI motility has demonstrated that underlying motility disturbances can occur in the small bowel.
Vagal function; the release of NITRIC OXIDE (the active agent in sub lingual nitrate sprays), vasoactive intestinal polypeptide, and motilin; and nutrients of the meal and other enterohormones also affect GI motility. Pain and distention may be almost continuous or separated by periods of clinical improvement.
Patients may have a history of weight loss or previous abdominal operations with no obstructing lesion found, or they may have a family history positive for the condition. Irritable bowel syndrome: Accessional abdominal pain, nausea, and irregular bowel habits that intensify during stress are the most common symptoms in patients with IBS.
Medications such as codeine and opioides may severely exacerbate symptoms and patients with suspected motility disorders should not use traditional anesthetics.
I think it’s pretty clear now what the cause of the problem really is in my case and a lot of those diagnosed as type 111 SOD. What I find alarming is the number of GI specialists who are not familiar with this condition when there is a society devoted to this problem in the USA.
There are a number of recommended treatments from medical to surgical. I won’t give them here as it’s complex. But it’s surprising how close I already was.
Avoid fermentable foods, more water, more insoluble fiber, antibiotics then certain promotility medications.
I won’t be posting here much further as it’s clear now I don’t have SOD – and neither do most type 111s. I’ll be happy to answer any further question that I can on the topic.
Hi Brett!
Do you have adhesions that you believe have lead to your condition? I’ve been told that abdominal adhesions can form not just from surgery, but as in my case, from the fluid emitted by the ovarian cyst that ruptured, and by other causes that could result in significant inflammation in the abdomen. I’ve had every test there is done pertaining to motility disorder. Nothing has shown positive except for constipation, which I keep under control through using MiraLax and Senna tablets. I also take Align, which is a probiotic. I still have daily pain and nausea. I’ve tried every diet from lactose free, low fiber, high fiber, gluten free and low fat. High fiber made it worse. Low fat and not eating processed foods helps some. Have you had success with the diet adjustments and medications you’re taking or is it too soon to tell? Please let us know how you’re doing.
I have no adhesions or past surgeries Kris. I’m no expert in this area but ovarian cysts should cause bowel obstructions only so I wouldn’t expect nausea to be a symptom and the pain should be lower abdominal?
My experience pretty much validates the stuff I’ve read recently. Small meals – lots of water and avoid fermentable foods. Soluble fiber is fermentable and REALLY flares me big time – wheat bran etc and this is typical in IBS.
Insoluble fiber works quite well – as it can’t be digested by bacteria. Normafib seems to help quite a bit – It’s and Australian brand but they should have something similar. Just make sure it’s insoluble fiber and start with very small doses.
I’d be interested to know what tests they did to assess your GI motility? It does seem you can have pain in the absence of a motility disorder (and other things like SOD etc) – with visceral hyperalgesia alone – but small bowel Diverticuli are present in 50% of folks with a motility dosorder. Mine is loudly audible at times so it’s pretty obvious. Diarrhea typically results from rapid transit time and is also evidence of a possible motility disorder, reduced peristalsis from a motility disorder results in consipation and gastroparesis. So there’s 2 types of IBS – diarrhea predominant and constipation predominant. Treatment varies for each type.
There’s just so many potential medications to try I’m not sure what to do next. Since the pain resolves in my case with nitrates I think my problem is more one of GI spasm – so I’m thinking of mebeverine (colofax) or boclofen first with an antibiotic.
IBS studies have found significant improvement with Rifaximin and most small bowel motility disorders induce bacterial overgrowth.
Hi Brett! I answered you yesterday, but it looks like it didn’t post for some reason. Anyway, I’ve had the following tests done relative to motility:
Pelvic Floor Study
Gastric Emptying Study
Transit Time Study
Hydrogen Breath Test
They were all normal. My adhesions are the result of the fluid emitted from the ovarian cyst that ruptured. They were diagnosed during a colonscopy in 2007. The doctor performing it said it was the most difficult colonsocopy he’d ever done and that he’d done thousands. Not a distinction one wants to have!
When I had surgery this past March to have them removed, they found them wrapped around my remaining ovary, wrapped all over my intestines and my gall bladder. They were back in the same places during surgery again in May. The symptoms of adhesions also are pain and nausea, just as with SOD. They can cause partial intermittent bowel obstruction. I’ve been told that the fluid caused inflammation, which caused the adhesions. The surgeon told me that anything that causes significant inflammation in the abdominal cavity can cause adhesions. Adhesions are also very difficult to diagnose. I saw that Nymphaea asked for your email address in the event that you leave the group. I’d love to stay in contact and would like to know how you’re doing.
Would you like to give us your e-mail Brett, just in case you decide to leave the group and would like to keep in touch ? If you are right about your own specific case I guess this is further proof that this is a woman’s problem !
Thanks Nymph and Kris,
My email is snelly10@hotmail .com.
Your dead right in that this is predominately a female problem – and most commonly occurs post GB removal.
What really burns me up – and has me itching to file a complaint is my “specialist” refused to listen when I said the research shows this problem is pretty rare in males – and especially rare in males with an intact GB AND that type 111 SOD is frequently not SOD at all. So the probability of being true SOD is likely less than 1%. On top of that I have all the symptoms of small bowel IBS.
I reminded him of the old medical saw – when you hear hoof beats think horses not zebras but he brushed that aside.
The only thing that stops me is we all have made some bad calls and mistakes and I’m responding to my own annoyance rather than real desire to help others.
I may send a letter noting how important manometry is and how many unnecessary test I had because it wasn’t available here.
There’s still a slim possibility the divisum or the CBD is symptomatic and I got a false negative from the manometry – and the DIDA scan but it seems very unlikely now.
Sounds like you have a lot of issues Kris – and true obstruction. Have they considered a partial bowel resection? I have and 82 year old patient and friend who was just admitted for severe abdominal pain. A diverticuli ruptured so they did emergency surgery and resected a portion of his colon. He survived and now has recovered fully – with no pain. Gets you thinking….?
Thanks, Brett!
I did consult with a colon surgeon early in this journey. He is th eone who ordered the pelvic floor study and the transit time test. He told me the only option was to have my entire colon removed. I went to another colon surgeon for a 2nd opinion. He said that would not only be a mistake, but would be dangerous. They’ve never been able to see exactly where the obstruction is during all of the testing. I guess why that’s why they label it “partial intermittent obstruction”. Dr. Freeman had me consult with a general surgeon at the U of M for the possibility of another adhesion removal surgery, only this time with a barrier put in. He wanted to wait until Jan. or Feb. to discuss it again since it had only been 4 months since my previous adhesion surgery when I saw him. I will add this question to my list for Dr. Freeman on Monday. I really appreciate your support and insight. Thanks for your email. I’ll stay in touch!
Have a good one!
Kris
SO MANY PEOPLE, SUCH LITTLE HELP. i AM A 57 YEAR OLD MAN, WHO HAS REGULAR ‘GALL BLADDER’ ATTACKS YEARS AFTER REMOVAL, THE GI’S I’D SEEN HAVE ASKED THE SAME 10 QUESTIONS ABOUT BOWEL MOVEMENTS AND CONCLUDED IT’S JUST SOME NASTY I.B.S. THING, MEANWHILE I’M IN THE HOSPITAL OVER AND OVER WITH THESE STIFLING EVENTS THAT PUT ME IN BED FOR A WEEK AT A TIME HEAVING MY GUTS OUT, WISHING I COULD DIE TO ESCAPE THE AGONY.. MY INSURANCE PAYED ME FOR A YEAR BUT THE THE LACK OF PATHOLOGY AFTER 2 YEARS OF BEING SICK HAS MADE IT DIFFICULT TO COLLECT. BUT HE TESTS DONE WERE FOR PORPHORIA AND ALL THE WRONG STUFF..BLOODWORK HAS TONS OF HIGHS, BILLI.ALWAYS .OCCASIONAL LIVER, GAMMA. WHITE BLOOD ,NUETROPHILIS. ALWAYS ELEVATED. MY DR SAID I HAD HAD ENOUGH OPINIONS AND SHOULD SEE A SHRINK. BUT HE NEVER SOLICITES MY HOSPITAL RECORDS SO HE KNOWS SQUAT. MY WIFES DR SAW ME [A G.I.] HE SUSPECTED S.O.D. IMMEDIATLY BUT CANNOT DIAGNOSE OR OPERATE. WE GOT THE NAME OF A VANCOUVER DR WHO MIGHT BE ABLE TO SHED SOME LITE IN MY DEMISE, AND ASKED FOR A REFERAL, THROUGH MY DR. WHO ACTUALLY LAUGHS AT ME, SAID “HE EVER HEARD OF S.O.D.” HERE HAVE SOME MORE MORPHINE, THAT I THINK CAN MAKEMY ATTACKS WORSE OR PROLONGED SOMETIMES, BUT HAVE HEARD NOTHING AND IT’S BEEN ALMOST 2 MONTHS, OUT OF DESPERATION I HAVE E MAILED THE SOD DR BUT HAVE HAD NO RESPONSE. MY INSURANCE IS 2 YEARS BEHIND IN PAYMENTS, I HAVE APPEALED AND GOT A LAWYER TO HELP SORT OUT THIS PERSONAL HEALTH AND FINANCIAL MAYHEM..ALL I WANT IS THIS THING FIXED, IT’S LIKE HAVING A MONSTER UNDER YOUR BED THAT COMES OUT WHENEVER YOU LEAST EXPECT IT, AND BEATS YOU RELENTLESLY..MY HEART GOES OUT TO ALL OF YOU..
David,
So, sorry it seems you are one of the rare guys who has joined our club. You will find very much help here, even some doctor referrals. Please tell us your state or province and we will try to recco you the closest Doctor we know who can help you. How long has your suffering been going on ? We are all here for you. Wishing you the ability to control this monster and cage it !
Sad story David and much like my own.
The agony is so severe you want to die and the Docs think it’s in your head. Definitely stop the morphine. Whether it’s SOD or IBS it can make both severely worse – and brought on the attacks in my case.
Since you’ve had you GB out the probability of being SOD is higher in your case – male or not. Elevated WBC and neutrophills possibly indicates some sort of infection. Liver enzymes and bilirubin should definitely not be ignored and could be type 11 SOD.
Firstly get rid of the docs that want you to have a psych eval and give you more morphine. It takes time to find a good doc who’s experienced in this area but it’s absolutely critical! You could ask for an US or MRCP to determine if your duct diameters are normal – but elevated enzymes alone is enough for type 11 SOD without further investigation. Some docs will do endoscopic sphincterotomy on the bases of elevated enzymes alone.
Find a doc who’ll refer you to a specialist center that can do manometry. You simply can’t mess around with traditional physicians in this area – they are a complete waste of time and often do more harm than good.
In the meantime get yourself some sub lingual nitrate spray. You may not need a prescription even – you don’t in Australia. It may not help if you have a stenosed sphincter (type 1) but it will for type 2 – and will likely ease the pain a lot more than morphine.
The good news is the probability is high that it’s SOD and if so there’s an effective cure. I’m optimistic for you.
David, Welcome to the group. I am sorry you have had such a bad experience with the doctors in your area. It’s bad enough to feel horrible, but than to be treated they way also stinks. I don’t know if you are familiar with the website- CLINICAL TRIALS.GOV, but I took it upon myself to look and see if there was anyone in Washington, and there is. VIRGINIA MASON MEDICAL CENTER, Seattle Washington. The contact is a Alice Stead 206-341-1450. They are currently recruiting for SOD patients. I thought that might help. We are all here for you, even if you just need a place to vent, we understand. Take care, Michele/MN
Hi David,
Where do you live? I apologize if you mentioned it earlier and I missed it.
I have talked with The recruiter for the EPISOD study they are doing at Virginia Mason and she said that they are looking for people who have never had a spincterotomy. She said I am well past the point of treatment that they are looking for. They are very good there at virginia Mason. I am actually having my sixth ERCP by a Dr. Brandabur tomorrow as a matter of fact. He is world renowned I have heard and people fly in to meet with him from all over the world. If you have any questions about the GI Dept at Virginia Mason please don’t hesitate to ask me and I will do my best to help you. Welcome aboard!
Karen
OK everyone..please pray for me that I might find some answers and the dr’s can get me some relief from this awful pain and nausea tomorrow! I check in at 10:00 am and I believe the procedure is at 11:00 am but might be a little later than that. It is an overnight stay in the hospital so I will get on here in the next few days to let you know how it went.I need to calm down and not be so freaked out about it. I’m sure I will be fine. Please keep me in your thoughts..I very much appreciate all of you! Take care and will talk to you soon,
Karen
Karen,
Best Wishes! I hope everything goes well.
Best of luck to you Karen, we will be praying for you!!!
Michele/MN
Hi Michele!
It was good talking to you last night. I hope you were able to get some sleep and that you feel better today. Let me know how it’s going! We’ll talk soon.
Take care!
Kris
I am sending my Very Very Best Thoughts, Wishes & Prayers for a Successful Procedure and Overnight Stay !
Blessings To You,
Cristie/Gracie
Hi Karen!
I was thinking about you yesterday, knowing it was the day of your ERCP. I’m praying that all went well and that you get some relief and answers. Please let us know as soon as you can how you’re doing and what you found out. You’re still in my thoughts and prayers!
Kris
Travel in hope Karen – sounds like you’re in good hands.
Well I am home now. Thanks to you all for your kind words and prayers. The Dr did put in a stent yesterday and found that I had an ulcer. He said my stomach looked like someone poured bleach down it. He also said that I have the smallest biliary duct of anyone he has seen. So now we leave this stent in for 3 months and then see if we need to go to a bigger one next or if this takes care of it. I had a real bad experience coming out of the anesthia this time. They said I was very combative and I woke up to everyone holding me down and yelling at me and I am very claustropobic so it was a bad experience. My dr said he wouldn’t touch me from now on without being under a general anesthia. I still have quite a bit of pain now but hopefully that will go away in the next couple of days.
Take care everyone,
Karen
Hi Karen!
It’s good to hear from you! Wow. What an experience. What will you be taking for the ulcer? Hopefully, getting that under control will help some of your symptoms! I think you said you’ve had a similar experience with anesthesia. There must be a different type that you could tolerate better. This had to be a terrifying experience for you! I’m so hopeful this stent will help you. Rest lots and feel better soon!Please keep us updated as to how you’re doing.
Kris
The Dr prescribed Prilosec twice daily for me. I think it will help. How have you been feeling? Did you get your meds straightened out with your dr?
Hi! I take that once a day. It does help. I did get my meds straightened out. It was no problem at all. I was probably just being paranoid based on past experiences and the fact that he asked me to call this time instead of giving the prescription when I was there like he usually does. I called his nurse on Monday. She said she’d take care of it right away. She even called back only 15 minutes later to tell me that it was ready, so I picked it up on Thursday. This week has been better. Yesterday was my birthday and it was the best day I’d had in a long time. I said it was a birthday present from God!
My boyfriend, Paul, and I met some friends for dinner. It’s been awhile since I’ve gone out socially. It’s tough enough to make it through the work day, as you know too well! I had a good time and feel fortunate that I got out and did something normal. Today is a little tougher, probably because of the food I ate. Are you still having alot of pain from the ERCP? Thanks for thinking of me!
Kris
Karen,
Everyone in the endoscopy center knows who I am, I am pretty sure it is because I have been combative. With my first ERCP I even had a cut inside my mouth. They are nice enough not to say anything to me about it. They give me so much Versed that I usually do not remember anything for 4-5 hours after the procedure. At least those are 4-5 hours that I don’t remember that I am in pain. I can have good days, but it has been over 2 years since I have had a pain free day. I am going to see a new pain specialist next week since my last one went off the deep end. One of my friends over dinner suggested that I try methadone for pain. Methadone is also used for maintanece of hopelessly addicted heroin addicts. I had to laugh because it is probably less humiliating and degrading to be a heroin addict than to go see a pain specialist.
Karen,
The specialist I saw told me doing repeat ES, after a reclosure is a bad idea as you just add more scar tissue to a sphincter that is almost certain to reclose – and this sounds like your story in a nutshell.
She said she had good results with progressive stenting so I think you’re on the right track this time. You probably will need at least a second larger stent after the first one but think of this as a good thing opening up the duct slowly over time.
Did the doc talk to you about treatment for helicobactor prylori? Unless you’re taking high doses of NSAIDs it’s the only possible cause for the ulceration and gastritis.
Either way the prognosis looks good for a full recovery.
Typically they prescribe prilosec, nexium or some other PPI with Amoxicilin, Falgyl and bismuth. Some are not using the bismuth now and just an antibiotic cocktail with a PPI.
The original researcher Robin Warren used bismuth and got good results so I think the bismuth is a better option – and is the main ingredient in peptobismal .
Have they considered putting boxing gloves on you before you go under?
Hi Everyone….Well it has been almost 7 weeks since I had my ERCPw/spinc…..I was doing really really well….no nausea and rest of lower GI back to normal…just some twinges of pain now and again…I was thrilled. In the last week I’ve started having problems again. ….terrible bloating, nausea and the pain….I’m so frustrated and hopeless….my regular GI has already told me….you had the procedure that takes care of the problem! Now what do I do…..I’ve noticed that some of you here had emailed Dr. Freeman or Dr. Cotton……Do they accept inquiries if you are not their patient?? Any comments are greatly appreciated. Take care-Laura
Hi Laura!
I’m sorry your having symptoms again. It has to be so hard to have had the relief and now to be back where you were before. Your GI dr. is wrong.Many of us who have had the procedure have had either no relief or temporary relief. I had no relief from mine. Dr. Freeman said unfortunately that does happen. I’ve heard from others that he does accept inquiries from those who aren’t his patient. It would definitely be worth trying to contact him. i hoe you feel better!
Kris
Hi Laura,
Please don’t let your Dr tell you that there is nothing else they can do. I was in that same situation about 3 months ago and I finally said enough! This can’t possibly be all they can do for me. I changed GI Dr’s and my new one said that he is starting out with a small stent which I just had put in Thurs and will change out every 3 months with larger ones if necessary. He told me that I’m only 48 and I have a life to live! I started crying when he told me that. He said this is a common problem. He is in Seattle which is alot bigger city than my last GI dr was in and I think he knows alot more about this disease. I hope you can see another dr that can help you more because there are more things that can be done. Was that your first spincterotomy?
Hello everyone,
Have been reading your posts. Thank you. Ipersonally was on the upswing until I got another bladder infection and was given AVELOX antibiotic and after the 2nd day, only 1/2 hr. after my pill, I had an SOD attack. I’m still bad off and we have an ice storm and my GI wont return my call and my GP never has a covering doc w/ no weekend hours. The bladder infection is severe. And the SOD is severe intermittantly. I have realized that every SOD attack was pre empted by a course of antibiotics. I have kept notes of all this. Although I give acurate history when I have an attack, no doc has ever seen my connection to SOD through antibiotic use. hopefully this info is helpful as I am awake beecause of the pain.
Hi Nymphaea!
I’m sorry you’re going through a bad time. I hope that you hear from your doctor. I’ll touch base with you later!
Kris
Thanks,
Did a a hospital run this morning. Through Fast Track I could find another antibiotic that would not give me SOD. They picked Cipro. Oooops big mistake, also a Floroquinolone ! So, I had tetra cycline and macrobid still in my house, so, I’ll have to make due until my bladder culture comes in on WED. And then we’ll figure out which of the 2 choices I made will be most adventageous, for me. Cymbalta is being tested for SOD, good for migraine prevention and fibromyalgia. I would rather be on one drug then many, not really such a bad idea. New job starts tomorrow and I will be taking care of patients from 11-8 without lunch or dinner breaks, just eat between patients, so I have to get over this soon. Sod feels better then last night Avelox is in the garbage and Cipro is sitting in my cabinet waiting for desparation. Have any of you also had SOD III attacks brought on by antibiotics ?
I can’t say that I have, but I haven’t had a need to take them in a long time.I tried to call you tonight, but your voicemail didn’t kick in. I am concerned about how you’re doing and wanted to check in. You’re going to have a demanding day tomorrow. I hope you feel better and are able to manage. I hope you’re better and all goes well. It’s always tough starting a new job. These issues make it even more challenging. Give a call if you feel up to it. Just know that I’m thinking about you and am praying you are getting better.
Hang in there, honey! I’m always available if you want to talk.
Looking forward to hearing from you!
Love,
Kris
Sorry about that Kris. Danny was hooking up a new phone system. Missed you. Bladder is better on Tetracycline and mega water drinking ! No SOD attack. Looks like I killed that one early Ready to start getting ready. Reporting at 11AM for duty ! Bringing a lot of water ! And lunch and dinner already packed. Hopefully today will be an early night, so I can fully recover. Thanks for your well wishes. Talk to you soon.
Nymphaea
Kris , i am glad i read your post , i havent had a bout with the pain in my side for at least a year , i wound up with a infection in my leg caused from bryers while deer hunting , the doc put me on cipro , then clindamycin and lord here we go i feel like i am dying , ontop of the pain in the side , the cipro has screwed up my muscles and tendons , lost of muscle pain , i thought i was done with the sod , it use to be brought on by coke , now it looks like antibotics , for god sake stay away from the cipro , i had my gallbladder removed 2 and a half years ago now it feels like it is back !!!!
does yall pain radiate to the kidney area and liver area , also stomach pain
Hi Shawn! It does. Sometimes it feels like a knife stabbing right through into my back and sometimes it feels like it wraps around my ribcage. Also, sometimes i can feel it as far down as to the right of my belly button.I’m sorry you’re having a tough time. I hope your doctor is helping you!
Hi Kris! I haven’t posted for awhile but I have been reading a lot of the posts. Happy belated birthday!! I am glad you got to have a nice celebration without any attacks! I basically am in the same spot as I was, no diagnosis yet, more testing. Just coming out of pity party where I was too dejected to even follow up but I have decided I really need to keep going because the alternative of living with this crud without a diagnosis is not an option! The way you describe the pain sounds just like me. Question – when yours is acting up, is it hard (or impossible) to lie on your right side? Does physical exertion (lifting something, stretching) ever bring on the pain? If anyone else is reading this, can you answer if this has happened to you?
Hope everyone is having a good week!
Michele A.
Hi! Thanks for the birthday wishes! It’s good to hear from you. I’ve been wondering how you’re doing. It does get really hard to cope with this. I’m glad you’re going to keep pushing forward to get the tests and ultimately, a diagnosis. Let us know what tests are happening and when!
Yes, I have a very difficult time lying on my right side and it’s more difficult when it’s flaring up. Yup. Physical exertion can bring on pain in me for sure.
Hang in there and remember, you can come here any time…even just to vent! These issues are life changing and it’s really hard to get used to. It helps so much to have a place like this with the great people here who understand.
I hope you have a great day. I’ll look forward to hearing from you soon!
Kris
Thanks so much Kris! I love my sphincter friends. =) This site really does help! Interesting that you have the same experiences with lying on right side and physical exertion. Here’s another one – cold water? Sometimes within a few sips the pain really flares up. Also sometimes happens with coffee on an empty stomach, but there are some things I cannot live without! =) I am going for a CT scan next week. If I am correct, not really a chance it will be able to pinpoint SOD but can identify and/or rule out other things. Not sure what to hope for at this point. I know you know the pain of normal results! You were diagnosed SOD II because of the pain plus high pressures, right? So you went for ERCP without definitive diagnosis? Sorry, hard to keep stories straight. This can be so dejecting because it always had seemed to me that debilitating pain attacks mean something is acutely wrong and then you can fix the problem with a trip to the doctor/ER /hospital and be fine. As we all know, not really the case..
Thanks again, and hope that you are having a pain free week!
Michele A.
Hi Shawn !
Hope you get over the SOD pain soon. Mine took about 6 weeks after Cipro and thankfully 48 hours after having Levaquin (Avelox), 1 pill Fri & Sat night. Thank goodness I stopped and thank goodness I figured out once and for all what was causing my attacks ! (Though Floroquinolones : Cipro, Levaquin, Avelox) never gave me a problem B4 my Hep B Vaccines ! Used to go on them all the time for UTI’s. (Prone to bad UTI’s because of a bladder Disease called Interstitial Cystitis or Painful Bladder Syndrome) Sadly, though, all the antibiotics which get rid of Bladder infections are TOXIC to the kidney ! So For you, its very difficult to tell which pain is Right Sided Kidney pain and which is SOD PAIN which hurts in all the areas you mentioned and yes is also in the right Flank (Similarly w/ KIDNEY) And I have no diabetes or high Blood pressure or weight problem am only 43 and My Kidney Function is going down ! NOT GOOD ! So, yes these antibiotics are miracles to infection, but hurt us in many other ways !
WOW Kris you really nailed the pain description to a T ! In very few words !!!!
Thanks! I think it’s from practice making perfect!
After having to explain it to so many doctors throughout this journey, I’ve learned how to minimize the words!
Hi Nymphea <,
This pain is driving me nuts , although i havent been diagnosed with sod i am sure that is what it is , i hope at least , the pain has my lower back hurting like hell and pressure in my bladder area , i find tha soma a muscle relaxre helps a whole lot ,i figured it is the cipro that brought all this on but it dont seem to want to go away , my right side is sore as hell but has got alot better with the muscle relaxer ,fried food really sets it off how about you all.soma is the one i am taking
Now Shawn,
Lets make one thing straight. We don’t use the “F” word here on this site : Fried. Non of us can have fried food and would end up in an ER if we tried. I want to also be perfectly clear. Your bladder pain has nothing to do w/ SOD pain, and lower back pain does not Jive either, unless you are referring to Thoracic/ Lumbar junction. OK I’m hoping we are all on the same page here. Now, many other organ problems are set off by “F” foods, Gall Bladder, IBS, Stones, blockages. So, get to a decent GI who knows about SOD and allow yourself to be tested & questioned acurately. None of us have diagnosed ourselves, and many of us have been misdiagnosed 1st. Better safe than sorry. Rule out everything else out first !
Nymphaea is right on! Fried foods are a no-no. For me, high fiber foods are another no-no. I ate brown rice the other day at lunch and contemplated a trip to the ER. A low fat, low fiber seems to help. I can eat dairy, especially cottage cheese. (Michele in MN is smiling….we’ve talked and this is her staple, too!) Please find a good GI doctor to get the proper diagnosis as Nymphaea suggests. It’s tough to do and you may have to go through a few of them, but it’s worth the work to find the right one.
Kris
Hello everyone, Haven’t been able to post in awhile, but I have been reading posts, and have had everyone in my thoughts. Karen and Nymphaea, I am glad to hear your doing a little better. Nymphaea and Kris thank you for the laugh this morning about the F word and the cottage cheese. LOL I needed that this morning, what started out as an ok morning is starting to get icky.
Laura, hang in there, it can feel very hopeless sometimes, especially when your told your problem should be fixed.
Shawn, I hope you are feeling some releif. I have tried muscle relaxers, but they make me more sleepy than anything, and don’t really help as much as my pain meds do.
Wishing everyone a pain free or pain tolerable day!
Michele/MN
i have been to doc after doc i mentioned SOD to the doc that removed my gallbladder he says it is too much coke , LOL i dont know what the problem is i have been fighting this foe 15 plus years . thought i had it beat then the cipro and clindamycin has set it off again , the pain is funny sometimes it is moderate to bad then other times it is just a sore feeling in the ribcage liver area.i was fine last night , So i ate salsbury steak with mashed potatoes and gravy , and you know it woke up this morning in pain .
Well the next few days should be different. I started seeing a new Dr., a emergency room Dr. says he will try and help me and my pain. He ordered an MRI of my back to rule out that. I also told him I would like to try and go off my Nortripyaline to see if I can lose this 40 LBs I’ve put on since I’ve been on the stuff. I will still be on the Tramadole and Levsin. He is weaning me off starting tomorrow, going down on the MG. If all this makes the SOD worse I will go back on it, but for now I will try this.
Hi, just wanted to let you all know I was rushed to the er Sunday night and have been hear ever since. My labs have been getting worse everyday, today lipase is over 3000. Dr freeman has decided he wants to do an ERCP tomorrow. He said I have smoldering pancreatitis. And he thinks placing a stent is the only thing that will help. Dr Sutherland was also here and he thinks I should do the TP IAT.
How is everyone else?
Smoldering pancreatitis?? Holy cr*p! I hope everything goes OK and you get out of there soon!
Wow!
I’m sorry to hear that, Melea! Have you decided what to do? The ERCP with the stent might be the 1st step as it is certainly far less invasive. Let us know! I’ve been having a tough few days again. I saw Dr. Freeman on Monday. He’s ordered another EUS and the pancreatic function test. These will be done next Thursday. Please let us know how you’re doing and what you decide.
Kris
Melea,
Did you do the ERCP? How did everything go? Are you still in the hospital? I do hope you are doing better.
Karen
Yes I had the ERCP I just got back to my room around 10pm. Since I have smoldering pancreatitis hw was very worried to do a procedure that is likely cause pancreatitis. So he said he went in and dropped the stent in and got out as fast as he could. Don’t feel any better yet but that doesn’t mean anything. On Monday they are sending me another dr to talk to me about placing a pain pump. Has anyone else here had/has a pain pump? If yes did you like it?
Melea,
How are you doing today? I can’t stop thinking about smoldering pancreatitis – that sounds so positively awful. Did you talk to the doctor yet about pain pump? Sorry that I have no input on that – have not had one. Hope you are doing better.
Michele A.
Michele A.
Hi Kris,
I am so sorry that you are having problems again. Seems like with this you just get feeling better and think you’ve got it kicked for a while and are going to get a break and then you start having problems again. It is so frustrating I know! I hope that your tests on Thurs show something. Let us know how everything goes.
Hang in there!
Karen
Isn’t that the truth? I’ve learned to appreciate the better days. Today’s been a better one again. How have you been doing? I hope you’re improving after your ERCP. Please let us know. I’ll post after the tests. The radiologist may tell me something about the EUS or he could wait and have me see Dr. Freeman again. The pancreatic function test has to be sent to NY for analysis. I know it takes 3-4 weeks to get the results, so I’ll post what I do find out on Thursday.
Take care!
Kris
I am still in more pain than I thought I would be in. It is definately not the intense pain that it was before the stent placement but I was hoping (dreaming) that I would be pain free after ward. I am still glad that I did it and still hoping that it still gets better in time.
Kris,
What is the pancreatic funtion test? I don’t think I have ever had that done.
Karen
Hi Karen! I just saw this your post this am. I’ve not had one before, either. My understanding is that it shows whether or not your pancreas is functioning correctly. I believe it can show evidence of chronic pancreatitis that other tests may not. I know it takes 3-4 weeks to get the results. I’m a little worried about what will be discovered during the EUS and that test, but it’s better to know than to not know. I should find out about the EUS right away.
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