Hello. Sphincter of Oddi Dysfunction and Pancreatitis. Here’s my story so far…

Dec. 27, 2010

To bring in the new year, I’ve decided to start a blog. I will discuss and share my experience with living with Sphincter of Oddi Dysfunction, Pancreatitis and the pain and struggles that comes along with it.

My name is Julie. I’m 28 and married. Overall I was a pretty healthy kid but I had some issues with eating fatty meats. I got mono in high school and shortly after I developed an arrhythmia (tachycardia) and asthma. Later I started getting severe left and right upper abdominal pain under my ribs, nausea and slightly elevated lipase. The pain would last anywhere from a few days to a few months. I had many ER and doctors visits, abdominal ultrasounds and CT scans. One day my neck started to hurt and I could barely move. The pain traveled to my right shoulder and went all the way down my arm. It was very painful. The ER doctor came in and told me it was Pancreatitis. I was referred to good local GI doctor the next day.

After reviewing my chart he felt it could be my gallbladder. I had a HIDA scan to check to see how well the gallbladder was functioning. Results came back fine. I started to lose weight and got very ill so they thought it would be best to take my gallbladder out anyways. My gallbladder had no stones and was healthy but slightly inflamed. The doctor said my bile ducts were narrow. I felt pretty good for about a week. Then I developed a new kind of pain – severe attacks. I got pale, sweaty and my heart raced. It felt like someone was stabbing me over and over in the center of my abdomen just under my ribcage and it radiated to my back, then up to my chest. Thus far, I have had 11 of these attacks. They can last anywhere from 5-30 minutes. I was told that it was Sphincter of Oddi Dysfunction (SOD). It’s a rare disease where the bile duct opening spasms and does not allow bile out as it should. The pain is severe enough to make anyone scream, cry and beg for mercy.

To make a long story short I have since had three ERCPs, a biliary sphincterotomy, pancreatic sphincterotomy, umbilical hernia repair, heart ablation, I’ve been battling chronic pain, malnutrition, hypotension (low blood pressure), vomiting bile, nausea and been hospitalized a few times here and there. And now, just in the past few months I’ve been told that I have Chronic Pancreatitis and that my ducts within the pancreas are narrow which is causing a lack of enzymes for digestion. And since the enzymes are not being released, my pancreas is getting digested and inflamed instead. This is still new to me but I will updated as I venture through it.

It has been a very long four years with many procedures – with more to come in the near future. I understand how it feels to be told it’s a rare disease. To be told it will be a life with chronic pain – that it may be hard and painful to eat. It’s easy to feel alone – like there is not one person out there who could understand. And for the family members who care for someone going through this, it is heartbreaking and hard to watch a loved one suffer. But with good support groups and knowledge, it makes it a little easier to gain hope and strength. So, here I am sharing my story and asking others to comment and discuss. If this reaches at least one person then I know that my time has been well spent.

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47 Responses to “Hello. Sphincter of Oddi Dysfunction and Pancreatitis. Here’s my story so far…”

  1. Meghan C. Says:
    January 5th, 2011 at 4:57 am

    Julie,

    Love you girl. I look forward to following your new blog and learning more from you and others!

    Love,
    Meghan

  2. Burton H Says:
    January 15th, 2011 at 11:04 pm

    A helpful blog post, I just given this onto a friend who was doing a little research on that.

  3. Cristie Says:
    January 22nd, 2011 at 1:23 am

    I wrote & submitted a comment a few hours ago but am not seeing it yet. Am I responding correctly ?

  4. Julieb Says:
    January 22nd, 2011 at 3:01 pm

    Hi Cristie.

    I have to approve all comments before they are posted. I didn’t see where you commented before. Please post again. Would love to hear from you.

    Thanks.
    Julie

  5. Cristie Says:
    January 22nd, 2011 at 11:21 pm

    Me again, sure hope this one goes through but I will make it a bit shorter just in case it doesn’t. I can’t even remember what I last wrote except I was wondering Julie if you are planning on getting the tp/iat
    by Dr. Sutherland and if you are planning on seeing both he and Freeman at your February appointment?

    I’m also wondering what is meant by narrowed ducts in your pancreas?
    Is he talking about your pancreatic duct? Were you diagnosed cp via
    ERCP ? EUS? How many criteriae did they say you had for diagnosing cp? Have any of your sphincterotomy’s worked and did Dr.
    Cotton or Sherman do them ? Are you taking pancreatic enzymes ?
    ZenPep? If so, what strength and how many? I have experienced many of the symptoms you’ve already mentioned except I haven’t had an ablation although it has been discussed.

    Quick history on myself: ERCP in Jan 2002 because of hugely dilated cbd found to be just that-dilated, but the idiot was a jr, didn’t do a sphincterotomy and I got post-ercp AP ( nearly killed me ). That took a looong time to recover but didn’t have another AP episode until Oct 2006, then again in April 07. I had my gallbladder removed in Dec 06 which made my symptoms waaaaay worse, lost over 100 lb in one
    year and scheduled for tp/iat 3X until I started enzymes WHICH SAVED MY LIFE. I had ercp w/sphincterotomy in Feb 09 by Dr. Freeman at U of M and although I’ve had “bad” times, I’ve managed to stay out of hospital and survive by taking my enzymes and eating well,
    i.e. very little – have managed to put on 20 lb or so and am doing a pretty good job at maintaining it. The End.

    Would be interested in anymore info you care to post and I’m always looking for ways to feel better.

    Kind regards,
    Cristie

  6. Julieb Says:
    January 23rd, 2011 at 1:11 am

    Hi Cristie.

    I’m heading to see Dr. Sutherland and Dr. Freeman on Feb. 7. I will have blood work done and another EUS. Dr. Cotton has been my doctor for SOD. I just saw him Dec. 15. and he thought that my pancreatic duct was scarred over. But when I woke up he said it was not. He believes that the ducts within my pancreas are narrow (and not allowing for my enzymes to leave which is causing all the inflammation – they are slowly eating my pancreas). I take Zenpep at 20,000 (two pills with each meal). Dr. Cotton is the one who suggested having the TP-AIT based on my symptoms. My last EUS a year ago was normal. The team at MN don’t think that there is enough proof yet and feel I should have a few more tests done. So, that’s why I’m going there in Feb.

    My surgeon that took out my gallbladder told me that my bile ducts were narrow. He said he tried to look at them but he couldn’t get in there since they were too tight. After my gallbladder I got SOD. Then had my first ERCP where they cleaned out a ton of sludge and had to use something to stretch my ducts some. I threw up bile for hours after that. But it seemed to help for some time.

    The doctors haven’t really come out to my face and said that it is CP for sure. But I have had about five doctors write it down as Acute CP and they tell me that they believe that it has become chronic. The fact that I was getting it 2-3 times a month was one thing, and now it can last up to three or four months. It’s weird, so that is why they claim it is CP. All I know is that my pancreas hates me.

    Do you get the right arm pain? I can always tell when it’s about to get bad based on that. First the arm, then chills, then comes the really bad pain where I can’t stand.

    I’m really glad the enzymes are helping you. They are helping me some too. But the pain is still daily and I’m very tired on most days. What do you think about Dr. Freeman? I’ve heard great things. I’m glad you gained some weight back. I’m still having some weight loss – 5 pounds in a few days – but I’ve been able to get it back after drinking extra (low fat) protein shakes. I’m currently at 110 pounds. That is much better than the 95 pounds which I was a few years ago.

    Thanks for sharing your story.

    Julie

  7. Cristie Says:
    January 23rd, 2011 at 4:15 am

    Hi Julie,
    I’m wondering who referred you to Dr. Cotton because I’m sure you already know this but you were given at least one stroke of luck when whomever it was referred you. If I’m not mistaken, I believe he is the one who actually “created” the ercp.

    Interesting that the U of M doesn’t think you should have the tp/iat but I know they are stricter than they used to be, i.e.
    3-4 years ago when I was scheduled for the tp. I sincerely thank
    GOD for pancreatic enzymes even though they are 5X more expensive than before the FDA took them over :(

    How long have you been taking ZenPep ? That isn’t a very old enzyme is it ?

    We certainly do share similar issues don’t we ? I also went downhill after my lap chole ( lost the 100+ lbs ) yet Dr. Freeman told me that it needed to be done anyway. Interestingly enough,
    he told me that he could tell from my one and only ercp film (2002) that he could see the SOD I from that very film. I need to ask him more about that because I got so much worse immediately following the lap chole that it CAUSED the SOD?

    Did your gallbladder show any damage, stones or sludge? They did find 1 small stone in mine when I had it removed. I also had lotsa sludge removed during my ercp w/Dr. Freeman and he said
    that he could actually see my cbd shrink as he swept it with the
    balloon sweep. He also placed a stent in my pancreatic duct to
    hopefully prevent AP which it did ;0)

    Have you ever had a stent placed? I’m guessing not since I don’t remember you mentioning it and it sounds like you had a pretty
    bad case of AP following your ercp ( vomiting bile ). Also, maybe he can’t perform a stent because your ducts are too narrow, unlike me
    whose ducts are very large.

    DO I get right arm pain ? OMG DO I GET RIGHT ARM PAIN ! ! ! !!
    Really the pain radiates up/down to my very fingertips and also shoots straight through to my right shoulder and I didn’t really have this sort of pain until AFTER my lap chole. I usually get this pain after I’ve eaten something ( sometimes ANYTHING ) and almost ALWAYS with too much bending over. In fact, even slight exertion
    has and will cause an AP attack.

    My most feared symptom is BLOATING and it can come on with
    doing nothing and there is absolutely nothing I can do about it except grit my teeth and get through it. That’s usually when I bring my Tramadol out which sorta takes the edge off the pain and swelling.

    Are you sick every single day ? All day long ? How long again have you been taking enzymes ? It took a while to stop my weight loss,
    then even to gain it back.

    I wish you my very best when you go see Drs Freeman and Sutherland. Is it a “joint” consultation with them?

    I really like Dr. Freeman although he has a slightly “swollen” head himself – HAha! He deserves it though because he most definitely has given me a huge reprieve, will be 2 years February
    9th since my ercp w/sphincterotomy & stent. I never dreamed that I would actually allow another ercp since the 1st one nearly killed me and in fact he was surprised too because he knew how sick I was. He truly is an “expert” in ercp, just as I’ve heard Dr. Cotton is
    also.

    Did Dr. Cotton do your EUS? How long did it take for them (Dr. Cotton) to diagnose you with SOD? SOD I, II or III? Did Dr. Cotton
    think he saw the scarring via ercp or EUS?

    I have no way of knowing how sick you are because really only you know, just I hope that you don’t have to have the tp/iat just yet. It is such a HUGE procedure and your life will be forever changed. I’m sure that you know this, just felt like I should say it because I feel so very fortunate that I still have my pancreas – a most definite
    LOVE/HATE relationship. LOL

    Sending my very best,
    Cristie ;0)

  8. Julieb Says:
    January 23rd, 2011 at 5:44 am

    Hi Cristie.

    My local GI doctor referred me to Dr. Cotton. It was a big blessing. Yes, Dr. Cotton brought the idea of the ERCP back from Japan a while ago and made it what it is today. He is brilliant and a very humble and kind man. My local GI doctor is the one who preformed my first ERCP and the one who diagnosed me with SOD. He said that my ducts were so bad that I was actually on my deathbed. Having it done and getting all the sludge out saved my life. My gallbladder had no stones. We knew that was the case before we removed it. We just didn’t know what else to do since I was so ill. They did say that it was inflamed and they didn’t know why.

    M of N hasn’t really said that we aren’t doing the TP-AIT for sure. They said that Dr. Cotton is much respected and they really take that into consideration. I don’t want to rush it either and I want to make sure I do the right thing. I just know that my pain is not going to get better on its own and right now I don’t have many options. I could live like I am right now but I don’t know how many months or years I can continue doing this like I am. I feel like I’m hanging on.

    I’ve only been on Zenpep for a month. I took Creon a few years back but it made me sick. Zenpep is helping me with digesting fats. Still not helping with pain or nausea and my diet is a bit limited.

    I’ve only had the temporary stents they give you after an ERCP. It does help some with recovery. I vomited bile with my first ERCP and then my third one. But I even vomited bile two weeks before the third ERCP when I was hospitalized. My lipase levels weren’t that high, but I guess vomiting bile isn’t really a normal thing. I tell you what, it sure helped the swelling in my abdomen go down. I’m sure it’s only a matter of time that it returns.

    Yes, I’m sick every day. It feels like I am being kicked in my right rib just about every moment. But I’m thankful that I’m still able to go to work full time. I’m crazy like that. I love my job and it helps take my mind off things. I’m a graphic/web designer. I sit and it helps since I can lean forward at my desk and that helps ease the pain some. I rest on my lunch break and most days come home and sleep right after. I’m also an artist so the weekends I try to paint and draw. But I have many weeks were I’m too tired to do anything and I just sleep.

    I can’t believe that you get the right arm pain. I started getting it before I had my gallbladder removed. Starts at the shoulder and goes down to the fingers. Some days the pain in my arm is worse than the pain in my abdomen. The pain can last for weeks. I’m just glad that I’m left handed. The doctors at the ER never really seem to care much about it but boy does it hurt.
    How is your pain? Do you have it every day?
    Julie

  9. Julieb Says:
    January 23rd, 2011 at 6:11 am

    Hi Burton.

    Thanks for posting.

  10. Cristie Says:
    January 23rd, 2011 at 6:11 pm

    Okay Julie, here I am again on my many comments to yours ;0)
    It sounds like you are really in the throe’s of chronic/acute pancreatitis and I feel so bad for you because I can actually say that I feel your pain and it is AWFUL!

    Yes indeed-Y you are majorly blessed to have been referred to Dr. Cotton because the GI that I initially had messed me up big time
    and Dr. Freeman called what I had a “community” ercp ( someone not trained and either hardlyl ever does them or has never done one ).

    I’m on AROH probably more than any of the pancreatitis groups and I’ve known Priscilla for over 3 years – who is very kewl & very smart!!!!! I also had a JOINT consultation with Freeman and Sutherland and I thank God I did because that is when Dr. Freeman told me and my husband that he did not think I had cp but rather a classic SOD I. I of course did not believe him at the time but as I started feeling better I started believing him.

    I have almost always taking PancreaZE ( used to be called PancreaSe
    before the FDA took them over ). I tried ZenPep for 2-3 weeks when I couldn’t get my PancreaSe but they didn’t help as well as my tried and true’s so I started back on my PancreaZe when they came back on the market. I have known only a few who could take Creon
    because it mostly makes people sick :(

    I think I already said that I’ve had 2 ercp’s and just 1 sphincterotomy w/stent placement. My stent was temporary also as are most since it can cause a lot of damage if they can’t come out on their own or cause even more damage along the way.

    I am guessing they won’t do any further stenting on you since your ducts are small so it would be more difficult to place one and I’m not sure how small they can be. Dr. Freeman wanted to use one of
    his stents on me but he didn’t have one BIG enough so we are really, really opposite’s on that one – Ha!

    I am going to be very interested when you go to Minnesota and I’m
    hoping you will become more active on AROH. I’m not AROH’s marketing dept but it really is the best group around because of all the research she does and the support is totally tremendous, just we must get more people to post and share their experiences so we can learn even more. ( AROH was just started in Feb 10 and already has over 100 members with not more than 20% or so posting :( )

    Yes, I have pain every day but it is far more tolerable now than it was back in 2006 and 2007. I really hope the ZenPep gets to working better for you because I know that I sound like a broken record but I LOVE MY ENZYMES! Please REMEMBER I was scheduled by Dr. Sutherland 3X for the tp/iat and have been able to postpone it up to this point.

    Gotta go or I will get NOTHING done today and again, I hope you have a painTOLERANT one!
    Best,
    Cristie

  11. Julieb Says:
    January 23rd, 2011 at 11:36 pm

    It seems like my ducts are allowing bile to flow just fine and they aren’t that narrow anymore (maybe just inside my pancreas) and my openings aren’t scarred over (from the finding of my last ERCP). Dr. Cotton did find a strange loop close to the pancreatic duct opening but he said it wasn’t slowing things down. So, he doesn’t believe that the SOD is causing the problems now. Where as a year ago before my pancreatic sphincterotomy it was most definitely from SOD. But now the pain is in a different spot. Before it was mostly in the center part just under my ribs. Now it’s just a little sore there and my whole right side throbs with pain. It even wraps around to the back. so my entire right rib feels like it’s being kick and punched. On bad days it also starts to hurt on the left side some. It’s just like the same pain I had before my gallbladder came out and before I ever had SOD. It is so strange. But, I’m just glad I’m not getting those SOD spasms all the time like the past. I still have nightmares about those.

    Do you have a link to AROH? You can post it in a comment. I will check it out and even add it to my support list. The more we can connect, the better.

    Julie

  12. Cristie Says:
    January 24th, 2011 at 12:54 am

    Hello again ;)
    Has Dr. COtton ever mentioned pancreas divisum? I’m wondering since you mentioned having a “loop” outside your pancreatic duct ?
    Probably not, since I’m sure that Dr. Cotton would know what
    pancreas divisum looks like.

    I’ve never heard of having SOD, then NOT having it. Did he say you had SOD I, II or III? SOD I is what I have when pancreas & liver enzymes are raised And also dilated ducts & of course pain. SOD II is having only one of these symptoms and pain & SOD III is having no other symptoms than pain :( I would be very interested in hearing more about how the SOD went away, maybe ask Dr. Freeman when you see him ?

    I only feel pain in the middle when I’m having an acute AP attack although I do feel it mildly at times if the food I ate just decided not to agree with me. When I do get my mild attacks though I feel it up and under my right breast, piercing straight through to my back.
    but most of my pain is in my right scapular region in my back and I feel it more as a very deep ache.

    And yep, my back scapular pain is felt as if I still had my gallbladder :( :(

    Insofar as AROH, you’re already joined and you have the link up on your home page. lol My signature over “there” is gracie because we’ve had too many Kris, Christy’s, etc. and so I took back my gracie name so as not to confuse any newbie’s – Ha

    You posted that you were headed to Minnesota in February and wanted to know if anyone was going to be there then ? Not sure but the web group does seem to have a lot more going on there than is usual.

    Yup, the more we know, then the more we can educate our doctors because many of us know far more than our doctors – shocking I know but it’s the truth – RIDICULOUS !

    Talk later,
    C

  13. Julieb Says:
    January 24th, 2011 at 3:09 am

    Nope, he didn’t say anything about pancreas divisum. The duct is intact but it just loops in a spot where it should be straight. Maybe something I was born with. I guess I still have SOD but my pain and symptoms are not being caused by SOD anymore. He thinks it’s from a defect within the pancreas. I was never put into a SOD class. But I think I’m SOD II. My liver enzymes have been fine (maybe only three times at the beginning that they were slightly elevated. But the lipase always go up.)

    AROH is A Ray of Hope. I didn’t put the two together. I learned about the group from Judi’s “That Dang Sphincter of Oddi Again” comments page. She had over a thousand comment on that one posts. It helped me a great deal a few years back dealing with my SOD. I think she closed comments and took it down. Are you the same Gracie that was on there? And is Kris the same Kris from there as well?

    Julie

  14. Cristie Says:
    January 24th, 2011 at 3:36 am

    Dang, I was just posting a response and stupidly deleted it ;(;( So I will try to continue where I left off but since I also have mental hiccups from time to time, THAt will be difficult :(

    I’m still wondering how SOD can stop causing symptoms so I will be sure to make a note of it and do a bit more research;)

    It’s actually GOOD that you’ve had documented elevations of your pancreatic & liver enzymes so at least they couldn’t tell you it was ALL
    in your head, as so many must go through forever & ever. Personally I’ve never had to deal with that since it was very clear
    from the beginning that my post-ercp AP caused their elevations.

    Yup, I’m the same Gracie and Kris is Kris L from Minnesota. Kris is
    the SODCHAT group owner now since Judi Sohn from That Dang Sphincter of Oddi basically turned it over to her because I think she was just too busy to handle it.

    Much has been learned on many of these sites and I can only wish this whole smorgasboard was available when I first became “officially” sick :( The really wonderful thing is that newbie members are finding all of this, maybe not in the very beginnings of their illness but hopefully not years into it. As I said in a previous post, if only I had known and started enzymes in “that”
    beginning, I’m certain that my pancreas would be in better shape.
    Neither Dr. Sutherland in 2007 or Dr. Freeman in o8 prescribed
    them for me either, rather it was my local doc and I who started chatting
    about them and we figured it couldn’t hurt since I was losing weight so rapidly at that time.

    I’m going to hope and pray the ZenPep will help you more and more and if you don’t see a whole lot more improvement within the next month or so I would try another one (PancreaZe is the one I take)
    and give them some time also. I know that I sound like a totally broken record but my enzymes truly saved my pancreas – no question about that one.

    Hope you have a good nights sleep and don’t hesitate to ASK or ADD anything, here & elsewhere & at AROH – Ha !
    Hugs,
    C

  15. BOB Says:
    July 15th, 2011 at 4:25 pm

    WHERE CAN I GET THIS ZENPEP?

  16. juliebernal Says:
    August 15th, 2011 at 6:21 am

    Hi Bob. You can ask our doctor to write you a prescription for Zenpep.

  17. BOB Says:
    August 18th, 2011 at 5:03 pm

    I STARTED ZENPEP TEN DAYS AGO SO FAR SO GOOD. TWO WEEKS AGO I WANTED TO DIE FROM MY SPHINCTER OF ODDI DYSFUNTION. TODAY I FEEL PRETTY DARN GOOD. THANK YOU THANK YOU THANK YOU I HOPE IT LAST.

  18. juliebernal Says:
    August 19th, 2011 at 7:05 am

    Hi Bob. So glad that the Zenpep is helping you. I know it helped me with digestive issues and kept me from losing anymore weight. Many people take Creon, but I had bad side effects with it. For me, Zenpep has been a life-saver. I will keep you in my thoughts and I hope you stay well. SOD is such a hard disease to live with. Stay strong!

  19. KathyD Says:
    August 23rd, 2011 at 4:32 pm

    Hi Julie,

    Thank you for creating this site. My name is Kathy and my story begins in July of 2010 when I was having upper right quandrant pain that radiated into my back. It felt like a gaulbladder attack(only I haven’t had a gaulbladder since 2003). Anyway, after several ER visits and many, many different doctor visits I was finaly diagnosed with SOD in October. I had my ERCP & sphinterotomy , got post-pancreatitis and was hopitalized for a week. I had six months where I did well on a low fat diet. Then out of the no where, an attach hit me. Ihad the second sphintorotomy in May 2011 and continued to be sick throuhout the summer with spasms from the sphincter across my siomach, bloating & pain in my upper right side & back. I was on pain medications non stop & lost 50 lbs. My doctor did a procedure with a Botox injection into the sphincter. This did stop the spasm, however, I stared developing severe pain in the center of my stomach. Afer an emergency upper endoscopy, I found out that I now have five ulcers in addition to being bloated all the time, my right upper back is also swollen, I have difficulty going to the bathroom, pain in my side, stomach & back. I do not sleep well and I have days when I am very week & lethargic. I am currently taking Neurontin,Bentyl,Oxycodine, Omeprazole, Zinlori 75 & an ortho Biotic. Besides the bloating, do you have swelling in your upper right back as well as swelling in the middle of your chest near your splean?

    Again, thank you for this site and for utilizing your painful experiences to help others.

    Thanks,

    Kathy D.

  20. BOB Says:
    August 24th, 2011 at 11:22 pm

    HI JULIE, I AM STILL USING ZENPEP WITH SOME RELIEF BUT I AM STILL GETTING MY DAILY ATACKS. I HAVE TO TAKE IT AT AROUND NINE AT NIGHT AND THAT WAY IT DOSE NOT MAKE THE SPHINCTER MUSLE HURT. YOU SURE ARE RIGHT ABOUT SOD BEING SUCH A HARD DISEASE TO LIVE WITH. WHAT DO YOU KNOW ABOUT BOTOX INJECTIONS I HAVE READ GOOD AND BAD THINGS. I WILL NEVER GIVE UP, THANK YOU BOB

  21. juliebernal Says:
    August 27th, 2011 at 5:22 pm

    Wow Kathy! I feel for you! That’s no fun. SOD is such a hard disease. It’s like never knowing when it will strike and when it will ever go away. And, to top it off, it can lead to other health issues. My first suggestion would be, see if your doctor can order some labs to check your protein and pre-albumin levels. Not saying that this is what is causing it, but it could be and should be ruled out since you said you lost 50 lbs. If they come back low, it could mean you are malnourished. I did get swelling in my back. I had it happen I think three times. My whole body swelled. I would happen when I would be in the hospital and go days without eating. Very low levels is considered very dangerous. It pulls fluid from your organs and muscles. It can cause your kidneys to fail and it can cause death. It takes a lot of work to get those levels back up. I had to drink protein drinks and battled swelling for about four months. I believe heart, liver and lung issues can also cause swelling. I’m sure there are more but those are the few that I know about. Sometimes diuretics can be used to help pull some fluid out but it can also be very risky if you don’t know why you are getting the edema (swelling) in the first place. When i was in the hospital they were going to give me a diuretic because I was so swollen I had to be put on oxygen. I waited all day. The nurses kept saying that soon I could have the diuretic and it would help. But hours later the doctor came in and told me my pre-albumin levels were very low. He said I could NOT have the diuretic. He said since all my fluid was pulled from my organs, if they removed it I would go into kidney failure and my chance after that would not be good. WOW! I was shocked. My swelling was cause by malnutrition and the fact that my pancreas pretty much stopped releasing enzymes so it was like I was starving to death (my pancreas started to digest itself instead of my food). Has anyone said anything to you about a feeding tube or TPN? I’m sure the ulcers are playing some kind of factor into the picture too. With having SOD, you have to learn how to treat each and everything else that comes along with it, one step at a time. It sounds like you have a lot of inflammation throughout your body. When things get inflamed like that, there is no telling what will happen…weird things like the swelling. Hang in there. Don’t give up. Keep going to the doctor and keep looking for the reasons why this is happening. I will keep you in my thoughts. Please keep us posted.

  22. juliebernal Says:
    August 27th, 2011 at 5:37 pm

    Hi Bob. I’ve heard mixed reviews about Botox. The past few years many doctors have been really trying to push it in hopes that it will help. They used to do many sphincterotomies and and stents (the kind that stay in for three months at a time). I think they are thinking that this may help with the need for having that done. I know some people that have had over 30 ERCPs. Yikes. But overall – I was against having the Botox. A few years ago it was still a very new idea. It wasn’t out long enough to talk about the long term effects it could have. From my research I found that it is possible to have a reaction where the Botox can actually cause other areas in your GI track to freeze up and stop working. It is toxic – and yes some have it put in their face. If you read the fine print (which I did the other day) it said it can even cause death. Anyways, I didn’t want it because I tend to have bad reactions to many meds so I didn’t want to risk it. Once it’s in you, it’s there. Plus, I’ve heard from at least 3 people that said that it made the pain worse and didn’t help. Even if it does help, they say it only lasts for three months. So for me, I don’t like the idea. But I’ve heard that it does seem to help with the colon sphincter. But the sphincter of Oddi – I’m not sure. I haven’t talked to many that had it done. I think it is just up to the person and their symptoms. I believe that there are better options out there – but that’s just me. Bob, has anyone ever talked to you about TP/AIT (removing your pancreas and having the transplant)? I don’t really know your history, but if you are on pancreatic enzymes, I’m guessing you have pancreas issues as well. Sorry you are having daily attacks still. I used to be the same way. It’s no fun! Can you tell me more about your history? I would love to hear what you’ve been going through. Many thoughts to you.

  23. Jenn C Says:
    September 27th, 2011 at 2:45 pm

    I have been reading and looking up SOD. My issues started last year with pain and vomititng that lasted weeks ty especially after eating fatty meals. I was told my galllbladder was fine, but Sept 2010 i had it removed and the doctor said it was pruned up that she wasnt sure how everything would come back normal. Two weeks post op symotoms re-appeared. I am military so I finally got a referral to see an outside GI doctor who then diagnosed my SOD and performed a monometry in December. Now I am having the same symptoms worse and a reoccurance of pancreatitis. It is so dibilitating, and tiring, I cant even care for my children without feeling measarble. My fears and concerns i continue bringing up to my doctors is malnutrition, pancrease cancer or esophageal due to the constant vomiting. Narcotics dont work as well it either makes the pain worse… What else is there???

  24. juliebernal Says:
    September 27th, 2011 at 4:15 pm

    Hi Jenn. I’m so sorry to hear that you are going through this. I know it’s not easy and SOD is such a hard disease to manage. You had an ERCP, did they do a sphincterotomy on your common sphincter or pancreatic sphincter (or both)? Did they use Botox? Some have great results with the sphincterotomy and some relapse within months. Botox can help some for a few months, but I heard that for many it doesn’t help or makes it worst. Did your manometry come back normal or abnormal? If you had a sphincterotomy, then it could be that the sphicter scarred over. I believe the next step would be to do a repeat ERCP to see what’s going on and since you mentioned pancreatitis, I would suggest seeing if you can get an EUS (Endoscopic Ultrasound) to look at your pancreas and possibly an MRCP with secretin to see how well your pancreas is functioning. I’ve talked with many who suffered with SOD for 3-5 years before finally getting diagnosed with a pancreas disease. It’s better to treat it sooner than later. If it is the pancreas, there is a surgery and transplant that can be done – removing the whole pancreas and transplant the islet cells (which produce insulin) into the liver (TP/AIT). It’s a big surgery and takes a long road of recovery. But when a pancreas is sick, I believe it is best to remove it before it damages other organs, turns to cancer or ends up causing death. And like your gallbladder, the test showed that it was fine but when they removed it, it was hard. This can also happen with the pancreas. Sometimes the test results show that it is healthy, but many times when they go to remove it, they find that it is not. Now I’m not saying that this is for sure what is happening to you or that you will need the TP/AIT, but I do feel you should have your doctor look into the tests for you. You may need to go out of state to get these tests done. As far as pain medication, try to stay away from morphine and morphine based drugs. Morphine can cause the sphincter to contract which causes the pain to increase. Malnutrition is a big part of SOD and pancreatitis. Zofran can help with the nausea and if you get loose and floating stool, Zenpep (pancreatic enzyme) can help you digest food better. You can talk to your doctor about your options. If you feel you are dropping too much weight and can’t eat, a feeding tube (GJ Tube) would be a good option to help get nutrition. There is also a picc line (TPN) that they can give you. I wish I could say that there is an easy fix, or that things will get better on there own. But the truth is, it is a hard disease and it is not something that just gets better. Many doctors also just don’t understand enough about the disease. That is why it is important to go to the best doctors you can because they do understand. You have to fight, learn about treatment options and never give up. But please keep in mind, there is hope out there. My last ERCP showed that I didn’t have scarred over sphincters and now I no longer even have a sphincter of Oddi since I had it removed with the TP/AIT. I haven’t had a SOD attack since and I’m able to eat again pain free. So, there is hope out there. It just takes time. Many thoughts to you. Please keep me posted on your progress and hang in there.

  25. traci Says:
    October 6th, 2011 at 4:34 pm

    hello iam 40 years old and i have been living with this pain for the past 16 years i didnt know a thing about what is wrong with me until about two years ago. ive had serveral of those stomach attacks that led me striaght to the er. i cant take hardly any medicines but i do know when i have an attack if they give me a iv and give me 50 cc of demerayll it takes the pain away morphine just makes it worse but the doctors like to give me that when im in that much pain so know i just say im allergic so they wont give it to me.my life is so boring i cant do much cause increased activity makes my pain worse.iam in a research study know but i have had no luck. i know for years i thought i was the only one like this and the doctors try to make you think your crazy and this isnt that bad. but now i know there is more and i can tell everyone im not crazy or need attention. i have four children and having them was not near as hard as living with this. i feel and pray for the ones out there that have to live with this.

  26. juliebernal Says:
    October 7th, 2011 at 3:41 am

    Hi Traci.

    Thanks for commenting. I’m sorry you are going through this and living with pain. What kind of study where you in?

  27. shawn Says:
    November 10th, 2011 at 3:50 am

    glad i ran across ya site , i am 47 years old and have been living with the same pain as you all, i have been to countless doctors over the past 15 years , i have this pain in my right side that radiated to my back on the right side and under the shoulder blade , i finally had my gallbladder removed 4 years ago , the pain went away for about 2 months , then came back with a vengance.it use to be certain things i ate set it off but now it seems almost anything gets it going , this round i caught a stomach virus and it really got it going consant pain in the ribs , and liver area through to the back.i am to the point i am about to loose my mind , it is frustrating when ya doc says oh its nothing to worry about you need to use the bathroom more.he gave me ibudone and soma but they seem to make it worse.
    please if any suggestions i am open to anything.it feels like a constant pressure especially if i eat something spicy, of fatty

  28. juliebernal Says:
    November 15th, 2011 at 3:49 pm

    Hi Shawn. I’m sorry to hear that you are suffering. Have you had an ERCP done? Low fat diet is best and stay away from morphine and alcohol. Are you getting a bile burning pain, is it sharp? There are many things that could help. I’m not a doctor but you could talk to your doctor about a Hyoscyamine (helps sphincter spasms), Welchol (helps soak up extra bile which is used sometimes after gallbladder removal) and Zenpep pancreas enzymes (helps when you have light, floating stool).

  29. Tanzie Says:
    December 13th, 2011 at 4:56 am

    Hello All,

    I so was happy to come across this blog. I have been suffering with SOD III since 2003. The last doctor thought I was crazy because all my bloodwork and test was coming back normal at that point he just stamped me with IBS. I knew this was not true because I have had 3 ERCP’s, several medications and ER visits nothing is working. I finally found a doctor in DC and he stated there was no way I had IBS. I am so tried of getting false diagnos.

  30. juliebernal Says:
    December 14th, 2011 at 10:13 pm

    Hi Tanzie.

    SOD is such a hard disease. The problem is there is just not much awareness and many doctors don’t understand or know about SOD, they tend to jump to saying it is something that seems more common like IBS. For me they thought it was my gallbladder. They found no stones. But for you, based on the fact that you’ve had 3 ERCP’s it’s clearly not just IBS. The symptoms may sound like IBS but they are also the same symptoms as SOD and even pancreatitis. The best thing I can say is, try not to let a doctor here and there get you down. You did the right thing and went to see another doctor. I think most of us with SOD have been told by at least one doctor (or even more) that it was something else or even in our heads. There are great doctors and then there are other doctors who just don’t know better. You know your body better than anyone, trust what it tells you and don’t give up. I hope this new doctor in DC has a good plan of action to help you find some relief. My thoughts are with you.

    Julie

  31. BOB Says:
    December 31st, 2011 at 11:15 pm

    TO ALL, THIS IS HOW I CONTROL MY SPHINCTER OF ODDI DYSFUNCTION. AT 9:AM I TAKE TWO EXTRA STRENGTH TYLENOL EASY TABS AND A PROTON PUMP INHIBITOR SUCH AS OMEPRAZOLE OVER THE COUNTER GET THE ONE WITH OUT MAGNESIUM BECAUSE MAGNESIUM EVERYDAY WILL MAKE THE SPHINCTER MUSCLE HURT TAKE THESE WITH CRACKERS AND WATER. IF YOU CAN’T FIND TYLENOL USE THE WALMART EQUATE BRAND EXTRA STRENGTH ACETAMINOPHEN EASY TABS AND THEY COST LESS. AT 11:30 AM I TAKE ANOTHER EXTRA STRENGTH TYLENOL WITH CRACKERS AND WATER AND THEN AGAIN AT 1:30 PM I TAKE ONE MORE EXTRA STRENGTH TYLENOL WITH CRACKERS AND WATER. AT 330:PM I TAKE 5MG OF VICODIN WITH TWO CUPS OF DRY CHEERIOS AND WATER. IF YOU WANT YOU CAN SUPPLEMENT CHEERIOS WITH RICE KRISPIES OR ANOTHER CEREAL YOU PREFER. THE REASON I USE CEREAL LIKE CHEERIOS IS BECAUSE THEY ARE LIGHT AND THEY ARE GOOD FOR CHOLESTEROL AND THEY ABSORB AND THEY HAVE A GOOD VARIETY OF MINERALS IN THEM . AND THEN I HAVE A LIGHT DINNER AT AROUND FIVE PM. AND THEN AT 7:30 PM I TAKE ANOTHER 5MG OF VICODIN. YOU HAVE TO EAT VERY LIGHTLY DURING THE DAYTIME AND EAT LOTS OF CRACKERS WITH THESE PILLS.AND THEN YOU CAN EAT THE HEAVIER FOOD IN THE EVENING. STAY AWAY FROM GREASE, COFFEE, FATTY FOODS, CITRICS, ACIDS, PEANUT BUTTER, MAYONNAISE, FAST FOODS, AND ANYTHING THAT IS BAD FOR YOU. VITAMINS AND HERBS ARE CONCENTRATED SO THEY CAN MAKE THE SPHINCTER MUSCLE HURT AND UPSET YOUR STOMACH. SO TRY AND GET YOUR DAILY VITAMINS AND MINERALS FROM WHOLE FOODS. IF YOU HAVE TO HAVE CAFFEINE AS I DO YOU CAN GET A CAFFEINE PILL FROM WALGREENS CALLED STAY AWAKE UNDER THE WALGREENS BRAND. THIS WORKS WELL FOR ME. FAT FREE MILK ALSO WORKS WELL AT NIGHT BEFORE BED IT HELPS TO CALM AND COAT YOUR STOMACH. I ALSO USE TUMS AND A LITTLE ARM AND HAMMER BAKING SODA IN I LITTLE WARM WATER TO SETTLE MY STOMACH IF I EAT SOMETHING BAD AT NIGHT LIKE PIZZA. THE TRICK IS TO TAKE THE TYLENOL IN THE MOURNING AND AFTERNOON THIS KEEPS THE SPHINCTER MUSCLE RELAXED SO YOU CAN GET PAST THAT SO IMPORTANT TIME WHEN THE BILE IS RELEASED NATURALLY INTO YOUR STOMACH THAT HELPS YOU TO DIGEST YOUR FOOD. REMEMBER ONLY CRACKERS IN THE MOURNING AND EARLY AFTERNOON . AND THEN THE VICODIN IN THE LATE AFTERNOON AND EVENING. THE VICODIN IS VERY IMPORTANT BECAUSE THE TYLENOL ALONE IS NOT ENOUGH FOR THE PAIN THAT COMES IN THE EVENING. AND THE THE PROTON PUMP INHIBITOR IN THE MOURNING WITH THE CRACKERS IS ALSO VERY IMPORTANT BECAUSE IT NEUTRALIZES YOUR STOMACH . I HAVE HAD SPHINCTER OF ODDI DYSFUNCTION FOR ALMOST TWENTY YEARS. I HAD ERCP THREE TIMES WITH SPHINCTEROTOMY AND EACH TIME THE PAIN GOT WORSE. I GOT SO SICK THAT I WAS BELCHING RAW BILE EVERY DAY MY LIFE WAS UNLIVABLE UNTIL I LEARNED HOW TO MANAGE MY SPHINCTER OF ODDI DYSFUNCTION. DARVOCET WORKED FOR YEARS FOR ME BUT THEY TOOK IT OFF THE MARKET. THE GASTRO DOCTORS TOLD ME THERE WAS NOTHING MORE THAT THEY COULD DO FOR ME. I HAVE BEEN CONTROLLING MY SOD PAIN NOW FOR ALMOST FIVE MONTHS IN THE WAY I DESCRIBED ABOVE. I KNOW THAT THIS MAY NOT WORK FOR ALL AND MAYBE SOME MAY NOT BE ABLE TO TAKE THESE MEDICATIONS. BUT ITS WORTH A TRY, IF I AM ABLE TO HELP JUST ONE PERSON THAT MEANS THAT I HAVE BEEN ABLE TO HELP SOME ONE WITH THIS HIDE0US DISEASE WE SHARE. THANK YOU FOUR YOUR TIME AND DON’T EVER GIVE UP THIS IS VERY IMPORTANT TO ME. ALSO WHEN TRYING ANY NEW PLANS OR MEDICATIONS YOU SHOULD ALWAYS CONSULT YOUR DOCTOR FIRST. SINCERELY YOURS BOB AND THANK YOU JULIE FOR THIS WONDERFUL SITE WHERE WE CAN CONNECT AND SHARE.

  32. juliebernal Says:
    January 2nd, 2012 at 10:14 pm

    Thanks for sharing Bob. I totally agree with the foods to stay away from. Have you tried the gummy vitamins? Those sometimes help some people with SOD. I also could never take the normal vitamins. Would also like to suggest Levsin for GI spasms. I used to take it 5 times a day with my SOD. With any of the medications it’s important to discuss a plan of action with your doctor. Like Bob said, it may not be right for everyone, but sharing with each other is a great way to learn what works for some. Most pain medications (even Tylenol) can cause damage to the liver, intestines, colon or can cause constipation. And on the other hand, controlling pain is important. So just be aware of any new symptoms or signs. Again, thank you Bob for taking the time to share what works for you.
    :)
    Julie

  33. BOB Says:
    January 26th, 2012 at 6:15 pm

    HELLO JULIE, I BRUISED MY HIP ON CHRISTMAS DAY AND THE PAIN WAS SO BAD I COULD NOT SLEEP OR WALK. SO AFTER TWO WEEKS OF THIS PAIN I STARTED TAKING ALEIVE. THIS RELIEVED THE PAIN BUT AFTER A WEEK OF TAKING ALEIVE I STARTED GETTING RAW BILE IN MY GUT AGAIN. SO MY PLAN FOR CONTROLLING MY SOD DID NOT FAIL ME I FAILED IT. I WAS VERY SICK FOR ABOUT A WEEK UNTIL I GOT BACK TO MY HOW I CONTROL MY SPHINCTER OF ODDI SYSTEM AND THANK GOD I AM GOOD TO GO AGAIN. I READ BLOGS ON SOD SITES EVERY DAY AND IT AMAZES ME HOW MANY NEW AND OLD STORIES I READ . I HOPE YOU ARE FEELING GOOD TODAY JULIE. BOB

  34. Heidi Says:
    February 29th, 2012 at 10:22 pm

    Thank you for sharing. Your blog & comments have helped me better understand what my brother goes through. God bless you all and good luck as you make your way through life with affliction.

  35. juliebernal Says:
    March 3rd, 2012 at 1:08 am

    thanks Heidi. Many thoughts to your brother, you and family.

    Julie B

  36. Michelle Says:
    March 21st, 2012 at 1:43 pm

    I am wondering if anyone has had any luck with bentyl? I get severe spasms and just need something to relax the sphincter when these attacks occur. My doctor chose to try bentyl over levsin. I had a sphincterotmy about 8 yrs ago and get random severe spasms which are getting more frequent :(

  37. Angie Says:
    May 22nd, 2013 at 1:03 am

    I’m a 37 yr old female who has been battling with SOD for 6 yrs or longer..I am at my wits end..I have had 4 ercp with Sphincter of Oddi Manometry.also ERS, .My last

  38. Carolyn Says:
    July 24th, 2013 at 5:34 am

    I am a 46 year old female who got a diagnosis of SOD just yesterday. Been having pain since having my gallbladder out 8 months ago, glad to finally know what it is so I know what I’m up against. Thank you so much for your blog and YouTube videos; they made me feel less alone in this. No one I know even knows what this is much less has any experience with it or can really understand what the last 8 months have been like for me. Everyone keeps telling me how great I look because of the lost weight and I don’t know how to react. If I’m honest it leads to a discussion of my medical condition which I don’t want to have and just smiling and saying thanks doesn’t work because then they ask me how I’ve done it and we’re back to my medical condition territory again! :) Still working, trying to enjoy my life and my family but wearing down from the chronic pain. Anyway, didn’t mean to write all that, just wanted to thank you for this resource you’ve created. Carolyn

  39. juliebernal Says:
    July 28th, 2013 at 7:47 am

    Hi Carolyn. Thanks for reaching out to me. I am so sorry you have SOD. It’s not easy being sick and feeling alone and trying to understand it, explain it and cope all at the same time. I felt the same way. I did some reading on SOD after learning I had it, and I found that there are many of us out there suffering from SOD. It really helped me too when connecting with others. I am so happy my story has helped you feel less alone. I hope you have found a good team of doctors. There are many different treatment options out there. And everyone’s case is different, but it’s good that you at least know what is going on now. And hopefully you and your doctors can find something to help with the pain. Please feel free to share your story and history. I would love to hear more. – Julie B.

  40. Kathy P. Says:
    August 7th, 2013 at 8:17 pm

    I’m glad To know others are out there like me. This condition worries me. Appt. with a specialist at end of this month. I hope for some good news on some kind of treatment. Kathy

  41. juliebernal Says:
    August 9th, 2013 at 2:48 am

    Kathy, you are not alone. There are many of us. I am so sorry you are suffering. I hope everything goes well with your appointment. Sending good thoughts your way. Keep me posted on how it goes. – Julie B.

  42. Megan Says:
    December 5th, 2013 at 2:26 am

    your story was like reading a story of my life the past few months. My SOD started after I had my gallbladder out and I’ve since had two ercps and I biliary sphincterotomy. my last visit they started questioning my pancreas. I’m still learning how to live and deal with all this, it has changed so much with me so far, I look forward to following your story and seeing our comparisons.

    -Megan

  43. sandy Says:
    February 4th, 2014 at 12:07 am

    Hi… I was wondering if this blog was still current. I’ve had type 1 sod for 8 years. I could go on and on about it all, but what I’m not seeing is why no one has been told to take a nitro pill to stop the pain…? I have alot to talk about and would like to if this blog is still active.
    Thanks, sandy

  44. Gail Says:
    February 5th, 2014 at 7:42 pm

    Has anyone found that you have more SOD attacks near or during menstration? I’ve also get attacks if I take ibuprofen or asprin. My doctor prescribed Levsin .125 sublingual for the attacks. It helps reduce the time they last. They were lasting up to 9 hours, now usually 2 hours. I have chronic right shoulder and arm pain too and always tired. I have elected not to have a sphicterotomy since they were wrong to take out my gallbladder which had no stones so why should I trust them on the sphicterotomy? My attacks have decreased by not taking any ibuprofen or asprin, but I live with constant shoulder and arm pain. Any advice appreciated.

  45. Gail Says:
    February 5th, 2014 at 7:47 pm

    To Michele regarding taking bentyl. I have had no luck with bentyl, in fact I take bentyl for menstrual cramps since ibuprofen and asprin will bring on my SOD and I actually have more SOD attacks while taking bentyl. Levsin when having an attack taken SL has helped. Most times I must take 2-3 .125 doses.

  46. Kathy P. Says:
    February 9th, 2014 at 6:36 am

    I had a ercp in Oct. the most the Dr. Could tell me is I had a narrow bile duct. I felt better for about three weeks the went back to having problems with pain , bloating and when I bend forward I can feel the swelling it’s like a rope across my upper stomach area that feels like it’s treating and rolling. It must be swollen and the pain radiates. What seems to help is walking daily and limiting the bread and dairy products.

  47. Gail Says:
    February 22nd, 2014 at 2:31 pm

    Hi Sandy, I’m interested in what you have to say about the nitro pills. I was prescribed nitrolingual spray, but it is very expensive. It doesn’t help that much and causes me to get a severe headache which makes me non functional so I don’t use it much unless the Levsin doesn’t work after 3 doses and the pain is going on more than 2-3 hours then I try the spray. Do you notice more SOD attacks near your period?

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