Does anyone with sphincter of oddi dysfunction have any issues withy hypoglycemia or type two diabetes? I have had all the symptoms of SOD and I am going in to get checked for it. I have the pain, nausea, elevated liver enzymes, back pain, etc. I have been misdiagnosed with everything everyone else has... IBS, gaul bladder disease, pancreatitus (pancreatitis), acid reflux, I have been told I was faking it for attention, asked if I had broken ribs... This has been going on for five years, I doubt it's broken ribs!! They insisted on x-rays though. All my symptoms started after being hit by a car. Everything comes back normal on tests except my liver enzymes. I am really hoping it's this SOD... I just want to know what's causing this and that I am not crazy. It's good to know I am not alone. But I was wondering if anyone who has been diagnosed with SOD has also had problems with hypoglycemia or diabetes? My blood sugar freaks out all the time and they have no idea why. They have done all the test and they can't figure out what is causing my blood sugar to do this. Some days it will drop down to the 40s if I don't eat every two or three hours. And sometimes it's gets really, really high when I haven't eaten for half the day. Sometimes when I go in they say I have hypoglycemia. Other times they think it's diabetes. They say that it's hypoglycemia and my pancreas is shutting down, and I will have diabetes soon. But they have not evidence for that other than my blood glucose being out of wack. And I know with SOD your bile can end up in your pancreas and cause problems. So I am wondering if maybe that is what is causing it? Any ideas?
I probably won't be much help...calgal knows quite a bit about the SOD situation.
Well I don't have it either but I did think I had SOD at one point earlier this year, I demanded to have a MRI (MRCP) which was negative.. I think based on your symptoms you probably are on the correct path.
The pancrease if I remember right when has problems can easily cause diabetes and such like you're having so yes you can be hypogylicemia with a sick pancrease. Basically the pancrease is backing up in pressure, and the enzymes inside the pancrease are eating the organ along with liver bile causing you to be really sick. There is a blood test to confirm pancreatitis of some sort but sometimes after the damage has been done the test will show a false negative. Only accurate usually during acute phases of pancreatitis.
The problem is what is causing it..it is a stone that is stuck or is it a sphincter or oddi dysfunction? Your blood tests suggest you have some sort of blockage for some reason and you're pretty young to have a stone (it's possible..) so most likely you need some imaging to rule out a stone (MRI/ultrasound) and then most likely you'll need a ERCP with mamomtry (and I know I spelled that wrong). ERCP's are preeeetty risky..and only should be done by someone who knows what they're doing and has done many ERCP's. I've heard the majority of people doing the procedure get really sick..like ER room sick. But not always. Doctors avoid doing ERCP's unless they really have to, but If you need one I would go to a ERCP specialist that only does those.
There are usually a few ways to treat it, either by placing a stent and doing multiple endoscopes with stents trying to train the muscle and stretch it ..or just cut the muscle and let it stay open (that is if it's not a stone). If it's a stone it needs to be removed..you didn't mention your gallbladder function..hopefully you've done a HIDA scan making sure that's working ok. As one system goes downhill..so does another.. gallbladder can cause a ton of problems like sludge and such that can cause blockage. It's good to rule out stones and gallbladder before you do ERCP but since you're blood levels are all over the place you want to hurry on this and keep pushing.
I'm not sure on diet but i'm guessing you'd want to avoid heavy sugar things that make your pancrease work..maybe take digestive enzymes to help take pressure off your digestive system but i'd ask you GI specalist for advice on that first...but for sure don't delay on that.. you don't want diabetes or lose a pancrease because you sat around too long. Hang in there..:S
also just thinking out loud..sometimes severe ulcers can cause pancreatitis pain and actually work their way into the pancrease...since you got in a car accident your stomach valve or something might be messed up and you might have bile or something backing up so that's another possibility. That would be ruled on via endoscope but you might have some damage to either the bile duct or stomach valve....it was your right side right? 5 years is a long time..and if you had pancrease issues starting 5 years ago you'd have a LOT of damage done.. so i'm sort of thinking there might be some stomach issue working into your pancrease. Something is blocking your bile duct that's for sure, and it could be just inflammation. Either way an MRCP then endoscope if negative then/ERCP would probably be best.
I have had four scopes and two MRCPs. I had ulcers five years ago, but they got rid of them and they haven't come back. They thought that was what was causing my pain but it's still there. I have done a hidascan twice and both times it came back normal. The doctor I was seeing told me he wanted to take my gaul bladder out "just in case." This was after he told me that maybe it was all in my head. So I was pretty pist and told him no way, we weren't taking out organs "just to see." After that he told me he wanted to put a stent in my common bile duct, but at this point I wasn't even listening to this guy. He couldn't find anythig wrong with my bile duct either, he just wanted me to be a lab rat. But the hypoglycemia/diabetes wasn't diagnosed until after I stopped seeing that guy so he doesn't know that's a symptom. The only problem now is I go to a new doctor and they won't really even talk to me. They just look through my six inch stack of paper work that they have faxed from my previous doctor and just assume I am faking so they won't even try to diagnose me, they will only test for things if I come up with it myself and tell them to. The last doctor I went to probably couldn't even tell you where my pain is or things I do to relieve it or anything, just simple basic things like that, because she wouldn't even listen to me. She didn't even look at me, she just kept saying "uh huh, uh huh." And she was only in the room for five minutes. I asked her to test for AIP (acute intermittent porphyria) because at the time that was the only idea I had come up with. She tested for it, called back and said it was negative, and when I asked where we go from there she said, "I don't know." I am kind of running out of options and don't know what to do. It's tempting to go back to my old doctor, but at the same time it scares the hell out of me to go to some guy who is ready to yank organs just to see. I'm stuck.
It's the normal CalGal she seems to know a ton about the ERCP procedure (i'm not sure if she had one herself or not but she always posts a lot about it)
well.. i'm not a doctor but looking at your symptoms if your liver enzyme levels are eleveted *right now* and you're having pain on your upper right quadrent, and you had your gall bladder removed and now your blood sugar levels are going all over the place I would suggest either going to a ERCP specialist to talk about doing a stent like your doctor said/surgery on that valve but I think stent is best because you don't know for sure if it's the bile duct (usually on a MRCP it would show the bile duct swollen because of the back pressure..course it might have relaxed.. you have to catch it in pain during a MRCP..basically you have to catch it while you're under an attack..)
so yeah I would be worried getting diabetes because you sat around too long, hopefully you're under your parents insurance because once you get in my shoes you're pretty much stuck wishing you could get tested but can't afford it so be careful :)
either i'd rush off to a new GI or just go straight to a ERCP specialist in your state or ask your current GI if you can go to a specialist (since you don't like him) and i'm not a doctor in no way but with those symptoms i'd be thinking about a stent in the bile duct to relieve pressure off your liver/pancrease (unless you've been drinking and hitting asprin a lot and have fatty liver but imaging would have shown that..)
hi! im thinking i might have SOD too. I had my gall bladder removed a year ago and fragments of my gall bladder and stones removed 6 weeks ago. I'm still having pain where my gall bladder used to be, im extremely nauseous all the time and i have reflux. I have low blood sugar but I havent been diagnosed with diabetes or hypoglycemia.
people have told me that its a psychological problem or some bs because they cant figure out whats wrong with me. i know its SOOOO frustrating! i have a rediculously enormous stack of charts, labs and paperwork too its so annoying.
I'm going to a new GI doctor friday and im going to ask about SOD ill let you know what she says in case its helpful to your problems too!
Thank you!! I would really appreciate hearing what they have to say.
I know how you feel and it drives me crazy!! I haven't had my gaul bladder removed. The doctor told me he wanted to "just to see if it would help" and I told him now. He wasn't taking out my organs as an experiment. I am now very glad I told him no, I was starting to doubt myself and considering going back and telling him to give it a shot. I don't really know what to do anymore. I have kind of given up. I think I might find a new doc and get checked for SOD though. I really don't want diabetes!! I HATE needles!!
So my doctor doesn't think I have sod and doesn't want to do an ercp to test for it. She told me SOD is usually what doctors diagnose patients with as a last resort when they dont know what else to do. She ordered a bunch of blood tests but I haven't gotton the results yet. She thinks I have diabetes insipidus. Have you heard of that? It basically involves being really thirsty constantly, drinking water all the time and peeing way more than normal. My dr also thinks I might have pots and a motility problem. I have more appointments with an endocrinologist and a cardiologist next week and ill let you know when I get the blood test results!
I was diagnosed with SOD after almost 2 yrs of RUQ pain, first being told I had gastroparesis, gallbladder was taken out in 2000. I have had an ERCP after all other tests were negative. It was positive for the SOD,had a sphincterotomy, and then was still having pain ,went back and on an old MRI they noticed I had Pancreas Divisim and put a stent in. Well here I am still in pain and no answers. I feel your pain. My understanding is that SOD can be fixed but most of the time is only a temporary fix. Had problems with my blood sugar dropping way before any of these issues started, so not sure what that may be about. The only time I had an increased blood sugar level was in 1997 during my last pregnancy and was diagnosed with gestational diabetes. Hope this info may halp you. Sorry I can't offer more.
I know how you feel. I have the same pains in my URQ that radiates to my back for over 10 years. I was told everything from being gluten intolerant to IBS to one doc saying I should get my head examined becuase there was nothing physically wrong with me. I went to 3 family doctors until said before I found someone who believed me. I have had all the test done ( CT, MRCP, Blood test, Ultrasounds, upper gi, small bowels test, scope test. ) All of these test came back normal. I was sent to have my gallbladder removed but they we removed it on pain alone he sent me to a GI dotor to get my bile ducts checked. When they did an ERCP cut openthe duct & placed a stent. They then took it out a week later. I was ok for 1 year ( almost to the day ) & had to have another one done. they did the same thing but this time I had acute pancreatitis. After this I was good for just over 2 years Had it done for the 3rd time but this time they just cut & no stent. I was ok until november of last year. I saw my doc. in Feb & said if it's not any better in 1 month all to schedule another ERCP. I got scared & went for a second opinion. This was such a mistake. I went to a great hospital to get their opinion & they said the ERCP is not ness. & I do not have SOD. Instead he said I have IBS & sent me to the fuctional GI departmnet at the Unvirsity of Michigan. So I was excited because I though I was getting somewhere. They told me I had fuctional abdomnal (abdominal) pain. Which really mean they don't know why the pain is there. The gave me some anti spasmatiic meds & anti depressants ( nortriplyne ) which I had to stop because it made me dizzy & I found out from my family doctor it was causing blockage to my heart. So we tried another antidepressant and desided to stay with my first doc. since he is the best in his feild & I did get relieve each time. I was comfirmed I do have SOD III ( which pain is the only sign ) SO here I am now 4 month after I could have had the ERCP done & be feeling great now, I can't eat barley anything if you are looking for a group to discuss SOD with try tis link. http://health.groups.yahoo.com/group/Sphincterofoddi_pancreatitis They are wonderful & so is Calgal. She helped me alot! Please keep us posted. And agian sorry for my LONG post.
Thank you for your story :) I have been told all those same things: gluten intolerant and also celiacs, IBS, etc. They put me on the antispasmodic meds, they tried the antidepressants and they made me crazy. I was blacking out and hallucinating. It's all been a terrible experience. Thank you for the website, I will give that a shot!!
after i reading your post about the gastro doc at University of Michigan, i can identify with your story as i have had a very similar experience. I currently have a gastro doc who basically isn't interested in investigating my 'SOD' symptoms. I live in Michigan myself and have been looking for a couple of years for a doc who might be knowledgeable. I assume you are also in Michigan hope you can share the the name of your own gastro who also might be of better help to me than my current doc! good luck to you with this frustrating condition!
Don't know if my story will help or not... I've been diagnosed with both SOD and Pancreatic Sphincter Dysfunction, and had sphincterotomies done on both ducts. I had symptoms similar to yours before my diagnoses, and also the ensuing round of musical doctors and better or worse treatment. I'm still working on my problem, still having pain and trying to get it cleared up, but after each surgery it has gotten better, and I've been able to eat more. Also, I just recently switched family doctors because I've moved, and had a physical done with the blood test where you fast before they test you, and this doctor tells me that I'm pre-diabetic, so in some sense, I can connect with you where you are as far as both blood sugar problems (though it sounds like mine aren't quite so severe) and also abdominal pain. My gastroenterologist, however, says that the pre-diabetes shouldn't play into my problems with abdominal pain too much.
As far as your problems with pain and misdiagnosis go, I would really recommend looking into getting a referral to a larger research hospital. I've found that, unless you're in an area where there might be a doctor at a gastroenterology group who has specific experience with these types of disorders, almost no one will understand what you're going through. Most of the time I end up educating my doctors about these disorders rather than the other way around. If your gastroenterologist or primary practitioner is unwilling to refer you to a research hospital, you might want to contact one directly. Most will have a "back door" of sorts through which you'll be able to get in. It may mean more work for you - you'll have to do the work of putting together your medical records and talking to your insurance company rather than having your referring doctor do it, and it might get sticky, too, as far as insurance coverage without a referral, but it may be your only option as far as finding someone who will listen to you and take you seriously. A research hospital will be very thorough with you about your symptoms and will generally not discount your experiences, as it sounds like most of your previous doctors have done. Most of them are this way simply because these disorders are so very rare and misunderstood - you just need to find someone who understands them.
Unfortunately, once you are in, the invasive ERCP may be your best course of action as far as getting definitive results. Just because they go in to measure doesn't necessarily mean that they'll go into cut. I had two separate surgeries done through ERCP with no complications, and I was considered a high risk for pancreatitis. The second surgery was extensive - I had sphincterotomies done on both the pancreatic sphincter and the Sphincter of Oddi, manometries taken in both ducts, and a stent put into my pancreatic duct. So duration of procedure and the amount of work that's done will not necessarily determine whether or not you'll have complications. That being said, I do have to qualify this by saying that I HAVE had pancreatitis subsequent to these procedures, as a complication of having the stent removed, but just want you to know that the ERCP itself is not a guarantee that you will get sick.
I don't know if any of this helps, but I hope maybe my experiences can point you in the right direction. Please feel free to ask any other questions you may have.
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