I need help Anybody out there with Sphincter of the Oddi
Please someone with this problem answer my questions:
I have not been tested for Sphincter of the oddi dysfunction but it is pointing towards that direction. I had my galbladder removed Sept 2008 never had any problems until maybe 3 months after the surgery. I would get this mild nausea attack with tightening around the waist plus belching. This would happen with meals or no meals. It was like I was sick to my stomach. Never enough to put me in the hospital. When I wasn't going through the nausea I would feel a slight pain in the upper right rib area. The pain in the upper right rib area would only be relieved if I sat down it was like a muscle ache. I was tested for everything by a gastro doctor and all they found was mild non specific gastritis.
I recently went to my main doctor who tested my blood and my alt was 75 slightly elevated. So I felt good for two months because I started to take Welchol for the bile absorption. I was eating right and losing weight. I exercise, take vitamins, see an acupuncturist, and I don't drink nor smoke. I eat the blandest diet you could think of and I am fine with that.
My question is:
What if you don't want the ERCP and you use the pain killers and anti nausea medicine will it be dangerous if your liver enzymes stay slightly elevated??
Is this disease fatal??
Can people live normal lives?
Did anyone's improve?
How do you feel when the attack comes? Mine doesn't make me go to the hospital as some has described??
Is your life miserable??
Will this disease get worse for me? or is everyone different??
Like today I noticed my first urine of the day was dark yellow?? and my stool was light tan and floats?? I don't know if that was the Vitamin B I took a couple of days ago or I am not drinking alot of water?
I just feel like a mess right now - how could a gallbladder surgery mess up a healthy 42 year old person up. Now I feel like I can't do anything, I am depressed and can't do what I like to anymore. I feel like someone messed me up. My anxiety has come back because I never know when I am going to get the nausea feeling. I now have to take acid reflux medicine because I was belching like crazy and acid was coming up in my throat. I can never sit down in a restaurant and enjoy a meal with my family - I am too afraid to eat. No one understands how I feel. I feel like I am going to eventually die because my insides are messed up and not working properly.
Re: I need help Anybody out there with Sphincter of the Oddi
I get horrible reflux which is bile..I had my gallbadder removed 16 years ago and got pancreatitis....two years ago it came back and had to have ERCP which made my bile reflux intolerable....I am now on colestipol...they say it take 2 to three months to kick in. so far still terrible I started the med. march 5th along with nexium 2 times a day.
Re: I need help Anybody out there with Sphincter of the Oddi
gigi11 I really feel your pain in many ways. I have not been diagnosed with SOD - yet , although I have many symptoms that mirror yours. I had acute pancreatitis and gall bladder surgery as a result 1/7 of this year. As well as an ERCP to get the last gall stone and remaining gall stone sludge the day after GB surgery. My eating habits have changed significantly - and I've lost weight - a bonus, but what a way to do it.
I refuse to let this experience that is ongoing and from the sound of it, maybe a life long journey - get the best of me. I am determined to enjoy my times out with family, even if the only thing I can eat is jello.
I mean really. Life is more than food and I love to eat and am a wonderful cook - according to family and friends. That is all sidelined for the time being. Many other things going on in my personal life to focus solely on me. Although to be honest, I 'd like to get to the bottom of this, the new me , the body I no longer understand or can anticipate any longer - My spouse and I are unemployed at present and uninsured - getting to the bottom of anything will only occur if there is an emergency - otherwise I will just have to do the best I can with minimal medical information. I'll eventually get it sorted out - I hope that the damage is minimal or at best, only in my head. As with many of us on these boards - this isn't my only issue, but since it is the most recent is the one that looms before me.
I hope you get answers and can find it within yourself to keep on asking until you do get the answers you seek.
Rose
Re: I need help Anybody out there with Sphincter of the Oddi
Thanks for your reply. There has to be an answer for all this - I had no clue people suffer like this when they have there gallbladder taken out. Some people no problems but there seems to be more of us that do have problems. These doctors advised us to get our gallbladder removed and then left us with a mess that can't be solved.
This is how my days are:
I may get up feeling good in the morning and I homeschool my kids and take them to there activities but after my lunch that nausea pain may strike so I have to sit down or walk around to get the gas out. Sometimes I may go to the bathroom but no diarrehea.
I may have nausea in the morning before i even eat my breakfast. After that I am good to go for the rest of the day.
So it is about 5 hours of the day I am feeling really good but it strikes whenever it feels like. That is hard to deal with because my kids need me and everyone else does. I would never be able to hold a job.
Sometimes you know the pattern of the nausea and then it goes away for about two months and then all of the sudden it comes back appearing different maybe with different pain - so your so confused and you think it is worse and panic.
Mine seems to be more belching than anything else. I am not bent over in pain like I have read some people have problems. I guess that is coming next. This is just so depressing I can't plan trips because everywhere I go I need to know where the nearest hospital is so in I do have a real bad attack - can you imagine?
Re: I need help Anybody out there with Sphincter of the Oddi
Gigi,
I think you know most of my story, but I will try to answer these:
My question is:
What if you don't want the ERCP and you use the pain killers and anti nausea medicine will it be dangerous if your liver enzymes stay slightly elevated??
I dont know if it would be dangerous, but its probably not all that good. My liver enzymes were significantly elevated for ten years ( not slightly, but way up there) and Im still alive and kicking.
Is this disease fatal??
SOD itself? Never really heard that being fatal, but the pancreatitis associated with it can be.
Can people live normal lives?
Im uncertain how to answer this. Ive had a chronic neurological disease on top of the SOD, so "normal" for me is pretty hit and run. For the most part, my stomach would bother me then sort of go on a hiatus and not bother me at all for a few months. After ten years, it gave up and started hurting me every single day. A short month later, I was diagnosed and had the ERCP surgery. So I can say in that month... no, I wasnt living normally at all.
Did anyone's improve?
I am not having any symptoms since my pancreatic stent came out after my ercp. Its only been a month for me, but for this entire month, I havent woken up one single morning in pain. Thats good news.
How do you feel when the attack comes? Mine doesn't make me go to the hospital as some has described??
I had it for ten years- undiagnosed. In the beginning, there was pain. At the end, there was unbearable, I want to curl up in the fetal position ( and did), oh my lord I am going to die pain. Thats just me though.
Is your life miserable??
Nah. I feel cured in so many ways. Even the dizziness and odd neuro symptoms ( some of them) that followed me for years are gone.
Will this disease get worse for me? or is everyone different?? Everyone is different. Mine got worse. When my diagnosis came, my ercp was scheduled as an emergency ERCP. I had been in the hospital for five days throwing up bile, getting dehydrated regardless of IV fluids and day by day my liver enzymes either shot CLEAR back up or went way back down. I was very sick. My gastro doctor said one more attack like that would likely squander any chance of me NOT getting chronic pancreatitis, so I was an emergency Ercp.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by JodieK
Gigi,
I think you know most of my story, but I will try to answer these:
My question is:
What if you don't want the ERCP and you use the pain killers and anti nausea medicine will it be dangerous if your liver enzymes stay slightly elevated??
I dont know if it would be dangerous, but its probably not all that good. My liver enzymes were significantly elevated for ten years ( not slightly, but way up there) and Im still alive and kicking.
Is this disease fatal??
SOD itself? Never really heard that being fatal, but the pancreatitis associated with it can be.
Can people live normal lives?
Im uncertain how to answer this. Ive had a chronic neurological disease on top of the SOD, so "normal" for me is pretty hit and run. For the most part, my stomach would bother me then sort of go on a hiatus and not bother me at all for a few months. After ten years, it gave up and started hurting me every single day. A short month later, I was diagnosed and had the ERCP surgery. So I can say in that month... no, I wasnt living normally at all.
Did anyone's improve?
I am not having any symptoms since my pancreatic stent came out after my ercp. Its only been a month for me, but for this entire month, I havent woken up one single morning in pain. Thats good news.
How do you feel when the attack comes? Mine doesn't make me go to the hospital as some has described??
I had it for ten years- undiagnosed. In the beginning, there was pain. At the end, there was unbearable, I want to curl up in the fetal position ( and did), oh my lord I am going to die pain. Thats just me though.
Is your life miserable??
Nah. I feel cured in so many ways. Even the dizziness and odd neuro symptoms ( some of them) that followed me for years are gone.
Will this disease get worse for me? or is everyone different?? Everyone is different. Mine got worse. When my diagnosis came, my ercp was scheduled as an emergency ERCP. I had been in the hospital for five days throwing up bile, getting dehydrated regardless of IV fluids and day by day my liver enzymes either shot CLEAR back up or went way back down. I was very sick. My gastro doctor said one more attack like that would likely squander any chance of me NOT getting chronic pancreatitis, so I was an emergency Ercp.
I feel so depressed because I wonder if mine will get worse. I just have lots of gas that gets trapped in my stomach and some mild pain in the upper right rib area. I read one message board with about 50 people responding that they had the same problem with gas. Nothing over the counter works for the gas. Gas will sometimes get trapped in my stomach and cause nausea and relieved when I finally belch. I don't know if that is one of the sypmtoms of Sphinctor of the Oddi Dysfunction/// Gas just travels all over my body and causes pain and when you belch the feeling is gone. I am just full of air. My liver enzymes are slightly elevated and my recent blood test show they are still slightly elevated but they have come down from 75 to 65 because of my fatty liver. I think with Sphinctor they only go up after an attack and then come down. My triglicerides are up because of fatty liver. I no longer have pre diabetes. My overall cholesteral is normal.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by gigi11
Did you experience gas or just pain?
Gigi,
Everyone is different- but pain, just pain. I never really had nausea, burping, belching or anything like that. I've never been much of a burpy person in general though.
NOW, I can tell you that for the past two days ( started the other night actually) I keep getting a deep burning pain and alot of gas on the inside moving around causing pain. It just doesn't let up. Im kinda still suffering with it after taking all sorts of antacids and what not. The pain that it is causing is different from my sod pain though and this all came on after I ate two cupcakes lol.
But with my attacks- pain and my liver enzymes would go up and return to normal in 2-3 days. Then nothing. No symptoms, no anything until the pain returned. Then it would just repeat the cycle:
Pain + increase in liver enzymes
Nothing- no liver enzyme elevation, no pain, no symptoms at all.
Re: I need help Anybody out there with Sphincter of the Oddi
I have sphincter of oddi too. I have had the ERCP with a sphincterotomy and I am still suffering from all of the same symptoms as before, I think they may be a little worse now. I have spent thousands of dollars on test after test and the ERCP was the only test that showed I did have the obstruction. I now have chronic pancreatitis from the procedure which hurts as well. From what I understand, if you do not attempt to fix the problem that it will get worse and start to effect other vital organs such as the liver and pancreas. You really need to see a GI specialist for Sphincter of Oddi. I felt like I was the only person in the world with this problem, I am sorry you are going thru the same thing, but at least I know I am not the only person!!!
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by biliarystenosis
I have sphincter of oddi too. I have had the ERCP with a sphincterotomy and I am still suffering from all of the same symptoms as before, I think they may be a little worse now. I have spent thousands of dollars on test after test and the ERCP was the only test that showed I did have the obstruction. I now have chronic pancreatitis from the procedure which hurts as well. From what I understand, if you do not attempt to fix the problem that it will get worse and start to effect other vital organs such as the liver and pancreas. You really need to see a GI specialist for Sphincter of Oddi. I felt like I was the only person in the world with this problem, I am sorry you are going thru the same thing, but at least I know I am not the only person!!!
I went to a liver specialist two weeks ago who is part of a team at John Hopkins Gastrology department. They are testing me for SODS by HIDA Scan and the doctor thinks I eat too fast, eat too much fruit. Like certain foods at a restaurant will make me feel bloated and full and it will last for 30 minutes and then it passes - did it do that to you? Can you describe your pain so I can see if it like mine? Mine never sends me to the hospital but I also have fatty liver. My husband and all the doctors say I need to lose another 70 lbs to relieve the pressure from my stomach.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by biliarystenosis
I have sphincter of oddi too. I have had the ERCP with a sphincterotomy and I am still suffering from all of the same symptoms as before, I think they may be a little worse now. I have spent thousands of dollars on test after test and the ERCP was the only test that showed I did have the obstruction. I now have chronic pancreatitis from the procedure which hurts as well. From what I understand, if you do not attempt to fix the problem that it will get worse and start to effect other vital organs such as the liver and pancreas. You really need to see a GI specialist for Sphincter of Oddi. I felt like I was the only person in the world with this problem, I am sorry you are going thru the same thing, but at least I know I am not the only person!!!
What is your pain like? I just have gas and belching - the gas stays down in the stomach like pockets of air. It will pass if i take a long walk. I go to the bathroom every morning and what happens is sometimes my bowels will spasm and then my stomach hurts and I go to the bathroom again. No diareahea and i don't have IBS because I was tested. I do not have clay colored stools either. I have right rib cage pain but that is from my fatty liver. The pain is never unbearable.
Re: I need help Anybody out there with Sphincter of the Oddi
dear gigi
wow, i am sorry you are so sick. I had my gallbladder out in March of 2010, and have been so sick ever since. I was having upper right quadrant pain and mild nausea. Had a hida scan and said it was only functioning at 27%. My doc said I had to get it out. I trusted that judgement call and wished I never had. I have never felt worse in my life. I was healthy 35 yr old, mother of 3, happy wonderful life- busy team mom and class mom, volunteer and lovin' life. Now, I am miserable due to nausea that popped up on day 4 after the surgery. My life hasn't been the same since. My poor children, husband and family. My 85 yr old grandma is in better shape than me. I have had many tests, all normal and tried every medication under the sun. Zofran doesn't help the nausea...I am scheduled for a MRCP next week. I too am scared of an ERCP. My GI doc said it can lead to pancreastitis and three months or more in the hospital. I can not believe this surgery can lead to horrible health problems. I went along with the surgery b/c not only cause my doc and surgeon said i needed it, but 8 of my friends and 6 realitives had this with no problem. My close friend had hers out a month after me, I told her not to, but she eats what she wants, just got back from a cruise and is lovin' life. I am so nauseous, it is hard to get out of bed. I can't take care of my 3 small children and have to rely on every freind and family. I can't accept this for my new life. Have you had any relief from nausea? I don't drink or smoke, eat healthy and just keep losing weight. I was in the hospital last week b/c my body was ketonic due to me not being able to eat, I would gag. My docs are puzzled and not sure what is going on. Please let me know how you are and if you found relief. We can't even enjoy the fourth of July with friends and family today. I too, am scared to death, this is going to kill me.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by mmmm4444
dear gigi
wow, i am sorry you are so sick. I had my gallbladder out in March of 2010, and have been so sick ever since. I was having upper right quadrant pain and mild nausea. Had a hida scan and said it was only functioning at 27%. My doc said I had to get it out. I trusted that judgement call and wished I never had. I have never felt worse in my life. I was healthy 35 yr old, mother of 3, happy wonderful life- busy team mom and class mom, volunteer and lovin' life. Now, I am miserable due to nausea that popped up on day 4 after the surgery. My life hasn't been the same since. My poor children, husband and family. My 85 yr old grandma is in better shape than me. I have had many tests, all normal and tried every medication under the sun. Zofran doesn't help the nausea...I am scheduled for a MRCP next week. I too am scared of an ERCP. My GI doc said it can lead to pancreastitis and three months or more in the hospital. I can not believe this surgery can lead to horrible health problems. I went along with the surgery b/c not only cause my doc and surgeon said i needed it, but 8 of my friends and 6 realitives had this with no problem. My close friend had hers out a month after me, I told her not to, but she eats what she wants, just got back from a cruise and is lovin' life. I am so nauseous, it is hard to get out of bed. I can't take care of my 3 small children and have to rely on every freind and family. I can't accept this for my new life. Have you had any relief from nausea? I don't drink or smoke, eat healthy and just keep losing weight. I was in the hospital last week b/c my body was ketonic due to me not being able to eat, I would gag. My docs are puzzled and not sure what is going on. Please let me know how you are and if you found relief. We can't even enjoy the fourth of July with friends and family today. I too, am scared to death, this is going to kill me.
I have learned so much over the past year. I just had a HIDA scan last week so I can put a closure to all this - I need to find out if I have Sphinctor. I am seeing an excellant Liver specialist right now. The main thing I do is not think the worst so I am trying to have a positive attitude. I went on a trip last weekend which is the first I been on the one since two years ago and I did fine. I stay away from fatty foods and I do alot of meditation. Stress made my worse. When I go through the nausea I try to tell myself "this is just gas and it will pass" - I also do alot of meditation. Acupuncture has helped a great deal. If it is been since March 2010, you still need to give your body sometime to adjust. It has been two years for me but I still have my moments. I reduced my fruit which causes alot of gas.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by biliarystenosis
I have sphincter of oddi too. I have had the ERCP with a sphincterotomy and I am still suffering from all of the same symptoms as before, I think they may be a little worse now. I have spent thousands of dollars on test after test and the ERCP was the only test that showed I did have the obstruction. I now have chronic pancreatitis from the procedure which hurts as well. From what I understand, if you do not attempt to fix the problem that it will get worse and start to effect other vital organs such as the liver and pancreas. You really need to see a GI specialist for Sphincter of Oddi. I felt like I was the only person in the world with this problem, I am sorry you are going thru the same thing, but at least I know I am not the only person!!!
I have had my second ERCP and they had to cut more of my stenosed bile duct, I feel worse and it has only been a month, why am I not going through any medication therapy? I have chronic nausea and now I feel like I have this nagging belly ache under my ribs all of the time. The pressure is out of control and I feel like I could explode! What is wrong with me? Any suggestions? I need help, does anyone have any suggestions?
Re: I need help Anybody out there with Sphincter of the Oddi
Hi Gigi
I had my SOD cut The Dr said it was almost completely shut. I still have my gallbladder though. Before I had the ERCP..I had given up on food. everything I ate would make me double over in pain. I had this done in 2007 and I haven't been in that kind of pain since.
Re: I need help Anybody out there with Sphincter of the Oddi
Quote:
Originally Posted by darisa
Hi Gigi
I had my SOD cut The Dr said it was almost completely shut. I still have my gallbladder though. Before I had the ERCP..I had given up on food. everything I ate would make me double over in pain. I had this done in 2007 and I haven't been in that kind of pain since.
Wow this board is a Godsend
I too had my gallbladder out and developed SOD as a result. Have had bad stomach problems my whole life so i am sure i was pre-disposed to it.
lately the pain has been worse, my Gastro wont' do an ERCP as she says it's really dangerous because of the pancreatitis. she's offered to send me to other gastro's for second opinions as at a recent conference a few of them decided that the ERCP's are too dangerous at the risk of pancreatitis.
I dont' know what to do, I am in so much pain everyday. Lately it has been worse, i had to quit my job as it was very stressful and it was making me feel worse.
i went to see a dietician who put me on the Fructose Malabsorbtion diet so i will give that a try.
Also my gasto has prescribed 10mg of Endep (elavil in the US) at night but i hate takings meds so not sure if i will go down that path.
i want to try to de-stress and meditation, that sounds great..
One thing that has helped me mildly is Somac (40mg) I also have gas that gets trapped below my ribs and on my back and hurts like hell. I don't even want to eat anymore
Re: I need help Anybody out there with Sphincter of the Oddi
I had my final test for SOD last month and I don't have SOD's -- it was a relief. I just adjust my diet and don't eat too much. I am finding that this is gas mainly. Gas can be very painful but walking seems to relieve it.
Re: I need help Anybody out there with Sphincter of the Oddi
I have had a second ercp and a second sphincterotomy. I am still feeling the same, which is nauseated and I feel like I have a lump under my rib that is about to explode. I have a constant ache in that area, does anyone else feel this way. My doctor doesn't want to put me on meds because he says they are too addicting. Please if anyone can let me know how they feel and if anything works I need to know.
Re: I need help Anybody out there with Sphincter of the Oddi
when did you have your gallbladder removed? did you have a stone blockage or anything causing the SOD? i had mine out 6 mth ago, no stones, it just wasn't functioning and causine right side pain and nausea and still experience severe nausea....all day, every day...it is worse than prior to the surgery. i have tried numerous meds and have had many procedures with no answers. I have not had an ERCP, my doc won't perform them, but I did have an MRCP, MRI, CT scan and showed no blockages or abnormalities.
Gas just travels all over my body and causes pain and when you belch the feeling is gone. I am just full of air. My liver enzymes are slightly elevated and my recent blood test show they are still slightly elevated but they have come down from 75 to 65 because of my fatty liver. I think with Sphinctor they only go up after an attack and then come down. My triglicerides are up because of fatty liver. I no longer have pre diabetes. My overall cholesteral is normal. 
