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Old 10-25-2011, 07:25 PM   #1
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Sphincter of oddi dysfunction - help!

Hi, I am only 19 and have been diagnosed with sphincter of oddi dysfunction after getting my gall bladder renoved then having a year of constant pain that I was on alot of morphine daily (the same amount doctors would give patients who are dying to keep them comfortable (which only took the edge off), and spent most of the year in hospital listening to doctors who told me its all in my head (even though my liver function tests were always off) and being 19 and feeling that no one understood my pain made me extremely down. I finally went private as the nhs severely failed me and within a month I had a diagnosis and had botox injected into my sphincter which reduced the pain ALOT (no more morphine!!!!) and helped me get out of bed. My next step is to get the sphincter split and I just want some advice from people who have been through this. I'm still I'm a constant uncomfortable pain and as this has already ruined a year of my life, being 19 I just want to be a normal teenager.

Also omg the weight gain, I have always been about 10 stone and struggle to keep the weight down but through this all have put on 4 stone now I blame half of it on the being on bed all day however now that I'm starting to feel a bit better I am focusing on it and really struggling to loose weight. My pain doctor has told me that one of my medications (amytriptoline) would have been a major factor in this but my liver doctor disagrees, has anyone had the same problems? I know I have rambled on but I really need to hear someone has gone through this and hear your stories and really how you cope!?

 
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Old 10-28-2011, 06:13 PM   #2
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puppyluv HB User
Re: Sphincter of oddi dysfunction - help!

I was recently diagnosed with SOD after over a year and a half of horrible pain. My gallbladder was removed in June 2010 but the pain remained. I had an ERCP a month ago to test the sphincter pressure and cut the bile duct if needed. My pressure was 112 - anything over 40 is considered abnormal. I did get acute pancreatitis from the ERCP and procedure and spent 5 days in the hospital. Unfortunately the pain is worse now than before. I go for an ultrasound on Monday to see how the pancreas is looking. I hope you get feeling better soon.

 
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Old 12-17-2011, 11:49 AM   #3
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Shelley23 HB User
Re: Sphincter of oddi dysfunction - help!

Quote:
Originally Posted by Rachelrod91 View Post
Hi, I am only 19 and have been diagnosed with sphincter of oddi dysfunction after getting my gall bladder renoved then having a year of constant pain that I was on alot of morphine daily (the same amount doctors would give patients who are dying to keep them comfortable (which only took the edge off), and spent most of the year in hospital listening to doctors who told me its all in my head (even though my liver function tests were always off) and being 19 and feeling that no one understood my pain made me extremely down. I finally went private as the nhs severely failed me and within a month I had a diagnosis and had botox injected into my sphincter which reduced the pain ALOT (no more morphine!!!!) and helped me get out of bed. My next step is to get the sphincter split and I just want some advice from people who have been through this. I'm still I'm a constant uncomfortable pain and as this has already ruined a year of my life, being 19 I just want to be a normal teenager.

Also omg the weight gain, I have always been about 10 stone and struggle to keep the weight down but through this all have put on 4 stone now I blame half of it on the being on bed all day however now that I'm starting to feel a bit better I am focusing on it and really struggling to loose weight. My pain doctor has told me that one of my medications (amytriptoline) would have been a major factor in this but my liver doctor disagrees, has anyone had the same problems? I know I have rambled on but I really need to hear someone has gone through this and hear your stories and really how you cope!?
I have had the sphincter of oddi diagnosed 5 yrs. ago I had an ERCP and the Dr. did a sphincterotomy. My pressure was 480, way off the scale. I still have pain and am in the hospital at least once every few months just for pain meds and fluids. hang in there. Its very hard to cope, but there are lots of people out there with the same problems as we have.

 
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Old 12-17-2011, 11:51 AM   #4
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Re: Sphincter of oddi dysfunction - help!

I have had the sphincter of oddi diagnosed 5 yrs. ago I had an ERCP and the Dr. did a sphincterotomy. My pressure was 480, way off the scale. I still have pain and am in the hospital at least once every few months just for pain meds and fluids. hang in there. Its very hard to cope, but there are lots of people out there with the same problems as we have.

 
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Old 01-09-2012, 12:23 AM   #5
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animalrescuer HB User
Re: Sphincter of oddi dysfunction - help!

I have had Sphincter of oddi dysfunction for 8 years. Although I have had 7 ERCP's, Sphincterotomies, Manomotries, stents placed----you name it, I am still in constant pain and have also progressed to having Chronic Pancreatitis, due to the number of SOD attacks I have had. This is such a frustrating disease to deal with, as is frustrating for doctors to treat. I just had yet another nerve block done 2 days ago, but they have never helped before, and I am still in severe pain yet today. My doctor and I have been talking about me going to the University of Minnesota Medical Center to have a Total Pancreatectomy with Auto Islet Transplantation. This is a MAJOR surgery, but I cannot live this way much longer. I was medically retired from my federal government job earlier this year because of this disease, and my life---at the age of 41---has become a nightmare to live. The monthly hospital stays and the multiple surgeries each year have taken a toll on me and my family. This surgery may be my only hope of living a normal life again. I have read that it is a Godsend for people who have SOD/Chronic Pancreatitis and have had no relief from other treatments. I have an appointment next week with my doctor again to discuss this. We only hope our insurance will cover the surgery. It may be something others on here want to check into, though.

 
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Old 01-09-2012, 09:29 AM   #6
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puppyluv HB User
Re: Sphincter of oddi dysfunction - help!

Welcome to the board animalrescuer. Please keep us posted with your progress. I'm afraid I may be going down the same road as you have and am interested in your results. Best of luck to you.

 
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Old 05-21-2012, 08:59 PM   #7
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Deb481 HB User
Re: Sphincter of oddi dysfunction - help!

I just had a new procedure done for my SOD. Let me know if you want more info. I have been pain free for 2 months. No meds! I had a sphincterotomy and have been through a lot.

 
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Old 05-21-2012, 09:41 PM   #8
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Re: Sphincter of oddi dysfunction - help!

Quote:
Originally Posted by Shelley23 View Post
I have had the sphincter of oddi diagnosed 5 yrs. ago I had an ERCP and the Dr. did a sphincterotomy. My pressure was 480, way off the scale. I still have pain and am in the hospital at least once every few months just for pain meds and fluids. hang in there. Its very hard to cope, but there are lots of people out there with the same problems as we have.
I just had a new procedure done for SOD. Let me know if you would like more info. I have had 2 months of no pain and am on no meds.

 
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Old 05-21-2012, 09:44 PM   #9
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Re: Sphincter of oddi dysfunction - help!

Quote:
Originally Posted by puppyluv View Post
Welcome to the board animalrescuer. Please keep us posted with your progress. I'm afraid I may be going down the same road as you have and am interested in your results. Best of luck to you.
I just had a new procedure for SOD done 2 months ago. I am pain free and med free. Let me know if you would like more info.

 
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Old 05-24-2012, 12:46 PM   #10
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Question Re: Sphincter of oddi dysfunction - help!

Rachelrod91 I have just been diagnosed with the same after 6 years of pain agony and tests live in Northern Ireland have not found anything to help with the pain so far under pain management now and being sent for a second opinion at hospital in Belfast. Was put on my records 6 years ago as severe IBS and possible SOD put on files I was on Creon dietician told me this never even heard of them let alone taken them, Gastros at the hospital I am under at the moment run away when they see me, had to retire from a job I loved due to ill health. Own GP says if new consultant offers ERCP to have it done another says no way to risky now down to 6 stone sick of being sick but not literally as had a Pyloric as a baby at 6 weeks due projectile vomiting keep wondering if its anything to do with that. Would you let me know where you are being treated in the UK as I was told there are only a few places that do this procedure and none over here. Now fighting for benefits as they say i am fit to work even though i am in pain most days and very rarely go out any more what ever i eat upsets me. Tried the Amiltripyline but had a bad reaction to it so now on pain patches but not much good same as you had to go private for certain tests and as for the NHS it is total c**p as far as my experience is concerned. Told by 1 nurse last time i was in to go home and take pain meds nothing they could do for me was taking up a bed space i complained about her to the ward sister. Thanks in advance hope to here from you.

 
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Old 05-25-2012, 06:25 AM   #11
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Re: Sphincter of oddi dysfunction - help!

Know i am new here but any help/advice at all would really be greatly appreciated from anyone where ever in the world. Should I go for the ERCP if offered or not really don't want to end up with loads of them and a ruined pancreas can it be controlled to an exrent by meds?.

 
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Old 01-14-2013, 06:23 PM   #12
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Re: Sphincter of oddi dysfunction - help!

Hello everyone I was researching sphincter of oddi and found this post I started that I totally forgot about last year. Well I had the ercp with sphincterectomy had the pancreatitis post surgery, and was pain free for, 10 mins got my life right back on track and now I am back in the same position. Constant pain and not able to do anything. How frustrating is this illness! What are my next steps I am going to see my doctor this week but I want to know others thoughts who have been through this. Rachel

 
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Old 01-21-2013, 02:29 PM   #13
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brookevale HB Userbrookevale HB User
Re: Sphincter of oddi dysfunction - help!

Hi,

I suffered undiagnosed with SOD for 14 years after my gallbladder was removed. For over 12 years I had the right side pain-only and learned to live with it and manage. 16 months ago the SOD got so bad I couldn't eat due to vomiting, nausea, and loss of appetite; and had severe braing fog, weakness, and fatigue. I lost 40 pounds, becoming dangerously underweight. I was fainting and had very low blood pressures. I lost my job and had been hospitalized 12 times. My family had to help me care for my children. I ended up getting feeding tubes. After a year, I went to the University of Minnesota and was finally diagnosed with SOD. I had a dual sphincterotomy, which didn't last. I felt better for about 4 weeks. I refused to continue with repeated sphincterotomies so I opted to have major surgery--a transduodenal sphincteroplasty. I am much better. I don't have pancreatic or SOD pain and can maintain weight on my own. Unfortunately I still have major fatigue, brain fog, musle and joint pain, and some nausea especially after eating and upon waking The doctors can't seem to explain or help me with these symptoms. It is debilitating! Someone suggested Ursodiol/Actigall. The nausea has lessened because I started taking Domperidone.

 
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Old 01-28-2013, 10:04 PM   #14
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Re: Sphincter of oddi dysfunction - help!

I went undiagnosed forever with SOD. Had the ERCP w/ manometry which definitely diagnosed my SOD. My basal pressures were off the charts. The doctor performed a dual sphincterotomy and, yeah, I was one of the unlucky ones who ended up with acute pancreatitis. Relief came and went swiftly. I met a local surgeon who offered to perform a transduodenal sphincteroplasty (slice open the pancreatic and biliary sphincters and sew them permanently open to the duodenal wall). I didn't like the thought of repeat ERCPs so I had this major surgery Oct. 3, 2012. It was rough to say the least. I ended up with a horrible bacterial infection, a stay in ICU, and didn't get out of the hospital for a month. Fast forward to today, four months post-op, I am so grateful I had the surgery. No SOD pain, except for a few phantom twinges, my pancreatic pain is about gone, though I still need to take a quarter of the prescription enzymes I took pre-surgery. I have very little nausea and no vomiting. I was 93 pounds before the surgery and now 115 pounds. I had feeding tubes since May 2012 and had them removed. I am able to maintain weight on my own, have more energy, and am not hopeless anymore. I do have some issues still--some fatigue and brain fog after eating, and muscle/joint pain and neuropathy of feet and hands (which just started a month ago). I know this surgery hasn't helped everyone with SOD, but has changed my life.

 
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Old 03-03-2013, 02:57 PM   #15
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Talking Re: Sphincter of oddi dysfunction - help!

I have read with interest all the postings regarding SOD and its pains and problems. I believe I have SOD too, although this is a self-diagnosis. My pains are off the chart and debilitating like yours and when I have an attack, I am completely immobilized and I can't really talk...too much pain. Quite by accident, I found that when I have these tortuous pains, if I drink hot water (i.e. hot as in hot coffee or hot tea -- not boiling), the pain subsides and disappears in about 10 minutes. I don't know why that is but I'm guessing it has something to do with soothing and relaxing the sphincter. At first I used to drink room-temperature water and it did the trick, but after a few months the room-temperature water wasn't working. So I had my husband put the water into the microwave and heat it up to about coffee-hotness. So now this is the remedy I use when I get an attack. I usually have the pain attacks during the dead of night, but recently it's been happening during the daytime hours too. But I do the same thing: Drink hot water and the pain is gone in about 10 minutes. There is 10 minutes of EXCRUCIATING pain, but thank God it doesn't last more than that.

I just wanted to let you know what is working for me. I am not taking any medications for this condition or for the pain.

About a week ago I had some blood work done and my doctor noted an elevation in my liver enzyme (AST). I suspect this is due to the constant pain barrage from the SOD. As a result, I am now taking a natural liver health supplement. I plan to have another blood work done in 2 months to see if this natural remedy works.

 
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gallbladder, liver, pain, pain abdomen, sphincter



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