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 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.
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 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.
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.
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?.
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
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.
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.
Hammersmith hospital in London is very good, I have been treated there for around 3 years now and would recommend Botox. After Botox I had 4 months pain free and the attacks since have not been as bad but my symptoms are fairly mild compared to others out there. hope this helps and you are feeling better very soon
I self-diagnosed myself with having Sphincter of Oddi Dysfunction after having so much post-op pains from my lap choley. My doctors didn’t have a clue and never mentioned this dysfunction to me. I had to educate myself on the internet and learned about this painful condition there.
It sounds like you have a severe case, since I haven’t had to take morphine – nor did I have any injection into the sphincter. As I understand it, splitting of the sphincter requires great surgical skill because that opening is so tiny. We have no such talented doctors here, so I refused to have any surgical procedure. I was afraid that I would “go from the frying pan into the fire” if I had anyone here cut open my sphincter.
I have been told – and it’s probably true due to subsequent pains – that taking analgesics exacerbates the pain attacks. Therefore, I try not to take them and if I have to, I don’t take too many nor too often.
To alleviate my pains, I initially drank room temperature water – just plain water with nothing in it. This helped a lot but over time, it became more and more ineffective. So I started heating up the water in the microwave to the temperature of a hot cup of coffee or hot cup of tea. This worked like a charm – and still does, by the way. Again, just plain water with nothing in it – although I suppose you can put a tea bag in the hot water if you want to. I don’t think it would negatively affect the result. But for good measure, I suggest just taking in some hot water (not scalding water…be careful not to burn yourself).
Besides, when you’re in that much pain, who cares about the flavor of the water? In fact, I’m in so much pain at that point (when I need hot water), that my husband has to prepare the water for me. I am doubled up in pain and cannot even walk from where ever I am into the kitchen. I don’t have to tell you that the pain is excruciating and I am physically incapacitated.
When drinking the room-temperature water or the hot water, it takes between 5 to 10 minutes before I feel the pains dissipate. That is my experience, anyway.
I don’t know exactly why this seems to work for me. I mentioned it to my Internal Medicine doctor and she was bewildered as to why it works to take the pain away. She told me that if it works, though, continue! So that’s what I’ve been doing. I had my lap choley in March 2010 and I have to say that the pain intervals have become less and less. If I had to guess about why this works for me, I would venture to say that it has something to do with the “blockage” in the sphincter. When I drink the water or the hot water, the blockage seems to get flushed out of the sphincter – thereby alleviating the pain.
I’ve found that what “encourages” the pain is when I eat beef (i.e. steaks). I think it has to do with the oil in the steak. I’m not sure, but I think eating oily foods is now a “no-no” for me.
I hope this helps. Please write again and let us know if the room temperature water or the hot water provides you with any relief.
Awful isn't it. I only get occasional attacks, but the only thing that helps me is to take long slow deep breaths and concentrate on your breathing. For whatever reason, it makes the spasms stop. I breath in for 8 to 10 seconds, and breath out for 8 to 10 seconds several times until the spasm stops. Worth a try. Hope it helps. There is a surgery to correct SOD, but can be risky.
For sure, codeine, morphine or any other opioids trigger the WORST attacks for me. Also, anything that triggers a big insulin secretion, e.g. eating something sugary on an empty stomach, alcohol on an empty stomach. also trigger an attack.
Last edited by nopara; 07-05-2014 at 05:41 AM.
Reason: add more info
Well, where do I start. First off Thanks for all the post on here. I am a 53 diabetic male. I had my gallbladder removed three months ago. My pain went away for about 3-4 weeks then returned worse then before. I had a ERCP done which showed a annular pancreas. I have also been diagnoised with gastroparesis about 18 years, which I now believe I do not have. I've read a lot of tge post on here but would like to here from some of you if any of you suffer from malabsorption, slow stomach, vitamin or mineral deficiencies? My vitamin D levels for the past 6-8 years have been 10-25, doesn't matter how much sun or vitamin D I take I can't get it above 25. I have a whole list of problems that I now think could be related to sphincter of odi, which I now believe I have. My muscles have been shrinking and I have lost about 35 pounds over the past 4 years, all unintentional, and mostly muscle loss and have chronic tendinitis which I believe is directly related to sphincter of odi, no matter what any doctor says. So I'd like to get some feed back from some of you on this malabsorption problem and if any of you are deficienant of any vitamins or minerals?
First time I've seen this thread
So, is this SOD always after gallbladder removal?
I had mine removed some 4 years ago and since have been suffering bile reflux
And recently (for 2 mths) upper right quadrant pain coupled with dizziness and loose bowels
Re the mal absorbtion of nutrients PPI'S cause this also
And I think lack of VitD can cause weak muscles (I have this too)
You could go crazy trying to figure out what's wrong with you, and what to do, couldn't you?