Sphincter of Oddi dysfunction, what now?

[RachHenson]

Hi there, after suffering with chronic pain in my upper right quadrant for the past 8-10 years I finally got referred to a gastroenterologist today and after a thorough consultation, I was, for the first time in my life, diagnosed with and given a name to my condition - sphincter of oddi dysfunction. The Dr was quite certain that my condition was due to my stressful job and commented that it was a rare condition he had only seen in 4 other patients - all of whom were women in a similar position. I had 4 or 5 hospital stays, A&E visits over the years and each time bloods are taken and results normal. My Dr thinks that the condition will settle over the next couple of years but I'm inclined to disagree. When the episodic attacks come on I am doubled up in pain and though bizarre, I find lying on objects such as a hard deodrant can or similar hard object and rolling around on it gives me a little bit of relief but not enough to stop me wanting to admit myself for more pain relief.

I really don't want to face yet another 2 years of just 'waiting and seeing,' so am curious to know of any other options to investigate, treat, prevent or deal with the attacks please?

Any comments would be appreciated.

Many thanks

Rachael


This discussion is related to Sphincter of Oddi Dysfunction Questions.

[paddyd]

I was suffering severe extreme pain in my upper rt quadrant. Had multiple visits to ER. Doc said it was a Heart problem. Went to Cleveland Clinic and they advised me to get a Gastro. Did find one locally and he thought it might have been abdominal wall nerve entrapment as a result of GB Surgery. Pain continued and I keep researching the issue. I could not relieve the pain with anything until finally I read about Nitro sub lingual for SOD sphincter of Oddi dysfunction. It stopped my spasm and pain immediately. Saw a Doc at Johns Hopkin and he thought it was a remote possibility. Had a HIDA test and sure enough the SOD was not working properly. Awaiting an ERCP to relieve the Sphincter. I think I suffered from this for the last 40 years. having my GB removed did not help with the pain. If you are in a similiar situation ask your Doc for Nitro sublingual and if it relieves your pain WALA! good luck.

[kerrier]

I have also been diagnosed with SOD after years of pain, I had my gall bladder removed when I was 21 I am now 44, I suffered diarrhea, vomiting and chronic pain to the middle of my stomach and upper right quadrant, firstly I was diagnosed with Bile salts malabsorption I couldnt drink the solution for it and found a tablet form called Colesevelam Hydro-chloride it really does work BUT I still suffered the SOD pain 24/7 and it would peek once or twice a month so bad I had to go to hospital for pain relief and I.V due to not being able to eat or drink for days this has slowly got more and more frequent 2/3 times a week I have also had so much time off work and felt guilty and almost quit my job. I have tried Ampytriptilin, Buscopan, Tramadol, G.T spray, Co-codamol, Morphine none of which worked. I was admitted again 4 weeks ago the nurses and consultants were brilliant (Treliske Truro Cornwall) I said I am petrified of having the op as I have 5 children and both my parents died at 50 and 58 I dont want my children to be with out me, I was allowed home on mothers day :D with pain patches (Matrifen Matrix 25 mgc) and tramadol and it really works I don't have any pain at all although I woke up 1 night in pain and was gutted thinking I was back to square 1 again but to my relief the patch had fallen off after half an hour of it being on again I was pain free. I do know that canabis is also great for pain.

[Patcrn91]

morphine  and Demerol are contraindicated in SOD  nitro relieves my pain with residual muscle soreness   nitro relaxes smooth muscle  works for cramps in the rectum too  I had a sphinterotomy  years ago  now having severe scapula pain  up to shoulder rt side  see GI on thursday

[Lpreedge]

  You may still have Gallstones- I did after my Gallbladder as removed. I had to have an ERCP to have it confirmed - the stones were too small too detect on ultra sound.  The duct narrows and acts as a Gallbladder.   The DR. Had to cut the duct and the stones fell out.  I still have them- I am a producer I guess! Please see your Dr. And ask for an Ultra sound and then an ERC P if nothing shows on the US.

[Lpreedge]

  You may still have Gallstones- I did after my Gallbladder as removed. I had to have an ERCP to have it confirmed - the stones were too small too detect on ultra sound.  The duct narrows and acts as a Gallbladder.   The DR. Had to cut the duct and the stones fell out.  I still have them- I am a producer I guess! Please see your Dr. And ask for an Ultra sound and then an ERC P if nothing shows on the US.

[bercolectr]

My doctor diagnosed me also with Sphincter of Oddi Dysfunction after I had severe upper stomach & back pain similar to my gallbladder attacks before it was removed in 2001.  I also had some nausea & heartburn.  I also had gastric bypass surgery in 2009.  I am taking 20 mg 2x a day of omeprazole & .125 mg of hyoscyamine (an anti-spasmodic) up to 4x a day.  I was also told it wouldn't hurt to take an antacid like Tums.  I was told that there is a surgery they can do, but it's not a one time surgery since the scar tissue that's keeping the sphincter from working properly would grow back.  Also, it's more of a high risk surgery due to my gastric bypass.  Also, following a lower fat diet 30 grams or less is supposed to help.  So far the meds are helping a lot, but I still have some upset stomach & diarrhea on a regular basis.  Praying that changing my diet will help those issues.