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.

[Ekaterina_Teresa]

Poor you! Feel very sorry for you as I suffer from SOD + stones in the remaining duct after cholecystectomy five years ago.


Your answer was spot on!
Get well soon. xx

[Lizardo26]

Hi I have been referred to a consultant at Southampton called Dr fanny chow for the same procedure.does it still leave you pain free? Liz

[paddyd]

I have been going to Johns Hopkins in Baltimore. I do believe they are on top of the game. Im sure Clleveland Clinic or the Mayo Clinic would be a good source also.

[bigbezzer]

Hi , I have just had my 5 treatment of Botox I have 200 mls injected and it helps with the pain a great deal

[Bill0214]

Helllo, my husband has been suffering with SOD for over a year, been to Mayo to Seattle and no relief.  Where are the best doctor's to assist & treat this disorder?  We can't find them.  

[paddyd]

Have you tried sublingual nitro when u have an attack? Talk to your Doc about SOD and Nitro.

[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.  

[bigbezzer]

Just up date , I had botox done on 21/11/13 and feel iam getting some benefit after 3 weeks , I now get no bloating and the pain as decreased , it is still there but not as bad about 3/10 compared with 6/10 so I would say that is positive , the procedure is quite simple and done within an hour , the team in Southampton is superb and I wouldn't have any reservations about having it done again , utc

[tigerprincess408]

an update and query, bigbezzer I am aware it can cause pancreatitis hence why I refused an ercp -botox has been given the go ahead and I am due to have a round after Christmas aswell as having that they want to do an endoscopic ultrasound to check bile ducts even though mri confirmed them clear, I am still dubious about the botox as I don't know the success rate hence query if anyone has had it done yet? my doubts are if the sphincter isn't functioning properly anyway what advantage would paralysing it do ?

[bigbezzer]

Hello tiger princess , I don't want to worry you but you can get pancreatitis from having SOD , I know because it happened to me the pain is unbelievable , I go to southampton on Wednesday to find out if I can get Botox , UTC

[tigerprincess408]

I too have got sod type III I am under UCLH and they too are waiting authorisation of botox injections, I have had sod for 2 years now the pain started straight after cholecystectomy but has got worse over time I have such bad pain I have to go by ambulance to hospital to have a high dose of iv morphine it is the only thing they relieves my pain I have 2 children and would rather go through labour than this pain. My local hospital in brighton are fantastic ok they don't understand the condition but I just take my letters to prove what I have and they give me pain relief straight away which is all I want at the time is too be pain free then they ask me the same questions over and over but the more info you can give them about the condition the easier it gets to get treated.
I have tried amitriptyline -no effect doctors and I agree not to put me through ercp due to risks as my kids have there lives disrupted with my frequent day trips to hospital let alone weeks in hospital, buscopan has no effect either.
I also can't connect any triggers I have tried no fat diet and have lost way too much weight I am now at 6 1/2 stone it ended up getting psychological as I thought if I don't eat I wont be in pain but have realised now that I still have attacks of pain so there is no point, I only take paracetamol  as certain medications start it off sometimes I can tolerate oramorph and other times it starts it too.
sod is a very hard condition to understand as I can't put my finger on anything specific that can help I have also become agoraphobic  
as I am worried there wont be a hospital near by or to have an attack in public would be mortifying as I scream and curse where I cannot take this pain, I hope they come up with some new advances in medicine but I have come to the decision with the docs that I would rather have these attack than have pancreatitis which can be serious and life threatening so I would rather be here for my children and in pain than take any risks, I will try the botox when it becomes available but as stated before it is not permanent and not guaranteed to work good luck to u all

[trinity510]

Please can you give info on where botox is available in uk as my doc in london said that he hasnt got authorisation yet but thinks i should have it before the ercp as he thinks the procedure is really risky for me
Anyone know if it is available in australia?

[tay345]

i just had the botox procedure done, i also have sphincter of the oddi. did you have any side effects after the procedure? my doctor said its suppose to take up to 2 weeks before it starts working but its been 5 days and im still in a lot of pain. so im just nervous that its not going to work

[ArrowD]

I am a nurse and suspect that my husband has developed SOD.It has not been diagnosed yet and Im trying to convince him to go to the doctor. He had his gall bladder out 6 years ago and the pain started this past year. He has had a rue-n-y procedure because the common bile duct was damaged during the gallbladder surgery. His gallbladder had gangrene, no stones. The liver now attaches to the intestine just south of the stomach, and  above where the sphincter of oddi is located. The procedure was done by a liver transplant expert. He has had no digestive or pain problems post surgery until this pain developed last year. It comes and goes, varying, every 2 to 4 weeks. Sometimes he vomits. The pain often lasts for 24 hours. It does not seem to be associated with anything particular that he eats. He got it today on day 6 of a vegetable juice fast.  He will break the fast tomorrow if the pain is gone.

We live quite far from advanced medical care and we are leary of surgery. We also have to rely on the Veterans hospital system and have concerns about that.

What are the leading medications that help people as we think that a medicinal option should be tried first.  Is there any evidence that you know of that acupuncture has been of help to relax this muscle?

He is 64 and otherwise has been in very good health and active. His blood pressure is  115 over 70 so I was wondering about it being low for his age and some of the meds that may be selected.

Can you list the general protocols for taking these meds?  Is it daily  or just when the attacks come?  Thank you for any insight you might be able to offer.

[sharisnana]

Your story sounds very much like mine. I had my gall bladder removed, then developed chronic pancreatitis that seemed to not improve. After multiple tests and several years, my GI ran a doppler on th superior mesenteric arteries. That is where the problem was. SMA Syndrome, rare, but correctionable by surgery. I had surgery within a few days. I hope this helps someone else.

[Christopher R Watters, MD]

Have they suggested an endoscopic sphincterotomy or SOD manometry?

[mindylou5]

That is the exact same thing that happened to my 16 yr old daughter. She has since had a sphincterotomy & it has been 2 1/2 months & is back in the same pain again. Just wondering if you have had any results with anything else? We are thinking about trying botox injections, anyone have any success with that?

[LisaMarie969]

Thank you.  I have been diagnosed with SOD and have suffered with both elevated liver and pancreatic function.  I've had to be hospitalize this last time.  I left on Calcium blockers, but I normally have low blood pressure and worry about this.(Normal BP for me would be 96/64 or so).

I'm looking everywhere for more answers.  I haven't even ruled out my kids' idea of medical majuana.. but I've never smoked or tried it, so I'm also a bit afraid of going down that road too.

I'll check out your suggested website and keep researching futher.  

Thank you!

[lau95]

Can you let me know the name of your consultant in Southampton, as my husband currently travels to London to have his Botox for his sod it takes 1hr 30 to get there and soton is only 30 mins away. He has had one lot of Botox really helped would be great to have it done closer to home