[Karin1]

Hi All...question for you,

I saw a Gastro Interologist about a week ago, I've been waiting over a year to see him due to absolutely horrible abdominal pain attacks. The pain starts in the upper right quadrant, radiates to the left side, into my chest, through my back and up onto the tip of my right shoulder blade. The attacks are completely debilitating.

He found I have whats called Sphincter of Oddi Disfunction. He explained that he ONLY see's this in patients with Auto Immune diseases. **interesting** I lost my gallbladder about 7 years ago, no stones, no sludge, just a bad gallbladder.

I'm wondering if anyone has ever had a Sphincterotomy. He says it's a very simple procedure to have this repaired, and I'm scheduled for the end of March for this. I'm of course nervous, but very anxious to have this done, to end the pain. There is a risk of temporary pancreatitis due to the procedure.

Some say that Lupus doesn't affect the Liver, which I would like to loudly disagree. The Sphinter problem causes the bile to back up into the liver, causing elevated enzymes and severe pain. He also said the Sphincter problem is why I lost my gallbladder. ugh

Has anyone had this, and had it repaired? Would love to hear some success stories!!

Thanks!

Karin

 

[Lily]

(((((((((((Karin))))))))))) It's terrible you had to wait a whole YEAR to have this diagnosed whilst you were in so much pain :hug: Unacceptable really

I know nothing about the condition but just wanted you to know I am thinking of you and hope that you learn as much as you can about it before undergoing your procedure. An informed patient is a more confident and relaxed one in my opinion when undergoing any surgery.

Here's a very indepth and informative article from John Hopkins University on this condition, quite insightful:

http://hopkins-gi.nts.jhu.edu/pages....cfm?pg=disease1&disease=12&organ=3&lang_id=1

Take care,

lotsa love
Lily

 

[Karin1]

Lily

Thank you VERY MUCH for the article link! How do you find these things??? I've searched and have come up with very little, let alone a full diagram.

You're a very helpful and caring person, thank you.

Hugs

Karin

 

[Lily]

You're welcome Karin Google search engine is my best friend at times :wink2: I just typed in sphincter of oddi and this article was the third link out of many.

Hope it's helpful.

love
Lily

 

[karenj7777]

Hi Karin,
I have had two procedures for cuts in my bile duct to relieve pressure, whilst my dr never said specifically SOD that's what the reports say. I too have had the bile and liver enzyme problems. If I never see bile again I will be thrilled. Try to gain a little weight before the procedure in case you do have a hard time, it's common with ERCP's to lose weight and have a recovery period.

The procedures went very well for me, some discomfort and nausea but no pancreatitis which I have had without the procedure (not so bad) you should be low risk. Your gallbladder issue was exactly the same for me, weird.

It's my understanding and (slowly my drs) that inflammation can happen anywhere including the GI tract though the lupus literature doesn't support so much.

I try to keep in mind that when I was diagnosed with hypothyroidism 16 years ago weight gain was specifically written as not a symptom in medical literature "though patients often complain of it". Now it's recognized as one of the top symptoms. Good luck with your procedure.

Karen

 

[Karin1]

Thanks Karen,

Thanks for your information, nice to hear from someone who's had the procedure. Were your initial attacks the same as mine? I know it sounds strange but I always wonder if the diagnosis of different things are correct and if I'm doing the right thing.

Thanks again,

Karin

 

[karenj7777]

Hi Karin,
I agree with you about wondering about if they have diagnosed things correctly, but that's part of the game it seems. My attacks sound very similar to yours except I would be sick with just bile for days in the hospital and nothing would stop it. To complicate matters a test for Porphyria--you can search it online--is partially positive and may be a factor.

The procedure did relieve the pressure and a great deal of the pain. I am sure you will do great. Why are they waiting until March?

 

[LaurenRGB]

Sphincter of Oddi Dysfunction

Hi Karin,
I just found your post after desperately seeking some further answers to my problems, and I found our biliary tract situations are strikingly similar. I also had a damaged gallbladder removed due to the backup of bile into the gallbladder and liver, causing elevated liver enzymes. The pain from this problem has gone from the right to the left upper quadrants, to the back and into the shoulder blade areas, just like your pain. In 1995 I had a sphincterotomy via ERCP, which helped for several years, but a few years ago problems kicked in again. I have had pancreatitis from both ERCP's, but it was mild and very tolerable, so I was fortunate... just had to stay in hospital longer. I've also had elevated pancreatic enzymes at times in which I had no pain, have had stents put in my pancreas, and, well, I could go on, but you get the picture... my biliary tract is a mess.

I have had many other lupus related problems including pericarditis, pericardial effusion, pleural effusion, Raynauds, GERD, chronic migraine headaches, fibromyalgia, and more, HOWEVER, the closest I've come to having a lupus diagnosis is when I had a borderline ANA with the pericardial effusion...since then, the times any doctor has bothered to check it, it was negative. My husband and I have believed for years that I have Lupus or some sort of autoimmune disease. I've been dealing with many of these problems since my 20's, and I just want an answer. I'm hoping that perhaps with what I've been through, I can somehow help others, and am also hoping that perhaps you or someone out there can help me as well with any info to help me get to the bottom of all this. (currently I'm awaiting CT scan results and blood tests on my latest biliary tract problems which have almost brought me to the ER two nights in the past week).

Of course it has been four years since your post, so I don't even know if you'll see this message. Hope you do! And I hope you are doing much better since you wrote this in 2008.

Lauren

 

[greenhaggis]

Lauren,

Thanks for joining this site and responding to this thread...unfortunately the member in question has not visited the site since June 2008 so you are unlikely to hear back!!!

I would suggest you post a thread of your own about this same subject introducing yourself .

Best wishes,