Sphincter of Oddi

December 20, 2002

Date: Fri, 20 Dec 2002 06:27:44 -0500

Subject: Re: Sphincter of Oddi?

Lily, could you explain a little more about what the pain is like from

Sphincter of Oddi. I asked my GI about this and she said you would not have

chronic pain with it but severe episodes of pain. And how is it diagnosed? By

ERCP or what? My pain got really bad 6 weeks post gallbladder surgery and is

now pretty constant everyday although I tolerate it with no pain meds I don't

know how much longer I will be able to stand it. I don't notice a difference

in my pain when I eat (but I still take enzymes & try to stick to a low fat

diet). I feel better at night when I am resting (I sleep with a heating pad

on) and I feel pretty good in the morning but after being up and moving

around the pain starts circulating my upper body. I just had an endoscopic

ultrasound yesterday which revealed a healthy looking pancreas - so I am

wondering now if the pain could be caused by the sphincter of Oddi or would

that show up on the EUS also?

I would appreciate comments from anyone who wants to share information on

this topic.

Thanks so much & A Peaceful, Meaningful, Painfree Christmas to All of YOU!!!

Debbie in Mich

December 21, 2002

Debbie,

I can give you a brief run down of my GI problems and SOD experiences and what

has or has not worked for me. Just excuse my typo's as my fingers have a way or

running wild and I am not good at taking the time to go back and proof read !!!!

I woke up in the recovery room immediately after my GB surgery with the worst

pain in my life. It was a spasm like pain, tightening, felt like a cement brick

was lodged under the first incision site between there and my belly button. It

was horrendous. Worse than labor and delivery which was a piece of cake compared

to my GB surgery. Now I would rather have a hysterectomy with no general

anesthesia than to have that SOD pain ( smile ! ). They discharged me anyway, I

had Nurse Ratchett as my RR nurse who did not know that I was a nurse and didn;t

believe I was in that much pain after my surgery. Regardless, I was sent home

and for days and days, I had very tightening pain, spasm like, severe stabbing

to the point where I could not breathe and it was CONSTANT. Did not radiate to

my back but from my sternum down to my belly button, in the center. I took

Vicoden like candy and called the doctors office everyday. I could not eat or

drink and dropped like 15 pounds the first week. I could not walk, could not

shower without help, could not eat, needless to say was in pain. i called the

doctors office every day and finally I just went to his office and he took one

look at me and dropped his jaw. Sent me to Indy to see Dr. Lehamn who told me

that he was pretty convinced that I had SOD based on all of my clinical

symptoms but that I needed a ERCP for a 100% diagnoses, which would be based on

the pressure readings inside the ducts and spincters. He explained the risk of

pancreatitis to me which at that time was almost 20 % and I asked him to treat

me medically as if I had SOD as I did not want to do the ERCP at that point due

to the chance of pancreatitis and a repeat ERCP which apparently is not uncommon

up to 15 % after a sphinctorotomy according to Lehman. So we tried about 15

differnt drugs over a 1 year period before I found a reasonale combination and I

was off of work for almost 10 months before I went to work part time .

SOD does not show on a CT, but dialated ducts will show on a CT which shows

there is a pressure elevation. SOD does not show on a regular ultrasound or any

other testing but ERCP. My pain is constant, daily but tolerable with my Levsin

and Clidnium. I do not take narcotics with any consistency, only when I have the

bad flare ups. I have been to the ER when I could not break the pain cycle at

home. The SOD flare ups hit hard, spasm like pain in the center of my abdomen,

between my sternum and my belly button, tightening, stabbing and sometimes hot.

It also has been known to hurt under my ribs, like a balloon is being pumped in

there with a air compressor. I recently have started with radiating middle back

pain and have been fortunate that my CT that I do every year shows no problem

with the pancreas and that my enzymes have not been elevated. I see Lehman every

year and physically take my CT scans to HIM for comparison. I have been

diagnosed for almost 2 years now since I had my GB surgery from H.... he said

that without doing the pressure readings that he can not give me that diagnosis

at 100% but he states that it is his working diagnosis and appears that

everything else has been ruled out. I have had all of the tests except the ERCP

and the EUS. Colonoscopies, UGI's, EGD's ,small bowel tests. I have drank enough

contrast to light up Russia. But when that SOD pain hits, it hits out of the

blue hard, escalating feeling inside. I am sorry if I am not decribig it well

enough but it is so hard to really put in words. My pain is constant and can be

severe episodes at the same time. I hope that this helps you.

Just as a side note, I have done acupuncture ( was a skeptic before, but when

you are in that much pain, you will try anything ). The acupunture has helped

me quite and bit and after losing 50 pounds my weight has now stabiled with the

acupuncture, Clidnium and Levsin along with digestive enzymes. It has been a

struggle and remains a daily struggle but at least it is managable now.

Keeping my fingers crossed and wishing you well,

Lily in Ohio

Re: Sphincter of Oddi?