Re: Re: Sphincter of Oddi dysfunction -- was Where am I going wrong? - Kim

[Guest guest]

Steve

Figuring

out what our bodies are telling us can be frustrating and challenging at times,

but eventually we usually figure out the whys and hows and what works best for

us. There are lots of folks who can eat late at night, and others like me

who can’t. There are times during the day when the nausea suddenly

kicks into severe, and eating something immediately stops the nausea (I suspect

that is the pancreas “talking” but don’t know for sure), and

at other times nothing will stop the nausea. So there are some days when

I can’t figure out what my body is needing [grin].

Do

you experience frequent migraines? That is one of the commonalities

between people who develop Sphincter of Oddi dysfunction (SOD). There are

two tests available for this, a Debray Scan and Sphincter of Oddi manometry -- but

you would probably know you had this issue before having the tests based on the

severity of the pain and the location. Everyone I’ve talked to or

read about who has been diagnosed with this condition experiences the same type

of pain and in the same location. We also all experience migraines that can

come before, during or after an episode. The other symptoms associated

with this dysfunction tend to vary a bit with each of us. By that I mean

some folks with SOD have more problems with their pancreas, others with their

liver, some don’t have dysphagia (difficulty swallowing), some don’t

have gastroparesis (slow emptying stomach), others develop biliary dyskinesia

which can cause problems with the gallbladder and trigger back pain between the

shoulder blades. We usually have one or more of these associated

conditions, and many times we’ve been diagnosed with these other

conditions first, but the combination and severity of each tends to vary.

But

the pain and location when the Sphincter of Oddi is in a spasm is remarkably

consistent for everyone who ends up with this diagnosis. It is a very

strong pain, located just below and to the right of the stomach (where the

Sphincter of Oddi is located). It feels like there is a tight band

squeezing you in half from inside-out and from outside-in, just under the ribs

and around the torso at that point. Most of the time we can also feel the

Sphincter of Oddi muscles twitching. Of course the longer the spasm

lasts, the more widespread the pain throughout the upper right quadrant.

And then of course other digestive symptoms develop, like constipation since

motility is affected. Sometimes the pain won’t last too long, other

times it can go on for days, and the level of pain fluctuates, of course.

All depends on whether the Sphincter of Oddi can recover by itself, or

needs some help and intervention from medications (there aren’t many) or

a hospital procedure.

Hopkins has a very helpful website. I use their digestive disease library

frequently, great illustrations.

http://www.hopkins-gi.org/GDL_DiseaseLibrary.aspx?SS= & CurrentUDV=31

Kim M.

SCD 6+ years

Sphincter of Oddi dysfunction 7 years

neurological & spinal deterioration 4 years

currently dealing with skin issues on hands and arms

(carcinomas)

>>>>>>>>>>>>>>>>>>>>>>

Interesting

what you say about reduced symptoms after about 11pm. I don't

think we are the same because I will eat at 11pm. I know this may not be

such a good idea normally but I have to make use of any opportunity I get to

eat. Having said that I don't eat much. Either way it doesn't normally give

me symptoms when I do. Nevertheless I keep thinking I wish I knew whether my

sphincter of oddi was working properly, what are the tests, if any, for

that?

Thanks again Kim.

Steve