Please allow me to introduce myself...I am
the mother of two small children, and I
was experiencing terrible pain with nausea
and somtimes vomiting for almost 2 years.
When an attack would happen, I would get
diaphoretic, nauseated, chilled, feel like
I had to go to the bathroom, and have the
most insane pain. I was put on Prevacid
twice a day which cost me 300 bucks a
month, and did very little. they tried me
on Levsin, but it did nothing. Finally I
said to my GI-is it possible this could be
gall bladder and no stones? He said it
was possible. So I had a hidascan which
showed slow emptying and sludge in the GB.
I really wanted another baby, but
couldn't imagine doing so while in pain,
so I had it out in 2004. 2 weeks later I
started having pain again, but not so
severe. My gastro said it would take a
while for my body to return to normal and
I would be fine. Great!
Since I knew the pain would go away, I
went forward and got pregnant with my 2nd
child. The pain didn't go away. It just
got worse and worse. I found info re: SOD
and took it to my gastr and said "I think
I have this". He said I couldn't
possibly, so he put me back on Prevacid
again. my pregnancy progressed and so did
my pain. I finally called my gastro and
he said "I have nothing else to offer
you". I put down the phone and sobbed. I
was 6 mos pregnant and had no where to
turn. It was the worst experience of my
life. I continued to be in agony about
every 3-4 days. A couple of times I was
in the ER. They gave me pain meds and
anti-nausea meds. They didn't help, but
they made me tired enough to sleep
After I had my baby, I developed horrible
anxiety about having pain. I would worry
that I was going to have pain, which
contributed to me having pain, etc etc
etc. I found a counselor for the anxiety.
I went to a new GI doc and said "I think
I have SOD". He was doubtful, but did the
whole work-up. Nothing was found on any
scans. I felt crazy. I went to a
specialist at Denver Health and he was
reluctant to give me any concrete dx, but
said "yes this is probably what you have.
The only way to know for sure is with an
ERCP. Unfortuneatly for you, the
likelihood of it helping in your case is
small, and there is a good chance you will
get pancreatitis."
Well, at this point I did not feel very
statistically lucky, so I went home with
nothing. I asked my GI doc to refer me to
pain management. The Dr I saw was
absolutely fantastic. He believed in me
even though I did not have a concrete dx.
He was very sensitive and caring. He put
me on Cholestyramine to bind the bile in
my stomach. I take it three times a day
before meals. He gave me a certificate
for medical marijuana, which helps
immensely. He also gave me a medication
called Fentora, which is a Fentanyl
derivative that dissolves between the
cheek and gum. This actually relieves the
pain! He also sent me to acupuncture,
which I think was the most helpful of all.
I went weekly at first, then every other
week, and now I go about once every moth
or so.
I still have attacks, but not nearly so
frequently and not nearly so horribly. I
am no longer thinking about suicide. I am
able to live a pretty normal life, go out
with friends, play with my children, work
full time, etc. I only take the Fentora
once or twice a month now. I have this
man to thank for my life. I am posting
this so that someone else may benefit from
my experience.
Consequently, I have been doing research
about the possible connection between
celiac disease and SOD. I have found that
there is a connection between the two,
especially SOD where the gall bladder was
removed due to sludge and no gallstones.
It is very interesting stuff, and I guess
it makes sense in hind sight. but that is
a post for another topic.
Thank you for allowing me to share this
information.
