New Member Story /Questions on ER Visits /Pain

Posted May 19, 2003 · May 19, 2003

I was diagnosed (finally) about 6 months ago with pancreas divisum.

However, a couple years ago I had my first severe attack of

pancreatitis and was hospitalized a week - not even allowed ice chips

for 4 days. Since then I've been diagnosed with Sphincter of Oddi

Dysfunction and had my common bile duct cut, with stents put in,

several times. I finally had an endoscopic ultrasound and this was

diagnosed (pancreas divisum). I was sent to Virginia Mason in

Seattle where they shot up my pancreas with Botox to paralyze or

maybe relax the duct, but that only worked for awhile. So I just had

a sphincterotomy after my last bout of pancreatitis. I had been in

the hospital for a week due to that.

Is this pretty common with how the process of learning about this illness

begins? Also, how do people get past the ER just wanting to send them

home after giving IV Demerol for awhile. If my GI doc is on he will have

me hospitalized, but nites and weekends are a problem. There also seems

to be alot of assuming that I must be consuming alot of alcohol to have

pancreatitis, even though there are alot of other possible causes.

And finally, even though I had hoped this sphincterotomy would take

care of things, I still get the pain below my breastbone and in my

back fairly frequently, although not necessarily enough to send me

running to the ER. I'm wondering if other people have a problem with

frequent " stomach aches " in that area, and if it's just something one

puts up with when you have this condition. I'm new to this group, so

forgive me if this has already been asked and answered a million

times!

Thanks!

Anita

Posted May 19, 2003 · May 19, 2003

Anita,

Hi and welcome! This group has been a true blessing to me. I have learned

more here than from any doctor. My 3 year quest for a diagnosis started with

that " stomach ache " you are talking about. I remember the first time I ever

felt it. I was at my parents house having a bowl of cereal, and all of a

sudden I felt this pressure under my sternum. Never had felt it before. It

lasted a day, wasn't horrible pain just uncomfortable. It returned a few

days later and I went to my doctor. Of course they gave me Tagament or

something and sent me home. But it didn't help me, it kept coming back off

and on. I won't go into my whole long story of finally getting my chronic

pancreatitis diagnosis but that " stomach ache " or what feels like to me is

pressure is how I found out about my CP. So don't worry you aren't alone!

LOL. I hope you are feeling well.

Sending lots of happy thoughts your way....

Marisa~San Diego, CA

Posted May 20, 2003 · May 20, 2003

Anita,

Yes, all of those things are common. I frequently have pain in the

exact same areas, and have certainly been through the part about you

must be drinking. All I can say is that these ER personnel should

have to live through just 30 minutes of the pain we experience and

they will understand why not drinking is no problem.

Does your dr have you on enzymes? This seemed to be the step that

took my pain from constant to just an occassional flare up. And the

four days without even ice chips? I have, unfortunately, been there

more than once. However, the R personnel have quit telling me " I

need your symptoms, I can't tell them you have pancreatitis " . But

since I've been on enzymes, I haven't had a single return trip.

And never hesitate to ask a question. That's why we're all here, to

learn and share our knowledge and support. Welcome to the group, so

sorry you needed us.

With prayers,

Anne

Posted May 20, 2003 · May 20, 2003

Thanks so much for responding, Marisa. It is really helpful to hear what

others' stories are and to know I'm certainly not alone out here. I wish you

all the best - Anita

Posted May 20, 2003 · May 20, 2003

Thanks Anne - I really appreciate hearing from you. I did just see my doctor

today and he gave me a letter to take to the ER the next time I have to go,

stating that I'm not a substance abuser and that I truly have a diagnosable

condition! I also just got put on the pancreatic enzymes and it's really

encouraging to hear you say that they work! I'm so tired of hospitals!!! I do

feel lucky that I have the doc at Virginia Mason to go to who is a national

expert, yet very nice and unassuming. So, we'll see how it goes. It is great

to talk to others with the same problems, although I feel terrible for anyone

with this problem. I hope that you continue to do well, and thank you so much

again. Fondly, Anita

Posted May 20, 2003 · May 20, 2003