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Re: LISA-CA

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Robin,

The pain you describe is what I live with daily. The pain gets worse even if I

walk around too much. Robin, it sounds like you also need a new Dr. I don't

know how a Dr. can think pancreatitis can just go away because they say so. The

dr. also needs realize that when the pancreas is inflamed and pressing against

other organs it is going to hurt! Maybe we should make a law or something that

any Dr treating pancreatitis has to have an ERCP done, so they can have an acute

attack and then they can be more sympathetic to our day to day lives. I know I

am blessed to have my DR.'s, my internal meds DR. is very knowledgeable with CP

he interned at s Hopkins and spent allot of time treating CP patients. He

will be the first to tell you that allot of CP patients are drug seeking but he

says you can tell the difference between drug seeking behavior and someone that

really needs help. In almost every medical record he has written regarding my

CP he notes that " patient has no drug seeking behavior " I think this helps me

with other Drs. also believing I don't want this disease for the Drugs. He also

knows that I don't ask other Dr's for medications, I won't even take anything in

the ER without his knowledge and OK. Anyways I think I got off the subject, I

don't think you can be cured from this disease. Even if you haven't had an

attack in a long time, you will always have to live your life a certain way.

You will always have to avoid certain foods and alcohol, you will always have to

live with the fear of an attack when you least expect it.

Simi Valley, CA

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> Hi :

>

> I had to write when I read your post. I just recently came

from seeing

> a specialist in PA. I have previously been diagnosed with cp, I

have

> undergone two ERCP's with stenting both times, as well as having

a " slight "

> stricture in my pancreatic duct. The report also said something

about

> beading in the branches or something. Anyway, I have been going

under this

> premise for the past three years. However, my right sided pain

does not

> seem to be getting any better at all. This is why my PCP sent me

to a

> different specialist. To make a long story short, he said I

probably had

> SOD, which should have been fixed by the sphincterotomy and stent.

In his

> opinion I didn't need the second stent. At this point, he doesn't

think the

> pain is from my pancreas at all, because it is a constant, vice-

like grip

> around my right side, that gets worse with activity, especially any

type of

> workout. He said pancreas pain usually comes and goes, since the

pancreas

> is an organ that moves and changes. So, even though I might have

had

> pancreatitis after the first stenting, he no longer thinks I do.

So, I

> guess that is either good or bad news. He is checking into it

further, but

> thinks I probably have fibromyalga, colitis, IBS or some duodenal

> inflammation.

>

> What am I supposed to think? I am still waiting for his office

to ask

> for any other documents they need for him to come up with his

> recommendation. But I can guarantee the way he was talking, he

won't

> address the pancreas at all.

>

> So, just so you know, you are not alone. This just goes to

show how

> little is none about this illness.

>

> Hope you (and I) get some answers soon.

>

> Robin R.

> Sr. Production Planning Specialist

> * (ext. 102)

Robin

Sometimes you can have a few attacks even, and never have another

one. I've known people that had three or four, and never

again...sometimes after stenting...although as I was told, stenting

with sphincterotomies is a temporary solution to a permanent problem.

I hope you find the answers and start feeling better...doesn't matter

what you have, just as long as you can find a treatment and hopefully

never another problem!!!

Email me anytime.

Robin

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