Re: RE:Its very real to you-doctors don't know it all-just think they do

[Guest guest]

Hi

I knwo how you feel I had my gall bladder out then I went down hill

majorly

They did every test exploratory surgery and found nothing

All I can suggets is that you try 2 more tests fecal fat and fecal

elastase. I also understand that Ultrasound and MRCP are good. Try

teh fecal tetss first . They will usually show somethign and are teh

least expensive

Hang in there

I have been undiagnosed 3 years. The difference is they beleive its

CP ...due to pain and hospital stays which have been numerous etc

cheers

debs--

- In pancreatitis@y..., ERICKA POPPE <ericka72us@y...> wrote:

>

> Hi ,Just wanted to tell ya I've been told by the best spec at UCSF

that the pancreas is an organ that does not " HEAL ITSELF.. " I know

this because also I have had my gallbladder removed...For

nothing....I had no stones or sludge.They took it out anyway because

they said I had extensive scarring on the gallbladder.Well-I wish I

still had it.I cannot eat food anymore.You could have spikes of

inflamation and the painless times are when the inflammation has

reduced,or calmed down as I say...When your not having an " acute

attack " its hard to diagnose.Did the surgeon say if your gallbladder

looked scarred...?Have you had your amylase and lipase levels checked

when you feel pain?Mine used to be in the 2000 range(norm-58-128)!!!

all the time.Then after all the tests and hospitalizations-they

started noticing i would " spike " meaning the levels would go from

normal to off the charts in a matter of hours.One doc made lab repeat

test so many times,lab manager got mad at the doctor,,,e said he had

never seen anything like it before(the spikes).Well God Bless you...W?

B tell me more about you...ka Happy Holidays!!!

> maryg7878 <maryg7878@y...> wrote: Hi everyone -

>

> it's been a while since I posted, so figured I'd give an update.

The

> bottom line is I met with my GI doc yesterday to go over

everything,

> and he says they can't find anything wrong with me.

>

> They have done two ultrasounds, both times they saw what appeared

to

> maybe be a cyst on my pancreas (which is why the whole pancreatitis

> thing came up). Two catscans showed absolutely nothing on my

> pancreas. The GI doc had a few radiologists look at the ultrasound

> films, and they are all in agreement that the shadow thing is most

> likely my duodenum, that the ultrasound scope thing was just held

at

> an angle where the duodenum was over the pancreas. He says the

> catscan is the ultimate authority, and since both showed nothing on

> the panc, he is convinced there is nothing there.

>

> Last week they did a flexible sigmoidoscopy and an air contrast

enema,

> and both tests showed absolutely nothing. That was a pretty

horrible

> day for me, not fun at all! But I'm glad I did it, because I found

> out just recently my grandmother had had colon cancer, so it's good

I

> had it checked. He didn't find anything that would explain my

chronic

> diarrhea.. he thinks that I just have irritable bowel.

>

> This past Wed, he did an endoscopy and didn't find anything wrong

with

> my esophagus, stomach, or duodenum.. he did a biopsy of the small

> intestine but I won't know results for a week or two. The

endoscopy

> was actually not bad.. I don't remember having to swallow the tube

at

> all (which I was really freaked out about).. the only thing I

> remember is gagging when they pulled it out, then telling them they

> forgot to give me a " drool pad " , then I was out again and didn't

wake

> up till the recovery room.

>

> My bloodwork is still showing slightly elevated liver levels, and

> slightly elevated white blood cell counts, but they don't know why,

> and think that maybe that's the norm for me, or maybe I just have a

> mild inffection somewhere. He is not worried about the bloodwork,

> thinks I should have it redone in a couple months just to see if

they

> have changed.

>

> sooo.. I just don't know. He thinks I have irritable bowel, and

that

> the pain I had had could have been caused by that. I think maybe

my

> middle stomach pain could have been, but I do not think my right

side

> pain that I had in July was caused by irritable bowel - I was so

sick,

> in pain for over a week, running a fever for a week, nauseaus,

> dehydrated, lost 10 pounds in one week.. I just can't chalk that

up

> to irritable bowel. I really think that was a gallbladder pain,

since

> I experienced that same exact pain during the hida scan.. I KNOW

it

> was the exact same pain. He said in a hida scan, sometimes they

give

> you medicine to make the gallbladder spasm, and that could have

caused

> the pain during the procedure.. then it seems to me that my

> gallbladder must have been spasming during that awful attack. But

he

> can't find any stones, so doesn't want me to have it out.

>

> I've actually been feeling pretty good. Haven't had any pain that

> couldn't be dealt with using Tylenol since early September, which I

> think is a good sign. And the pain I get is just little twinges

here

> and there, nothing major or ongoing at all. I was sick last week,

> very nauseous and feverish, but I think it was just a bug - went

away

> after a couple days. And lots of people at work have had stomach

> bugs, so I'm not worried about it.

>

> So it seems to me that A) there is nothing really wrong with me,

and

> maybe what happened in July was just a bad bug or virus or there

IS

> something wrong with either my gallbladder or pancreas, but it's in

a

> good resting state right now. He did say it was hard to diagnose

this

> after the fact, which I understand. I know that a lot of people

here

> had problems for a little while, then they were fine for a few

years

> then their problems started up again. Maybe it really *was* a

> pancreatitis attack, but it happened for some flukey reason, and

now

> the panc has healed itself and is fine. Who knows.....

>

> So I haven't really been posting here because I sort of feel like a

> fraud.. if I don't have pancreatitis, what am I doing posting on a

> pancreatitis board?

>

> But I will say this tho. Regardless of whether or not I actually

have

> the horrible disease called pancreatitis, I have learned a LOT

about

> this disease from all of you, and my heart has certainly been

opened

> to the injustices suffereed by those people who do have this

disease,

> and to the ignorance of the medical community, as well as the world

at

> large. And it makes me angry. I have told everyone I know about

this

> disease, and I will continue to do so, because I think it's

important

> that more people actually understand what this disease really is.

>

> In any event, that's my story thus far. Maybe I'll get sick again,

> maybe I won't. I plan on staying subscribed to this group, since

> there are many people here that I care about and pray for and would

> like to hear updates on, but I probably won't be posting much as I

> don't want to waste the bandwidth. Ya'll have enough e-mails in

your

> mailboxes I think

>

> If you have made it this far in my novel, thanks for reading

>

>

>

>

>