Re: my update - doc says nothing is wrong (sorry, this is long)

[Guest guest]

Please don't think you are a fraud! I read your post and it is so

freaky! You sound EXACTLY what I went through with for almost 14

years before being diagnosed. I would have the pain from the sky as

I call it. By the time I would get to the hospital the pain would be

gone, nothing would show and they would chalk it up to irritable

bowel. No gallbladder stones or anything. Finally one time I had a

pain and they saw gallstones and decided that was it and took the GB

out. That wasn't it. When I was finally daignosed, I had crampy

pain in my back, not feeling as bad as before. They took a amyulase

and lipase and they were off the charts. That pain from the sky

wound up to be sphincter spasm as I have sphincter of Oddi

dysfunction! You are the best judge of how you feel. So if you

don't get better, keep fighting.

Take care

Kaye

> 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

>

>