Seeing new doc on Tuesday

Pancreatitis
#1

Hi everyone -

I really appreciate all the stories and support on this site. I don’t post too much…I’m kind of a quiet one, but I relate so much to the frustration, the labeling, etc…

Here’s a quick rundown of my situation, and if anyone has any ideas to help, I would be open to listen. I was misdiagnosed for 7-8 years- horrible back pain, vomiting, nausea (you all know the story LOL) It all started when I got what they thought was viral meningitis and then a kidney infection (these diagnosis’ are all suspect in my mind) I remember the infectious disease doc asking me if I was a drinker (no) because my symptoms fit pancreatitis, but nothing else was right (!) and the diagnostic test was “so dangerous, so very dangerous” it was too much to risk for a woman without any other risk factor.

Meanwhile, I literally wasted away…I lost more than 50 pounds, was told by 2 doctors I needed psychiatric help, not GI help (really…can you fake elevated liver enzymes??)

To shorten the story, I wound up with a local GI who treated me, sort of. He would try different things, and say “we’ll give this a couple of months, and if this doesn’t work, then…” Or, my favorite, “You can’t lose any more weight. If this continues, we will have to do something. I am very concerned. You can’t expect to live if you can’t stop losing weight. Drink a protein shake.”

In spite of all my efforts (ice cream, Ensure, anything I could keep down LOL which wasn’t much) I continued to lose weight - 3-4 lbs per month! I was terrified, but every visit I would get the same speech. My family was frustrated, waiting for someone to do something…I went from a size 22 to a size 8P (loose!) All this, while frequently being hospitalized for dehydration, and intermittantly being subjected to what felt like random tests…liver biopsies, gallbladder tests, upper & lower gi, gallbladder removal. I know, lets blame it on the ovaries…no, lets not. Lets take out the appendix…oops, the ovaries ruptured, bad news. Sorry about the peritonitis. Your bad luck.

All of these things, and still no answer to the constant vomiting and back pain. So, I FINALLY marched MYSELF to Indiana University Hospital to a specialist GI, and Hallelujah!

Within 30 minutes of LISTENING to my history and symptoms, this wonderful man asked the magic question…“Has anyone mentioned Pancreatitis to you?” I wept with relief that I was not crazy. My brother died at the age of 26 from an untreated pancreatic cyst - a fact I had informed every single dr that saw me…Every one of them said “No connection - ever.”

To make a long story short, I wound up with an ERCP that confirmed a diagnosis of Pancreatitis, with ductal abnormalities. I was treated well by this doc for a year, then he moved away. :frowning:

The doc that replaced him at IU was, in a word, a jerk. He said rehydration by IV during a flare up was like depending on candy for nutrition and went against 3 ER docs recommendations to admit, and refused to admit me during a flare up for rehydration and pain control. He told me over the phone that I would have this disease for the rest of my life (like I don’t know THAT) and that I would just have to learn to deal with pain. Needless to say, I tried to switch physicians, but because I had confronted him about his antiquated attitude during our phone conversation, he would not “sign off” on a switch to another physician for my care.

Frustrated, depressed, angry…and anything else you can think of, I just walked away from there, feeling like there wasn’t anyone, anywhere, who would ever be able to help me.

My PCP was pretty supportive, he prescribed my pain meds, so I limped along for almost 2 years. I needed a specialty med again (Sandostatin) so I went back to the incompetent GI just to get that.

THEN, my PCP gets sick- really sick - and has to take a leave for over a year. His office partner has a HUGE bias against folks who take pain meds…I wind up admitted for a flair up…the idiot GI says to him (because he is really an IDIOT) “I don’t think she really has pancreatitis” So, now…I am at the mercy of a PCP and a GI who don’t believe my diagnosis.

So, the fill-in guy talks to my regular guy once he gets back, and my regular guy, who I always trusted, is now saying “Hmmmmm.”

I WANT TO SCREAM! :scream:

I, as a coincindence, was invited to participate in a study at IU by the doc (one I couldn’t get into before) that did my ERCP - Evan Fogel…(the study was about secretin-weighted MRCP’s) anyway, his assistants and I got to visiting, and my story sort of came out, and they were APPALLED at how I was treated. (a good sign) They got me copies of my records to show my PCP…and one of them even investigated to verify that I had the RIGHT to see whichever dr I chose within the IU system.

So, I see this guy on Tuesday. Here is my question, FINALLY. Do I make a big deal with him about the way I was treated, or just focus on what I expect from here on out? I don’t want to appear hysterical or demanding…I am actually quite the opposite…they will only hear from me when there is real trouble.

What are everyone’s thoughts?

I know I should have fought it a long time ago, when it first happened, but we are never so tired, so exhausted, and therefor LESS able to defend ourselves against such treatment than when we are so sick. Just making it thru the day takes so much…when it was past, I just wanted to move on, not believing my voice could make a difference against such a huge system.

Anyse, I am proud of you for standing up to be heard. You are a person of real courage.
Thanks everyone, for all your strength.

Sorry this was so long!

Susan in Indiana

#2

Susan in Indiana,

Well, well , well . . . what have we got here? MALPRACTICE!

Probably will never win; however, your doctor is NOT up to date and
you are right about his being “antiquated,” if not from the Middle Ages!

The BEST way to treat a pancreatitis sufferer who can not drink
fluids is to have them on an IV for what doctors call “bowel
rest” (nothing wrong with MY butt so I call it “gut rest,” which is
more specific and to the point. (Doctors hate it when you say things
like this to them, so you have to say it louder, like “GUT REST!” LOL)

I have a lot of research on this and it is a “standard operating
procedure.” To say that being re-hydrated is like being addicted to
candy or something that you “don’t” need is stupid, to say the least.
I will try to get information to you via email on this. I will try to
provide you with websites. I will try to have them for you Sunday.

Also, yes, let the new doctor know what treatment you received prior
to him and, also indicate the treatment that you feel that you should
have received. Make it very logical and clear. For example, "One time
I went in during a particularly nasty flare-up. I asked to be re-
hydrated because I was not able to keep things down for a few days.
He said that I was silly to ask for this and also stated that asking
for IV re-hydration was ‘addictive’ like relying on candy to feel
better. I know from reading medical journals that this IS the case.
Jerk doctor.

Anyse

#3

Hi Susan....

thanks for your story because it always amazes me how we all have similar experiences with the medical system.

I would be careful with "first impressions" with this new Doctor on explaining how you (all of us, lol) have been treated by previous health care professionals.  To me there is no sense in getting off on the wrong foot with a new Doctor.  Once you think this new Doctor is a right match for you, once you get to know this new Doctor (may take numerous visits), then I would carefully explain the attitudes of previous Doctors/health care professionals.

That is how I would handle this. 

Good Luck…Eric

#4

Susan and Eric,

I have made my decision that, when I meet with my new doctor on
Thursday, I will REQUIRE her to do the following:

  1. Take the “drug seeking” flag off of my record.
  2. Put a “focus” on my electronic record to tell ER docs what to do
    with me when I present with pancreatitis.
  3. Be available to me for a “fast lane admission” to the hospital so
    that I can go around the ER, period.
  4. Be an advocate for me and my health and listen to me when I
    suggest avenues of treatment and explain why she thinks it will not
    work and to suggest alternatives that may work better.

That is all that I ask. 1, 2, & 3 should be done that day or within a
week!
#4 will be proven over time. She will only be able to fail me ONE
TIME. After that, any failure will result in my firing her and
getting a new doctor.

I no longer have the strength, energy, or emotional wealth to deal
with the medical profession in less than a fully supportive and
helpful manner.

Anyse

#5

Hi all, ditto to all of the above. My previous GI specialist retired and I went to “the best practice in town”. WRONG. I now have a doc who actually sent me to another GI specialist, had an endoscopic ultrasound, pancreatitis was confirmed, and I now have the “fast lane” to admission, pain meds when needed, and an office staff who knows me and treats me with dignity (not with, “well, did you try some Maalox?”). As far as malpractice, concentrate on the now and get yourself healthy. Then, go in to these previous docs and educate them so hopefully someone else will not be put through all of this.

Note on eating - since my last admission about a month ago, I have not been able to tolerate anything more than watered down oatmeal and clear liquids. Anyone have suggestions? Protein shakes are out because low protein is in my diet.

#6

Macbeth,

You could try my diet. I am on TPN and I actually got my doctors to
do it for me! I am now in charge of my own healthcare now! I also get
to take credit if it does not work out too well! TPN will help you
and you don’t have to eat a thing!! :wink:

Anyse