Lets take a stand!

#1

I am sure you all have thought this numerous times but…I am a registered nurse and unfortunately am now on the other side of the bed rail. I haven’t done patient care in about 3 years although (thankfully) I do still go in an occasional day a month and do some teaching (I’ve been a nurse for 14 years). Sorry I am rambling…anyway. Most hospitals nowadays are so in to guest relations and have started doing classes on how to better manage pain. You may notice the charts with the little faces and being asked what your pain level is…blah, blah, blah…like the inability to speak wasn’t enough indication…anyway. I wonder how a person could go to a hospital or hospitals and do a presentation to the ER/and floor nurses about CP and how it presents?

Here is why I say this. I have been fortunate enough to meet 3 people in my ER travels that have had acute pancreatitis. One was and MD who was so kind and compassionate and understood that CP does not present with elevated amylase and lipase most of the time and treated me quickly and gave me the choice of staying to be admitted or going home. I was SO bad I stayed. I could have kissed this man.

I also met a nurse who worked in the ER and had for many years. She started having abdominal pain etc,. They kept running tests and nothing showed. It got so bad that the same doctors who had workded with her for well over 15 years started accusing her she was drug seeking!!! She finally found a GI who agreed to do an ERCP (although he told her he didn’t think it would show anything) and she had pancreatic divisum.

The other person I met thankfully works for my PCP. He was in the hopsital for 6 weeks and when I call in trouble he is so kind. The last flareup I had he was off that day and they took ALL DAY to call and then just so go to the ER. When he is there he is back right away and i am a flat admit. When I finally call I am either sure I am dying or want to because of the symptoms.

So, great minds one and all, how many times do you hear about AIDS, Cancer, etc. So how do we get this information out there? I know, I am probably just an angry frustrated newbie but you have all given me such hope.

Blessings to all,
Angela

#2

Hi Angela. I read everyone’s posts everyday…although I dont respond often, because I have found that if I wait long enough, another member will undoubtly appropriately respond.

This forum reminds me of something I saw on the TODAY Show a few weeks ago. TODAY was doing a report on a guy from England who was diagnosed with pancretitic cancer and given six months to live…so he decided to spend all of his money…which he did. After he spent all of his money, he found out he was misdiagnosed and (I am quoting) “only had chronic pancreatitis.” The reporter (I’m thinking Ann Curry, but not sure…of course, she is only reading a script) said “He is not dying of pancreatitic cancer, he only has chronic pancreatitis and is alive and well.” !!! This still upsets me soo much and in soo many ways!!! They made it sound like chronic pancreatitis was NOTHING!!! I have read studies that say that 20% of people with Chronic Pancreatitis will die from complications of CP. (Not to mention that just having CP reduces our life span by @20%)

I have been considering contacting NBC/TODAY Show to point out this serious injustice to people like us who live daily with complications from CP.

Maybe their Doctor/Reporter can do an article on CP.

Eric (Thanks to everyone for posting and sharing…We have a great community)

#3

Eric,

Alive yes. Well, I doubt it!!! I am still laughing over this. The poor
guy probably wishes he were dead in more ways than one. Welcome to our
little slice of heaven. Broke because the co-pays are killing you between
the hospitals and the meds. Sick almost everyday. Ah, what bliss. I am
going to see if I can find that segment on NBC’s website. I agree with you.
People hear about all these disorders and it’s like no one knows about CP.
How can that be? It astounds me. I have had this “cranky pancreas” for 29
years and had to fight all of them. You don’t see rhuematiod arthritis
patients being treated like drug seekers. That’s chronic but I guess still
measureable. If only we could touch the docs and let them feel what we feel
for an instant, I believe once they picked themselves up off the floor, they
would get us some relief tout suite. Somebody said that if there was a
celebrity that had this then we could maybe get some recognition. This
disease is so isolating. I got CP when I was 7 but a lot of people get it
related to alcohol. But that’s nothing to be ashamed of! Everyone has
their own demons! I’m at a loss. But I just know that if the info could be
presented to these facilities who see these patients that knowledge is
power. And we must become empowered! Sorry about the ranting…

Take care,
Angela

#4

Angela,

I want to put together an article based entirely on medical research and papers by doctors and then get people’s stories about what happens to them when they go to the ER to get help and require admission. It would be interesting to maybe do this as a dual sided article with the research on the left page side and then experiences on the right page side.

If any of you would like, please write out your own experiences (every miserble, humiliating and anxiety provoking detail). I know that all of us have had many and maybe you can write about two or three times that stand out the most to you. You can email your story (I will use only your moniker so that you won’t be quickly identified) and I will put it together. anyse1@mac.com

I did the research and have about 30 articles on how to treat pancreatitis patients who present themselves to ER doctors with an acute attack (that excruciating pain).

Anyse

#5

There are meetings during the year for GI’s and they talk about all kinds of subjects. There may also be meetings specific to CP but I’m not sure about that. I wonder if there would be some way to approach the organizers of these meetings and ask for time for someone to speak to the doctors about the reality of living with CP and ways to address, talk to or help their patients?

Vonnie

#6

Dear Angela,

I try to understand doctors but I don’t I have a doctor that even though I was in his hospital for 7 weeks he didn’t tell me he did know what wass wrong. All the tests came back normal but yet I was in pain. He did a ercp and the pain went away so much so that they let me eat and then in a matter of hours I was rolling around the bed in so much pain they had to give me a morphine pump. I was put back on TPN feedings and not aloud anything at all except a few ice chips. After time I was sent to rehab to learn about the TPN which I got deathly ill on because the rate was set to high not the same as the hospital i vomited for 4 days I couldn’t get out of bed to take care of my own needs. Because of a disk that tore 12 yrs ago when I vomit I lose control of my bodily functions. I thought for sure I was going to die. I begged my husband to call the doctor to lower the tpn when he did I was feeling better and asked to go home.

But now that same doctor gives mixed messeges saying that he went to sa confrence on chronic pancreatis and feels thats where im atthen in the next breathre that I have nerve ending pain. I have another specialist and he wants to do a mrcp and if it is the pancreatic divizum that i have i will need to see a pancreatic surgeon which scares the heck out of me. because of everything i have read here I don’t want to be made worse.
My pcp doesn’t want me to believe everything i read . so i don’t know i am frustrated , depressed and don’t know what to do.

Hope you have a day that is a good one with less pain

Kathie

#7

I have been fortunate to be able to get so many articles that are “supposed” to be “common” for GI’s to read. However, I feel that they do not. ALL of the articles actually support a “standard of care” as well as a “standard of procedures” for those of us with chronic pancreatitis. It is appalling that I know so much more about this than any ER doctor. It is due to my own advocacy that I have a standing order for the ER to do all the tests that they want so as to cover their own asses and then to admit me post haste for 3-6 days, depending on how well I recover overall. I had it in when I went in Memorial Day weekend and then they pulled t after I got out on Thursday after Memorial Day. I was called last Monday by my GI specalist who said that I “should definitely be admitted” for “bowel” rest (which s synonymous with “gut rest”). They just changed the wording to make things such that no one can be put at fault if they “miss” something by “just following” my predeing doctor’s orders.

I like a laminated card approach, even foldable, so s to cover a number of aspects that CP sufferers have to deal with. I will, with “cager,” work on this and will take all suggestions. PLEASE make the subject of your direct email pertaining specifically to ths as “Panc Pub” so that I can route your suggetions to a folder just for those emails and get to them quckly and easily. My email is: anyse1@mac.com

I love that we can all work and share in ths venture.

My thoughts are always with all of you.

Anyse

#8

Hello Friends -
I haven’t posted anything in a while because school has taken up most of my time. I’m just thankful that I’ve only had to miss 1 1/2 classes. Luckily I’m getting an EUS between quarters so I won’t have to deal with that and stress over grades.

I’m writing in respose to Eric’s post about “only chronic pancreatits” and am going to do something. If you don’t know, Montel Williams does quite a few shows on different illnesses because he has been diagnosed with MS. He’s pretty good about informing on rare, and not-so-rare, diseases. I went to his web site but he doesn’t have e-mail set up to contact him so I’m going to have to lick a stamp. I figure that the more of us that write in, the better chance we’ll have at getting him to profile CP. I’d love it if you’d join me. We need to get the word out that we’re not going to the ER because it’s fun and when we say we are in pain, we’re serious!

Here’s the address:

The Montel Williams Show
433 West 53rd Street
New York, NY 10019
Attn: Viewer Services

I don’t have horror stories like most of you do but I don’t want this crap getting any worse for any of us. Something needs to be done and this can be a start. Hope you join in or maybe spread out and write someone else. I did write the Today Show and got some generic letter back about how they can’t answer everyone personnally. I’m with Eric - we need to take a stand! Thanks for your time. Pain free hugs to everyone!!!

Kubladi

#9

Great idea!!! I am going to send a letter also. Come on guys!!! Let’s
give this a shot and see if we can get some media attention directed toward
the faces of CP. Thanks for doing the leg work. I really think we may have
a shot.

Angela