Re: ERCP and Stent Failure

[Guest guest]

Laurie,

Is it possible for you to see a doctor further afield? I have

travelled from northeast TN to Indianapolis, to Nashville and even

seen a GI at MD , Texas whilst I was there for another

problem..and happened to have a flare up of pancreatitis whilst

there.

I did make my own way to Nashville & Indianapolis, by car which was

difficult for me, as I had a baby and needed to find someone to go

with me..(ended up my parents flew from Australia to help me out

many times) but when I was arranging to go to MD , I was

told about Angel Flight. They are a group of pilots who volunteer

their time, planes and fuel to take you to whatever medical facility

one needs to go to..and it is free for the patient and one person to

accompany the patient. They truly are excellent...

My doctor here in northeast TN is also said to be the echelon in

Pancreatitis in this state..but he is very nonchalant, arrogant and

very difficult to get into see, even when one has an appt..can't

count on two hands the many times they've cancelled my appointments.

He is always in theatre.

Explain like you have to us with your PCP and see if he/she can refer

you to another qualified GI somewhere else, but as close to you as

possible.

My GI was supposed to put in another stent everytime he removed one,

but I would always wake up to be told that it didn't need it..then

voila 2 weeks later i'd be under anaesthetic again..having one put

in. If it happens again, he said it will just be a baloon to open

the duct because stents don't work too well with me.

Also, my veins are shot from all my hospital visits..47 hospital

stays in 2 years..and still some ER doctors tell me I don't have

pancreatitis..yeah right...

I had a PICC line at one stage, but that infiltrated my arm, so they

put in a central line. Then at one stage I was told by a doctor that

it looked infected, so got it taken out pronto..only to be told it

wasn't infection..my skin just tends to show pinkish red when

something foreign is sticking out of it...but I now have a portacath

in my chest going into my neck..life is so much better with this...I

don't have to be crying when they're trying to get a vein or artery.

It just needs to be flushed once a month, which I don't even need to

remember to have done because I have to have my blood checked for

coumadin levels (blood thinner) anyway weekly to monthly.

Don't give up..there is a doctor out there who won't give up on you

either *s*

[Guest guest]

Dear Laurie,

The compassionate side of me often makes me feel compelled to respond to

letters like yours that are showing so much grief and frustration, yet I feel

stymied by my lack of personal experience with stents and ERCP's to respond

with any kind of believability because of this lack of experience. And then,

Voila, another post comes along and answers your questions with

understanding and experience, as has just done.

I am reminded once again of the uniqueness of this wonderful group of

people, because with our combined experiences with stents, ERCP's,

CT-scans, MRCP's, Whipple's, malabsorption, Peustow's, pseudocysts,

pancreas burn-out, diabetes, Pancreatectomies with Auto Islet Transfer,

pancreas divisum and SOD......we really do have an all comprehensive

representation of all the " stuff " that can happen with pancreatitis.

So I'm relieved that there's always someone here to answer these questions.

I was also interested in 's solution to getting access for the IV's,

since they had so many problems getting access with me at my last

hospitalization and I know that this will come to the surface again as the first

thing on the adgenda needing a solution.

I hope you know that although I'm lacking in the personal experience to help

with your questions, I do hope that you will find a solution, and consider some

of 's excellent suggestions.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All advice and comments are personal opinion only, and should not be

substituted for consultation with a medical professional.

[Guest guest]

Laurie:

I am so sorry that you feel so bad.

First of all throw out the rum and put away the OxyCodone....except

for what you need ok? Promise?

Second of all make a concerted effort if you have to raise holy hell

and scream and holler for someone to put a PICC line or Broviac or

port or whatever to get you some IV access. I cannot imagine

why they have not yet done so. It sounds to me like the doctors are

frustrated, no one is taking the lead and just stopping " short " of

giving you the help you need i.e. the stents etc.

Do you have sphincter of Oddi dysfunction? I am asking because if

that is the problem, sometimes it takes several stents to help as

well as balloon inflation and/or sphincterotomy/nasobiliary tube

drainge etc. Where are you getting your care?

The one thing you cannot do is give up. Sometimes it takes several

treatments (I am speaking for SOD) before you get any lasting

relief. I have been there. I am there where you are with the veins

only worse. I can't have anymore central lines. It took me 7 ERCP,

4 stent placements, balloon dilation, nasobiliary drainage AND

sphicnterotomy and then one more stent in October 2000 before I got

lasting relief.

You need to convey to your doctor that you DO NOT WANT TO GIVE UP!

Sometimes they get the idea that the patient wants to give up....and

who wouldn't after being stuck like that? I have been there believe

me. The last PICC they stuck me 15 times not including the numbing

medicine. You really need a surgeon to get somekind of access into

you so you can " rest " while the docs do their thing and not have to

worry about being stuck.

When I had been down to MUSC twice to Dr. Cotton, I let him

know I would not give up. He told me he would try as long as I

wanted to try and in my case it paid off. Like you I got mild

pancreatitis from all of that. More fortunate than most.

So please stand back, take a deep breath, regroup and go for it

again! If you need any help all you have to do is ask!

Kaye

In pancreatitis , " goutbuster " <goutbuster@y...>

wrote:

> Hi,

>

> I just had my 4th ERCP in which my second stent was removed

> and my third one was suppose to be put in. But my doctor

> decided that the stents weren't working and so he just removed

> the second one and didn't put in the third.

>

> However, the glitch in this whole scenario is that they couldn't

> obtain an easy access IV: I was stuck between 10 and 15 times

> in my arms, feet, hands, etc....then the anesthesiologist decided

> to go to the neck. He stuck me three times there before he got

> something going. Then he put me out right away with versed,

> before he went all the way with the general anesthesia. The last

> thing I remember was him talking with my GI that they should put

> in a more permanent access because I had at least one more

> procedure to go through. But when I went home that night (they

> were very quick to get rid of me too) my husband told me that the

> GI doc decided not to put in the third stent because it wasn't

> working anyways. Now I am very depressed because the doctor

> made this decision to give up on me without discussing this with

> me at all. I have gone through 4 ERCPs, 2 stents, 2 post

> procedure pancreatitis (very slight), many difficult sticks (I

tried to

> endure them stoically but I must admit by the 6th stick on Friday

I

> was in tears) only to have him give up when I was only six weeks

> away from making it to the end. I would have let them go straight

> for the neck next time, if only they would have asked me......

>

> I am so depressed that I want to take all 150 oxycodones right

> now with a quart of rum and let what happens, happen. He is

> the top of the pyramid for pancreas problems here so there is no

> where else to go and it probably wouldn't matter anyways as no

> other doctor will want to counter his opinion.

>

> So what happens now? What do I do? I have run out of coping

> skills right now.....

>

> Laurie

[Guest guest]

Thanks for your words Heidi,

I do believe that with all of us put together, we could have these

pancreatitis issues licked *L*...the hard thing is getting some

doctors to listen to us...Having the port put in is painless, no way

brings on a pancreatitis attack, and generally, just works great.

There is a chance of blood clots, but when you have a port in, you

are required to go on blood thinners for the time you have it in..I

know..it means making those pills we all take go from 78 to 79...but

is a better alternative to not getting the fluids and meds we

require in need, and the pain of having an iv being tried to put

in...I know that when they were last trying to get blood and an IV

from me, I had 2 nurses sticking my feet, one at my left arm (as a

last resort because I do have a clot in that arm), one trying for

veins in my left, and the doctor trying to get the femerol artery in

my groin, then in my arm...and believe me when I say that I was not

the only person crying. My doctor had tears in her eyes as did two

of the other nurses...because they knew they were hurting me, and

hated having to do it...You can imagine the expletives that came out

of my doctor's mouth when she found out that when they finally took

the blood, the lab technician didn't tell them to get the right

amount of blood needed for my tests, and had to guess what my

amylase & lipase were for 2 days.

I was just thinking about having it taken out, as I've been fine for

the past 4 months, but then am glad I was talked out of it by my

PCP, for I have to have more surgery in a couple of weeks and need

it for that..so I am keeping it in as long as it lasts, and when it

goes, will have a new one put in.

It is all done with a small amount of verced for slight sedation..I

was still awake, able to talk and remember everything..just gave the

verced to relax me..but then because I love the feeling of going

under so much..wishes it was done under heavy sedation *L*..but

don't tell anyone that *L*