To: Laurie....goubuster and all those with SOD

[Guest guest]

I know what you mean about the docs saying its all " in your head. "

As they say, been there, done that! Fourteen years to be exact.

Even when I finally got pancreatitis I had no idea that the " pain

from the sky " I had been getting for years had anything to do with

it! Had they diagnosed the SOD sooner....as is probably in your

case, the pancreatitis would not have happened.

As far as treatment with SOD, this is what I have figured out in my

case: You cannot give up! If you have one treatment and it doesn't

last, go back. I know when I had my first stent, and then got sick

again six months later, the doctors where I live tried to tell me

there was nothing more that anybody could do in ton. They

made me believe that they had talked to Dr. Cotton and he said there

was no more he could do. Actually that is what they said.

After I thought about it for awhile, I sent him a fax and low and

behold he called me within 30 minutes and told me to get back down

there he would help me. I will never forget that visit because he

looked me straight in the eye and said that as long as I wanted to

keep trying, he would keep trying! Where I live, the medical

community is very " political " and they dont' give a rats butt about

the patients. Long story short, after four times, I finally got

enough relief that I haven't had to go back since October of 2000!

Almost three years. I have very few attacks of SOD anymore and

about one major pancreatiits attack a year as opposed to the 47

times I was in the hospital in three years!

When they do the manometry tests, sometimes high pressures will show

up in one place and not the other. They have to treat what they can

see. Its nothing to guess at. Each time I went back, pressures

were high in another spot so they would fix that spot. Again,

nothing to mess with but in the hands of an expert is very safe.

Laurie I hope you get relief from your SOD and the pancreatitis

attacks stop. Don't give up!

KAye

[Guest guest]

Hi Kaye,

Don't know how I missed this yesterday but it was nice to find a

new note today.

I finally have time to devote to investigating this whole CP thing

more fully and I appreciate hearing about your experiences. Is it

appropriate to give you a more detailed account of my history

with this? I do not mean a life story but a more summarized list

that may trigger something relevant in your mind. I ask this

because I am fully aware that I may not be diagnosed with SOD

or CP and do not want to give the impression that I can offer

advice to those that are known to have it.

Truth to tell, I am getting a little anxious after reading some of the

members stories about their ERCPs. I understood that this is

risky but had figured that it was in the same order as any

surgical procedure risK ( " Sure, appendectomy can result in

severe complications or death but for the most part, this doesn't

happen " kinda thing). And of course, there is always that little

voice in the back of my head that asks if it is not overkill for

something that is " all in my head " . Yes, I am convinced that it

isn't but there is still a part of me that wishes / thinks that it is as I

have heard it so often these past three years from doctors that I

respect (even the ones that I work with) and I am not a sick

person, had no need for doctors prior to my emergencies

surgeries and have no desire to establish a " relationship " with

one. That is why I am a little bummed about your

encouragement to keep trying. I understand what you mean and

I agree with you intellectually but do not want to accept that this

may be in my future. I do not want to be " a patient " . And I have

read some published research that questions the validity of SOD

as a pathological process (there is some controversy over

whether the sphincter truly dysfunctions and if so, is it the cause

of the pain). And SO manometry does not seem to be universally

accepted as a diagnostic procedure and on top of that,

sphincterotomy may actually cause the symptoms that it is trying

to cure and possibly result is CP (darned if you do, darned if you

don't type of thing).

But my husband is sick of me as I am so I feel compelled to at

least try to do something so I can establish the fact that I really

do want to get better (well, not me personally, just sick of me

being sick). We almost ended up at a hospital during our

vacation (in North Dakota where our insurance wouldn't have

covered me) and if that happened, I know our relationship would

have been strained. My second surgery occured during our

annual vacation 3 years ago and it ended up causing a lot of

unresolved resentment that I learned about a year later when he

was one foot out of the door (and of course, there is more to the

story - so don't blame him completely). So I am very determined

to make it through this procedure with as little disruption to our

lives as possible. A two week hospital stay for pancreatitis would

be a nightmare! As would doing it over and over again. Ugh.....

but I will not cross those bridges until I have to. But thanks for

the heads-up and the encouragment.

Laurie

[Guest guest]

Good morning, Laurie!

I hope I didn't scare you away from having an ERCP because of

the " flukey " thing that happened to my husband. This (nercrotizing

pancreatitis) happens. There are odds ... but think of it as my

husband was in this 'odd' category making you have the better odds of

having an uneventful ERCP!!!

If you can, talk honestly and openly with your doctor who will be

performing the ERCP. There were times in the hospital where

procedures were scheduled to be done, and my husband and I flat out

refused anything until we had consultations with those who would

perform these procedures. Yeah ... the doctor termed Barry as

a " type A " personality ... we always had questions written on a dry-

erase board in the hospital for the doctor EVERY day ... Barry even

had the nurses help rearrange the hospital furniture so he could

better move around with his IV pole!

Eventually, the doctor ended up enjoying us ... he even told us he'd

save Barry's daily visit for last because he knew he'd be bombarded

with questions. To this day, this doctor calls us at home to check

up on Barry's condition.

Write your questions and hesitations down on paper (otherwise you

forget to ask) .... let the doctor know you've been researching ...

seems the more knowledgeable you are on the subject, the more the

doctors don't try to 'take over' and keep you involved.

(Don't let them force an object too large into your pancreatic

ducts ... that might have been what caused Barry's condition. Don't

let them put the scope too far down and pull up fecal material ...

could create infection .... etc. Mention items so they know you

know!!!)

Hang in there ... don't fret ... and all will turn out well!

Warmly,

Beth