Re: What to do? What to do?

[Guest guest]

You probably cant have an ERCP. You can have a EGD which is how

they do the ultra sound and blocks and the like. If Rob Hawes is

reviewing your record it may take a little while. He is a busy

guy. Elain Rawls is the coordinator for that service and she

usually makes the appts. Give her a call and she if you can get

scheduled for an appt. I cant remember her number sorry.

Even with my working there and knowing all the docs so well it still

took time for me to get that initial appt. Be patient, I know that

is hard. Did any of the emails you got from cotton say what your

diagnosis is? Maybe if it didm you can print it out and take it to

your local doc and see if you can get something a little stronger

for pain control.

I feel very strongly that people in pain should receive meds.

Period end of story. It is absolutly ludicrous to suffer silently.

It does not make you a stronger person at all. Actualy it is bad

for your body. Pain interferes with your heart rate, respirations

tend to be shallow, BP goes up, there is a lack of sleep and just

plain old fashioned stress. All of these create a very unfavorable

environment for healing.

Was your bypass successful? How long ago was it? Well I hope I

have helped you just a little bit. If there is anyting else I can

do just ask.

Chrissy

[Guest guest]

Angie,

I contacted Dr Cotton at one time to see about him taking a look to

see what he could find when others didn't know what to do. I emailed

him and got a reply within a couple of days. After that email, I

contacted the number he gave me to arrange a time to see him. The

only reason I didn't go ahead with him was that meanwhile, a GI that

was baffled and wanted to see me get fixed, managed to get me in to

see Dr Lehman within a week, rather than having to wait around 6

weeks to see Dr Cotton. It was just that Dr pull that got me in

early. I think he might have been able to get me in to see Dr Cotton

earlier also, but my GI thought Dr Lehman might have been a better

choice for me as my condition was being caused by a weird cause and

he told me that Dr Lehman is the type of doctor who won't give up

until he finds the cause. Not that Dr Cotton might be any different,

but I didn't know either and was going on the advice by my GI.

I wouldn't hesitate to see either of them if I needed to again.

Sorry, back to the subject...When I called Dr Cotton's office, they

told me there was a 6 week wait until he could fit me in, and I was

able to referr myself. I just needed to mail or fax my medical

records to them and he would read them and if it appeared that i

needed to get in earlier, then he would try to see me sooner than my

appointed time.

Regards,

[Guest guest]

Angie,

A 3 cm. pseudocyst is generally not considered large enough to require any

treatment. With a pseudocyst that size, often any procedures to drain it would

be more invasive and more of a risk than leaving it alone to resolve on it's

own would be.

Pseudocysts DO cause additional pain, over and above that caused by the

chronic pancreatitis, so this may be an explanation for why you are in more

pain now, and finding that the Darvocet hasn't been working for you. Since it

is one of the weaker analgesics, an increase in pain medication, or

preferrably, a change in pain medication, would be optimal for you now. If

your specialist isn't willing to consider this and medicate you appropriately, I

would insist on a rererral to a Pain Managment Doctor who can help you get

your pain issues under control.

I used to have a list of Pain Management Doctors for the state of SC that was

given me by my application for membership in another pain support group.

As soon as I get off the MB here, I'll go through my personal files and see if I

still have this list, and will mail it to you offline if I do. It's not good

for you to be

without adequate pain medication, as it can cause additional stress on your

blood pressure and heart and actually worsen your overall health status.

As far as getting into MUSC goes, I'd be patient about that. They are a very

busy group of doctors up there and although you may be anxious and

wanting immediate results, I've never heard of them not responding to a

request once they get the time.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

South Carolina State Rep.

South Eastern Regional Rep., PAI

http://www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are from personal experiences or opinion only,

and should not be a substitute for consultation with your medical professional.

[Guest guest]

Hi,

I will second what others have said. You will need to be patience to

get in to see the Doctors at MUSC DDC. But belief me it will be worth

the wait. Dr. Hawes is great. Is your local GI pushing the referral?

I have been a patient of Dr. Hawes for more than 2 years. I do

remember that my initial appointment took 6 weeks or so and my local

GI was making the referral.

Do you have a local Pain Management Dr. That is an important thing to

have in Place.

Good luck with all of this. I am so thank-ful to be older (52) at

diagnosis, even tho I took 10 years to get the diagnosis ! It is a

disease that takes patiences!!

Love, Cyndi

[Guest guest]

I am hoping that my doc is going to help me out. He told me if I had not

heard from them by tomorrow to call him and he would call them back. He is a

very

caring and concerned doctor. He feels that he has done all he can for me and

that ton is the best place for me and is really pushing for me to go. I

am so thankful for him doing that. He called and talked to Dr. Hawes

personally yesterday and then called me himself last night. Not many docs take

the time

to do that.

Today has been a pretty good day. I have not had as much pain today. Isn't

it funny how some days are better than others. I always know exactly where my

pancreas is but today it is not screaming at me!

The gastric bypass was very successful. I lost 120 pounds and went from a

size 26 to a size 8. Now after pancreatitis I can wear a 6 and sometimes a 4.

Depending on how it is acting. I sometimes lost 14 pounds in 4 days when my

pancreas is acting up. Then I will gain a little back and then it goes down

again.

In October my doc got very concerned because I lost almost 20 pounds in 2

weeks. Of course, I had a hysterectomy and the pancreas didn't like that at all!

I am just praying that I can get my foot in the door! Once I do then I feel

that they can help me. Thanks for all of your advice guys! I feel so much

better knowing that there are others who understand. I felt so alone in this

before I found this group. You guys are a Godsend!!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Thanks ! My doc is trying really hard to get me in. But, if I don't

get anywhere I will call myself. It is good to know that there are others out

there who have been in my shoes!!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Heidi,

Thanks! That is what I feel, that if they can get my pain under control then

I would feel so much better. From day to day the pain is different. Of course

if I didn't have to eat I would be fine! My doc told me that I may just have

to wait for it to get worse before I can get help but if I can just get on a

treatment plan to help with the symptoms I would feel better.

Thanks so much for the advice and I would love that list if you can find it!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

I don't have a local pain manangement doc yet but that is next on my agenda.

I will talk to my doc tomorrow. He is really pushing to get me in with Dr.

Hawes. I can wait 6 weeks. I just want something to help in the wait time. I

would like to be able to get my foot in the door so that as this disease

progresses I can have my foot in the door.

I was diagnosed at 36. I am 38 now. So 2 years of fighting to get this far!

I was not that bad until last Sept. and it has progressively gotten worse

since then.

Thanks so much for your advice!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "