Major occurrence in my health battle

[Guest guest]

Hello All! I hope this message finds you all feeling stronger, healthier and

more at peace. I know many of you are suffering terrible pain and hardships.

I hope you all have a special place deep within you where you can go to get

the Universal Love and Nurturing we all need.

I want to thank Jerry big time! He recommended a couple of hospitals in the

Raliegh-Chapel Hill area including UNC Chapel Hill Hospital. Chapel Hill

turned out to be exactly what I needed.

OK. Sunday last week I started having pain issues real bad. So by Tuesday I

was ready to go and the wife drove me up to Chapel Hill and got me in to the

ER. The ER got me in, quickly and triaged me. My blood sugar was poor (780)

but I was not in DKA. I had really bad pain. I explained my history to them

and so on. I got sent up to the floor. I was seen by an Endocrinologist

Fellow who got my blood sugar under control within a few hours. Then he

modified things and the plan he put me on has kept things very well under

control. Awesome.

So on to the Gastro Docs. They came and talked to me and sent me off for an

MRCP. I had that and they said " we see things we think maybe are causing you

problems. It looks like you have some narrowing in one duct, and you have

dialeted, swollen looking biliary trees " . They needed to do an ERCP. They

said that if what they think is going on they will be placing a stent to

open one very narrowed duct. Now the deal is since my total pancreatectomy

no one has ever found anything wrong. So much that some doctors have accused

me of drug seeking. Well now here these doctors seem to be stumbling on to

something substantial.

In the ERCP they had to go in one time with an upper GI scope because my

anatomy does not map out normal anymore as there is a very long anastamosis

from the stomach to the liver. So they go in with the scout scope and get

things mapped out. Then they go in with a pediatric ERCP scope because I am

all tight from lots of narrowing. They get to the bifurcation where they saw

the narrowing on the MRCP and yep, way narrowed. They insert a balloon and

inflate it open to open up the duct and guess what? Tons of debris and

STONES come out! They cleaned that all out and they went in with an even

bigger balloon and even more stones and debris comes out! They clean that

section out well and then they put a stent in. They went on to some other

spots and they removed some more debris and more stones! Now I had been on

the table for an hour and the procedure was very aggressive. They had used a

lot of sedation medicine on me and I had started fighting with them to get

up. I was in terrible pain. So they figured this was a good spot to stop.

I will go back in the end of Jan. to have the stent removed and have them

check for more stuff to clean up or stent.

No of us can believe with the amount of debris and stones in me that no one

ever noticied before. I am going to get in touch with a lawyer, I might have

the right to sue for malpractice.

Anyhow it is believed that I will now make a complete recovery back to

NORMAL. I already feel so much better.

Now they sent me home on a 60 day dose of Methadone to handle the pain while

I heal up. Methadone is super strong and very long lasting. I have heard it

varies from person to person on how long it stays active. It seems to stay

active for three days for me. So the dose I was sent home on was too strong

and after a few days of taking it, it built up in my system to a very high

dose, and I was pretty much a useless stoned person. But I dropped my dose

down and am coming around again. Do any of you use Methadone for your pain?

I'd love to hear about your experiences with it.

Well I wanted to share that suddenly I found a group of doctors that were

able to find and remedy a problem. And it looks like I am going to be making

a full recovery and getting back into work and normal life!

Thanks and blessings all,

Bert Bolin/NC

--

" What we do in life echoes in eternity. "

Maximus Decimus Meridius

[Guest guest]

First Bert good to hear that you are doing better.

> In the ERCP they had to go in one time with an upper GI scope because my

> anatomy does not map out normal anymore as there is a very long

anastamosis

> from the stomach to the liver. So they go in with the scout scope

and get

> things mapped out. Then they go in with a pediatric ERCP scope

because I am

> all tight from lots of narrowing. They get to the bifurcation where

they saw

> the narrowing on the MRCP and yep, way narrowed. They insert a

balloon and

> inflate it open to open up the duct and guess what? Tons of debris and

> STONES come out! They cleaned that all out and they went in with an even

> bigger balloon and even more stones and debris comes out! They clean

that

> section out well and then they put a stent in. They went on to some

other

> spots and they removed some more debris and more stones! Now I had

been on

> the table for an hour and the procedure was very aggressive. They

had used a

> lot of sedation medicine on me and I had started fighting with them

to get

> up. I was in terrible pain. So they figured this was a good spot to

stop.

>

Bert this identical to what they have done to me, three times. I mean

identical. They told me because of my biliary tree was so narrowed and

delicate that they could no longer do any more dialations. I had that

roux-en-y done after the cyst removal. I now have to have general

anaystesia done.

Do any of you use Methadone for your pain?

I am currrently on 30mg x 3 of methedone a day. It is working really

well. I went from the patch a year ago to methedone. The only side

effect is sleepiness.

Walt

[Guest guest]

Hey bert after re-reading. I should say identical except for minus the

stent. I did not have a stent place because of the delicate (GI words)

of my biliary tree.

Walt

[Guest guest]

Hey now that I am a bit more awake...I had a total of 9 ERCP's done.

With 3 identical to what you have had done. The last one was the last

due to problems with my biliary tract wall being very thin. They tore

it during the roux-en-y in sept. 2000.

There is a medicine I don't remember the name of it but it disolves

the stone of the gallbladder which also disolves the the stone that

are formed in the biliary tract. I will be going back on that in the

future if I have any further problems.

So far I am doing OK my pancreas does act up more often lately though.

I do have better control over my blood sugars. I am gratefull for lantus.

Walt

[Guest guest]

Wow Bert! This is incredible news. Your living my fantasy of actually

finding doctors who find something and do something effective about

it!!

Good for you!!

Eileen

[Guest guest]

Hi Bert,

I am so sorry to hear about your not feeling well. Your story about

finding all those stones and getting them removed blew me away. I

am sure you are hurting. Every time I was stented and they tried

(unsuccessfully) to remove my stones I had to be hospitalized

afterwards. My thoughts are with you.

You were kind enough to allay my fears about pain after my Whipple

surgery. I will be post Whipple exactly 5 weeks on Thursday. You

were right about the pain, it wasn't really an issue. I had an

epidural and the anestheia stays longer in the body, the younger one

is, so I was covered. I am debating with my mom on whether or not I

had a PCA. We think I did. My issue in the hospital was nausea and

vomiting. My admission was longer due to the Methedone withdrawal

and the issues I was having from that. No one thought to give me

something to help with the withdrawal process. I guess that wasn't

their main concern.

I had awesome nurses at Mass General. They were so nice and took

great care of me. The day after my surgery they had me get out of

the bed and I still had the epidural in. When I stood up, I fell,

grabbed onto the IV pole and took that down with me and hit my nurse

in the head with it, as I took her down with me too. What a mess.

Anyhow, the pain has really not been a major issue for me, nor was

it in the hospital as you told me. Thank you.

I really hate to say this, but I had a horrendous time getting off

the Methedone. It did help with my pain issues, although it made me

horribly sweaty and (as I recently found out) it made me gain about

20 pounds! I thought I had just put on a whole bunch of weight from

eating Lucky Charms and Gatorade, the 2 staples of my diet during my

last 5 months of having daily Pancreatic attacks. My mom was on

line looking up Methedone withdrawal information and she found out

that a whole slew of people were complaining about weight gain. I

was so relieved. I am pretty petite (5'2 and 1/2 " to be exact) and

I was so embarrassed to tell my mom (who was making sure my weight

was stable) or anyone else how much I weighed. Even my 92 year old

grandfather (who just doesn't act like he used to, rarely speaks, we

think he doesn't really notice what is going on) mentioned to my

grandmother that I was the largest he's ever seen! When I told my

dad how much I weighed he said, " no wonder the coach from the

Falcons called looking for you " . Ha, ha.

Anyways, don't stress if you start to put on a little weight, it

will come right off.

I had posted a few days ago and wrote about my experience with

Methedone. Getting off of it was worse than the pain from the

Whipple. If you research it on line, some rehabs say that it is

worse than getting off of heroin. Promise me that you will stress

to your doctors that you want to be weaned off. I was blown off

about my fears of withdrawing before I went to Boston. I believe

that (her son has been on Meth) knows the name of a drug

that will ease the withdrawal, also mentioned marinol/pot

to help get through the withdrawal. I went through such a tough

time to help both you and Walt (hope you are reading this) have a

better experience than I did with this hideous drug. I know that a

lot of doctors may poo-poo the withdrawal process, but it is real.

I am going on my 5th week without it and I am still having nausea,

heaving, and vomiting from it. It doesn't need to be that way. I

don't want you to suffer anymore than you already have, there is no

need.

I am praying that my message helps at least one person in this

group, as you all have said and suggested things that have helped me

get through this tough year. I am blessed to have found such a

caring, wonderful group of people.

Big hug! Here's to a speedy recovery, Bert.

[Guest guest]

Hey Bert-isn't Chapel Hill great! That's " my " hospital, too. And they

got my cousin off of TPN when everybody else thought it was

impossible. Its a 3 1/2 hour drive from here, but its worth it.

Margaret, also in NC

.. Chapel Hill

> turned out to be exactly what I needed.

>

[Guest guest]

Bert,

that is so wonderful to hear that they cleared up all that debris and

stones. No wonder you were in so much pain. I take Methadone, but they

started me off on a low dose and slowly upped it as I needed it. I've

never actually timed it to see how long the meds stay with me, but I

know that I don't get any withdrawal symptoms for several days. As my

pancreatitis is chronic and unlikely to ever be cured (panc is a hard

shrunken ball and totally useless) and I don't qualify for at TP/ICT as

I've been diabetic for over 20 years, I'll probably be on Methadone a

long time.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

,

Actually I am feeling very good . I was sore in the belly regions where

they jabbed me with the scopes for a few days but it was not bad. It was

nothing like the pain you have when you have a pancreas and you get

pancreatitis following an ERCP. So, I was in great shape honestly. Now,

during the procedure I feel sorry for the team because they had to really

force the scope in, press hard on me, I was on strong drugs, and this wore

me down and dazed me. The result was the last 10 minutes of the test I was

fighting back trying to get up, take the tube out. Since they held me down

and would not let me get up I started to fight with them some. They said

they have experienced that before, they understand it, and they consider it

normal when its this complicated.

I would not be suprised if you had both a PCA and the epidural. I had both

after my total pancreatectomy. Actually, I only had an epidural but once I

woke up I went into horrible pain spams and they added to the PCA. I needed

both.

Methadone is a very strong, very complicated medicine. I do not think many

doctors understand it as well as they think they do. I have recently begun

research on it and have read many cases where heroin addicts that really

wanted to break free of drug addiction found themselves addicted to

methadone. Many have said they beat heroin fine but were helpless against

methadone.

One thing though I think that will help me in not getting addicted is that I

am only going to be on the medicine for a 60 day trial. I will taper down in

20 days, then again in 20 days. So 3 20 day periods where medication

frequency and stregnth is changed.

I will also not have been on it that long. I will not have been in a

situation where I am using out of control. These things make it different

treating pain management issues versus drug addiction issues.

What I really loved hearing was that my primary doctors believe that now by

locating and removing all those stones and debris I have a really honest

shot at making a full recovery. I am frustrated that no other doctors could

locate this large collection of debris. No one knows when these stones came

into existance, it is not known under what part of my disease history they

came to be. But in any case someone should have been able to find this

stones and remove them.

Thanks for all your words of encouragement and help , and to Walt, and

to Heidi. And to anyone I missed! Thanks!

Peaceful dreams!

Bert/NC

--

Sin lies only in hurting others unnecessarily. All other " sins " are invented

nonsense.-- Heinlein

[Guest guest]

How wonderful! I am so excited for you that they finally got some relief for

you. God is good!!

I hope you continue to do well! I am having surgery again Dec. 1st. My

second pancreas surgery in 5 months. This time they are doing the beger, maybe

the

whipple. They won't know until they start on me if they are able to save the

duodenum. I am at the point that it is fine, if they can just relieve my pain.

My doc says I am a good candidate for the total but he is trying to buy me

time until I they are reproducing the islet cells, since mine are already

damaged.

Be well!

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]

Kimber,

I was not on any pain medicine at home. When I was admitted this time to the

hospital the crew worked hard to get me comfortable. They didn't just give

me a dose and go away like most places do it. They gave me medication, asked

me questions, talked about things, adjusted it, and repeated this process.

They settled in on a 4 mg. dilaudid IV dose q four hours for the first 36

hours then as I felt better started moving down. After a couple of days I

was put on methadone, 5 mgs. 4 times a day. That was then titrated up to

15mgs. 4 times a day which was what I was sent home on. Now, it seems a tad

strong because if I am the slightest be tired or sleepy I will fall alseep.

I could be in a chair reading a book, and pow! ZZZzzzzzz. I would think

because of half life of methadone, its cheap cost, and ease of finding a

someone who will manage you on that medicine that methadone would be an

excellent pain management drug. It is just important to have a doctor who

really knows how to use it. The typical bravado that most doctors show will

do more harm than good here. They need to understand this drug. Any pain

management drug where a patient is on it long time and consistently and who

is on it for quality of life issues deserves a real professional on the

team.

--

" What we do in life echoes in eternity. "

Maximus Decimus Meridius

[Guest guest]

I think it is awesome you doctor is considering waiting on the Total

until they are reproducing the islet cells especially if you have

damage already. I say this because I was non-diabetic and had a large

amount of beta cells available for harvest. But because of

difficulties in the surgery they were only able to get about half as

many as they wanted. I had a lot of problems with the beta cells

working well after the surgery. I think there is more to be learned

and enhancements to be made to the surgery before it would be

effecient regarding beta cell transplantation. So your doctor is aware

of this, this is great.

I am so sorry you must endure so many surgeries. I think having known

now what I know about my bizare situation I am not sure if I would

have opted for the total panc, or for a whipple, or for anything. I

just don't know. I do know that someone, or maybe many someones failed

to provide to me good care. For all we know my problem was the mass of

stones and debris that no one else seemed to seem or tried to remove.

I just know this: the pancreas is a very personal organ, the disease

of pancreatitis is very individual, and each person has their own

special rode to walk.

Hope you are feeling well!

Blessings,

Bert/NC

>

> How wonderful! I am so excited for you that they finally got some

relief for

> you. God is good!!

> I hope you continue to do well! I am having surgery again Dec. 1st. My

> second pancreas surgery in 5 months. This time they are doing the

beger, maybe the

> whipple. They won't know until they start on me if they are able to

save the

> duodenum. I am at the point that it is fine, if they can just

relieve my pain.

> My doc says I am a good candidate for the total but he is trying to

buy me

> time until I they are reproducing the islet cells, since mine are

already

> damaged.

> Be well!

> 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]

Bert,

I am so happy that you are feeling better. Keep up the good work.

I had the same experience of fighting back with the staff during my

last ERCP. They had 5 people holding me down and of course, I

didn't remember any of it. Nor do I remember crying because I

couldn't find Oprah on the TV the day after my Whipple. And now we

have confirmed, I had both the Epidural and the PCA, as promised.

Thank g-d.

You are right about the newness of Methadone, but I just assumed

(and I know where that will get me) that the pain people knew more

about it, because of it being used to get people off Heroin. I

don't understand what is so great about it, I never, ever felt high

off of it. It strictly took away my pain. So what is all the

rage?

I was really scared to read about your experience, because I too

have Pancreatic Stone Disease. I am wondering, what will happen if

I begin to form stones again (with my new system). I really don't

want to hear any bad news about this, if anyone knows. I'd rather

live ignorantly, until made to do otherwise.

I really hope that I was more of a help than a harping, preaching

pain in the a--.

I just want everyone to be well and pain free.

[Guest guest]

Bert,

I've got a specialist AND a PCP who are both following it. The

specialist is a neurologist, and he has a decent idea of what it means.

I'm at end-stage chronic pancreatitis and I'll most likely be on

painkillers for the rest of my life unless there is a cure (I'm on 35,

so that's a long time for me). We did talk about if for some reason I

got cured, we would step me down slowly on the methadone to keep me from

having withdrawals. This was something that was also addressed in my 10

week pain management class that I had to take as part of my being in the

pain clinic.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.