I've missed you guys.

[Guest guest]

Hi everyone, >> >>I am definitely out of the loop here. I got back from having

my Whipple at Mass. General in Boston about 3 and 1/2 weeks ago. It was truly a

miracle that I didn't get sick for the whole 2 hours on the flight home. I was

discharged after 2 and 1/2 weeks in the hospital. The day before I was to leave

Boston, I had a follow up appointment with the surgeon. He pulled the last

drain I had in and said things went very well. That is his side of the story,

mine isn't so clean cut. >> >>(Just to sum up the last year for the new members

interested in my story.) After many unsuccessful hospital admissions, stent

placements, spinchtorotomies, ERCP's, Pancreatic Lithotripsy, etc. I was

referred to the pain clinic. In June they prescribed 40 mg. of Methadone to

help with the pain. I tried to wean myself off the Methadone before going into

surgery, as I knew the withdrawal was going to be hell. As soon as I began to

decrease I started having daily intense, short, very painful attacks. I only

decreased the Methadone to 30 mg. After my Whipple, the pain and surgical team

in Boston didn't give me any Methadone to help wean me. During my recovery in

Boston, my pain was under control because of the Epidural, anesthesia, and

Dilaudid, but I was vomiting and heaving multiple times a day, every day. I

couldn't eat anything. None of the doctors could agree with whether or not I

was experiencing Methadone withdrawal. I think I was/am. I am still

experiencing bad episodes of nausea and sometimes vomiting. The doctors and

nurses at the pain clinic (in Atlanta, who prescribed the Meth.) said because it

is a long lasting med, it could take over a month to metabolize the drug. The

metabolizing theory scares me, because it's not like I am working out and

sweating or urinating a whole lot. >> >>I am five weeks post Whipple now (which

I can't believe) and I am still having major nausea along with cramping,

horrible gas pains, some diarrhea. The pain that comes from heaving feels like

someone kicked me in my ribs, back and right where I always have that wonderful

pancreatic pain. I was amazed to see the incision, I thought I would have a

major scar, but it begins where my sternum is and goes down the middle to my

belly button. It is healing nicely, except for the part that acted a little too

sensitively to my heating pad. (Oops! My mom took away my heating pad, because

I am addicted to it). >> >>I really am grateful for the fact that I finally

feel like I am not having actual pancreatic attacks. Every day, I feel a little

stronger and a lot hungrier! (I hate saying that and knowing how so many of

you who have supported me and been so wonderful are suffering. This disease and

all the complications break my heart; I wouldn't wish this upon my worst enemy).

I know I still have a long road ahead of me and some say that the recovery can

be anywhere from 3-6 months. But I am doing the best I can, which is all anyone

can do. Some days are better than others, but I have to look at the big

picture. Am I better than I was prior to having the Whipple? Most

definitely.>> >>Although, I am longing for the day that I actually can eat a

whole meal, wake up without pain and nausea, exercise, get a job, etc. I want

to join the land of the living- people who dress everyday, drive a car (I

haven't driven in months), can go out for more than 30 min. without having to go

home because I am sick, play, kiss, and snuggle my nieces without worrying that

I am going to pick up a cold or virus from them, go dancing, and most

importantly find the love of my life. >> >>If anyone ever suggests you take

Methadone, run the other way. Coming off of it has been hell on my body and it

made my hospital stay longer than it should have been. I read that withdrawal

from Methadone is worse than coming off of heroin. Also, I gained about 25

pounds from water weight gain from the Methadone. Sexy, really? I weighed the

most I've ever weighed in my life and I have had some very porky periods. I was

so embarrassed that I couldn't tell anyone how much I weighed (my mom has me

weigh to make sure that my weight is stable and I adamantly refused to get on

the scale after reaching the highest weight ever for me). It made me sweat

profusely, too. I read a post from about her son, having to carry

around a diaper. I wasn't that sweaty, but I was wondering if he is taking

Methadone. >> >>Thank you to everyone that wrote and posted well wishes and

prayers on my behalf. You all of have been so great to me during this struggle.

Thank you to , Mehmet, and for writing to me personally. I was

touched to read each of your e-mails. I've been thinking about Kathleen and

hoping that she is doing well after her total. Also, has anyone heard anything

from Skip about his major operations? I am wondering if he is doing well. >>

>>, I am so sorry to hear that you are having problems again. You have

been such a bright spot for me, always cheering me up when I needed it. I hate

to hear how down you are. I hope you are making time for yourself on daily

basis, to decompress and not dwell on the bad moments. We all have our

moments…you are a very strong woman, you'll get through this, you're a survivor.

Don't give up now! That which does not kill us makes us stronger. I am

thinking of you and sending you feel better vibes, along with a big hug. >>

[Guest guest]

I'm astonished and very curious about your severe withdrawal reactions

to methadone, and truthfully, feel deceived, because one of my

doctor's told me that there were NO WITHDRAWAL SYMPTOMS from

methadone!! He was just discussing this as an alternative drug with

me two weeks ago, telling me how great it was because there were no

withdrawal symtoms. It makes me angry to find out that this isn't so.

And now here you are, just recovering from your whipple surgery and

having such a horrible time with withdrawal from methadone! It really

irritates me that he'd tell me this and then I turn around and find

out how untrue his statement was. I plan to mention this at my next

appointment, using you as an example, since I think he was trying to

get me to agree to switch from the Duragesic to methadone. I already

know what the withdrawal symptoms are from the fentanyl, since I've

experienced that already, and know that it's not fun to go through.

You sound as though your recovery is progressing well, despite the

problems with withdrawal. You just have to take it one day at a time,

and I know it's hard to be patient, but it's really the only thing

someone can do on the recovery side of any surgery. I had one surgery

where the doctor said it would take 8-10 months before I'd reach full

recovery and use of my knee, and he was right! (This was back in the

Dark Ages...lol!) Now they can do the same correction and the patient

is using his knee in 1 month. So the 3-6 months that your doctor says

it will take must seem like forever, but just think of the rewards at

the end!

I'm glad that you're home and that your surgery went well. Keep us

updated on your progress whenever you can.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

SC State & SE Regional Rep.

PAI

Note: All comments or advice is based on personal experience or

opinion only, and should not be substituted for professional medical

assistance.

[Guest guest]

I've been on and off methadone several times (for my post herpetic

neuralgia, not my pancreatits) and it never did much of anything when

I was tapering but give me mild flu like symptoms. Now, my Demerol

withdrawl-goodness, I think I nearly ax murdered my entire family

coming off of that stuff!!!Everybody has a different metabolism,

unfortunately we have to find out by trial and error-at least until

they have better testing (some genes testing can show how we will

metabolize some drugs, but its limited and expensive at this time).

Margaret

>> >>If anyone ever suggests you take Methadone, run the other way.

Coming off of it has been hell on my body and it made my hospital stay

longer than it should have been. I read that withdrawal from

Methadone is worse than coming off of heroin.

[Guest guest]

Hi Heidi,

was on methadone five years ago when he had his first year of

pancreatitis - the withdrawal took forever because the doctor dropped

his dose very little because of severe withdrawal fr om that drug.

Even so, every two weeks he suffered for at least two days when they

bumped the dose down. He is on it again and knows he is in for a

long withdrawal again, if and ever the day comes that he doesn't have

pain. He understood the fact that it is a very safe drug to take

when you are on long term pain meds. I can't believe your doctor

would tell you there was no withdrawal from it - it was nasty!!! If

and when the time comes for you- make sure you go off very slowly.

is still having a bad attack - day five. I don't know how

much longer he'll manage without an ER trip that he is trying so hard

to avoid.

Good luck clearing up the methadone mess with your doctor. Sorry

you were mislead.

>

>

>

>

> I'm astonished and very curious about your severe withdrawal

reactions

> to methadone, and truthfully,.

[Guest guest]

Hi Heidi,

I can't believe that your doctor told you there was no withdrawal.

I had a pain clinic doc completely blow me off about trying to wean

off of it. I was so scared about coming off of it, even without

reading all the information on the net. I knew deep down that it

was going to cause a problem in terms of my post surgical hospital

admission. Sure enough. Strangely, it began with a strange string

of 3-4 sneezes. At first, I thought I was allergic to something in

the room in Boston, but when I came home, I was still doing it.

About 2 weeks ago, my mom went online and found a list of withdrawal

symptoms, the first one was sneezing, which is strange to me.

Anyhow, sneezing isn't so bad, but the nausea, vomiting, and heaving

that sends me into pain is nothing to write home about.

If you do decide to take it, please make sure that your doctor will

wean you off properly. I believe mentioned that her son was

given another drug to help him get off of it, without bad side

affects. Research it online, if you haven't already. I don't know

how good it would be to get it from a doctor who believes that there

are no side affects or withdrawal. My whole trust of doctors has

completely been taken away. Not just through this experience, but

the many others I've had this past year. Also, I put on 20 pounds

of water weight gain from it. We found posts about that, also.

Thank g-d its come off, I was thinking damn I've been eating a whole

lot of Lucky Charms and Gatorade. Anyhow, it was all part of the

evil Methadone.

I had a Dirgusic patch this year and they weaned me off of that. I

guess with any opoid you have to be weaned or else you could get

into trouble. I am now taking Roxicet for pain. I had been on

Roxicet in Jan/Feb when I had my feeding tube in. I would put the

liquid right into the tube. I didn't have any side affets from

getting off of it. And Dilaudid, they would give that to me IV in

the hospital and they'd disconnect the IV and discharge me in the

same day, no weaning. I guess everyone reacts differently, but if I

can save you from the pain and hell I experienced than I've done my

job.

Thanks for all you sweet thoughts about my recovery. I am doing so

much better with the pain, I just hope my nausea responds to

something, because it is making me loose my mind.

I hope your dad (I thought I read that you were going to help your

parents) is feeling better. I can't remember too clearly, but I

remember that something was going on with your family. I hope

things are better.

Take care,

>

> I'm glad that you're home and that your surgery went well. Keep us

> updated on your progress whenever you can.

>

> With love, hope and prayers,

> Heidi

>

> Heidi H. Griffeth

> SC State & SE Regional Rep.

> PAI

>

> Note: All comments or advice is based on personal experience or

> opinion only, and should not be substituted for professional

medical

> assistance.

>