Re: Pain management

[Guest guest]

Andre',

I was curious what your pain management program is. I take Oxycontin 80mg

every 8 hours, Percocet 7.5mg for breakthrough pain, and when I need more I

put on a Duragesic patch as well.

Karyn

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

[Guest guest]

Karyn,

I am currently taking MS Contin 120 mg and MSIR for my breakthrough pain.

Next week they will be changing my pain meds from the MS Contin to the

Duragesic Patches but I am not certain at what dosage. Any experience with

this new medication? Can I expect the same level of relief from the patches

as I get from my pills? My pain management is poor as it is currently, can I

expect improvement in the pain control?

Your help in answering these questions would be greatly appreciated.

Andre'

[Guest guest]

Andre',

There is a philosophy that it is beneficial to change your pain management

program periodically. That is even if it is working, definitely, though, if

it isn't working, change it. I have been on MSContin and MSIR. I backed off

when I had surgery.

I used the Duragesic patches for a while. I started off with 25mcg and

progressed to the 75mcg. My experience was that I continued to have

significant breakthrough pain. I also had trouble keeping the patches on,

i.e., they would begin to lift off and air would get underneath them and dry

them out. I do keep them on hand and use them when I need something strong. I

think they are stronger than the Oxycontin. I have one on as we speak. I am

not sure if any of the other women on the list experience extra painful

periods, but I do. So on occasional months I need this extra pain relief.

I have a friend who does not have computer access. She has a port a cath or

some form of subclavian IV access. She uses IV Demerol at home with good

success. She feels like she has better control of the narcotics when she uses

something shorter acting than Oxycontin or MSContin. I have an appointment

with a new Pain Management Clinic (the first appointment is in April...that's

crazy). The reason I am switching is that they are in my PPO network and my

current one isn't. I am going to talk to them about placing some form of IV

access device so I can use Demerol or morphine at home.

I also think that the only way to achieve real pain relief is to completely

rest the gut. And the only way to do that is to not take anything by mouth.

Therefore, I am going to ask the doctor to allow me to have IV nutrition when

I am in a lot of pain. In advanced or end stage Pancreatitis, which I have, I

don't exactly have " attacks " anymore. Andre', you might understand. I am in

constant pain, but I know when my pancreas is acting up. I know when I need

to rest my gut.

Good luck,

Karyn

PS: Andre', where do you live? I live in Indianapolis.

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

[Guest guest]

gosh karyn...so you will have to deal with the chronic pain for the rest of your

life?? unless the medical community comes up with a procedure or transplant or

something else/?? is it difficult to find pain management clinics and doctors,

etc.. in indianapolis??? i live in the middle of nowhere and it is tough to find

specialists at all!! the emergency room dr. did say the reason he wanted to

admit me was to rest the gut...nothing by mouth strictly iv...but he told me if

i stayed on clear liquids for a few days it would get better....Lynn :0)

KarynWms@... wrote:

Andre',

There is a philosophy that it is beneficial to change your pain management

program periodically. That is even if it is working, definitely, though, if

it isn't working, change it. I have been on MSContin and MSIR. I backed off

when I had surgery.

I used the Duragesic patches for a while. I started off with 25mcg and

progressed to the 75mcg. My experience was that I continued to have

significant breakthrough pain. I also had trouble keeping the patches on,

i.e., they would begin to lift off and air would get underneath them and dry

them out. I do keep them on hand and use them when I need something strong. I

think they are stronger than the Oxycontin. I have one on as we speak. I am

not sure if any of the other women on the list experience extra painful

periods, but I do. So on occasional months I need this extra pain relief.

I have a friend who does not have computer access. She has a port a cath or

some form of subclavian IV access. She uses IV Demerol at home with good

success. She feels like she has better control of the narcotics when she uses

something shorter acting than Oxycontin or MSContin. I have an appointment

with a new Pain Management Clinic (the first appointment is in April...that's

crazy). The reason I am switching is that they are in my PPO network and my

current one isn't. I am going to talk to them about placing some form of IV

access device so I can use Demerol or morphine at home.

I also think that the only way to achieve real pain relief is to completely

rest the gut. And the only way to do that is to not take anything by mouth.

Therefore, I am going to ask the doctor to allow me to have IV nutrition when

I am in a lot of pain. In advanced or end stage Pancreatitis, which I have, I

don't exactly have " attacks " anymore. Andre', you might understand. I am in

constant pain, but I know when my pancreas is acting up. I know when I need

to rest my gut.

Good luck,

Karyn

PS: Andre', where do you live? I live in Indianapolis.

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

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Lynn :0)

" The kindness planned for tomorrow doesn't count today. "

---------------------------------

[Guest guest]

Karyn,

That is really amazing the similarities in our cases. And here I thought I

was all alone (smile).

I'm not really upset about the change in pain meds, if only it would give me

sufficient relief! I am not currently getting anywhere near the level of

pain relief now on the MS Contin and MSIR as I had when I was originally

placed on these meds so I guess it's a good thing to change. I, too had the

Duragesic Patches for some time. I was wearing them with the MS Contin

dosage and wasn't getting any long lasting relief from both of these drugs.

I too may ask about this IV stint to give myself pain meds intravenously. I

bet this is much more effective than the long acting MS and OxyContin.

Thanks for the suggestion. I will bounce this off of my Pain doctor on my

next visit next week. I'll let you know what happens.

It's amazing that you mentioned the difference between pancreas pain (when it

is acting up) and our everyday pains. I too can tell when it's my pancreas

or not so don't feel as if this is unusual. Unfortunately, I still get

attacks quite often and am in continuous pain 24-7 which makes this very

difficult to manage. Sometimes it's just like " background noise " , you know

you are hurting but it is in the background. Most times, however, it is

definitely in the foreground, but it is always with me.

I also cannot eat without causing myself a tremendous amount of pain. I have

not been able to eat anything other than Ensure for the past 3 months. While

my weight has been going up since I have stopped eating (Why, I don't know

but I gained 20 lbs since this has started), I have been getting weaker and

weaker with every day that passes and my doctor says that if I still am not

eating by the time of my next appointment (later this month), they will have

to consider placing a feeding tube in so I can continue to get my nutrition.

This scares me because I am desperately trying to remain employed and am not

certain how this will go over with my employer. Anyway, I'll keep you posted.

Andre'

[Guest guest]

In a message dated 1/7/00 3:44:41 PM Pacific Standard Time,

gr8mommie@... writes:

<<

i'm not sure but i think i read somewhere that weight gain and diabetes go

hand in hand??? has anyone else heard this?? Lynn :0)

>>

Yes, definitely. My brother is also living proof, as well as a client I had

at a previous job. I have heard this before, several times.

Jody

[Guest guest]

i'm not sure but i think i read somewhere that weight gain and diabetes go hand

in hand??? has anyone else heard this?? Lynn :0)

ACastenell@... wrote:

Karyn,

That is really amazing the similarities in our cases. And here I thought I

was all alone (smile).

I'm not really upset about the change in pain meds, if only it would give me

sufficient relief! I am not currently getting anywhere near the level of

pain relief now on the MS Contin and MSIR as I had when I was originally

placed on these meds so I guess it's a good thing to change. I, too had the

Duragesic Patches for some time. I was wearing them with the MS Contin

dosage and wasn't getting any long lasting relief from both of these drugs.

I too may ask about this IV stint to give myself pain meds intravenously. I

bet this is much more effective than the long acting MS and OxyContin.

Thanks for the suggestion. I will bounce this off of my Pain doctor on my

next visit next week. I'll let you know what happens.

It's amazing that you mentioned the difference between pancreas pain (when it

is acting up) and our everyday pains. I too can tell when it's my pancreas

or not so don't feel as if this is unusual. Unfortunately, I still get

attacks quite often and am in continuous pain 24-7 which makes this very

difficult to manage. Sometimes it's just like " background noise " , you know

you are hurting but it is in the background. Most times, however, it is

definitely in the foreground, but it is always with me.

I also cannot eat without causing myself a tremendous amount of pain. I have

not been able to eat anything other than Ensure for the past 3 months. While

my weight has been going up since I have stopped eating (Why, I don't know

but I gained 20 lbs since this has started), I have been getting weaker and

weaker with every day that passes and my doctor says that if I still am not

eating by the time of my next appointment (later this month), they will have

to consider placing a feeding tube in so I can continue to get my nutrition.

This scares me because I am desperately trying to remain employed and am not

certain how this will go over with my employer. Anyway, I'll keep you posted.

Andre'

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Please click above to support our sponsor

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Lynn :0)

" The kindness planned for tomorrow doesn't count today. "

---------------------------------

[Guest guest]

This is not encouraging but it was expected. I guess I will know more next

week when I make my initial visit at the Endincronologist.

Andre'

[Guest guest]

In a message dated 1/7/00 5:44:51 PM Central Standard Time,

gr8mommie@... writes:

i'm not sure but i think i read somewhere that weight gain and diabetes go

hand in hand??? has anyone else heard this?? Lynn :0)

[Guest guest]

In a message dated 3/13/00 9:10:25 AM Central Standard Time,

bluesuede3@... writes:

<< then my husband started taking them every 2 hours...he's now going thru

severe

withdrawal as i write this...he may just have an addictive personality...I'm

not sure >>

Hi Lorrie,

From what I have read drug addiction in patients with Pancreatitis is due to

a chemical dependence that occurs. I have yet to meet anyone who is suffering

from this disease who would trade life for Percocet.

A helpful suggestion that a psychologist recommended is to periodically alter

your pain management regimen. For example, I would take Oxycontin for a while

and then switch to MSContin for a while. That way I would alleviate the

possibility of my body chemically requiring any particular drug. I have also

switched out Duragesic Patches for Percocets. I have read research done to

support this.

I feel as though it has worked for me. That is why they call it a pain

management regimen. I will be in continuos pain for the rest of my life.

There are only a certain number of narcotics that have the potency I require.

I am not so much concerned with addiction as I am with my building up a

tolerance tot hem and them not working anymore.

Karyn

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

[Guest guest]

In a message dated 3/31/00 9:15:10 PM Central Standard Time, Nufrius@...

writes:

<< Don't accept the pain. Go to a pain clinic with your medical records

diagnosing the Pancreatitis. >>

<<Look for a GI man who specializes in Pancreatitis.>>

<<With pancreas divisum, no CT scan, MRI or even the amylase and lipase in

the blood test necessarily shows.>>

<<Life is short and we do not have to suffer. Don't!>>

Hi Fred, all,

Fred what you have said here is very important. There is absolutely no reason

that everything that can possibly be done be made available to us. It took me

quite a while to put together my team. The mutual consensus that they have to

have is to agree that my comfort and pain be appropriately managed, which in

turn has a direct affect on my quality of life.

Mt research has shown that with advanced Pancreatitis enzyme levels are no

longer able to be produced by the cells in the pancreas. Also, following an

acute attack, the levels may drop but that does not mean that your pain has

subsided. This is what most doctor's don't get. It is very difficult to

diagnosis congenital or hereditary Pancreatitis through tests. The bottom

line is that it is a very subjective disease. In my case, I was fortunate,

because I have such extensive calcifications on the pancreas and in the duct,

that it is known that this is associated with extreme pain.

Don't settle for anything less than for being kept comfortable. It is an

issue of respect and dignity.

Karyn

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

[Guest guest]

In a message dated 5/4/00 11:45:45 PM Central Daylight Time,

dhollis062@... writes:

<< Did I tell y'all my doc started me on MS Contin? What a relief! I still

have breakthrough pain but don't have to put up with that awful roller

coaster of pain--drugged--pain--drugged. He will probably increase the dose

next visit in June. Praise the Lord!! >>

Oh, Diane,

I am so happy for you. I know it is a relief that has been a long time in

coming! You certainly deserve it. I took MS Contin for quite a while and it

changed my quality of life tremendously. Did he give you anything for

breakthrough pain?

My new pain doctor, Dr. Lievertz, in Indianapolis, is one of the most

knowledgeable physicians I have ever met when it comes to pain management and

Pancreatitis. He recently put me on Actiq. It is an oral transmucosal

Fentanyl for my breakthrough pain. It comes in the form of a lollipop. I swab

it against my cheeks where it is absorbed. It has a better absorption and

quicker relief. I had never heard of it before told me about it. I would

suggest you ask your doctor about it. It is relatively new on the market. It

comes in a variety of strengths. The primary concern with this medicine is

that it looks like candy and needs to be safeguarded from access to any

children.

Again, I am so happy that you have finally gotten some relief from this pain.

And, yes, glory be to God.

Karyn

[Guest guest]

In a message dated 5/17/00 8:07:33 PM Central Daylight Time,

rechelleblair@... writes:

<< So for now, my normal doctor & I are going to concentrate on pain

management & control, so I don't have to run into the ER once or twice a

week. It's ridiculous. I have all the symptoms of Pancreatitis, I spent all

night & all morning today vomiting, which is very unusual for me. I can't

eat or drink anything without excruciating pain and intense nausea. I'm now

on Percocet for the pain control and Phenergan for the nausea. Sure hope it

works. >>

Hi Rechelle,

I am glad that someone is focusing on pain management and nausea control.

Those are the two symptoms that are the most debilitating for me. You may

want to encourage your primary doctor to refer you to a pain specialist. I

found that by the time I was at visiting an ER due to pain I was far past

anything my regular doctor felt comfortable in managing. There are many

alternatives to Percocet that primary doctors aren't aware of. When I finally

found a pain doctor that understood chronic Pancreatitis, he explained to me

the incredible complex nature of pancreatic pain. was a big instigator

to telling me about that. In addition to narcotics, it is necessary to

address the smooth muscle involvement, narcotics don't have an effect on

these. I am taking less narcotics now than before. The meds he uses to

control the back pain are Flexaril, Baclofen, and Neurotin.

Karyn

[Guest guest]

In a message dated 6/24/00 8:32:20 PM Central Daylight Time,

poncho9191@... writes:

<< While I don't have a specific

answer, I lean toward taking narcotics as soon as I think there is the

slightest need. I do this even to the point where I carry the meds with me

even for very short time periods away from home. If I begin to feel ill like

a Panc. attack, I take meds and go home. >>

i take mine with me too, poncho - just in case. i don't want to be out

somewhere away from home and start getting nauseated etc;.

debbie