Re : Can't take much more

[Guest guest]

Hello Andre,

I'm so sorry you are feeling so ill. I'm in the UK so I'm up and

about already and your post has just appeared.

I don't pretend I know aht to say to you aprt from offering my

sympathy and support. Of course I have read your posts before but

I'm afraid I can't remember details at the moment so forgive me if

you've already said everything I'm going to refer to.

Would it be possible for you to ask for a period of hospitalisation

so that your panc specialist could evaluate your condition while you

are actually under his/her care? They would be able to monitor all

aspects of your pain, diet, medication/enzyme regime etc. etc. with

you actually there before them. Sometimes they don't believe or

accept what patients say is happening to them but if you were under

their observation, all would be clear. I don't know if that is a

real possibility. I assume that you have a pain meds regime, an

enzyme regime and a low-fat and no-alcohol diet already?

Do you actually consult a pancreatic specialist as such? I assume

you do because you've had surgery. If you decided just to consult Dr

Sutherland, that would give you another insight into your condition,

whatever the outcome. He would give you a whole evaluation of your

situation whether or not he felt the TP/ICT was right for you,

wouldn't he? You might find that helpful in itself.

I think you certainly need somebody to talk to who will accept your

problems and negotiate an amended regime or a new treatment plan.

You shouldn't have to put up with bad pain etc. without help.

I'm sure others will have more useful things to say. Please don't

lose hope. The disease does seem to go through different stages as

well and things could improve spontaneously. I do hope you feel

better in the morning. If you're still on-line feel free to e-mail

just to " vent " if you want to.

With very good wishes,

Fliss (UK)

[Guest guest]

> Hello Andre,

> I'm so sorry you are feeling so ill. I'm in the UK so I'm up and

> about already and your post has just appeared.

> I don't pretend I know aht to say to you aprt from offering my

> sympathy and support. Of course I have read your posts before but

> I'm afraid I can't remember details at the moment so forgive me if

> you've already said everything I'm going to refer to.

> Would it be possible for you to ask for a period of hospitalisation

> so that your panc specialist could evaluate your condition while

you

> are actually under his/her care? They would be able to monitor all

> aspects of your pain, diet, medication/enzyme regime etc. etc. with

> you actually there before them. Sometimes they don't believe or

> accept what patients say is happening to them but if you were under

> their observation, all would be clear. I don't know if that is a

> real possibility. I assume that you have a pain meds regime, an

> enzyme regime and a low-fat and no-alcohol diet already?

> Do you actually consult a pancreatic specialist as such? I assume

> you do because you've had surgery. If you decided just to consult

Dr

> Sutherland, that would give you another insight into your

condition,

> whatever the outcome. He would give you a whole evaluation of your

> situation whether or not he felt the TP/ICT was right for you,

> wouldn't he? You might find that helpful in itself.

> I think you certainly need somebody to talk to who will accept your

> problems and negotiate an amended regime or a new treatment plan.

> You shouldn't have to put up with bad pain etc. without help.

> I'm sure others will have more useful things to say. Please don't

> lose hope. The disease does seem to go through different stages as

> well and things could improve spontaneously. I do hope you feel

> better in the morning. If you're still on-line feel free to e-mail

> just to " vent " if you want to.

> With very good wishes,

> Fliss (UK)

Thanks, Fliss for your kind words of support and helpful

suggestions. I guess I should have given more details on my

condition but forget, at times that others may not be aware of my

history or remember previous, intermittant posts I've made in the

past concerning it. I'll try to be brief, if possible so

here goes...

I have been sufferiing with Pancreas Divisum ever since I was 16

years old (am now 52 yr old) but was only given a diagnosis in 1990.

Previous to this date, as you can imagine, I was put through just

about every test/procedure known by the medical profession and have

had 8 different surgeries to correct the problem. This excludes the

various attempts at stent placements and and other non-surgical

procedures performed by anesthesiologist (such as nerve blocks etc.)

Nothing seems to work in my case as, with each attempt at seeking a

resolution to this debilitating problem, I have found that I have

gotten progressively worse. Some of the surgeries I've had in the

past include:

1)Gall Bladder Removal

2)Removeal of 6 inches of small bowel

3)Thoracic Sympathectomy (removal of the nerve(s)connected to the

pancreas

4)Duval Procedure

5)Peustow Procedure

6)Whipple surgery

The best results I've ever had lasted about 3 years but when the

pains returned, they did so with a vengence; as if it had to make up

for lost time. The last 2 surgeries were performed at Mass General

Hospital by the Chief of Surgery for Harvard Medical School, a Dr

Warshaw who is reknowned for his surgical procedures and the success

he has had with them. Nothing, however seems to have any lasting

effect and I am at my wits end and feel I've come to a portion of my

life that I either have to accept my condition for what it is or, I

don't know what...

You also mentioned going to a Pain Management facility. Well I have

been going to one for the past 7 years (6 years at one facility and

now am going to another one closer to home this past year or so).

While I was getting a modicum of relief on a variety of opiates, this

too seems to no longer offer me the same level of pain relief and I

do not wish to continue increasing the dosages for fear of not being

able to manage the pain if, for some reason I were to get worse, such

as cancer. Currently, I am taking Methadone for the pain (I used to

take the fentynal patches-Duragesic, MS Contin-120 mg, and MSIR for

breakthrough pain). However, now that I've changed clinics my new

doctor

feels I had been on this regimine for far too long and that is why he

switched me to the methadone, which is much less effective. I still

have quite a bit of MS Contin left over from my previous pain clinic

and have been taking them when the pain is really out of controll;

something that has been happening with increasing frequency the past

several months.

As for your suggestion about being hospitalized, I really don't see

how this will help since they know why I am having this problem-due

to my Pancreas Divisum, and I seriously doubt that they will be able

to offer me anything other than " resting " my pancreas which I now do

on my own by fasting for several days/weeks. Usually, this helps

somewhat but lately this too has been less and less effective. It's

almost as if my body is adapting to whatever I try to do in order to

relieve the

agony I have and hitting me from another direction, if I'm making any

sense (remember,I'm operating off of perhaps 3 hours sleep over the

past couple of days so my brains are a bit mushy).

I am so frustrated at this point I don't know what I'm to do but

living much longer like this is not a viable option at the present.

I guess my story is just like most of the stories from others within

the group and feel a bit badly for complaining about my problems like

this. But last night I had gotten so frustrated and down over

how my life has turned out that, I guess I just had to vent to

someone.

I do go to my Pain Management Clinic tomorrow, but hold out very

little hope that a resolution to my problems will be forthcoming,

thus another reason for my level of frustration continuing to rise.

Fliss, thanks for responding so quickly to my post and offering such

helpful suggestions for my care. However, there is very little that

I haven't tried or been put through, with very little, if any succes

to report, unfortunately... Thus, I am considering my final option;

that being Dr Sutherland and his total pancreaectomy/islet cell

transplant surgery. I've just come from printing the handouts from

the PAI Conference this past August and will see if there is anything

there that I might be able ot present to my doctors as a solution to

my current condition.

Here's hoping yopu are having a pain-free day as you, as well as all

of us, truly deserve some peace for a change...

Andre'