Criteria for TP/ICT

[Guest guest]

,

You wrote, " Do the doctors usually try other things first so the TP is

a last resort or is it reasonable to assume someone as young as Chris

could have it done before he goes through years of pain?â€

That is an excellent question. Many people do feel it is a 'last

resort' option, especially since it is major surgical procedure with

serious potential complications; unfortunately, chronic pancreatitis is

a serious catastrophic disease with major complications. Additionally,

chronic pancreatitis is debilitating, deteriorating, disabling, and

progressive. Therefore, it is necessary to consider all possible

options and seek a course of treatment that will enable you to achieve

the highest quality of life possible. Many people feel that risk of

developing surgically induced diabetes if there are not a sufficient

number of islet cells harvested is just not worth it. They do not feel

they are that 'bad' yet.

I was diagnosed late in the disease process and underwent a Distal

Pancreatectomy on recommendation of my GI and surgeon. I was not

informed about the option of a TP/ICT. I went into surgery insulin

free. I came out of surgery insulin dependent. The American Diabetes

Association classifies diabetes as either Type l or Type ll. I really

feel that pancreatitis related diabetes is an entirely different type

of diabetes. Managing blood sugars is complicated by digestive and

absorption irregularities. End stage chronic pancreatitis and death is

generally related to diabetes complications. It is very serious. If

there is any possible way to avoid obtaining the disease, speaking for

myself [iMHO], I would do anything I could do. Pancreatitis related

pain and nausea do not compare to the difficulty of managing the

diabetes. Maintaining stable serum blood glucose levels of 80 to 120

and an A1C of <5.5 consumes my day. I check my blood sugars 8 to 10

times a day or more. I take an injection of insulin every time I take a

bite of food (or eat). I count carbohydrates, fats, proteins, the

glycemic index, sugars. What is difficult is that often times the only

thing I can eat that doesn't make me sick or cause me pain will cause

havoc on my blood sugar.

This post was not intended to be about diabetes; I wanted to emphasize

the gravity of the choice people are making when they turn down the

possibility of transplanting islets into the liver and avoiding a

disease I consider far worse than pancreatitis. Again, this is IMHO, so

I am sure the board will be flooded with people sharing their

experience that living with diabetes is not that big a deal.

Unfortunately, diabetes is also a progressive disease. When I was first

diagnosed with diabetes, it wasn't that big a deal either. It certainly

wasn't worse than my excruciating pancreatic pain.

At any rate, I did want to say that [iMHO] the TP/ICT isn't an option

for everyone. Though being insulin free is a criteria, after observing

many people who did have the TP/ICT, the quality of life they have

achieved and the post operative complications do seem to have a direct

correlation to the time since they were diagnosed. Of course there are

exceptions. From the initial onset of the disease, and by nature of the

disease process, damage is occurring to the pancreatic tissue, which

obviously includes islet cells. The one variable is the primary

location of the damage, i.e.; the majority of the islet cells are

housed in the tail of the pancreas. Therefore, it is plausible that a

sufficient number of islet cells could be harvested even in light of a

prior Whipple.

Many persons feel that the TP/ICT is worth it even if there are not

enough islets harvested just to achieve pain control. My only thought

on this is that it is important to remember that as the disease

progresses, damage to the neuropathic fiber pathways occurs,

particularly to the spinal neurons innervating the pancreas. Removing

the disease pancreas will not resolve this neuropathic pain. This has

been disappointing to several post TP/ICT patients.

If I was newly diagnosed today, I feel that an informed healthcare

decision would be to seek a TP/ICT as soon as possible. Of course,

there is still limited data available. I believe that DeeDee's

daughter, Kristy, holds the record for the least amount of time that

has lapsed from diagnosis to surgery. She was diagnosed in June 2004

and had the TP/ICT February 2005.

Please know that my prayers are for each and every person who has had

this surgery, as it is for anyone who has pancreatitis. Though I have

stated my opinions regarding the progressive nature of this disease, I

do believe in miracles.

Karyn E. , RN

Executive Director, PAI

Pancreatitis Association International

[Guest guest]

Hi Jean.

I have had a TP - but no ICT as it's often not done in UK. That was back in

August, 2000.

I had a partial pancreatectomy first - tail of the panc, but still had pain,

so went on the have the TP. I made exactly the right decision and have never

regretted it. Even being diabetic is much better than how things were before.

Sue (UK)

[Guest guest]

Dear Kayrn,

You have me more confused than I have been already concerning this

surgery.

Are you saying that is it had been offered to you that you would not

have had it? Does that also so for the pancrectomy? Do you feel

that you are worse off being a diabetic than having pancreatitis or

do you still have it just as bad even without having the pancreas?

If any of the ones who have had either the TP/ICT or the pancreas

totally removed worse now than before? Would you do it again? Are

you all in as much pain with out the pancreas as you were with it?

I guess that is a lot of questions, but I am trying to figure this

whole thing out. I had come to the conclusion that it was the right

procedure to have and now I have great doubts where it is concerned.

Wishing a happy day to all,

Jean

[Guest guest]

Hi Sue,

I think what worries me more than anything is the fact that

does not go to a specialist, wont see one. She only goes to one Dr

when she needs her pain meds renewed. She has not had a good dr for

ever so long. She just gave up and decided to just stay at home and

take pain meds all the time, which you and everyone else on here

knows is not the answer.

How do I convince her of that? I dont know what to do anymore.

Maybe I would be better off to just quit trying and let things go as

they are. I just dont know. I do know that she shuts herself up in

their house, never leaving except to go to that one dr. It is no

life for her, it is absolutely no life for those kids. They dont

know what it is to go somewhere with their Mom and just have a good

time.

I took my grandaughter to buy plants and soil yesterday afternoon

for a school project and then to buy her a white shirt she needs for

another school function. Her Mom should be doing those things. But

her Mom doesnt care anymore about doing anything with or for the

kids. She is in those 4 walls with the blinds shut and wants no one

in either.

When I go over there, I am lucky to get a few words out of her.

Most of the time, I am just ignored.

I really and truly am at the end of my rope,,,when someone does not

want to help theirselves,,,,what alternative is there??? I dont

know, I have run out of ideas.

Sorry to be saying all this, but it is really getting to me.

Jean

[Guest guest]

Hi Jean,

sounds as if is on the way to becoming clinically depressed

- this is not the same as just being sad. I'd persuade her to see a

Dr somehow - and to get her condition under control. Loss of interest

and " go " is not a good sign but it is something that can often be

turned around quickly. She is very lucky to have you around to be

supportive.

Pain meds often have a long-term effect that is similar to naturally

triggered depression (they work on closely related brain systems to

those involved in depression). I've been on anti-depression

medications in parallel with pain relief meds - the two complement

eachother.

Just a thought or 2

Good luck

Roz

[Guest guest]

Hi Jean,

It sounds as though probably has some degree of depression. I can

understand how she feels about doctors, as, when you've gone for a long time and

had very little help and you feel they will not listen to you, you just can't

be bothered any more.

I don't know what happens in the US, but over here in the UK i think you

would have difficulty just getting repeat prescriptions for painkillers all the

time without having some sort of review.

I know it is difficult to find a doctor that you trust, who you feel will

listen to you and try to help. Does have antidepressants as well as pain

meds? Maybe if she did, and they would just lift her modd a little she would be

more inclined to seek help for her pancreas problems.

It must be difficult as a mum, for you to watch going through all this,

wanting to help. You can't force her to get help, if she doesn't want to. I

expect all you can do is be there for her. I'm sorry i don't really have any

answers. I wish i could help. If wants to talk to me , then you can give

her my email address, and i will correspond with her, if you think it would

help.

I wish you both well.

Sue (UK) (sueanddave@...)

[Guest guest]

Hi Jean,

It is a shame that does not have access to a computer, and won't go to

your house to use yours. As i am sure many of the other people on this board

will agree, often the best support is gained from people who know what you're

going through - which is exactly what you get on this board.

The things that you say about not wanting to talk about her condition,

gaining weight etc makes me tink that she could well be suffering from

depression, and, if that is the case, she will need help with that also.

I think you are right about the need for a pancreatic specialist. At my

local hospital i was under the care of a general surgeon who had an interest in

the pancreas, but did lots of other things as well. When i was referred to

Liverpool, i was really anxious, and thought he would probably say the same as

the local surgeon - that nothing could be done. This wasn't the case at all,

and i am so glad that i went for the second opinion. So, i know that things

probably seem very difficult for right now, as she has been ill for some

time, but, please tell her that there are doctors out there who can help her.

I'm sure there are people on the board who could give you information about

specialists in your area.

Back in 2000, i was in severe pain and feeling really low, but have never

looked back since the pancreatectomy. I really don't know where i'd be today,

had i not had it done.

I wish there was some way i could help . If you can think of anything i

can do to help. please let me know.

Best wishes to you both.

Sue (UK)

[Guest guest]

Hi Sue,

Thank you for being so kind to me. does not have a computer.

I have offered to come use this one at anytime but she wont even

come to my house. As for her medicines, I cant tell you what she

takes because she wont allow anyone to know. All I really know is

that she wears a pain patch and what else she takes, I have no

idea. She may take nothing but the pain meds. She is the type of

person who is not willing to share personal information and I have

quit asking, I know it will not do any good. She goes to one Dr

when her appointments come due and he asks how she is doing and

writes out new Rx's for the medicine. Her daughter who is 13 goes

with her on occasion and she has told me that she cant see why her

Mom even goes, that the doctor never does anything.

will not allow me to know anything about her medical care now,

because she knows that i dont think she is getting the right care

and that she is not going to the right Dr. I have suggested to her

many times that she needs a specialist. In her mind, no one can

help her and she doesnt want to go elsewhere.

So really, about all I can do is suggest and take her posts from

this site that I think may help her in making a deciaion to seek the

help she needs.

Someone else asked me the ages of her children, her daugher is 13

and her son is 7. He was born 7 months before she was stricken with

the gallbladder attack and then it went into the pancreatitis. So

as you can tell, the children have not known anything but sickness

from her.

I do have a question for all of you. Even tho hardly eats

anything, she has gotten enormously large. Her weight has sky

rocketed. If I had to guess, I would say she is at nearly 200 lbs.

Why do you think this is happening? Right afer becoming so ill with

the pancreas, she started losing weight and got down to a size 12

and was so happy to be down to that size, but now she just keeps

getting larger and larger. This really concerns me also.

Someone also asked me if followed a low fat diet and the anser

to that is yes, she has followed it since she first became ill, in

fact she barely eats anything.

I know that I have made a nuisance with myself to you all over ,

but I have no one else to talk to about her or to ask questions, I

cant even ask her. I really appreciate all of you that have

responded to me about all my worries and concerns about her. I

thank any of you also that have tried to contact . Her husband

did tell me just the other day that reads each and everyone of

the things she gets and that I print out to her.

Wishing you all a happy day,

Jean

[Guest guest]

Sue,

I have to agree with what you said about needing a specialist. Jean, if

could find the right one to help her it would make such a difference. My docs

made me feel like there were not that many options for me. In fact one of his

nurses told me that she didn't know if the docs in ton could do

anything for me and scared me to death.

When I went to the specialists in ton last week it was like a whole

different world. I found hope! They were an answer to prayer. The right doctors

make all the difference!

I hope will come around, I pray for you both!

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. "