Re: Just a quick update-Lyn fr Debs

[Guest guest]

Lynn,

I am doing better. The belladonna has worked for me in smoothing out the

kinks in my intestines for right now and that is all that I can worry about

at this time. That area just feels kind of bruised right now. I am staying

on my clear liquid diet right now cause that is what makes me feel better and

will gradually increase it as the days go by. I don't want to shove anything

down there too soon and be right back where I was Saturday night.

Now about you, I am praying that there is nothing else that could have formed

around your previous surgery site. By having all these tests, there is

virtually very little chance of the adhesions showing up on x-ray, ct or even

mri. The only way they visualize is thru an exploratory laparotomy or

laparoscopy, which just by the nature of the procedure causes more adhesions.

Even if you do have the adhesions taken down, they can reform in as little

as 10 days. This is one of the reasons doctors are reluctant to do this type

of surgery because there is no barrier material available in the US that will

prevent the recurrence. In 1995, I had surgery the end of May and by the

beginning of July, I was back in surgery because some of them had already

grown back and where causing large bowel obstructions. Geez, Lynn, right now

you and me both are between a rock and a hard place. I can't keep going on

like this and I don't want to wait for a full blown total obstruction, where

they to do emergency surgery with uncertain results. You can't afford to go

on like this either if they are affecting your eating patterns because of

pain. Actually, at this time, the only real chance for a cure for true

adhesion related disorder (ARD) is to go to Germany where the Spraygel has

been approved and they are using in laparoscopy surgeries. When the doctors

do the laparoscopy, they do it without the gas, they apply the Spraygel and

then they do a second look surgery within 10 days to 2 weeks so that they are

certain that all adhesions have been taken down and no new ones have formed.

I don't know of any surgeon nor have I read about anyone here in the states

doing this. I don't think this will be in practical use here in the states

for a few more years. I guess that once it does get here to the states, that

will be yet another subspecialty in the general surgery category. Your

current GI doc is probably ordering these tests to rule out any other

abnormalities so that to won't have to do these preliminary tests. So by

the time you see him, he will know what you DON'T have.

Dr to must have experience with other patients having the same problems

that you are, given the number of Whipples that he does. You can't be the

only one. My only advice would be to stick with to as long as he is guy

who did all this and don't let yet another set of hands and ideas in there.

He is probably your best chance at relief. I think more and more patients

are speaking up about this problem and doctors have to start addressing it.

I am SURE that to does not want you to obstruct after all the work he has

put in and everything that you have gone thru.

Have you made your decision about school yet? Talk about being between a

rock and hard place. Sorry, but I don't have any good answers to that one.

It is definitely splitting hairs.

Well, my friend, I will pray that God gives you the strength to get thru

these most difficult days and that God gives your doctors the knowledge to

help you with their knowledge and skills. You have been thru so much,

sweetie. I think that you have more than paid your dues by now!

Try to have a restful evening! You know we are all here for you, just an

e-mail away.

Gentle, tender, angel hugs as always,

Debs in FL

[Guest guest]

Lynn,

I am so sorry that after everything that you have been thru with the Whipple,

all it sounds like they have to offer you is a type of feeding tube. That is

not much of a compromise, but if it is going to keep you alive, your choices

are definitely limited. You are right, it is not much way of a way of

living. The GI tests are noninvasive. You drink a rather unpleasant drink

of barium and they track it as it goes thru the upper gi tract taking x-rays

every about 30 minutes to see if they are any obstructions or structural

abnormalities. The lower GI is similar but being unable to drink from that

area (LOL) they insert the barium thru the rectum with a contract of air,

which causes very mild gas pains and once again they take x-rays as it makes

it way thru your large colon. The ct scan is just a matter of sliding thru a

donut shaped machine, you do nothing unless the doctor orders with contrast,

then you drink something in a juice and lay down and they do all the work. I

am just so sorry that you have to go thru this yet. But look at this way,

yes they are looking for something, but they are probably going to find

nothing with in this case it is good news.

Always in my prayers and thoughts,

Gentle, tender, angel hugs,

Debs

[Guest guest]

Hi Debs,

Sorry it took me so long to get back to you. My computer erased 40 messages

yesterday so I don't know what I am missing. Plus I took my granddaughters to

see Beauty and The Beast on stage. It was fun, they have a great time together.

Then everyone came here for dinner so we had a nice night.

I am glad to see you are feeling a little better but I am sure not great.

This stuff really hurts. I haven't made any decisions about school. I think I

am going to contact the professors and see if they will work with me. The

doctor

told me to drop the semester but I hate to do that.

She is doing the test so to will have then as he would have ordered them

anyway. I don't think she feels he is not going to do anything at this time.

She told me, he will hold off as long as possible. However, she is talking

about

some kind of feeding tube. But I won't allow that simply because whatever they

put in has to be done at the U.of P., she can't do it and what they put in will

have to come out. Plus who wants to eat like that, I would rather do the trial

an error I have been doing. I was doing better until this scar tissue thing.

On

top of it all wc is sending my checks late, didn't even get on this week. I

guess they are upset at being fined, so they are taking it out on me. They will

pay it is just when at this point. Plus I have to find a doctor to deal with

the

injury. My ortho doesn't want to get involved with courts and stuff. I was

thinking though why can't my attorney just get my records everything must be in

there. Guess I have to call him and see what he thinks about this. Doctors

don't like to deal with wc cause they have to wait for their money.

I have never had GI x-rays so I don't know what to expect. I guess it is

something I can go to alone, sure hope so. I will be glad to get that over with

and plan to go as soon as possible.

Well I hope you are feeling better and able to eat a little more. I have

been thinking about you.

Lynn (MeMom)

Auntblabbie2000@... wrote:

> Lynn,

>

> I am doing better. The belladonna has worked for me in smoothing out the

> kinks in my intestines for right now and that is all that I can worry about

> at this time. That area just feels kind of bruised right now. I am staying

> on my clear liquid diet right now cause that is what makes me feel better and

> will gradually increase it as the days go by. I don't want to shove anything

> down there too soon and be right back where I was Saturday night.

>

> Now about you, I am praying that there is nothing else that could have formed

> around your previous surgery site. By having all these tests, there is

> virtually very little chance of the adhesions showing up on x-ray, ct or even

> mri. The only way they visualize is thru an exploratory laparotomy or

> laparoscopy, which just by the nature of the procedure causes more adhesions.

> Even if you do have the adhesions taken down, they can reform in as little

> as 10 days. This is one of the reasons doctors are reluctant to do this type

> of surgery because there is no barrier material available in the US that will

> prevent the recurrence. In 1995, I had surgery the end of May and by the

> beginning of July, I was back in surgery because some of them had already

> grown back and where causing large bowel obstructions. Geez, Lynn, right now

> you and me both are between a rock and a hard place. I can't keep going on

> like this and I don't want to wait for a full blown total obstruction, where

> they to do emergency surgery with uncertain results. You can't afford to go

> on like this either if they are affecting your eating patterns because of

> pain. Actually, at this time, the only real chance for a cure for true

> adhesion related disorder (ARD) is to go to Germany where the Spraygel has

> been approved and they are using in laparoscopy surgeries. When the doctors

> do the laparoscopy, they do it without the gas, they apply the Spraygel and

> then they do a second look surgery within 10 days to 2 weeks so that they are

> certain that all adhesions have been taken down and no new ones have formed.

> I don't know of any surgeon nor have I read about anyone here in the states

> doing this. I don't think this will be in practical use here in the states

> for a few more years. I guess that once it does get here to the states, that

> will be yet another subspecialty in the general surgery category. Your

> current GI doc is probably ordering these tests to rule out any other

> abnormalities so that to won't have to do these preliminary tests. So by

> the time you see him, he will know what you DON'T have.

>

> Dr to must have experience with other patients having the same problems

> that you are, given the number of Whipples that he does. You can't be the

> only one. My only advice would be to stick with to as long as he is guy

> who did all this and don't let yet another set of hands and ideas in there.

> He is probably your best chance at relief. I think more and more patients

> are speaking up about this problem and doctors have to start addressing it.

> I am SURE that to does not want you to obstruct after all the work he has

> put in and everything that you have gone thru.

>

> Have you made your decision about school yet? Talk about being between a

> rock and hard place. Sorry, but I don't have any good answers to that one.

> It is definitely splitting hairs.

>

> Well, my friend, I will pray that God gives you the strength to get thru

> these most difficult days and that God gives your doctors the knowledge to

> help you with their knowledge and skills. You have been thru so much,

> sweetie. I think that you have more than paid your dues by now!

>

> Try to have a restful evening! You know we are all here for you, just an

> e-mail away.

>

> Gentle, tender, angel hugs as always,

>

> Debs in FL

>

>

>