To

[Guest guest]

Hi ,

Just read your reply to Maureen. It's so obvious how this whole

disease is affecting you and I feel very sorry for you.

You never responded to my earlier post attached below, nor the one

sent a few minutes later by me, asking you why they don't want to use

a small part of your intestines for replacement of the esophagus

should you have too little stomach left to do so. It may be a mess

inside your stomach, but it's a mess in the stomachs of many of us!

In my stomach it was one big mess as well, but that's something the

surgeon just needed to deal with...

I honestly doubt whether your doc's are the right ones and if you are

not being used as a ginny pig. Now I hope you don't get upset by me

telling you this so directly, but it are my honest feelings and I

feel you deserve the best possible treatment.

I would try getting the opinions of other specialised doctors and see

if they agree that a myotomy or an -ectomy really aren't good options

for you.

Love,

Isabella

>

> Oh ,

>

> No you're not the only one! My Dutch achalasian -ectomy friend

had way over 100, after which he stopped counting... This all

resulted in the -ectomy, as understandably after so many dilatations

myotomy was no option anymore.

>

> I understand that there a numerous ways to perform an -ectomy. Over

here in Holland they tend to have a golden standard: it's the -ectomy

where they cut the neck open and furthermore they either enter the

stomach lap. or open (from breasts to belly button). They remove the

whole esophagus (exept for a few cm just below the chin) and half the

stomach. The other half of the stomach will be used to pull up into

the neck area as to form the new esophagus.

>

> If there isn't enough stomach left, they follow about the same

procedure, but instead of the stomach they will use some intestines

to form the new esophagus.

>

> Don't you even have half a stomach left? If not, why would using

intestines not be an option for you?

>

> How experienced are your doc's with -ectomies?

>

> By the way: yesterday my health insurance provided me with my

new " food programme " -LOL-, a box full of Ensure and other types

of " delicious " meals. Didn't dare to open a can yet, I had such a

deja-vu feeling... I promised myself to open one in about one hour

YACK YACK YACK. Well, just a few more weeks (at least that's what I

hope and expect!).

>

> Love,

> Isabella

>

>

>

> On average how many diliations have people

have?

>

> Am I the only one who has had dilitations into the double digits?

>

> Am I the only one stupid enough to have this done so many times?!

> Maybe don't answer that one. LOL

>

> I am going, (I know there will be some of you pulling your hair out

> right now),44th one on the 3rd.

>

> I know! I know! I know! I's stupid for keeping this up every few

> months. But what other option do I really have? They have said no

> myotomy or oesphectomy (sp). As the will have to take my stomach as

> well. The Moltilium is not working. Dr Herrmann says it's a mess in

> there. So much so even he is grossed out by it. It must be bad.

> And I have just lost another 10kg's in the last few weeks. It looks

> and feels horrible. My bones are poking out.

> I think I might be in for another PEG again.

> Oh! Woe is me!

>

> They are taping the gastroscopy and diliatation this time and I am

> posting it on my channel on YouTube. They tried taping last time

but

> the Tech who knows all about the DVD recorder was away. So it

didn't

> get taped.

>

> Am I allowed to put the link to this video on here? Or do I need

> permission? If so from whom?

>

>

> Australia

>

>

>

>

>

>

______________________________________________________________________

______________

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>