Re: had 2 myotemies already- NY

[Guest guest]

Isabella,

I am so sorry to hear you are having such problems after your 'ectomy.

We all knew going in that there could be complications from the

surgery, but we all hope there are none. Am I correct in understanding

that the surgeon removed all of your " E " and part of your stomach?

Have you thought about contacting Dr. Rice to see what he thinks about

all the dilations you are having? Do your doctors say that the

numerous dilations might damage the part of your stomach that is now

your " e " ?

I am very worried about you.

Love,

> > > > > > Hi im new- thanks everyone for all the great

> > > > emails im

> > > > > glad im not completely alone. what i am confused

> > > > about is i

> > > > > had 2 myotemies already and can eat only if i drink a

> > > > lot of

> > > > > water with it. but generally am gaining weight and

> > > > not

> > > > > vomiting ever. i am worried because the barium

> > > > studies show

> > > > > my esophagus keeps getting bigger and bigger but i can

> > > > still

> > > > > eat and gain weight and am worried to ignore it. if

> > > > there

> > > > > are no more options other than to remove the esophogus

> > > > this

> > > > > seems too extreme if i can tolerate the symptoms do

> > > > you

> > > > > agree? in other words, if i am told the only

> > > > remaining

> > > > > option is to remove my esophogus why would i do that

> > > > if i

> > > > > can have a normal life except for having to chug water

> > > > when

> > > > > i eat? thanks

> > > > > >

> > > > > > mike in ny

> > > > > > 28 yrs old

> > > > > >

> > > >

> > > > ------------ --------- --------- ------

> > > >

> > > >

[Guest guest]

Isabella,

I appreciate you showing me where the confusion lies. I honestly think, after

re-reading my own note and seeing what you are saying, that it is a matter of

how we use our language a bit differently from our different cultures. In the

specific note you reference, when I made that statement saying " I can't speak of

someone " ....it meant that I cannot speak of it because I cannot relate because I

have not experienced it, so I could not speak of what those complications would

be like because I haven't had those issues. It was not intended to mean I

couldn't speak of them because I didn't think there were any people out there

that had those issues following an 'ectomy. Does that make sense??

I was only trying to share my own experience, which has been mostly positive. I

have been so fortunate not to have those complications, and because I have not

had them I can't speak of them. That's all I meant. Those very complications we

are speaking of, that you are going through now, were some of my greatest fears

before I had the surgery. I was terrified of not being able to eat, of going

through all that and still having issues to deal with. It scared the hell out of

me, and especially because it was so out of my control, and there was nothing my

surgeon (Dr. Rice) could do to guarantee I would have a successful outcome. But

after doing all my research, and talking to as many people as I could (which I

do now for people that Dr. Rice sees - I am on his list of patients people can

call), I still opted to go for it for my own personal reasons which we have

talked about in great depth when we were both making our choices - many of which

we have in common.

I hope you can see now where I was coming from when I made that statement.

Certainly there was no intention of downplaying any of your troubles or of

minimizing the risk of complications that could arise from opting to have the

surgery.

Love,

in NY

---- Isabella Arnold <arnoldisabella@...> wrote:

> Hi ,

Just wanted to show you which part of your post brought up the confusion.

It's the bit where you say: " That being said, I can't speak of someone having

the surgery and not being able to eat again. "

I was happy to see you share your personal experience as I find that very

important, but I wanted to clarify that this isn't to be generalised, as it

doesn't go for everyone and like I wrote before it's a huge disappointment when

you didn't know upfront.

Sorry again for misinterpreting you!

Love,

Isabella

---- Isabella Arnold <arnoldisabella@...> wrote:

> Hi ,

>  

> Indeed there has been some misinterpretation, but that doesn't mean that I

ever thought you made light of the complications one might undergo after an

-ectomy. I know you take everyone's problems serious, but I misinterpreted you

by thinking you might have forgotten for just a second while typing your message

that there are some fighting huge complications after their -ectomy and losing

hope on a positive outcome. Sorry for that.

>  

> What I wanted to point out, is that one shouldn't think that an -ectomy is the

hurray surgery, as is simply isn't. If there is anyone out there that might be

facing an -ectomy, I want them to know all there is to know about it. They

should know about the hurray outcomes, as well as about the

disappointments. It's a huge disappointment after undergoing this surgery to

find out that you still cannot eat.

>  

> My -ectomy certainly feels like an unsuccessfull one. Sure the -ectomy is

successfull: my esophagus is out and therefore so is my achalasia. But what does

it bring one if troubles are as hard or even harder as during the achalasia

days? The only difference right now is that it's not called achalasia anymore

but scar tissue...

>  

> In 's case the -ectomy has been done a long time ago already. That

makes one wonder when one gets the complications...

>  

> Like I wrote before: at the moment I am doing much better again mentally. But

it's all against a very very high price.

>  

> After 15 years I finally wanted to eat again and just like after my

unsuccessfull myotomy last year I was given the opportunity to do so, but only

for such short a while. This really makes one wonder and there's nothing or

nobody that can stop these doubts untill the problem has been solved. The only

thing that's left for us here again is hope and positivity. I am very thankfull

to have regained that the last couple of days.

>  

> It would have been so much easier to cope with all of this if I had known

upfront that this might happen. I had heard about scar tissue, but I from what I

read I never expected things to get as bad as they did in me (and ).

>  

> Love,

> Isabella

>  

>  

>

>

>

> Re: had 2 myotemies already- NY

> >

> >

> > thanks again richard and tracy. i have been going to all the doctors by

myself, but i usually just listen to whatever they say which is not that helpful

and dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

> >

> >

> > > > > Hi im new- thanks everyone for all the great

> > > emails im

> > > > glad im not completely alone.  what i am confused

> > > about is i

> > > > had 2 myotemies already and can eat only if i drink a

> > > lot of

> > > > water with it.  but generally am gaining weight and

> > > not

> > > > vomiting ever.  i am worried because the barium

> > > studies show

> > > > my esophagus keeps getting bigger and bigger but i can

> > > still

> > > > eat and gain weight and am worried to ignore it.  if

> > > there

> > > > are no more options other than to remove the esophogus

> > > this

> > > > seems too extreme if i can tolerate the symptoms do

> > > you

> > > > agree?  in other words, if i am told the only

> > > remaining

> > > > option is to remove my esophogus why would i do that

> > > if i

> > > > can have a normal life except for having to chug water

> > > when

> > > > i eat?  thanks

> > > > >

> > > > > mike in ny

> > > > > 28 yrs old

> > > > >

> > >

> > > ------------ --------- --------- ------

> > >

> > >

[Guest guest]

Isabella wrote:

> Regarding the -ectomy... well, it's just not plain black and white. In some

patients it's THE solution, in others it just takes a long time before going

through it all pays off, guess I belong to the second group... It's only a pity

(and a huge disappointment) that it is taking me so long to recover and that my

body forms this amount of scar tissue.

>

When it comes to scaring we are all different. There are a number of

things that could factor into how badly it becomes a problem of

anastomosis stenosis (scar stricture at the joining, and it rhymes). You

may already know all this but here are some of them:

Acid: I assume you are on a PPI or something like that.

Low blood flow: Low blood pressure. I hope you are somewhat active.

Bacteria: The immune system response is a lot like the healing activity

that causes scaring.

Malnutrition:

Anastomotic Complications after Esophagectomy

T. Lerut, W. Coosemans, G. Decker, P. De Leyn, P. Nafteux, D. Van Raemdonck

Department of Thoracic Surgery, University Hospitals Leuven, Belgium

http://content.karger.com/produktedb/produkte.asp?typ=fulltext & file=dsu19092

Healing in Gastrointestinal Anastomosis

http://www.nitisurgical.com/UserFiles/File/1-Healing%20in%20GI%20anastomosis.pdf

" Wound healing requires energy and adequate nutritional intake by the

patient. Malnourished patients are predisposed to wound healing failure

as they lack of the necessary vitamins and minerals for repair. These

includes vitamins A,C, and B6, all required for collagen synthesis and

cross-linking, as well as zinc and copper. Zinc and iron acts as

cofactors to many reactions involved in DNA synthesis, protein

synthesis, and cellular proliferation. Zinc or copper deficiencies

result in fewer fibroblasts, and impacts collagen synthesis.

Local infection impairs wound healing by prolonging the inflammatory

phase, and inducing the increased expression of tissue proteases. "

notan

[Guest guest]

Dear ,

Whereas I never thought you were downplaying the troubles, I am glad to have

found where the confusion lies. Indeed there are language and culture

differences that sometimes play up while we're an international board here. It

is a good thing though that we are all honest and open enough to get any

confusion like this out of the air, he?

With love as always,

Isabella

Re: had 2 myotemies already- NY

> >

> >

> > thanks again richard and tracy. i have been going to all the doctors by

myself, but i usually just listen to whatever they say which is not that helpful

and dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

> >

> >

> > > > > Hi im new- thanks everyone for all the great

> > > emails im

> > > > glad im not completely alone.  what i am confused

> > > about is i

> > > > had 2 myotemies already and can eat only if i drink a

> > > lot of

> > > > water with it.  but generally am gaining weight and

> > > not

> > > > vomiting ever.  i am worried because the barium

> > > studies show

> > > > my esophagus keeps getting bigger and bigger but i can

> > > still

> > > > eat and gain weight and am worried to ignore it.  if

> > > there

> > > > are no more options other than to remove the esophogus

> > > this

> > > > seems too extreme if i can tolerate the symptoms do

> > > you

> > > > agree?  in other words, if i am told the only

> > > remaining

> > > > option is to remove my esophogus why would i do that

> > > if i

> > > > can have a normal life except for having to chug water

> > > when

> > > > i eat?  thanks

> > > > >

> > > > > mike in ny

> > > > > 28 yrs old

> > > > >

> > >

> > > ------------ --------- --------- ------

> > >

> > >

[Guest guest]

Hi ,

Yes, you are correct. The whole esophagus is removed, together with half my

stomach. It's called a transhiatal esophagectomy with gastric pull up. Here's a

clear picture of what they do:

Didn't they do the same with you?

I've checked the internet and been in touch with several other patients. It

really is a normal complication, the scar tissue. And dilatation really is the

normal (and so far best) treatment for it.

, , Dutch and several other have had dilatations as

well.

So far, I don't intend to seek a second opinion on this one, as everything I've

checked says the same (that I am on the right track here).

The dilatations won't harm my new esophagus. Of course there is always the risk

of perforation, but I find myself in the hands of great GE's, so I don't worry

on that one. I am monitored really well during the procedure and I am in the

best possible hospital, where my surgeon is available should something go wrong

(which it won't).

And how are you doing nowadays? Has life gotten back to normal for you now? Sure

hope so, you've been through it quite a bit yourself, eh?!

Lots of love,

Isabella

Re: had 2 myotemies already- NY

Isabella,

I am so sorry to hear you are having such problems after your 'ectomy.

We all knew going in that there could be complications from the

surgery, but we all hope there are none. Am I correct in understanding

that the surgeon removed all of your " E " and part of your stomach?

Have you thought about contacting Dr. Rice to see what he thinks about

all the dilations you are having? Do your doctors say that the

numerous dilations might damage the part of your stomach that is now

your " e " ?

I am very worried about you.

Love,

> > > > > > Hi im new- thanks everyone for all the great

> > > > emails im

> > > > > glad im not completely alone. what i am confused

> > > > about is i

> > > > > had 2 myotemies already and can eat only if i drink a

> > > > lot of

> > > > > water with it. but generally am gaining weight and

> > > > not

> > > > > vomiting ever. i am worried because the barium

> > > > studies show

> > > > > my esophagus keeps getting bigger and bigger but i can

> > > > still

> > > > > eat and gain weight and am worried to ignore it. if

> > > > there

> > > > > are no more options other than to remove the esophogus

> > > > this

> > > > > seems too extreme if i can tolerate the symptoms do

> > > > you

> > > > > agree? in other words, if i am told the only

> > > > remaining

> > > > > option is to remove my esophogus why would i do that

> > > > if i

> > > > > can have a normal life except for having to chug water

> > > > when

> > > > > i eat? thanks

> > > > > >

> > > > > > mike in ny

> > > > > > 28 yrs old

> > > > > >

> > > >

> > > > ------------ --------- --------- ------

> > > >

> > > >

[Guest guest]

Hi Isabella,

I had the same surgery, except all of my esophagus was not removed,

only part of it--the damaged part.

I am so glad you are in good hands. You have had such a time.

I am still at home, but will return to work after the New Year. I do

have problems if I drink while I am eating and sometimes swallowing is

difficult in the morning. I am going on holiday next month, but will

call Dr. Rice as soon as I return. I was at The Cleveland Clinic in

June and was told all was well.

You hang in there okay.

Love,

> > > > > > > Hi im new- thanks everyone for all the great

> > > > > emails im

> > > > > > glad im not completely alone. what i am confused

> > > > > about is i

> > > > > > had 2 myotemies already and can eat only if i drink a

> > > > > lot of

> > > > > > water with it. but generally am gaining weight and

> > > > > not

> > > > > > vomiting ever. i am worried because the barium

> > > > > studies show

> > > > > > my esophagus keeps getting bigger and bigger but i can

> > > > > still

> > > > > > eat and gain weight and am worried to ignore it. if

> > > > > there

> > > > > > are no more options other than to remove the esophogus

> > > > > this

> > > > > > seems too extreme if i can tolerate the symptoms do

> > > > > you

> > > > > > agree? in other words, if i am told the only

> > > > > remaining

> > > > > > option is to remove my esophogus why would i do that

> > > > > if i

> > > > > > can have a normal life except for having to chug water

> > > > > when

> > > > > > i eat? thanks

> > > > > > >

> > > > > > > mike in ny

> > > > > > > 28 yrs old

> > > > > > >

> > > > >

> > > > > ------------ --------- --------- ------

> > > > >

> > > > >