Re: If I had scared anyone i am sorry

[Guest guest]

Ed, it is always good to hear from you again and to know

you are still doing well. Pop in more often.

MaggieStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Hi Im somewhat of a Newbie here

My name is Dee

You said you were on disability, is thatbecause of the achalasia?

Because I am on disbility from a private insurance group and have

been trying to get on disbility with the gov because then at leat i

would have some medical insurance are you on disability from the gov?

P.S. I am glad you ar edoing fine and would love to read the book!!!!

>

> i had posted on this group back in 2002 and 2003 as differnt

> names. At that time I was only one of three people who had an

> esphagectomy done for achalasia. This is important, I am coming up

> to my 8th anniversary this February 29th, and I have not seen the

> others still posting.

>

> My MD Dr. Gilbert from Boston, " city of champions " . is

> going to the Thoracic Surgery Conference this year. He is putting

> some information forward about a procedure called a Roux-EN-Y an

old

> procedure for weight loss. I am having a modified version of this

> done March 6h this procedure is designed to be done with

the 'ecotmy

> to prevent future acid and bile reflux. When your stomach is in

your

> chest and no longer functions as a stomach it " should " not make any

> acid. but for many people whom are young and had their 'ectomies

done

> 8-10 years ago the body has begun to make stomach acid again. The

> problem for 80% of the people can be stopped by taking Prevacis or

> Zantac or Protonix in very large quantities, often pharmacies are

> calling to see if the dosage is a typo. The other 20% require

> surgery that is my case.

>

> I say to everyone who had an Esophagectomy for any reason, take

> your meds. eat what you can, stay away from coffee and cola's and

if

> you begin to get any reflux do not lie flat at night and see your

MD

> asap.

>

> With the help of my wife and my MD's if have 6 of them, I am

> wrinting a small book about my experience. I am now 40 years old I

> had dysphagia when I was 10. 6 glasses of H2O to get a mouthfull

of

> food down, my mother was told by my doctors that I was under stress

> and needed to calm down there was nothing wrong. My " official

> diagnosis " did not com until I was 24.

>

> Enough of this doom and gloom GO PATS!!!!!!! GO CELTICS!!!!!!!

AND

> ANOTHER RED SOX WORLD SERIES THIS YEAR!!!!!. I'm on disability I

have

> nothing else to do.

>

> God Bless

>

> ph

> New Bedford, Massachusetts

>

[Guest guest]

Dear Joe,

There is no need for you to apologise at all for as far as I can see! You didn't scare me (and hey, I am going to have my -ectomy done soon) and I appreciate the fact that you write about your post-ectomy problems here on the board.

I notice that even major surgeries are decided on pretty quickly sometimes, whereas I think one should really take his/her time (when this time is available) to think things over and to weigh the decision. How is anyone supposed to weigh this decision, if only the success stories are written here on the board? So it's a very very good thing of you to write your story down!

Yet, I must add, that I am glad Notan wrote his view on things too. This as he is right: the -ectomy indeed started off only for cancer patients, but if it helps the severe achalasia cases, why bother that it started off for cancer? You know, the procedure is only performed in those cancer cases, where there is still hope, when the cancer hasn't spread itself. So it's only used in those cancer cases where there's a future to look forward too... Furthermore I think Notan is right too concerning the long term results: of which surgery can we really trace those long term outcomes?

Just a little addition from my side here: I checked, checked and double checked all details and possible complications (both long and short term). During that I spoke to a father of my little boy's friend. He's a child's oncologist in a very skilled and well known Dutch hospital (I am from the Netherlands). I asked him whether he knew something about -ectomies in kids. Seems that -ectomies in kids are done as well (mostly due to effects of cancer treatments he added, he didn't know about achalasia cases). Those kids grow up and live a normal live ever after. If they can do it, why wouldn't we adults be able to do it?

Another member here on the board, , had his -ectomy done a pretty long time ago too and he's doing well, for as far as I know. Then there is my Dutch friend , he had his -ectomy done about 6 years ago and is doing marvellous. He does suffer from acid and did so from the beginning, but he only sometimes needs to take medication for it and sleeps with his bed tilted a bit at the beginning of the night, but that's it...

I do have one question here and to be honest I am pretty curious to both your and Notan's answer here. For as far as I know, the -ectomy doesn't at all stop the acid building in your stomach (that indeed is in your chest and throat after the -ectomy). I think it would be nice if it did (is that so, or am I wrong here, because it does have a function of course), but I never heard that that truly is the case.

Joe, once again: no need for apologies.

Love,

Isabella

If I had scared anyone i am sorry

i had posted on this group back in 2002 and 2003 as differnt names. At that time I was only one of three people who had an esphagectomy done for achalasia. This is important, I am coming up to my 8th anniversary this February 29th, and I have not seen the others still posting.My MD Dr. Gilbert from Boston, "city of champions". is going to the Thoracic Surgery Conference this year. He is putting some information forward about a procedure called a Roux-EN-Y an old procedure for weight loss. I am having a modified version of this done March 6h this procedure is designed to be done with the 'ecotmy to prevent future acid and bile reflux. When your stomach is in your chest and no longer functions as a stomach it "should" not make any acid. but for many people whom are young and had their 'ectomies done 8-10 years ago the body has begun to make stomach acid again. The problem for 80% of the

people can be stopped by taking Prevacis or Zantac or Protonix in very large quantities, often pharmacies are calling to see if the dosage is a typo. The other 20% require surgery that is my case. I say to everyone who had an Esophagectomy for any reason, take your meds. eat what you can, stay away from coffee and cola's and if you begin to get any reflux do not lie flat at night and see your MD asap.With the help of my wife and my MD's if have 6 of them, I am wrinting a small book about my experience. I am now 40 years old I had dysphagia when I was 10. 6 glasses of H2O to get a mouthfull of food down, my mother was told by my doctors that I was under stress and needed to calm down there was nothing wrong. My "official diagnosis" did not com until I was 24.Enough of this doom and gloom GO PATS!!!!!!! GO CELTICS!!!!! !! AND ANOTHER RED SOX WORLD SERIES THIS YEAR!!!!!. I'm on

disability I have nothing else to do.God Blessph New Bedford, Massachusetts

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[Guest guest]

Isabella Arnold wrote:

.....

You know, the procedure is only performed in those cancer cases, where

there is still hope, when the cancer hasn't spread itself. ....

I hope I didn't give that idea. As I understand it Joe's description of

esophagectomies being palliative is probably correct in more cases than

it is wrong. My claim is that for years it has not only been used

palliatively but also curatively. Most people don't discover they have

esophageal cancer until it has spread enough that an esophagectomy is

not a cure. They may still have the esophagectomy to improve swallowing

while fighting the cancer with chemo or radiation. All the treatments

could be palliative in some cases or just a way of getting more time

without a cure. However, there have always been some who had their

cancers discovered early and the esophagectomies where done with

curative intentions. So, there is a history of curative intention for

esophagectomies outside of achalasia.

Another

member here on the board, , had his -ectomy done a pretty long

time ago too and he's doing well, ...

14 years ago. See Message:

achalasia/message/31931

notan

[Guest guest]

No need to be sorry. It is a scary topic and that is not your fault. If

a person never gets scared before having an esophagectomy maybe they

don't understand the risks.

Joe wrote:

> .. At that time I was only one of three people who had an

> esphagectomy done for achalasia. ...

The experiences of people like you are important.

> ... He is putting

> some information forward about a procedure called a Roux-EN-Y an old

> procedure for weight loss. ...

Barbara had one of those. Anyone know how she is doing?

See:

Barbara's msg: Home from Roux-en-Y

achalasia/message/41310

notan

[Guest guest]

Hello everyone,

Aside from the flu (didn't get the flu shot this year) all is well 14 years post surgery I do fight acid reflux it's just part of the aftermath of a gastric pull-up. I was taking prevacid but I am now on omeprazole and it seems to work fine and it is now a generic RX and for senior citizens that is a true blessing. I still lurk here but seldom post as the members here are just great and are more current on the care and treatment of achalasia This group walked with me through my journey and I am forever grateful also I am amazed at how many are getting ectomys these days there were very few 14 years ago so the treatment has come a long ways.

Another member here on the board, , had his -ectomy done a pretty long time ago too and he's doing well, ...14 years ago. See Message: achalasia/message/31931 notan

[Guest guest]

Isabella wrote:

...

the -ectomy doesn't at all stop the acid building in your stomach ...

As you know you would no longer have a LES to hold any acid down. So

acid could be a problem, and sometimes is. When doing a gastric pullup

parts of the vagus nerve are disconnect from the stomach, There isn't a

choice with that method. That disconnect results in less acid

production, but it can also results in emptying problems. Some surgeons

prefer to do a vagal sparing esophagectomy and leave more of the nerve

intact. There are also other methods. The idea with vagal sparing is to

leave digestion and stomach emptying as normal as possible even though

this creates more acid. When either method works well you should only

need to raise the head of your bed at night and not eat late to keep

the acid down. If the stomach is emptying well acid will be less of a

problem. If the stomach does not empty well acid can build up and

reflux with the other trapped contents of the stomach (Kind of like

achalasia but now the stomach is the esophagus).. Sometime the emptying

problem can be fixed by doing a pyloric dilatation or pyloric myotomy.

This however can result in bile refluxing up into the stomach. Some

people with or without an esophagectomy are going to produce too much

acid. Often this can be handled by using PPIs. If PPIs don't work, or

bile becomes a problem another surgery may be needed. In Barbara's case

I think bile reflux lead to a Roux-en-Y procedure to relieve the

problem.

notan

[Guest guest]

Hi Notan,

Thanks for this post. You made it absolutely clear, thanks.

Love,

Isabella

Re: If I had scared anyone i am sorry

Isabella wrote:

... the -ectomy doesn't at all stop the acid building in your stomach ...As you know you would no longer have a LES to hold any acid down. So acid could be a problem, and sometimes is. When doing a gastric pullup parts of the vagus nerve are disconnect from the stomach, There isn't a choice with that method. That disconnect results in less acid production, but it can also results in emptying problems. Some surgeons prefer to do a vagal sparing esophagectomy and leave more of the nerve intact. There are also other methods. The idea with vagal sparing is to leave digestion and stomach emptying as normal as possible even though this creates more acid. When either method works well you should only need to raise the head of your bed at night and not eat late to keep the acid down. If the stomach is emptying well acid will be less of a

problem. If the stomach does not empty well acid can build up and reflux with the other trapped contents of the stomach (Kind of like achalasia but now the stomach is the esophagus).. Sometime the emptying problem can be fixed by doing a pyloric dilatation or pyloric myotomy. This however can result in bile refluxing up into the stomach. Some people with or without an esophagectomy are going to produce too much acid. Often this can be handled by using PPIs. If PPIs don't work, or bile becomes a problem another surgery may be needed. In Barbara's case I think bile reflux lead to a Roux-en-Y procedure to relieve the problem. notan

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