Re: Re: esophagectomy after a HM -- tube feeding

[Guest guest]

,

If you don't mid my asking, what did the GI's do/recommend that was not helpful.

I totally agree with you comment that we must be educated! I have not met many

GIs that understood achalasia.

Thanks,

Faith

Re: esophagectomy after a HM -- tube feeding

Many types of tube feeding, and many reasons for doing so. According to a friend

of mine, who is a nurse: MOST OF THE TIME IT IS TEMPORARY --> to support

nutrition, heath, hydration, giving TIME to make sane decisions. I'd have to

say, from my reading, that if all it's used for is pouring down commercial

preparations, the outcomes are not as good. But some people think it's simply

*easier* that way. My GIs all thought that Ensure was an adequate food

replacement, so the medical peeps aren't going to help anyone much here. . . .

Howsumevah: http://completetubefeeding.net/

I'd likely be in much better shape than I am if I'd known about this last year.

I'm not willing to define " normal " as a functional esophagus, though. Or even

just " eating. "

I think information, education, is our best defense against fear. And our best

methodology for dealing with doctors who may, or may NOT, know what's going on

with us.

And information/education also applies to finding those who are best able to

help. And sometimes -- for mothers of young children/babies who can't eat for

one reason or another -- it means fighting with the medical

establishment/wisdom, tooth and toenail. But to do that, YOU have to be educated

about options.

I promise ya'll, I'd be dead if I'd listened to my GIs. . . . And they were

neither stupid nor unkind men. They were simply inadequate to address MY issues.

There are a number of us here who would have done a helluva lot better, myself

included, if we *had* had feeding tubes, while working out what to do.

I so wish everyone the best outcomes *possible* -- but there IS no " good outcome

fairy " -- there is only ourselves.

xox

/WV

> >

> > Hi everyone,

> >

> > I am wondering if anyone out there who had a failed heller myotomy under

went an esophagectomy shortly after?

> >

> > I had a HM on 4/25. Things started out okay, but by week 2 fluids started

coming back up and shortly after everything stopped going down. I have spent the

past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday

to have an endoscopy done. They did a dilatation and they but botox in the

muscle. It worked for about 10 hours, and I am already back to throwing

everything up. My surgeon really wants me to wait it out from about 6 months in

hopes my E will shrink back. I'm just not sure I can do 6 months of this. The

other option is an esophagectomy.

> >

> > I am not sure what to do, I don't really want another surgery but I just

don't see how my E is going to shrink if things are getting stuck there. I am a

little frustrated with my surgeon because he actually tried to say maybe it was

just my perception that it wasn't going past my E. I quickly told him that that

was not the case.

> >

> > I'm planning on doing this for another 2 weeks and then talking to him again

about the surgery if things don't improve. I would feel so much better if I

could just get more liquids in but not being able to drink is extremely

frustrating.

> >

> > Anyways, just wondering if anyone has experienced anything like this and

ended up having an esophagectomy.

> >

> > Thanks!

> >

>

[Guest guest]

, that sounds criminal and sadistic. I think you said

you are doing much better now?

Faith

Sent from my iPod

On May 31, 2012, at 21:11, " puddleriver13 " <puddleriver13@...> wrote:

>

>

> Faith: imagine YOU have a patient, admitted through ER, dehydrated with

electrolytes so far out of balance that she's in the *cardiac* unit for five

days. The barium swallow that first night pretty much diagnosed achalasia as far

as me and the radiologist were concerned. The LES was in his estimation not even

a rat's tail: a mouse tail. I was getting four or five *drops* a minute. Now

imagine that same LES on Ensure. . . . I had lost 60 pounds in the previous

three months. The week I was admitted from ER, I was losing a pound a day.

>

> The " dilation " they did, 15mm probe during the EGD lasted about three days,

and I was back to regurging *water*. . . . Their *follow up appointment* was a

MONTH later. Once I was their patient, my primary care docs wouldn't touch it.

They gave me IN the hospital a med I was allergic to; and continued to prescribe

several others of the same family. I don't *know* if I might have done better on

Nitro, because they refused to prescribe it. They DID offer to do another EGD

15mm " dilation " . . . .

>

> I had to throw a fit to get the manometry performed. It took two weeks to read

it. Because the LES was too tight to get the probe through they thought it was

" inconclusive " . . . . It took another two weeks for them to decide I should go

the UVA " Digestive Health " -- and Digestive Health refused to make the apt. They

suggested that I try and call DH.

>

> In trying to reach them, I got accidentally referred to the surgeon there.

That was a Thursday, and I had an appt. the next Tuesday. And he was ready to do

surgery, STAT. The day of that appt. I did my pre admission bloodwork, and

stress test. If I'd been *smart* -- I would have called office the day I

got home from the hospital the first time. Instead of hanging around the GIs for

ten VERY long weeks.

>

> Me and my crockpot and blender just *barely* managed to keep me alive with the

aid of a power assisted Mountain Dew swallow learned from THIS group.

>

> Personally, the thing I resented most was them pushing the potassium drip

while I was in the hospital, so they could do the EGD. And then after the four

hours of what I can only describe as *intense* physician caused pain, decided

NOT to do it after all, and didn't even ask for the four o'clock potassium

levels. . . . I had sat in that bed, sobbing and clutching a bear a friend had

sent, *for four hours!* But hey, it was a Friday night -- better things to do

than keep a promise, eh? Thing is, *I* didn't have alarm bells go off at that,

and I should have. . . . For those that don't know (and pray you never learn) an

IV potassium drip is nasty. Even at normally prescribed levels -- wrecks an IV

site pretty fast. So you have one going, and one ready to go at all times.

>

> Live. Learn. And maybe prevent others from going through the same thing?

>

> xox

> /WV

>

>

> > > >

> > > > Hi everyone,

> > > >

> > > > I am wondering if anyone out there who had a failed heller myotomy under

went an esophagectomy shortly after?

> > > >

> > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids

started coming back up and shortly after everything stopped going down. I have

spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down

yesterday to have an endoscopy done. They did a dilatation and they but botox in

the muscle. It worked for about 10 hours, and I am already back to throwing

everything up. My surgeon really wants me to wait it out from about 6 months in

hopes my E will shrink back. I'm just not sure I can do 6 months of this. The

other option is an esophagectomy.

> > > >

> > > > I am not sure what to do, I don't really want another surgery but I just

don't see how my E is going to shrink if things are getting stuck there. I am a

little frustrated with my surgeon because he actually tried to say maybe it was

just my perception that it wasn't going past my E. I quickly told him that that

was not the case.

> > > >

> > > > I'm planning on doing this for another 2 weeks and then talking to him

again about the surgery if things don't improve. I would feel so much better if

I could just get more liquids in but not being able to drink is extremely

frustrating.

> > > >

> > > > Anyways, just wondering if anyone has experienced anything like this and

ended up having an esophagectomy.

> > > >

> > > > Thanks!

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hiya A sufferers

 

I also suffer from A, i have done since 2012. I have tried all medications and

dilatation twice which has been unsuccessful. My consultant told me that my only

other option now is surgery. When he started telling me about the procedure i

was quite shocked as i didnt expect to hear this. Removing part of my stomach,

removing my gullet and puting part of stomach there. He said the recovery would

be a long one and i will be left with quite big scaring. I have asked for

another apt as this was all too much to take in, so i went home and spoke to my

family. This is looking like my best option. I have had lengthy periods off work

due to weakness, tiredness and generouly feeling poop. Does anyone no if this

condition is classed as a disability. I am due to return to consultant this

month where ime prepared with a load of questions. Cant wait for the day when my

whole world doesnt resolve around this.

 

x

________________________________

From: Deborah Lattimore <deborah_Lattimore@...>

" achalasia " <achalasia > ave as

Sent: Friday, 1 June 2012, 20:07

Subject: Re: esophagectomy after a HM -- tube feeding

 

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves.  Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

GET A NEW DOCTOR!!!! An echtomoy is rarely the first line surgery. Did you

ask him about a HM?

Re: esophagectomy after a HM -- tube feeding

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves. Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

Hello

 

I have been given dilatation which was unsuccessful twice. All medications have

also failed to help. What does an HM entail. I meant to write earlier that i

have had this condition for 3 years.

________________________________

From: " weissf@... " <weissf@...>

achalasia

Sent: Friday, 1 June 2012, 21:23

Subject: Re: Re: esophagectomy after a HM -- tube feeding

 

GET A NEW DOCTOR!!!! An echtomoy is rarely the first line surgery. Did you

ask him about a HM?

Re: esophagectomy after a HM -- tube feeding

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves. Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

The Heller Myotomy is the gold standard for Achalasia. It involves making an

external cut at the LES to open it up. You need an experienced surgeon who has

done a couple of hundred. If your surgeon has not mentioned it to you or why

you are not eligible for one, then he probably is not very experienced with

achalasia. A surgeon in the army years ago wanted to remove my esophagus. He

did not have much experience in achalasia and that was all he knew. Another

surgeon told him no. If you read the literature, removing the E is the last

resort even for sigmoid and megaE.

Others can give you more info.

G luck!

Re: esophagectomy after a HM -- tube feeding

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves. Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

I had the ectomy done back in October 2004 and was classed then as disabled by

the establishment because of the large scarring that i now have as the resulting

adhesions are very limiting.

from the UK

________________________________

From: pauline ferries <pferries31@...>

" achalasia " <achalasia >

Sent: Friday, June 1, 2012 8:33 PM

Subject: Re: Re: esophagectomy after a HM -- tube feeding

 

Hiya A sufferers

 

I also suffer from A, i have done since 2012. I have tried all medications and

dilatation twice which has been unsuccessful. My consultant told me that my only

other option now is surgery. When he started telling me about the procedure i

was quite shocked as i didnt expect to hear this. Removing part of my stomach,

removing my gullet and puting part of stomach there. He said the recovery would

be a long one and i will be left with quite big scaring. I have asked for

another apt as this was all too much to take in, so i went home and spoke to my

family. This is looking like my best option. I have had lengthy periods off work

due to weakness, tiredness and generouly feeling poop. Does anyone no if this

condition is classed as a disability. I am due to return to consultant this

month where ime prepared with a load of questions. Cant wait for the day when my

whole world doesnt resolve around this.

 

x

________________________________

From: Deborah Lattimore <deborah_Lattimore@...>

" achalasia " <achalasia > ave as

Sent: Friday, 1 June 2012, 20:07

Subject: Re: esophagectomy after a HM -- tube feeding

 

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves.  Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

Hiya

 

Yeah ime 41 and i live in Scotland. I have 3 children, well they r 20, 22 and

16. I have had the manometry test before dilatation and just recently again. I

have been diagnosed with  Achalasia. Was told that the muscles in my oesophagus

has completely stopped working and this operation is now really my only option,

or i can continue the way i am and suffer. Really dont think that can be an

option anymore.

________________________________

From: mer <ray_me_99@...>

achalasia

Sent: Saturday, 2 June 2012, 7:26

Subject: Re: esophagectomy after a HM -- tube feeding

 

Hi ine

Where are you and why do you have to see a consultant?

What is your age and family.

Have you had a manometry test, which tests for Achalasia?

Dilations have to be larger than 16 mm to help.

A lot of info on the internet on a HM ( Heller Myotopy)

http://www.ctsnet.org/sections/clinicalresources/thoracic/expert_tech-5.html

http://www.bing.com/videos/search?q=Laparoscopic+Myotomy+video & mid=B88484421C32F\

997F372B88484421C32F997F372 & view=detail & FORM=VIRE4

I have classical Achalasia 5+ years, but now I MANAGE it. I find in MY case if I

have food in the E it causes a spasm. Drink a lot of warer, hot coffee or a can

of COLD Coke during the meal. You must several times a day clear out the E. CO2

from the Coke opens the LES, hold it in the E, then try to swallow it. If the

CO2 is cold works better before it disappears. Also butter makes food slip down

and opens the LES, medical report.

I hope this helps. Go back a year on this site, then you will find things that

may help you and dedide what would be best for YOU.

Ray CA OC 81 No HM, No dilations except a 16 mm during the first check ,No

medicine.

>

> Hello

>  

> I have been given dilatation which was unsuccessful twice. All medications

have also failed to help. What does an HM entail. I meant to write earlier that

i have had this condition for 3 years.

>

>

> ________________________________

> From: " weissf@... " <weissf@...>

> achalasia

> Sent: Friday, 1 June 2012, 21:23

> Subject: Re: Re: esophagectomy after a HM -- tube feeding

>

>

>

>  

>

>

> GET A NEW DOCTOR!!!! An echtomoy is rarely the first line surgery. Did you

ask him about a HM?

>

> Re: esophagectomy after a HM -- tube feeding

>

> I just read 's post and she's right; there is no " good outcome fairy " ,

> only ourselves. Her post is the essence of how to handle achalasia; be

> armed with more information, keep asking questions, try your best to

> keep an upbeat attitude (which can be really hard to do at times and

>

> we all know that), and know that you are doing the right thing: fighting

> for your life, your quality of life.

>

> Good Post, .

>

> Deborah

>

>