Re: Oesophagectomy Update (17 months on)

[Guest guest]

Thanks for the update, Steve. I just had my esophagectomy on Feb. 25

and was discharged from the hospital on April 9. I've had some

problems with certain foods and am very tired, plus I have developed

he MRSA virus, which I am being treated for.

Dr. Rice suggested I try not to attempt to go back o work for six

months and at the rate things are going, it is going to take every bit

of it.

My best to you for wonderful health,

>

> Dear all (that remember me),

>

> It is 17 months after my oesophagectomy and I thought it may be

helpful to others if I give a little update. Also, some people may be

wondering if I disappeared for bad reasons.

>

> But in short summary...fantastic.

>

> I think in the Early post operative days I put a very brave face on.

I recall feeling very flat following surgery and I can relate

to that. I got very fed up with the slow pace of recovery. Now I

have 17 months to look back at I can see exactly how far I have come.

I stupidly went back to work far too early (after 3 months) and in

the end work had to go. So, I now have a job that lets me work the

hours that I want to and whilst it pays less it fits my life style

perfectly. My main problem was trying to balance dumping syndrome,

abdominal cramps and not being able to get off the toilet with a start

time for work...!

>

> For all those behind me in the time line. It really really does get

better. I have learnt what foods to avoid. I simply can not do a

milky drink and carbohydrate together. They lead me to the toilet 20

minutes later. But hey, everything goes down. I recall my surgeon

saying it would take 18 months to 2 years before I felt anywhere near

recovered. He was right. I have learnt so much about myself. I have

slowed right down. In fact I have slowed so much that I sometimes

feel like a man of 80 (no offence intended). But I am enjoying the pace.

>

> I try to kep my system flushed with fluids. I find this helps.

Especially tea (I have never drank so much tea). But it is great not

to need fizzy drinks with my meals anymore. Also, time has allowed me

to increase my portion size but I find psychology prevents me from

eating too much in one sitting as I am frightened of making my new

oesophagus all baggy (just like the old one) even thought the surgeon

has said tht is almost impossible as the new tissue is very different.

So, when eating out I tend to enjoy two starters rather than the

three courses. At least that way I can enjoy wine wit it all.

>

> I do have to think what I am eating in terms of getting enough

calories. But, if I think I am a bit short I simply eat a cream cake

or have ice cream. Yummy.

>

> Some of you may recall I developed cardiac trouble. It has all been

investigated and whilst it is real it is of no cause for concern. The

best guess is it is due to the chest surgery but it is now of no

problem and I think it is resolving as I get the funny rhythms far

less frequently.

>

> I am now doing so well that the hospital has discharged me. They

only want to see me if I feel I need them.

>

> So, to anyone behind me or even considering the oesophagectomy. It

has been tough. Actually it's been harder than tough. The personal

growth has been worth it and the physical improvement takes its time

but it does happen. It has been well worth it. I think I am getting

close to a normal lifestyle.

>

> My apologies for not logging on for some time. I will try harder

and I am willing to answer any questions that anyone may have. You

all take care, thanks for reading and keep smiling.

>

> Steve

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>

[Guest guest]

,

Thanks. The back log that you described has happened to me a couple of times but that was quite early on. It has not really happened since. Therefore, I can only presume that it improves. The body really does re-learn. I had a scarey moment once when I over filled my new oesophagus. Never again!

I am sorry to hear that you have MRSA. It is all challenging enough without the additional extras. Don't forget people do fully recover from MRSA. It can be challenging but antibiotics do work against the bug but it takes time and you will obviously need to look after your own immune system. I presume its contained in your wound rather than in your blood stream? It will take time but you will win the battle with MRSA.

Take care.

Steve

Re: Oesophagectomy Update (17 months on)

Thanks for the update, Steve. I just had my esophagectomy on Feb. 25and was discharged from the hospital on April 9. I've had someproblems with certain foods and am very tired, plus I have developedhe MRSA virus, which I am being treated for.Dr. Rice suggested I try not to attempt to go back o work for sixmonths and at the rate things are going, it is going to take every bitof it.My best to you for wonderful health,>> Dear all (that remember me),> > It is 17 months after my oesophagectomy and I thought it may behelpful to others if I give a little update. Also, some people may bewondering if I disappeared for bad reasons. > > But in short

summary...fantastic .> > I think in the Early post operative days I put a very brave face on.I recall feeling very flat following surgery and I can relateto that. I got very fed up with the slow pace of recovery. Now Ihave 17 months to look back at I can see exactly how far I have come.I stupidly went back to work far too early (after 3 months) and inthe end work had to go. So, I now have a job that lets me work thehours that I want to and whilst it pays less it fits my life styleperfectly. My main problem was trying to balance dumping syndrome,abdominal cramps and not being able to get off the toilet with a starttime for work...!> > For all those behind me in the time line. It really really does getbetter. I have learnt what foods to avoid.. I simply can not do amilky drink and carbohydrate together. They lead me to the toilet 20minutes later. But hey, everything goes

down. I recall my surgeonsaying it would take 18 months to 2 years before I felt anywhere nearrecovered. He was right. I have learnt so much about myself. I haveslowed right down. In fact I have slowed so much that I sometimesfeel like a man of 80 (no offence intended). But I am enjoying the pace.> > I try to kep my system flushed with fluids.. I find this helps. Especially tea (I have never drank so much tea). But it is great notto need fizzy drinks with my meals anymore. Also, time has allowed meto increase my portion size but I find psychology prevents me fromeating too much in one sitting as I am frightened of making my newoesophagus all baggy (just like the old one) even thought the surgeonhas said tht is almost impossible as the new tissue is very different.So, when eating out I tend to enjoy two starters rather than thethree courses. At least that way I can enjoy wine wit it

all.> > I do have to think what I am eating in terms of getting enoughcalories. But, if I think I am a bit short I simply eat a cream cakeor have ice cream. Yummy.> > Some of you may recall I developed cardiac trouble. It has all beeninvestigated and whilst it is real it is of no cause for concern. Thebest guess is it is due to the chest surgery but it is now of noproblem and I think it is resolving as I get the funny rhythms farless frequently. > > I am now doing so well that the hospital has discharged me. Theyonly want to see me if I feel I need them. > > So, to anyone behind me or even considering the oesophagectomy. Ithas been tough. Actually it's been harder than tough. The personalgrowth has been worth it and the physical improvement takes its timebut it does happen. It has been well worth it. I think I am gettingclose to a normal

lifestyle.> > My apologies for not logging on for some time. I will try harderand I am willing to answer any questions that anyone may have. Youall take care, thanks for reading and keep smiling.> > Steve> > > ____________ _________ _________ _________ _________ _________ _> Sent from .> A Smarter Email http://uk.docs. / nowyoucan. html>

Sent from .

A Smarter Email.

[Guest guest]

Hi Steve,

I am very thankful that you took the time to write us a post. Wow!, can I ever relate to the 20 minute time frame with the dumping syndrome. I had my esophagectomy 6 months ago, and I am also drinking a lot of tea. I don't really understand why it helps, I just know it does.

Thanks Again for posting,

All the best,

.

achalasia From: lennoxsteve@...Date: Sat, 19 Apr 2008 18:10:22 +0000Subject: Oesophagectomy Update (17 months on)

Dear all (that remember me),

It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons.

But in short summary...fantastic.

I think in the Early post operative days I put a very brave face on. I recall feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery. Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was trying to balance dumping syndrome, abdominal cramps and not being able to get off the toilet with a start time for work...!

For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down. I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right. I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace.

I try to kep my system flushed with fluids. I find this helps. Especially tea (I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all.

I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.

Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less frequently.

I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them.

So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle.

My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care, thanks for reading and keep smiling.

Steve

Sent from . A Smarter Email. Sign in now! Windows Live Messenger is giving you a chance to win $1000 a day until May 12th Check out SignInAndWIN.ca today!

[Guest guest]

Yes, the MRSA is in contained in my abdominal incision. I am going to

a surgeon Monday and I am sure they will get it under control.

I had a scary time with a banana first thing this morning but just now

I ate one and it went down fine....go figure!

You take care too,

> >

> > Dear all (that remember me),

> >

> > It is 17 months after my oesophagectomy and I thought it may be

> helpful to others if I give a little update. Also, some people may be

> wondering if I disappeared for bad reasons.

> >

> > But in short summary....fantastic .

> >

> > I think in the Early post operative days I put a very brave face on.

> I recall feeling very flat following surgery and I can relate

> to that. I got very fed up with the slow pace of recovery. Now I

> have 17 months to look back at I can see exactly how far I have come.

> I stupidly went back to work far too early (after 3 months) and in

> the end work had to go. So, I now have a job that lets me work the

> hours that I want to and whilst it pays less it fits my life style

> perfectly. My main problem was trying to balance dumping syndrome,

> abdominal cramps and not being able to get off the toilet with a start

> time for work...!

> >

> > For all those behind me in the time line. It really really does get

> better. I have learnt what foods to avoid. I simply can not do a

> milky drink and carbohydrate together. They lead me to the toilet 20

> minutes later. But hey, everything goes down. I recall my surgeon

> saying it would take 18 months to 2 years before I felt anywhere near

> recovered. He was right. I have learnt so much about myself. I have

> slowed right down. In fact I have slowed so much that I sometimes

> feel like a man of 80 (no offence intended). But I am enjoying the pace.

> >

> > I try to kep my system flushed with fluids. I find this helps.

> Especially tea (I have never drank so much tea). But it is great not

> to need fizzy drinks with my meals anymore. Also, time has allowed me

> to increase my portion size but I find psychology prevents me from

> eating too much in one sitting as I am frightened of making my new

> oesophagus all baggy (just like the old one) even thought the surgeon

> has said tht is almost impossible as the new tissue is very different.

> So, when eating out I tend to enjoy two starters rather than the

> three courses. At least that way I can enjoy wine wit it all.

> >

> > I do have to think what I am eating in terms of getting enough

> calories. But, if I think I am a bit short I simply eat a cream cake

> or have ice cream. Yummy.

> >

> > Some of you may recall I developed cardiac trouble. It has all been

> investigated and whilst it is real it is of no cause for concern. The

> best guess is it is due to the chest surgery but it is now of no

> problem and I think it is resolving as I get the funny rhythms far

> less frequently.

> >

> > I am now doing so well that the hospital has discharged me. They

> only want to see me if I feel I need them.

> >

> > So, to anyone behind me or even considering the oesophagectomy. It

> has been tough. Actually it's been harder than tough. The personal

> growth has been worth it and the physical improvement takes its time

> but it does happen. It has been well worth it. I think I am getting

> close to a normal lifestyle.

> >

> > My apologies for not logging on for some time. I will try harder

> and I am willing to answer any questions that anyone may have. You

> all take care, thanks for reading and keep smiling.

> >

> > Steve

> >

> >

> > ____________ _________ _________ _________ _________ _________ _

> > Sent from .

> > A Smarter Email http://uk.docs. / nowyoucan. html

> >

>

>

>

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>

[Guest guest]

Dear Steve,

Well I certainly remember you. Thank you for your update. There is a lot there to reassure the new 'ectomy people. Your experience is very valuable and welcome.

I am happy to see both you and extolling the virtues of tea. For me it is an essential. I think it not only helps the food down but dissolves a lot of it too so that it can get down more easily. I am a mere "Myotomy" not an " 'Ectomy" but tea works wonders for me too. I would urge everyone to try it, especially those who have never considered it as an aide.

You can now regard yourself as one of our Group experts and I hope you will carry on sharing your wisdom and advice.

Best Wishes from Ann XX

From: Steve Lennox <lennoxsteve@...>Subject: Oesophagectomy Update (17 months on)achalasia Date: Saturday, 19 April, 2008, 7:10 PM

Dear all (that remember me),

It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons.

But in short summary...fantastic .

I think in the Early post operative days I put a very brave face on. I recall feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery. Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was trying to balance dumping syndrome, abdominal cramps and not being able to get off the toilet with a start time for work...!

For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down. I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right. I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace.

I try to kep my system flushed with fluids. I find this helps. Especially tea (I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all.

I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.

Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less frequently.

I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them.

So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle.

My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care, thanks for reading and keep smiling.

Steve

Sent from . A Smarter Email.

Sent from .

A Smarter Email.

[Guest guest]



Hi

I am new here but really appreciate all the updates and information from everyone who takes the time to post here. Glad to hear your summation is fantastic! I am awed by all of you who have had esophagectomies and are so upbeat and appreciative of your lifestyles.... I wonder sometimes how you do it!!

All my best!!

Dawn in Boston

Oesophagectomy Update (17 months on)

Dear all (that remember me),

It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons.

But in short summary...fantastic.

I think in the Early post operative days I put a very brave face on. I recall feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery. Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was trying to balance dumping syndrome, abdominal cramps and not being able to get off the toilet with a start time for work...!

For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down. I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right. I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace.

I try to kep my system flushed with fluids. I find this helps. Especially tea (I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all.

I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.

Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less frequently.

I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them.

So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle.

My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care, thanks for reading and keep smiling.

Steve

Sent from . A Smarter Email.

[Guest guest]

Hi Steve -

So good to hear from you. Can you believe it's been 17 months? Wow.

It's been just over a year for me. I like how you described me " feeling

flat " ....that is a perfect description. Funny, because it didn't hit right away.

It was probably about a month to a month and a half after surgery that it set

in. And I totally agree with you, that while you might see certain things while

they are happening, it really takes a good year or more to look back and see how

far you have come and how drastically things have changed, both mentally and

physically. I really feel like I am back to my old self again. I am happy. I

look forward to things. Last year at this time and all through that first summer

I was just down about everything, which is ridiculous because my 'ectomy surgery

went great - no complications at all - and while this sounds odd to say, I'm

going to say a fairly " easy " recovery. Now, keep in mind I've never had ANY

prior surgery to this, so I have nothing to compare it to. Also, when I say

" easy " I mean in respect to dealing with complications and such...I did my time

in the hospital, came home and that was that - no real issues with anything. Of

course I don't mean that to sound like the surgery was easy or to minimize or

downplay any of what we have been through - but compared to some others here

that have had issues and complications, mine was pretty uneventful. I just

remember feeling like everything was such an effort last year, and everything

was so dreaded. I just didn't care and was just so down about not being back to

normal and all the recovery. I don't really know why - I knew it would take

time, and I knew things wouldn't be perfect immediately. I can see it all now,

but can't put my finger on exactly why it happened (the feeling flat and

depressed, that is). But now things are great. I'm happy. I'm looking so forward

to the spring and summer and all the fun camping trips we will take with the

kids, and just all of it. I'm enjoying things again. Eating is great - I can eat

everything or anything with no issues. Of course I guess that's not entirely

true - there are certain things that bother my stomach, but a year ago I felt

deprived about it. Now, I just realize that I've had to change a little, and

just because I can't eat a ton of anything, I just pick and choose more wisely.

If it's something that has a tendency to bother my stomach, I just don't eat it,

or I have a few bites to get the satisfaction and then move on. It just doesn't

all seem as hard now. Life is good!

My biggest advice for anyone facing the 'ectomy, or newly recovering from one,

is just to be patient. I tell them, yes, there will likely be days that you

second guess your decision, but that's normal. It takes a long time to feel good

again. You will adjust and so will your body, but give it time, and most

importantly, share it with us because we can help by suggesting certain things

or just being there to talk to since we have all been through it. It is

definitely a challenge, but now that I'm on the other side by over a year, the

improvements over time are amazing.

I am so glad you are doing well, and I hope we continue to hear from you on the

board. Feel free to keep in touch with me over private email as well. I really

look forward to hearing from those that helped me when I was getting ready for

my surgery. You may not think you helped me, but you did. Just to bounce

thoughts and feelings off someone that had been through it did wonders. And I

hope I have been able to do that for others as well.

Love,

in NY

---- Steve Lennox <lennoxsteve@...> wrote:

> Dear all (that remember me),

>

> It is 17 months after my oesophagectomy and I thought it may be helpful to

others if I give a little update. Also, some people may be wondering if I

disappeared for bad reasons.

>

> But in short summary...fantastic.

>

> I think in the Early post operative days I put a very brave face on. I recall

feeling very flat following surgery and I can relate to that. I got very

fed up with the slow pace of recovery. Now I have 17 months to look back at I

can see exactly how far I have come. I stupidly went back to work far too early

(after 3 months) and in the end work had to go. So, I now have a job that lets

me work the hours that I want to and whilst it pays less it fits my life style

perfectly. My main problem was trying to balance dumping syndrome, abdominal

cramps and not being able to get off the toilet with a start time for work...!

>

> For all those behind me in the time line. It really really does get better.

I have learnt what foods to avoid. I simply can not do a milky drink and

carbohydrate together. They lead me to the toilet 20 minutes later. But hey,

everything goes down. I recall my surgeon saying it would take 18 months to 2

years before I felt anywhere near recovered. He was right. I have learnt so

much about myself. I have slowed right down. In fact I have slowed so much

that I sometimes feel like a man of 80 (no offence intended). But I am enjoying

the pace.

>

> I try to kep my system flushed with fluids. I find this helps. Especially

tea (I have never drank so much tea). But it is great not to need fizzy drinks

with my meals anymore. Also, time has allowed me to increase my portion size

but I find psychology prevents me from eating too much in one sitting as I am

frightened of making my new oesophagus all baggy (just like the old one) even

thought the surgeon has said tht is almost impossible as the new tissue is very

different. So, when eating out I tend to enjoy two starters rather than the

three courses. At least that way I can enjoy wine wit it all.

>

> I do have to think what I am eating in terms of getting enough calories. But,

if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.

>

> Some of you may recall I developed cardiac trouble. It has all been

investigated and whilst it is real it is of no cause for concern. The best

guess is it is due to the chest surgery but it is now of no problem and I think

it is resolving as I get the funny rhythms far less frequently.

>

> I am now doing so well that the hospital has discharged me. They only want to

see me if I feel I need them.

>

> So, to anyone behind me or even considering the oesophagectomy. It has been

tough. Actually it's been harder than tough. The personal growth has been

worth it and the physical improvement takes its time but it does happen. It has

been well worth it. I think I am getting close to a normal lifestyle.

>

> My apologies for not logging on for some time. I will try harder and I am

willing to answer any questions that anyone may have. You all take care, thanks

for reading and keep smiling.

>

> Steve

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

[Guest guest]

Hi Steve,So glad to hear from you. You gave me such hope when i first learned i needed the oesophagectomy at the beginning of last year. I am glad to hear you are recovering - i have often wondered what had happened and hoped you were OK. My surgery was 8 months ago and i am very well although still get the occasional dumping as well as acid problems at night. I have to be strict about eating after tea in the evening. BUT my life is so much better now than it was last year and for the last seven years in particular. All the wait and trauma has been worth it. Kev and i have been on holidays for 2 weeks and we have been out for meals and visited some wineries and

had a great time walking around some small country towns near the MUrray River. Life is good for us. Hope it continues to do so for you as well.Thanks for what you did for me last year.Deb from Melbourne Oesophagectomy Update (17 months on)Dear all (that remember

me), It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons. But in short summary...fantastic . I think in the Early post operative days I put a very brave face on. I recall feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery. Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was trying to balance dumping syndrome, abdominal cramps and not being able to get off the

toilet with a start time for work...! For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down. I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right. I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace. I try to kep my system flushed with fluids. I find this helps. Especially tea (I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size

but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all. I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy. Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less

frequently. I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them. So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle. My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care, thanks for reading and keep smiling. Steve

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This email you wrote has come at an extremely poignant time. My Father who was diagnosed with Achalasia 4 years ago has just been told that he needs a Oesophagectomy. He had the HM op 2years ago and it didn't really help him a huge amount so was unsuccessful. It has deteriotated much since and the Consultantant is recommending removing the gullet completely.

He is 67 years old and is petrified. The Consultant has asked him to go away and think about it due to the serious surgery proposed. We asked if my Father was to do nothing what the impact and long term would be on his health and well being? He said his main concern was that if left it would turn cancerous and then have no option for it to be removed. My Father also has a very tight opening from the gullet to the stomach (not sure if this is connected to the achalasia?) We really don't feel like we have asked or have enough information to make a decision and so looking for advice on whether a second opinion would help - what your experiences are? Basically any advice on what we should do now in order to make a good decision.

I am extremely emotional about this at present as I am very close to my Father and really want to help him - I have been to every appointment with him and aall his gastroscopy appt's (had about 10!) and so please feel free to advise.

Hope this email makes sense - sorry if it is a bit disjointed.

Thanks for your help in advance

Lina

Oesophagectomy Update (17 months on)

Dear all (that remember me),

It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons.

But in short summary...fantastic .

I think in the Early post operative days I put a very brave face on. I recall feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery. Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was trying to balance dumping syndrome, abdominal cramps and not being able to get off the toilet with a start time for work...!

For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down. I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right. I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace.

I try to kep my system flushed with fluids. I find this helps. Especially tea (I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all.

I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.

Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less frequently.

I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them.

So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle.

My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care, thanks for reading and keep smiling.

Steve

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[Guest guest]

Hi Lina - it is a very scary thing to think about, isn't it?

Thankfully you've found us as there are now - about 2 dozen of us who

have had the -ectomy in the last 2 years or so? It seems like every

other month there is someone else added to the list.

I take it you're in Europe? The best advice anyone can give you is to

find the BEST surgeon you can. There are a handful of surgeons who do

this surgery regularly and have very good success rates. When I was

advised to have the surgery, thankfully I had a few surgeons in mind

from this group and did some research and found one who does loads of

the surgery and traveled 10 hours to see him (I'm in the states). I

did have some complications but I'm only just over 3 months post-op

now and I'm doing really well.

I don't know exactly which country you're in but perhaps Steve or

Isabella will chime in with some surgeons names. I can't speak to the

likelihood that your father will develop cancer but it doesn't sound

like he is in such bad shape that he can't wait a few months while

you do some research and get some 2nd and 3rd opinions.

As far as the surgery, it can be done minimally invasive now so he

can expect 7-14 days in the hospital depending on complications and

most of us have found that after the first 2 months or so (the first

2 months were VERY hard) it gets much better and I feel really great

and I'm eating pretty much anything at anytime, just in small

quantities and frequently throughout the day. Please keep us posted

and ask any questions you (or your father) may have. Being able to

get information from people who had already had the surgery was an

absolute godsend!! I felt very prepared and ready to have my surgery

and then if I had questions, there were a whole load of people here I

could talk to and get answers from.

Good luck to you and your father and please let hime know we are

here. It's a very scary surgery to think about but it may make him

feel more at ease if he can communicate with those of us that have

already had it.

Take Care,

- in NC

achalasia free since Jan. 11th

>

> This email you wrote has come at an extremely poignant time.  My

Father who was diagnosed with Achalasia 4 years ago has just been

told that he needs a Oesophagectomy.  He had the HM op 2years ago

and it didn't really help him a huge amount so was unsuccessful.  It

has deteriotated much since and the Consultantant is recommending

removing the gullet completely.

> He is 67 years old and is petrified.  The Consultant has asked him

to go away and think about it due to the serious surgery proposed. 

We asked if my Father was to do nothing what the impact and long term

would be on his health and well being?  He said his main concern was

that if left it would turn cancerous and then have no option for it

to be removed.  My Father also has a very tight opening from the

gullet to the stomach (not sure if this is connected to the

achalasia?)  We really don't feel like we have asked or have enough

information to make a decision and so looking for advice on whether a

second opinion would help - what your experiences are?  Basically

any advice on what we should do now in order to make a good decision.

> I am extremely emotional about this at present as I am very close

to my Father and really want to help him - I have been to every

appointment with him and aall his gastroscopy appt's (had about 10!)

and so please feel free to advise.

> Hope this email makes sense - sorry if it is a bit disjointed.

> Thanks for your help in advance

> Lina

>

>

>

> Oesophagectomy Update (17 months on)

>

>

> Dear all (that remember me),

>  

> It is 17 months after my oesophagectomy and I thought it may be

helpful to others if I give a little update.  Also, some people may

be wondering if I disappeared for bad reasons.  

>  

> But in short summary...fantastic .

>  

> I think in the Early post operative days I put a very brave face

on.  I recall  feeling very flat following surgery and I can

relate to that.  I got very fed up with the slow pace of

recovery.  Now I have 17 months to look back at I can see exactly

how far I have come.  I stupidly went back to work far too early

(after 3 months) and in the end work had to go.  So, I now have a

job that lets me work the hours that I want to and whilst it pays

less it fits my life style perfectly.  My main problem was trying to

balance dumping syndrome, abdominal cramps and not being able to get

off the toilet with a start time for work...!

>  

> For all those behind me in the time line.  It really really

does get better.  I have learnt what foods to avoid.  I simply can

not do a milky drink and carbohydrate together.  They lead me

to the toilet 20 minutes later.  But hey, everything goes

down.  I recall my surgeon saying it would take 18 months to 2

years before I felt anywhere near recovered.  He was right.  I have

learnt so much about myself.  I have slowed right down.  In fact I

have slowed so much that I sometimes feel like a man of 80 (no

offence intended).  But I am enjoying the pace.

>  

> I try to kep my system flushed with fluids.  I find this helps. 

Especially tea (I have never drank so much tea). But it is great not

to need fizzy drinks with my meals anymore.  Also, time has allowed

me to increase my portion size but I find psychology prevents me

from eating too much in one sitting as I am frightened of making my

new oesophagus all baggy (just like the old one) even thought the

surgeon has said tht is almost impossible as the new tissue is very

different.  So, when eating out I tend to enjoy two starters rather

than the three courses.  At least that way I can enjoy wine wit it

all.

>  

> I do have to think what I am eating in terms of getting enough

calories.  But, if I think I am a bit short I simply eat a cream

cake or have ice cream.  Yummy.

>  

> Some of you may recall I developed cardiac trouble.  It has all

been investigated and whilst it is real it is of no cause for

concern.  The best guess is it is due to the chest surgery but it is

now of no problem and I think it is resolving as I get the funny

rhythms far less frequently.      

>  

> I am now doing so well that the hospital has discharged me.  They

only want to see me if I feel I need them. 

>  

> So, to anyone behind me or even considering the oesophagectomy. 

It has been tough.  Actually it's been harder than tough.  The

personal growth has been worth it and the physical improvement takes

its time but it does happen.  It has been well worth it.  I think I

am getting close to a normal lifestyle.

>  

> My apologies for not logging on for some time.  I will try harder

and I am willing to answer any questions that anyone may have.  You

all take care, thanks for reading and keep smiling.

>  

> Steve

> ________________________________

> Sent from .

> A Smarter Email.

> ________________________________

> Get the name you always wanted with the new y7mail email address.

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>

[Guest guest]

Thanks for your reply. Your story sounds like a very positive one and I would love to know more about it in detail.

I think finding the best surgeon and getting a 2nd and 3rd opinion is what we are now going to do and find out as much as we can about having an E (or not?!)

We live in the UK and are under Mr Aguanobi at Stepping Hill Hospital in Stockport. He is the only Consultant we have seen so far to date since my Father was diagnosed.

If he does go ahead with the E, will he be able to eat solid food or is there a need to build upto that through recovery? He currently is very bad with dairy products and anything sweet, will the E cure this?

You know I have so many questions - but don't really know where to start.

It's great to know this site is here and people likeyourself are kind enough to help with your own personal experience.

Think I need to digest what the consultant has told my Father and help him as much as I can.

Thanks for your kind words and hope you don't mind me asking you lots of questions - when I know what to ask?

Lina

x

Oesophagectomy Update (17 months on)> >

> Dear all (that remember me),>  > It is 17 months after my oesophagectomy and I thought it may be helpful to others if I give a little update. Also, some people may be wondering if I disappeared for bad reasons.  >  > But in short summary...fantastic .>  > I think in the Early post operative days I put a very brave face on. I recall  feeling very flat following surgery and I can relate to that. I got very fed up with the slow pace of recovery.  Now I have 17 months to look back at I can see exactly how far I have come. I stupidly went back to work far too early (after 3 months) and in the end work had to go. So, I now have a job that lets me work the hours that I want to and whilst it pays less it fits my life style perfectly. My main problem was

trying to balance dumping syndrome, abdominal cramps and not being able to get off the toilet with a start time for work...!>  > For all those behind me in the time line. It really really does get better. I have learnt what foods to avoid. I simply can not do a milky drink and carbohydrate together. They lead me to the toilet 20 minutes later. But hey, everything goes down.  I recall my surgeon saying it would take 18 months to 2 years before I felt anywhere near recovered. He was right.  I have learnt so much about myself. I have slowed right down. In fact I have slowed so much that I sometimes feel like a man of 80 (no offence intended). But I am enjoying the pace.>  > I try to kep my system flushed with fluids. I find this helps. Especially tea

(I have never drank so much tea). But it is great not to need fizzy drinks with my meals anymore. Also, time has allowed me to increase my portion size but I find psychology prevents me from eating too much in one sitting as I am frightened of making my new oesophagus all baggy (just like the old one) even thought the surgeon has said tht is almost impossible as the new tissue is very different. So, when eating out I tend to enjoy two starters rather than the three courses. At least that way I can enjoy wine wit it all.>  > I do have to think what I am eating in terms of getting enough calories. But, if I think I am a bit short I simply eat a cream cake or have ice cream. Yummy.>  > Some of you may recall I developed cardiac trouble. It has all been investigated and whilst it is real it is of no cause for

concern. The best guess is it is due to the chest surgery but it is now of no problem and I think it is resolving as I get the funny rhythms far less frequently.      >  > I am now doing so well that the hospital has discharged me. They only want to see me if I feel I need them. >  > So, to anyone behind me or even considering the oesophagectomy. It has been tough. Actually it's been harder than tough. The personal growth has been worth it and the physical improvement takes its time but it does happen. It has been well worth it. I think I am getting close to a normal lifestyle.>  > My apologies for not logging on for some time. I will try harder and I am willing to answer any questions that anyone may have. You all take care,

thanks for reading and keep smiling.>  > Steve> ____________ _________ _________ __> Sent from . > A Smarter Email. > ____________ _________ _________ __> Get the name you always wanted with the new y7mail email address. > > > ____________ _________ _________ _________ _________ _________ _> Sent from .> A Smarter Email http://uk.docs. / nowyoucan. html>

Sent from .

A Smarter Email.

[Guest guest]

Hey Lina - ask away!! The group isn't going anywhere so please don't

feel like you have to figure out all of your questions right now. As

they come up - just log on.

I started having swallowing problems at the age of 12 (about 1980 or

so) and didn't get properly diagnosed until 1983. I had several

dilations and then had a heller myotomy with fundoplication in Jan.

of 1989. A few follow up dilations and then I did reasonably well for

many years. Spasms were always my biggest issue. Heart attack,

elephant sitting on your chest spasms, regularly until I had my -

ectomy this past Jan. I had them for so long, I still kind of wait

for them to start again, I have to keep reminding myself that I don't

have an E anymore so I won't have spasms anymore!!

After the surgery you can't eat or drink anything for several days

and then you start on the clear liquids, full liquids, etc. It does

take awhile to build back up but in the meantime your given tube

feedings through a catheter into your intestines (not at all painful,

it runs at night while you sleep) so it keeps up your calories and

nutrition. Because of the feeding tube, even after 17 days in the

hospital, I had lost less than 10 pounds (1/2 a stone??)

I am now about 3 1/2 monts post op and I can eat most anything I

want, just in smaller quantities. there's nothing that I've found I

can't tolerate, there are just some things I need to take in

moderation (coffee, chocolate, anything gassy) but even that I expect

to get better over time. I've even had a couple of glasses of wine in

one sitting and felt fine!!

As far as the dairy and sweets thing, it sounds like he has dumping

syndrome - a very common side effect of any kind of gastro surgery.

It does continue after the surgery but it tends to lessen over time

as your body adjusts. He may just find he has an intolerance to dairy

and sweets and/or some of the group with regular dumping issues have

found that taking an immodium every day has helped to ease it. That

is going to be a trial and error thing for him as we are all

different.

I hope this helps a bit. Again, please don't hesistate to ask

questions as they arise and we'll all help the best we can.

Please let your dad know we are here. Achalasia can be very lonely

and he may take comfort in knowing we are here.

Keep us posted.

- in NC

achalasia free since Jan. 11th!!

> >

> > This email you wrote has come at an extremely poignant time. 

My

> Father who was diagnosed with Achalasia 4 years ago has just been

> told that he needs a Oesophagectomy.  He had the HM op 2years

ago

> and it didn't really help him a huge amount so was

unsuccessful.  It

> has deteriotated much since and the Consultantant is recommending

> removing the gullet completely.

> > He is 67 years old and is petrified.  The Consultant has asked

him

> to go away and think about it due to the serious surgery

proposed. 

> We asked if my Father was to do nothing what the impact and long

term

> would be on his health and well being?  He said his main concern

was

> that if left it would turn cancerous and then have no option for it

> to be removed.  My Father also has a very tight opening from the

> gullet to the stomach (not sure if this is connected to the

> achalasia?)  We really don't feel like we have asked or have

enough

> information to make a decision and so looking for advice on whether

a

> second opinion would help - what your experiences are? 

Basically

> any advice on what we should do now in order to make a good

decision.

> > I am extremely emotional about this at present as I am very close

> to my Father and really want to help him - I have been to every

> appointment with him and aall his gastroscopy appt's (had about

10!)

> and so please feel free to advise.

> > Hope this email makes sense - sorry if it is a bit disjointed.

> > Thanks for your help in advance

> > Lina

> >

> >

> >

> > Oesophagectomy Update (17 months on)

> >

> >

> > Dear all (that remember me),

> >  

> > It is 17 months after my oesophagectomy and I thought it may be

> helpful to others if I give a little update.  Also, some people

may

> be wondering if I disappeared for bad reasons.  

> >  

> > But in short summary...fantastic .

> >  

> > I think in the Early post operative days I put a very brave

face

> on.  I recall  feeling very flat following surgery and I

can

> relate to that.  I got very fed up with the slow pace of

> recovery.  Now I have 17 months to look back at I can see

exactly

> how far I have come.  I stupidly went back to work far too early

> (after 3 months) and in the end work had to go.  So, I now have

a

> job that lets me work the hours that I want to and whilst it

pays

> less it fits my life style perfectly.  My main problem was

trying to

> balance dumping syndrome, abdominal cramps and not being able to

get

> off the toilet with a start time for work...!

> >  

> > For all those behind me in the time line.  It really really

> does get better.  I have learnt what foods to avoid.  I

simply can

> not do a milky drink and carbohydrate together.  They lead me

> to the toilet 20 minutes later.  But hey, everything goes

> down.  I recall my surgeon saying it would take 18 months to

2

> years before I felt anywhere near recovered.  He was right.

 I have

> learnt so much about myself.  I have slowed right down.  In

fact I

> have slowed so much that I sometimes feel like a man of 80 (no

> offence intended).  But I am enjoying the pace.

> >  

> > I try to kep my system flushed with fluids.  I find this

helps. 

> Especially tea (I have never drank so much tea). But it is great

not

> to need fizzy drinks with my meals anymore.  Also, time has

allowed

> me to increase my portion size but I find psychology prevents me

> from eating too much in one sitting as I am frightened of making my

> new oesophagus all baggy (just like the old one) even thought the

> surgeon has said tht is almost impossible as the new tissue is very

> different.  So, when eating out I tend to enjoy two starters

rather

> than the three courses.  At least that way I can enjoy wine wit

it

> all.

> >  

> > I do have to think what I am eating in terms of getting enough

> calories.  But, if I think I am a bit short I simply eat a cream

> cake or have ice cream.  Yummy.

> >  

> > Some of you may recall I developed cardiac trouble.  It has

all

> been investigated and whilst it is real it is of no cause for

> concern.  The best guess is it is due to the chest surgery but

it is

> now of no problem and I think it is resolving as I get the funny

> rhythms far less frequently.      

> >  

> > I am now doing so well that the hospital has discharged me. 

They

> only want to see me if I feel I need them. 

> >  

> > So, to anyone behind me or even considering the

oesophagectomy. 

> It has been tough.  Actually it's been harder than tough. 

The

> personal growth has been worth it and the physical improvement

takes

> its time but it does happen.  It has been well worth it.  I

think I

> am getting close to a normal lifestyle.

> >  

> > My apologies for not logging on for some time.  I will try

harder

> and I am willing to answer any questions that anyone may have. 

You

> all take care, thanks for reading and keep smiling.

> >  

> > Steve

> > ____________ _________ _________ __

> > Sent from .

> > A Smarter Email.

> > ____________ _________ _________ __

> > Get the name you always wanted with the new y7mail email address.

> >

> >

> > ____________ _________ _________ _________ _________ _________ _

> > Sent from .

> > A Smarter Email http://uk.docs. / nowyoucan. html

> >

>

>

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>