Re: Re: Finally....getting the j-tube removed!

[Guest guest]

Hi Barb,

I really hope you are right, that I will feel so much better once it's

out. I think that will be the case, but I've just felt so down lately

and I can't seem to shake it.

I guess we'll see what happens next Wednesday when it comes out.

I can't believe they waited so long before giving you the j-tube when

you had your surgery. I thought the j-tube was a standard part of the

surgery. I can't imagine them not giving it to you during the surgery

so that you had it in and ready to go.

in NY

Re: Finally....getting the j-tube removed!

achalasia

> -

> so glad that all went well!!! As someone who has " been there " - I

> can

> almost PROMISE you (in my opinion) that once that J tube is

> removed you

> will feel SO MUCH better - Mentally AND physically!

> For those that are facing an esophagectomy - I suggest that you

> ask

> about having a j tube when they do the surgery. When I had mine -

> they

> did NOT do the j tube until I had lost 100 pounds and was so weak

> I

> could not carry a purse even. It was about 5 months after my

> esophagectomy that they did the j tube. I feel that my recovery

> would

> have been MUCH faster had they done the j tube to start with. I

> was

> also only on clear liquids for about 2 days, soft diet for about 5

> days

> then only regular diet. Be an advocate for your own health!

> Barbara

>

>

[Guest guest]

Hi Tonia,

It's good to hear that other people have gone through the ups and

downs and range of emotions. I don't know what my problem is - I can't

even pinpoint it exactly. I am looking forward to next Wednesday

though and can't wait for this tube to come out of me!

It is a good thing we don't have to drive back to Cleveland for this

visit. We would have done it if we had to, but it's just a relief to

not have to take the time and money to go there again. Taking the tube

out will take all of a couple of minutes, so there was really no

point. I will have to do yearly visits to Dr. Rice as well, although I

am not even sure what they will consist of. SO as of now I am done

until next year unless I have issues.

I have had the same thoughts about Dr. Rice - what if he retires at

some point, then who do we go to? I don't even want to think about it.

Although, I've already reached the end of the achalasia journey with

having an esophagectomy, so I'm not really sure what else I would

really need. But I know what you are saying. To have finally found a

really competent doctor after all this time (as Dr. Rice always says

to me, if only he had seen me 10 years ago....) and then have to worry

about how long we have him for. I think as long as you stay in touch

with him and his office, he would probably always be willing to refer

you to someone else if the day comes that he retires. I'm sure it

would be to someone who trained under him (he's got to keep control

somehow - LOL!).

Give our best and say hello to your husband for us. It was so

great to be able to meet you guys when we were all in Cleveland. Talk

to you soon!

Love,

Re: Finally....getting the j-tube removed!

achalasia

> Hey TRACY-

> I know you are happy that the j tube is finally coming out!

> I would say what you have been feeling is mild depression.Even

> though you are going through a process that will change your life

> for the better,its pure hell getting there.Lots of emotions going

> on

> with all you have been through. went through this really

> bad.You just get sick and tired of being sick and tired!

> Things will continue to get better once all the tubes and DR

> visits

> come to a end.Kinda liking anything else,you need that closer and

> once you have all this behind you and can begin to be normal again.

> THEN IT WILL BE SO WORTH ALL OF THIS

>

> Thats great that you dont have to drive all the way back to

> Cleveland.Thats a good little drive for small things that can be

> done just locally(not that thats small but you know what I

> mean).They wanted us to come back yearly for a barrium but I told

> DR

> Rice we would just do it here and have it sent to him.He didnt

> care

> for that idea too much but its like I said,The tech people to the

> test and then he reviews them later so what diffrence is it if we

> do

> it here and have it sent and then he read it later? He did review

> them before and after surgery though with us the first time,after

> that he done it in his office. We are over 8 hours so thats a big

> long ride for a 15 minute test.

>

> Anyway-It just doesnt seem like its been this long.I know for you

> it

> seems like a eternity though.I know your anxious about getting

> this

> tube out and begininng to get back to a normal routine but do take

> it slow.If your like after his surgery he thought he could

> just do everything he use to do once things healed on the

> outside,Dr

> Rice says it takes longer on the inside.

>

> Well just wanted to say hello and say I am so glad things have

> worked out so well for you!! THANK GOD FOR DR RICE HUH? My husband

> and I were talking the other day about what if's again and such

> and

> we were like , What we will do when Dr Rice is no longer around

> for

> ?? Oh lord here we go again.WORRY WORRY WORRY-UGH..PARENTHOOD

>

> Take care - says hello and so does hubby .They ask

> of

> you often.Tell your hubby hello for us and we will talk soon.

> Hugs-Tonia

>

>

> >

> > Hi all! I'm so excited....today is 7 weeks since my

> esophagectomy

> at

> > The Cleveland Clinic by Dr. Rice, and I finally have a set date

> that

> > my j-tube is coming out! As you all know, I was lucky enough to

> have

> > a fairly easy surgery - no major complications. Recovery has

> seemed

> > easy enough, although there have been frustrations and as it

> > continues I find myself getting very restless with everything.

> Not

> > sure if it's just boredom or what my problem is, but the past

> few

> > weeks have almost been like at times I am just in a mild

> depression,

> > with a complete lack of motivation to do things and just feeling

> > down. However, I feel good today because I now have a date to

> get

> my

> > j-tube removed (Next Wednesday!!), and we can do it locally

> instead

> > of driving the 5 1/2 hrs. each way back to Cleveland. I am

> hoping

> > that this is the one last major step that will allow me to fully

> > reclaim my body (scars and all) and move on towards normalcy. I

> can

> > now really feel like this is all behind me and put my focus back

> on

> > the important things in my life, like my kids and my wonderful

> > husband, who has been my rock through this whole ordeal. I think

> > this is finally a huge turning point!

> > As many others in this group head towards surgery, I will be

> > thinking of all of you. Just remember, as dear Maggie said to me

> > prior to my surgery, nothing is ever as bad as it seems. I think

> the

> > anticipation and fear prior to surgery really makes it hard, and

> as

> > someone who is now on the other end of things, you just have to

> find

> > the faith that you will come through it ok and be better for it.

> I

> > wish all of you well.

> > in NY

> >

>

>

>

[Guest guest]

, I am delighted that the time is near to get that J-tube out.

I know that I can't be nearly as happy about it as you are.

I think one you get back into a regular routine the bout of

depression will leave. I know after I retired I found I was doing

that and I learned I had to get involved with things and people

outside the home. To me, that is about the worse feeling in the

world, especially when you can't find a reason for feeling that

way.

Hang in there girl, you are almost home.

Hugs,

MaggieSee what's free at AOL.com.

[Guest guest]

Hi , Have they told you why that is your next best option? Have you got a mega E.? Or is there another reason? It's very important that you understand WHY you should have an E. Furthermore you should weigh the pro's and contra's against one another. It's a difficult choice whether or not to have an E. I know about 's situation and I know about 's. I understand both 's and 's motivation for going/not-going for it. It's a difficult decision, yet also a very personal one too. In Holland I have also been told my next best option is E., yet in Germany Dr. Schulz is very positive concerning the success of another myotomy. I am going to have that one done next year. I am absolutely not going to have an E. yet, as I feel my life right now is far too good to undergo such heavy surgery. Love, Isabella

<rmvenable@...> wrote: Is everyone generally happy with their result from their esophagectoym?My Doctors say this is my next best option. I am not so convinced.>> Hi all! I'm so excited....today is 7 weeks since my esophagectomy at > The Cleveland Clinic by Dr. Rice, and I finally have a set date that > my j-tube is coming out! As

you all know, I was lucky enough to have > a fairly easy surgery - no major complications. Recovery has seemed > easy enough, although there have been frustrations and as it > continues I find myself getting very restless with everything. Not > sure if it's just boredom or what my problem is, but the past few > weeks have almost been like at times I am just in a mild depression, > with a complete lack of motivation to do things and just feeling > down. However, I feel good today because I now have a date to get my > j-tube removed (Next Wednesday!!), and we can do it locally instead > of driving the 5 1/2 hrs. each way back to Cleveland. I am hoping > that this is the one last major step that will allow me to fully > reclaim my body (scars and all) and move on towards normalcy. I can > now really feel like this is all behind me and put my focus back on > the

important things in my life, like my kids and my wonderful > husband, who has been my rock through this whole ordeal. I think > this is finally a huge turning point!> As many others in this group head towards surgery, I will be > thinking of all of you. Just remember, as dear Maggie said to me > prior to my surgery, nothing is ever as bad as it seems. I think the > anticipation and fear prior to surgery really makes it hard, and as > someone who is now on the other end of things, you just have to find > the faith that you will come through it ok and be better for it. I > wish all of you well.> in NY>

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[Guest guest]

They have told me why. I have a mega esophagus, that is “tortuous

and sigmoid shaped”. However I believe it has been this why since my first

myotomy. Also, the first surgeon things that the scar tissue has grow to

a major artery. He don’t want to risk laparoscopic surgery.

My doctor are affiliated with Stanford Medical Center and periodically teach

there. I realize that they are not know for being the best doctor for

digestive disorder, but they are great doctors. On Wednesday I see Dr.

Campos @ UCSF. They have done quite a lot of studies on Achalasia

there. More info on my history, the best that I can remember, was just

posted yesterday. When I go back to So. Cal, I hope to gather the rest of

my record to clear-up a lot of my “lost memory.

I’m trying to weigh the Pros and the Cons. I just

haven’t heard any Pros yet.

Venable

From:

achalasia [mailto:achalasia ] On Behalf Of Isabella

Arnold

Sent: Saturday, May 19, 2007 1:53 AM

achalasia

Subject: Re: Re: Finally....getting the j-tube removed!

Hi ,

Have they told you why that is your next best option? Have

you got a mega E.? Or is there another reason? It's very important that you

understand WHY you should have an E. Furthermore you should weigh the pro's and

contra's against one another. It's a difficult choice whether or not to have an

E. I know about 's situation and I know about 's. I understand both

's and 's motivation for going/not-going for it. It's a difficult

decision, yet also a very personal one too.

In Holland I have also been told my next best option is E.,

yet in Germany Dr. Schulz is very positive concerning the success of another

myotomy. I am going to have that one done next year. I am absolutely not going

to have an E. yet, as I feel my life right now is far too good to undergo such

heavy surgery.

Love,

Isabella

<rmvenable@...> wrote:

Is everyone generally happy

with their result from their

esophagectoym?

My Doctors say this is my next best option. I am not so convinced.

>

> Hi all! I'm so excited....today is 7 weeks since my esophagectomy

at

> The Cleveland Clinic by Dr. Rice, and I finally have a set date

that

> my j-tube is coming out! As you all know, I was lucky enough to

have

> a fairly easy surgery - no major complications. Recovery has seemed

> easy enough, although there have been frustrations and as it

> continues I find myself getting very restless with everything. Not

> sure if it's just boredom or what my problem is, but the past few

> weeks have almost been like at times I am just in a mild

depression,

> with a complete lack of motivation to do things and just feeling

> down. However, I feel good today because I now have a date to get

my

> j-tube removed (Next Wednesday!!), and we can do it locally instead

> of driving the 5 1/2 hrs. each way back to Cleveland. I am hoping

> that this is the one last major step that will allow me to fully

> reclaim my body (scars and all) and move on towards normalcy. I can

> now really feel like this is all behind me and put my focus back on

> the important things in my life, like my kids and my wonderful

> husband, who has been my rock through this whole ordeal. I think

> this is finally a huge turning point!

> As many others in this group head towards surgery, I will be

> thinking of all of you. Just remember, as dear Maggie said to me

> prior to my surgery, nothing is ever as bad as it seems. I think

the

> anticipation and fear prior to surgery really makes it hard, and as

> someone who is now on the other end of things, you just have to

find

> the faith that you will come through it ok and be better for it. I

> wish all of you well.

> in NY

>

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the free toolbar and rest assured with the added security of spyware

protection.

[Guest guest]

Hi , I found your story on Care Place. Our stories aren't similar, but do have a lot in common. If I were you, I wouldn't go for treatment by a doctor not known for being the best for digestive disorder, even if he/she is in general a great doctor. Being a great doctor in general is not good enough. You are at a stage, where you need to be seen by the very very best doctor you can find. If there still is path other than esophagectomy you can take, it can only be a successfull path if you take it with the most experienced and best possible doctor. Don't go for less!!! Please don't... Love, Isabella Venable <rmvenable@...> wrote: They have told me why. I have a mega esophagus, that is “tortuous and sigmoid shaped”. However I believe it has been this why since my first myotomy. Also, the first surgeon things that the scar tissue has grow to a major artery. He don’t want to risk laparoscopic surgery. My doctor are affiliated with Stanford Medical Center and periodically teach there. I realize that they are not know for being the best doctor for digestive disorder, but they are great doctors. On Wednesday I see Dr. Campos @ UCSF. They have done quite a lot of studies on Achalasia there. More info on my history,

the best that I can remember, was just posted yesterday. When I go back to So. Cal, I hope to gather the rest of my record to clear-up a lot of my “lost memory. I’m trying to weigh the Pros and the Cons. I just haven’t heard any Pros yet. Venable From: achalasia [mailto:achalasia ] On

Behalf Of Isabella ArnoldSent: Saturday, May 19, 2007 1:53 AMachalasia Subject: Re: Re: Finally....getting the j-tube removed! Hi , Have they told you why that is your next best option? Have you got a mega E.? Or is there another reason? It's very important that you understand WHY you should have an E. Furthermore you should weigh the pro's and contra's against one another. It's a difficult choice whether or not to have an E. I know about 's situation and I know about 's. I understand both 's and 's motivation for going/not-going for it. It's a difficult decision, yet also a very personal one too. In Holland I have also been told my next best option is E., yet in Germany Dr. Schulz is very positive concerning the success of another myotomy. I am going to have that one done next year. I am absolutely not going to have an E. yet, as I feel my life right now is far too good to undergo such heavy surgery. Love, Isabella <rmvenablecomcast (DOT) net> wrote: Is everyone generally happy with their result from their esophagectoym?My Doctors say this is my next best option. I am not so convinced.>> Hi all! I'm so excited....today is 7 weeks since my esophagectomy at > The Cleveland Clinic by Dr. Rice, and I finally have a set date that > my j-tube is coming out! As you all know, I was lucky enough to have > a fairly easy surgery - no major complications. Recovery has seemed > easy enough, although there have been frustrations and as it > continues I find myself getting very restless with everything. Not > sure if it's just boredom or what my problem is, but the past few > weeks have almost been like at times I am just in a mild depression, > with a complete lack of motivation to do things and just feeling > down. However, I feel good today because I now have a date to get my > j-tube removed (Next Wednesday!!), and we can do it locally instead

> of driving the 5 1/2 hrs. each way back to Cleveland. I am hoping > that this is the one last major step that will allow me to fully > reclaim my body (scars and all) and move on towards normalcy. I can > now really feel like this is all behind me and put my focus back on > the important things in my life, like my kids and my wonderful > husband, who has been my rock through this whole ordeal. I think > this is finally a huge turning point!> As many others in this group head towards surgery, I will be > thinking of all of you. Just remember, as dear Maggie said to me > prior to my surgery, nothing is ever as bad as it seems. I think the > anticipation and fear prior to surgery really makes it hard, and as > someone who is now on the other end of things, you just have to find > the faith that you will come through it ok and be better for it. I > wish all of you

well.> in NY> Get the free toolbar and rest assured with the added security of spyware protection.

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[Guest guest]

Hi Maggie,

Good to hear from you, as always!

I am very anxious to get this tube removed. I think it's the last step

and then I'll finally feel " free " of all this in a sense, even though

I know I am still recovering and dealing with the changes in eating

and all that comes with that.

I never thought I'd be wanting to return to work but I think I need

to. It's just hard. I try so hard to not feel down, and you are right,

the hardest part is not being able to pinpoint why I feel that way. My

husband said to me that it'll probably be a few days before I go back

to work and then I'll snap out of it and start doing things and be

wishing for more time off. LOL

in NY

Re: Re: Finally....getting the j-tube removed!

achalasia

> , I am delighted that the time is near to get that J-tube out.

> I know that I can't be nearly as happy about it as you are.

>

> I think one you get back into a regular routine the bout of

> depression will leave. I know after I retired I found I was doing

> that and I learned I had to get involved with things and people

> outside the home. To me, that is about the worse feeling in the

> world, especially when you can't find a reason for feeling that

> way.

>

> Hang in there girl, you are almost home.

>

> Hugs,

> Maggie

>

>

>

> ************************************** See what's free at

> http://www.aol.com.

[Guest guest]

,

Although we are all different, and our healing will be different from

person to person, I COMPLETELY think that the result you get is going

to be a direct result of how experienced your surgeon is. You should

definitley get more than one opinion, I did before I went forward with

surgery. This is a huge surgery and the decision should not be taken

lightly.

That being said, I had mine 7 weeks ago, as you know, and all has gone

fairly smoothly. I certainly can't complain about the recovery. I

really thought things would be worse, although I've never had any

surgery before, so I had all sorts of fears and crazy thoughts running

through my head. I also had the added benefit of going into surgery

healthy, I was eating a full diet and had not lost weight, and I am

young (turning 34 in June) which helped me to recover fast with

minimal complications. That being said, it is still a tough surgery.

I had the luxury of being able to dictate the timing of my

esophagectomy. I did not have to do it now, but with the issues I have

had in the past, and after doing all the research and knowing the bad

shape of my esophagus (and therefore lack of other options), my

husband and I decided to take control of the situation and go for it

now rather than waiting it out. That was a personal choice and it was

hard to come to, but it made sense for me. I have two young children

and I know it was just a matter of time before I started having major

issues again - it just wasn't worth it - there were no other viable

options left, and even all of my doctors stated just that.

As for being happy with the result, I can't answer that yet. While I

have healed fast and well, it has only been 7 weeks. I'm eating again,

but all that seems so new and my system is adjusting and it will take

time before I am " back to normal " and can really say how it is. I can

tell you that the people I had contact with that have also had this

surgery all eat a normal diet, although they still can't eat as much

at one time as they used to, but they are all ok and feel fine and

don't regret their decision to have it done.

I hope this helps, and I'd be happy to answer any other questions you

have.

I can't recall where you are from, but I highly recommend Dr. Rice at

the Cleveland Clinic. He is the best, and has an enourmous amount of

experience. We traveled 5 1/2 hrs each way and were away from home for

my surgery, and it was all worth it. Just make sure you are going to

surgeons that are experienced.

Take care,

in NY

Re: Finally....getting the j-tube removed!

achalasia

> Is everyone generally happy with their result from their

> esophagectoym?

>

> My Doctors say this is my next best option. I am not so convinced.

>

>

>

>

>

>

> >

> > Hi all! I'm so excited....today is 7 weeks since my

> esophagectomy

> at

> > The Cleveland Clinic by Dr. Rice, and I finally have a set date

> that

> > my j-tube is coming out! As you all know, I was lucky enough to

> have

> > a fairly easy surgery - no major complications. Recovery has

> seemed

> > easy enough, although there have been frustrations and as it

> > continues I find myself getting very restless with everything.

> Not

> > sure if it's just boredom or what my problem is, but the past

> few

> > weeks have almost been like at times I am just in a mild

> depression,

> > with a complete lack of motivation to do things and just feeling

> > down. However, I feel good today because I now have a date to

> get

> my

> > j-tube removed (Next Wednesday!!), and we can do it locally

> instead

> > of driving the 5 1/2 hrs. each way back to Cleveland. I am

> hoping

> > that this is the one last major step that will allow me to fully

> > reclaim my body (scars and all) and move on towards normalcy. I

> can

> > now really feel like this is all behind me and put my focus back

> on

> > the important things in my life, like my kids and my wonderful

> > husband, who has been my rock through this whole ordeal. I think

> > this is finally a huge turning point!

> > As many others in this group head towards surgery, I will be

> > thinking of all of you. Just remember, as dear Maggie said to me

> > prior to my surgery, nothing is ever as bad as it seems. I think

> the

> > anticipation and fear prior to surgery really makes it hard, and

> as

> > someone who is now on the other end of things, you just have to

> find

> > the faith that you will come through it ok and be better for it.

> I

> > wish all of you well.

> > in NY

> >

>

>

>