Re: Thanks for support re esophagectomy and thanks Jan

[Guest guest]

I just want to thank you so much for your honesty and openness.

This is what I need more than anything right now. I will return the

favor in kind to whoever needs my support and personal experience.

What a tough time you have had. I am happy to hear that finally you

have some relief. I can only wish for the same for myself. If you

wouldn't mind answering a couple of other question. ..

How much of your stomach did you lose. Was is more than about 1/3 ?

which is what they told me I would be losing. I hope I am

understanding the process. How were you getting nutritional support

during the 1st three weeks. Was it always through the J tube. Then

after you went home another three weeks on the J tube. Was this what

you expected from the outset? Did everything go as you expected or

were there complications. I was told they would start me on liquids

and then soft diet almost immediately. I would have the J tune

placed but it would only be used for backup if I needed additional

nutritional support. YOu have had a much longer recovery than I

expected. Both surgeons I spoke to said recovery would be on average

4 to 6 weeks at the low end. What medicines were you on? For other

conditions? or for pain? I hope I am not being to personal. I have

been trying to get the surgeons office here in NY to put me in touch

with other patients who've gone through this but so far they have

not come up with anyone willing to speak with me. I hope I am doing

the right thing by having my surgery in NY. Maybe I should contact

Dr. Rice. Perhaps he could assure me that the team I have decided on

is well regarded. I am wondering , if a doctor's patients don't

want to talk to other patients...it's making me wonder. I am

planning to have this surgery in one month. That gives me a little

more time to check things out Again, thank you so much.

>

> In a message dated 6/6/2005 1:32:04 P.M. Eastern Daylight Time,

> cnkalvar@a... writes:

>

> I have asked many, many questions

> but need to have info from a patient's perspective. Like how

does one

> feel after surgery? where does it hurt? can you ever really eat a

> regular diet again (other than pureed/soft food)? I have not

eaten

> normally in 30 years, even after myotomies. I have a 'mega-

sygmoid-

> esophagus, very large and 'tortured' but the thought of losing it

> totally is still difficult.

>

>

> Hi,

> Dr Rice at the Cleveland clinic did my partial esophagectomy last

August.

> I believe his approach was transhitial(sp?)- abdominal and neck.

Dr. Rice's

> patients cover most of the 7th floor at Cleveland Clinic. I live

about 5 hrs

> away from Cleveland, so Dr. Rice would not release me to go home

for 3 weeks

> and one week in a step down unit.

> He watched me carefully for correct digestive ability to break

down fats,

> etc. He did a gastric pull up, using part of my stomach as a food

tube. When I

> went home, I had to be released in the morning so that a home

health care

> nurse could see me that day and get me started using a tube

feeding pump and

> formula at home. I had a tube called a " J " tube because it was

inserted into the

> jejunum intestine.

> I was on the feeding tube for about three weeks before Dr. Rice

cleared me

> for transitioning back onto soft foods and liquids. It was really

hard before

> that time. I wasn't in a lot of pain, but the J tube was

uncomfortable. I

> felt really weak and did not do too much except take care of the

tube feeding

> and administering medicines to myself all day!

> I was off work for 2 and a half months. When I went back to work

I was

> tired, but happy to be back at work and my coworkers were so

happy to see me

> eating again!

> Now, 10 months later, I can swallow and eat anything I want,

except for two

> things.

> One, I cant eat very much because my stomach is much smaller. But

that's

> okay, I am 5 ft tall and weigh about 120 lbs. which is fine.

> Two, I cant seem to eat and drink at the same time, there just

isn't enough

> room.

> I wont lie to you, this was the toughest ordeal I've ever been

through in my

> life.

> The surgery and recovery was a bear, and I was far from home.

> But now, I feel like I do have a better quality of life than I

did before.

> I also need to tell you that I needed this surgery not for

achalasia, but

> because I had a messed up Nissen fundoplication surgery that no

local

> Cincinnati surgeon would touch. They all looked at me and told me

to just live with my

> inability to swallow and get by on liquid nutrition.

> I just couldn't see spending the rest of my life like that, so I

opted for

> surgery with Dr. Rice.

> I am now happy I did.

> Jan in Northern KY