Hello, I Am Surviving Ec

After reading many of the posts here, it is with great hesitatency and a tear in my eye that I try to join in.  I was DX with EC in July 2007.  I'm Very lucky in that is was caught very early due to a followup on my Barrett's Esophagus condition;  I only had a small spot at the junction of my Esophagus and Stomach.  I had the Surgery on 7/27/07, to remove it.  Five days later they still could not get me awake from the surgery, when all of my esophagus and 80% of my stomach died and a second surgery had to be preformed to removed all of my esophagus and the 80% of my stomach.  The surgeon and team of medical Dr.'s had to keep me in a medically induced coma for thrity-one days before I regained conciousness.  During this time I was pronounced dead twice (and my wife was notified) and then resuccitated.  At one time My Wife tells me that I had tubes in my intestine, another in the small part of my stomach that was left to me, a tube in each lung coming out under my shoulder blades for drainage, a ventalator for breathing and a cathera, IV tube and then they had to install a filter in a main artery to stop the blood clots.

I only share the above for those of you who are still in the middle of the fight and are wondering if is possible to survive the treatment.  IT IS!  WITH THE HELP OF GOD!  I've just had a followup CT Scan and the Dr.'s couldn't find any sigh of cancer at this time.  I'm back to work and almost back to full strength.  I did lose down from a weight of 303 lbs to a current weight of 235 lbs. which is great, I think.

Now my surgeon is talking about reconstruction of my esophagus using a piece of my colon or small intestine.  The mortality rate seems to be very high ( up to 13%) on this surgery.  I would very much appreciate hearing from someone who has had this reconstruction and if he/she has been able to eat near normally afterwards.  My only alternative is to stay on the feeding tube for the rest of my natural life and I am only sixty years old.

Good luck to each of you, and May God Bless You,

Jimmie 

I was blessed with the doctors being able to do a stomach pull-up with my surgery four years ago.  I can't give you any advise on the surgery.  It sounds like you really had a tough time with the original surgery and the only advise I have is get more than one opinion.  I have heard of the colon replacing the esophagous, and I also read the survival rate.  I do know that my sister has a neighbor that lived on the feeding tube for about ten years.  She was elderly and eventually passed from something unrelated to the surgery.  Best of luck, get other opinions, and continue to post so that we can keep up with you.  My prayers are with you as they are with every poster on this board.

Gerri

Hello Jimmie,

       I don't have any info for you, sorry. I hope someone else will.

 WOW. What an ordeal you have been through. You must have one heck of a fighting spirit and the grace of God to have been what you have and still be here to talk about it.

 I just wanted to say welcome to the board. I hope you get the answers you need to make the best decision you can. Please keep us informed. I will be praying for you !!

                                          Pat

Hi Jimmie-I too can't say what would be right for you, but my husband had the pull up with his esophagectomy also.  Sometimes they have stomch they can use to reconstruct and sometimes they need to use bowel, but it doesn't seem to be that out of the ordinary.  The nutritional state of the patient has a lot to do with outcome, and how you feel about not being able to eat would be a major part of the consideration.  Some people would probably do it just for that.  I would have never expected to hear those kinds of complications when it was found so early, but there is always a risk with surgery.  Find someone who has done a lot of this kind of surgery.  It's probably pretty terrifying to think about facing it again after your last experience.  He usually is able to eat most things without much difficulty. 

 

On 1/29/2008 Chahootney wrote:

After reading many of the posts here, it is with great hesitatency and a tear in my eye that I try to join in.  I was DX with EC in July 2007.  I'm Very lucky in that is was caught very early due to a followup on my Barrett's Esophagus condition;  I only had a small spot at the junction of my Esophagus and Stomach.  I had the Surgery on 7/27/07, to remove it.  Five days later they still could not get me awake from the surgery, when all of my esophagus and 80% of my stomach died and a second surgery had to be preformed to removed all of my esophagus and the 80% of my stomach.  The surgeon and team of medical Dr.'s had to keep me in a medically induced coma for thrity-one days before I regained conciousness.  During this time I was pronounced dead twice (and my wife was notified) and then resuccitated.  At one time My Wife tells me that I had tubes in my intestine, another in the small part of my stomach that was left to me, a tube in each lung coming out under my shoulder blades for drainage, a ventalator for breathing and a cathera, IV tube and then they had to install a filter in a main artery to stop the blood clots.

I only share the above for those of you who are still in the middle of the fight and are wondering if is possible to survive the treatment.  IT IS!  WITH THE HELP OF GOD!  I've just had a followup CT Scan and the Dr.'s couldn't find any sigh of cancer at this time.  I'm back to work and almost back to full strength.  I did lose down from a weight of 303 lbs to a current weight of 235 lbs. which is great, I think.

Now my surgeon is talking about reconstruction of my esophagus using a piece of my colon or small intestine.  The mortality rate seems to be very high ( up to 13%) on this surgery.  I would very much appreciate hearing from someone who has had this reconstruction and if he/she has been able to eat near normally afterwards.  My only alternative is to stay on the feeding tube for the rest of my natural life and I am only sixty years old.

Good luck to each of you, and May God Bless You,

Jimmie 

Hi Jimmie,

 My father has stage IV EC and is not eligible for surgery and therefore have no information that I can attest to personally. I do agree with the other posts-make sure to get a 2nd opinion. The screaming message I've gotten from all the material that I've read is to make sure you go to a hospital that has performed A LOT of this type of surgery. One statement I read sticks with me. In the case of EC and related surgeries, practice does make perfect.

Thank you for your willingness to share with everyone on this board. It is very encouraging to hear your story and I will pray for you as you try to determine what the best option. You know, God has a way of taking the bad things that happen to us and use them for our good and to His glory. He's already done that by bringing you to this board!

Please keep us posted on how you are doing!

 

Hi!

I have not had cancer, but I had an other disease in my esophagus which made it necessary to do an esophagectomy and replace it with a part of my colon. So now I have a colon in my chest... ;) It's been a year since the surgery. Unfortunately, I had some bad luck after the operation with lots of complications, and I had to have a feeding tube to my jejunum for 9 month. I can now swallow quite well, but have dumping and other digestive problems, because of the loss of my vagus nerves. So I still have much eating problems. Hopefully, it will get better as time goes on. Most people don't get as much trouble as I have though, that's what my doctors told me.

How are you "wired" inside now? If they removed your esophagus and stomach, what's connected to your throat?

I agree that it's very important to select a surgeon with great experience in this operation; the serious risks with such a complicated surgery increases with an unexperienced surgeon. Only choose a top team of surgeons, is my advice.

It would be great to hear from anyone who did an esophagectomy with colon interposition, since it's a rare operation. The reason I join you is because most people who go through this is cancer patients. Even though I don't have cancer, I've been through the same surgery and know how it effects you. I hope you don't mind. I wish the best for all of you!

 

On 1/30/2008 Cactuslime wrote:

Hi!

I have not had cancer, but I had an other disease in my esophagus which made it necessary to do an esophagectomy and replace it with a part of my colon. So now I have a colon in my chest... ;) It's been a year since the surgery. Unfortunately, I had some bad luck after the operation with lots of complications, and I had to have a feeding tube to my jejunum for 9 month. I can now swallow quite well, but have dumping and other digestive problems, because of the loss of my vagus nerves. So I still have much eating problems. Hopefully, it will get better as time goes on. Most people don't get as much trouble as I have though, that's what my doctors told me.

How are you "wired" inside now? If they removed your esophagus and stomach, what's connected to your throat?

I agree that it's very important to select a surgeon with great experience in this operation; the serious risks with such a complicated surgery increases with an unexperienced surgeon. Only choose a top team of surgeons, is my advice.

It would be great to hear from anyone who did an esophagectomy with colon interposition, since it's a rare operation. The reason I join you is because most people who go through this is cancer patients. Even though I don't have cancer, I've been through the same surgery and know how it effects you. I hope you don't mind. I wish the best for all of you!

My throat is sewn off.  I have nothing running from my throat to my stomach.  I do have a hole from my throat to an ostomy bag to prevent me from drowning on my own saliva.  The bag cannot be seen when covered by my shirt and is glued directly to my skin. Overall this and the feeding tube is a small price to pay for the extention of life that God granted me.

Jimmie