Life With A Reconstructed Body

Hello!

I had an esophagectomy 14 months ago and I still have problems maintaining weight, mainly due to dumping problems. Also, I find it difficult to get used to eating with a colon in my chest, since I have to eat very slowly, chew very well and often get reflux. If you had an esophagectomy, how do you experience this new construction of your body? I would appreciate any shared experience!

On 3/27/2008 Cactuslime wrote:

Hello!

I had an esophagectomy 14 months ago and I still have problems maintaining weight, mainly due to dumping problems. Also, I find it difficult to get used to eating with a colon in my chest, since I have to eat very slowly, chew very well and often get reflux. If you had an esophagectomy, how do you experience this new construction of your body? I would appreciate any shared experience!

Cactuslime,

I had an esophagectomy in 2005. However, I had the Ivor-Lewis type, so do not have a reconstructed or substitute esophagus. That being the case, I can't comment very well on the mechanics of eating. I can tell you what I believe helps me avoid dumping. I avoid fats, especially the bad fats. I do use a lot of good olive oil with no problem. Also, I avoid too much sugar, white flour and white potatoes. Whole grains work well. I eat an apple a day - really! In short, I eat what is now recommended for a well balanced, healthy diet.

You are probably saying "I've done all that, so tell me something new". But, that all works for me. That and aerobic exercise.

Good Luck and KEEP MOVING,

Steve 

Hello,

I am new to the board, and wish to be an encouragement to you all.  I was diagnosed with esophageal cancer in January of 2004, had chemo and radiation simultaneously through the end of April 2004 and then had a complete esophagectomy on May 24 2004.  Yes, I had all the side effects, dumping syndrome, dry heaves, difficulty swallowing, etc.  It took me a good 8 months to get to feeling decent, but by November of that year the feeding tube was out and the port came out in December.  18 months later we drove across country, through 22 states and took a nice 7 week vacation.

The dumping syndrome can be helped by drinking one of those drinks like VitaminWater or Snapple with electrolytes.  I got the kind with the most electrolytes I could find.  That brought me back quicker after the dumping so I could continue doing what I was doing without blacking out and getting dizzy.  ALL of the nasty symptoms do go away eventually.  The doctors and nurses were right.  After 2+ years, my bowels became regular and I can now even bend over and pick things up off the floor and weed my garden without losing the contents of my stomach.

My doctor told me peristolisis would take over and keep things down and he was right.  One of the best investments we made was getting an adjustable bed so I could sleep in my bedroom instead of the living room in a recliner. 

I would never have believed I would ever have a good quality of life again, but it did come back.  It takes patience, good friends and time.  I had a wonderful lady who went before me with esophageal cancer and an esophagectomy who was able to keep me encouraged through the process until the healing finally was completed.

Oh, I was lactose intolerant in the beginning, right after my operation.  After 3 months, I began using Lactaid and putting very small amounts of cheese back into my diet.  Now I can eat cheese and pizza and ice cream again.  It definitely took a good 8 months before I saw real progress, so hang in there.  I will try to remember to watch the message board if any of you need more encouragement.

I lost 2/3 of my esophagus and they pulled what was left of my stomach (I lost 25% of my stomach also) up through the diaphragm to meet the couple of inches of esophagus that was left.  Most of the time I don't even think about not having a normal digestive system.  Unless I am reminded, I just go along like regular folks.  I found that I don't need to eat every 2 hours either.  I am now eating regular 3 meals a day and have gone from 126 pounds to 163 pounds.  A size 6 to a size 14.    

Oh yes,  lots of prayer and faith in Christ does wonders.  I would not have made it without the prayers of so many wonderful people.

God bless you all.

Thank you for sharing your experiences!

Even if everyone responds different to the same treatment, it's really helpful to know I'm not alone to have all these symptoms. It's also interesting to know that it can take a couple of years to get used to everything. It's a slower process than I initially thought... But that means there's still hope for improvement...

I too have invested in an adjustable bed, it's really good to have so I can sleep without using 6 pillows...

I wish the best to all of you! I'll keep my hopes up!