PUKE

Dave Tronnier

 

2 years post Ivor Lewis YEA !!! still clean. To this day I still throw up nearly every time I eat as I have no feeling of being full until my food is in my throat and I have no recourse but to remove some of it. Eat, puke, eat, puke and repeat. It’s crazy trying to put on weight let alone hold on to what I have. September 2015 @ 303 lbs and overweight for sure by 60-70 lbs. Today I’m 200 + or - 5 lbs 6’2”and struggling to gain weight. My legs look like I’m part chicken, I’m thinking about buying a yellow feathered shirt and pants and a red hat. Well well well, it’s better than dead so I’ll keep on with the fight. Life is good but different.  

Anybody else have this kind of issue 2 years post Ivor?

 

LorettaMarshall

Steve-U R long past due 4 a II opinion~U need a new doctor!

Hello Dave ~ For a short answer, I have monitored this site for only 15 years.  In that time, I’ve not read of anyone else having this problem.  This is not at all normal.  Your surgeon should have given you a good explanation for this.  This is not a normal part of an Esophageal Cancer recovery.

Now assuming you had the “Transthoracic Esophagectomy (TTE) commonly referred to as “OPEN” and that’s just what it is.  Some doctors have not upgraded their skills and while they’re confident they can perform the surgery, it CANNOT compare with the totally laparoscopic esophagectomy known as the “Ivor Lewis Minimally Invasive Esophagectomy.  Now since you only had your surgery 2 years ago—and YES we EC cancer patients are happy to be counting “up” the days of survival with no evidence of disease—but your situation is “abnormal!”

No doubt you had a “J” tube inserted during the operation so that you could get a minimum of daily nutrition.  It is a normal part of the recovery process.  The removal of that tube will vary with each patient and how quickly they adjust to the new way of eating “mini” many meals.  I always liken the new diet to a new baby—lots of soft mushy foods—then onto more solids—finally to meat!

And you should be being seen by a “nutritional expert” who is helping you with your diet.  My soul—I’m hoping you have “just been DUMPED!”

My final and only suggestion is that you need to go to a well-qualified Thoracic Surgeon who is good at repairing what other less qualified surgeons “mess up.”  Yes—I said “mess up” and I know some right here in town, but I won’t name names.  My life’s too short to get in that kind of mess.  I just want to say—this is not normal and you need a second opinion.

So this is the most I can offer.  I will give you the U.S.NewsHealth report and suggest you choose one hospital nearest you and go there for a SECOND opinion.  Of course, you’ll take your records with you.  That is providing you have some good insurance that will allow you to choose and not just accept their recommendations.  But whatever—you need to go to a thoracic surgeon who performs the laparoscopic procedure.  You certainly don’t need to be “cut up” again.

In a conversation with Dr. Luketich once, he remarked that he has many patients that come to him for “repair” when another doctor has not performed the surgery correctly.  For instance, he said that it’s critical to be certain the “new gastric tube” is not TWISTED as it is being rejoined.  (Anastomosis)

How many surgeries has this “surgeon” performed?  What is the “leak rate?” What is the morbidity rate?  How many of his surgeries come with complications, etc.  How many lymph nodes does he remove for pathology purposes?  It could just be that you were “not put back together again!” 

Perhaps we should dub you “Humpty DUMPTY” for more than one reason.  Most EC patients will have to adjust to things moving too quickly and exiting the bowels, but NOT daily vomiting.  Please see another doctor.  This isn’t “quality of life” for sure.  You shouldn’t have to live like this, and I would not settle for this as “normal” because it is NOT!  You might even be one of those with a “twisted gastric conduit!”  It happens when surgeons are not well qualified.  But there are hospitals that have a large number of patients who have Esophagectomies.  In larger facilities, the hospital sees more patients that have complications and are better prepared to deal with them.  My recommendation:  GO TO A GOOD REPAIR SHOP and get things straightened out!  I'm hoping that you have a good insurance policy that allows you to consult with the very best surgeons for a second opinion.

Sincerely sorry for your saga,

Loretta (Wife of William, EC Stage III) MIE @ UPMC by Dr. James D. Luketich back in 2003 with no complications to date and still cancer free.)

_P.S.  Since I am a Stage IV Ovarian cancer patient presently undergoing another chemo treatment session, I may not be able to respond to you on a regular basis, but in your case I don't know anything else to say that might be helpful.  ________________________________________________ 

1.        http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG…”

 

 

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2.       https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

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 3.      http://www.vitals.com/doctors/

Put your surgeon’s name in here and see his credentials

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 4.       https://www.healthgrades.com/physician/

“Now you can choose a doctor based on knowledge. Not chance.  To get the right care, you need the right doctor and the right hospital. Now there's a way to find them…”

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 5.      https://www.youtube.com/watch?v=cjB3w7ovgNE

GTSC 2013 James Luketich Esophageal Anastomosis: How I Do It.

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6.  http://www.upmc.com/media/experts/Pages/james-d-luketich.aspx

 “Dr. Luketich’s areas of interest include thoracic and esophageal surgery. These include gastroesophageal reflux disease, management of hiatal hernias, management of giant paraesophageal hernias, and other disorders of the esophagus, including diverticulitis, strictures, and many others. He has particular expertise in the multi-disciplinary management (combined chemotherapy/radiation and surgery) of esophageal and gastroesophageal cancer, Barrett’s esophagus, and lung cancer. He performs numerous complex operations on disorders such as these using minimally invasive techniques, for which he has become world renowned, performing over 1,500 minimally invasive esophagectomies.

Dr. Luketich is the principal investigator or co-investigator on numerous research grants and has published over 250 peer-reviewed manuscripts, 150 invited reviews, textbook chapters, and editorials, and 350 abstracts. He is frequently invited as an honored speaker around the world to present topics that relate to his research and minimally invasive techniques…”

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6.      https://nortonsafe.search.ask.com/search?chn=1000820&ctype=videos&doi=2016-09-30&geo=US&guid=333950C0-F332-49D9-8207-443FE0C2AF63&locale=en_US&o=APN11910&p2=^EQ^ch20us^&page=1&prt=NSBU&q=james+d+luketich+video+2017&tpr=7&ver=22.8.0.50&ots=1516938015085

 Dr. Jobe is an associate of Dr. Luketich’s.  I like his information. 

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7.      https://www.youtube.com/watch?v=7S3owHnfcCs

(My note:  Dr. Luketich addressing Beijing Conference and answering questions in late 2017.  He says when looking for a good surgeon, check out his track records.  Has he written any articles that have been accepted in Peer review journals.   How many surgeries has he performed?  These are questions you should have asked your surgeon, and I doubt you would be having this problem today.  Dr. Luketich has encouraging words about treatment for EC patients in the future.  We love this man since he was my husband’s surgery for the 2003 MIE.  UPMC ranks #6 for Gastrointestinal Surgeries.)

#CITSAC 2017#James D. Luketich

 ASVIDE - Published on Aug 18, 2017 - Meet the Professor in the 2017 Beijing International Academic Conference on Thoracic Surgery and the 5th National Cancer Center Annual Conference…Category - Science & Technology

 

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Xenabeana

PUKE

Hi Dave, I am also a survivor of EC.  My surgery was Sep. 29th of 2017, so not as long ago as yours, however I to have the same issues that you have. Not knowing your full until you feel it in your throat. I had the minimally invasive surgery that you had as well, and my surgeon is one of the top 5 thoracic surgeons in the country that does this type of surgery. I was told that it will take me time to adjust to the changes in my diet. What I do know is that there is not much I can eat anymore, and bread and most meats are out for me. I have so far lost 35 lbs. and still losing.  I do get upset that I wake up at night with the acid reflux still and that in turn causes me to puke. I can only hope that I will be able to eat normal food, but for now I'm going back to soft foods to see if that will help. 

CancerEclipse

Hi Dave. I can't identify

Hi Dave. I can't identify with your two-year deal because I'm out from the operation at 11 months. I handle the puking issue by eating 5 times a day and judge how much I eat by the amount of food on the plate. I also listen to my body to stop and also what to eat, and that seems to help. But I'm sure after two years you've probably tried that as well. My path with EC was a 3-year journey using medical, naturopathic, and spiritual means to fight it. If interested in some of that info, please write me at <Content removed by CSN Support Team>. Glad you are cancer free -- hope I follow your path as well. I had a friend who had the operation and died 6 months later from cancer that spread from the operation throughout his body.

Dave

Kevin T

2 year survivor stage 3

Hello Dave, even after 2 year I still vomit at least a couple times a week. My body still overproduces mucus during the day and sometimes I end up over eating and I end up vomiting up the mucus. I'm just greatful it is just the mucus this time and I can keep the food in. This must come from the smaller volume in the stomache.