Hi. We're new.

paul61 said:

It will take time and patience
Hello Jackie and Tony,

I had Ivor Lewis surgery in December of last year. I went from 150 lbs prior to surgery to 119 lbs when I finished my post surgical chemotherapy. I took me about six months to get used to my new plumbing. During that time I had a difficult time gaining any weight back. Since then I have gained back about 10 lbs of the weight loss and have leveled off at about 130 lbs. My experience was:

1. It takes time for your body to adjust to the surgical modifications.
2. Foods high in sugar content seem to cause dumping syndrome and should be avoided
3. Eating small meals six to seven times a day helps get the needed calories without discomfort
4. Trying to force yourself into a pattern that matches traditional breakfast, lunch, and dinner times; and amounts, will not work
5. Having someone constantly telling you that you have to eat because you need to gain weight is just irritating and causes non productive anxiety
6. Having someone tell you they would like to give you a few of "their pounds" is even more irritating than having someone tell you to eat all the time
7 Be patient, keep little snacks with you all the time, like crackers with peanut butter, pretzel sticks, etc so you can eat whenever the urge hits you.
8. Initially you may have to let the clock remind you when it is time to eat rather than depend on hunger to remind you.
9. High calorie supplements like BeneCalorie, Ensure, Carnation Instant Breakfast, and Whey Protein can be helpful if taken in small amounts during the day (trying to drink a full serving tends to cause dumping)
10. Be kind and patient with yourself. This is a journey not a race.

After a while I found my body adjusted and now I can eat almost anything I want in small amounts. The fun part is I can snack as much as I want anytime I want. I try to make my snacks healthy items that are high in complex carbohydrates and protein. I also try to eat at least three small servings of fruit or vegetables every day. I find eating an apple sliced up about two hours prior to going to bed helps prevent reflux.

I have not heard of anyone gaining back all the weight they lost after surgery. Most people tend to gradually gain back some weight and reach a new lower weight that suits their new system and level out at that weight. As long as Tony feels good and has energy I would not get too focused on a number.

I hope Tony will be feeling better soon.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Thank you all.
I cannot express my gratitude for all your kind words and enouragement. I truly thank you all for all your responses. I will start by filling out some of the gaps from my introduction
*Anthony is 30 years old

*We live in Baltimore, Maryland

*yes, my profile picture was taken on our wedding day :-) the year went by really fast.
*He was staged at T2N1Mx

*His "care team" include an oncologist, cardiothoracic surgeon, an oncology nurse and a nutritionist. He was/is treated at Johns Hopkins Hospital in Baltimore,MD

*He had the transthoracic esophagectomy

*He had a J-tube for about 4 weeks following the surgery. The surgeon had explained that he would insert the tube during surgery and if he passes the swallow study (immediately following the surgery), he would be allowed to drink water and eat very soft food. They did the swallow study 5 days after surgery and there was some minor leakage. It wasn't significant but the surgeon kept him on the J-tube to let the wound heal.

*He has had one dilation. He has no trouble swallowing at all. But the surgeon has advised us any changes, or if Anthony wants another dilation, to contact him immediately and he'll be seen the next morning.

*The reason why we started to puree food is beacuse I wanted to make sure he gets all of his nutrients. I'm able to add his ensure, vitamins along with the food. With my husband, having all of these things on one serving is alot easier than having to remember to take his vitamins or drink his ensure Oh, also with ensure, if he were to drink it on its own, he'll do so just a little bit at a time, otherwise it causes terrible dumping. With the puree method, I'm able to add a whole bottle to one meal and he's fine.

*He has quite the appetite! And how this brings me joy!

*His doctors say he's doing exceptionally well

*His energy depends on where his weight is. But most of the time it's great. Everytime he drops to less than 120Ibs, he does get a little sluggish. This has happened a few times and this is what brought on the puree idea.

*His mother is an absolutely wonderful and great woman. But she worries.A LOT. (Understandably, like any mother would) She was thinking the doctors should be doing more to get his weight up. I've read enough and talked enough to his care team to understand that it's very dificult to gain weight. Particularly since it's only been less than 6 months after the surgery. But when she (my mother in law) said to me that he could die if he keeps on losing weight (he will lose all the necessary electrolytes she said) I picked up on her "worry" energy and basically, got very anxious and upset. I sat my husband down and talked to him. He said to me exactly what you all are saying to me, that it takes time. I totally understand this, I always have. My mother in law means well but my nerves were shot after that conversation with her.

Thank you for getting to the end of my novel I really appreciate it.