6 WKs out of MIE and no appetite

My husband took forever to
My husband took forever to get an appetite after his Ivor Lewis. He came home without a feeding tube but with the accessibility still available if needed. He continued to lose weight. He took some prescription appetite enhancers but they didn't seem to work that well. Your surgeon/oncologist may recommend something. He would eat something for a week and then turn against it. The Carnation Instant Breakfast was too sweet for him and caused the "dumping syndrome." Excessive spices also caused very painful stomachache. It's a tough question. If he's supposed to be eating by mouth is the tube feeding taking his appetite. You need to consult with your medical help as well as with a dietician. Just as Paul from South Carolina mentioned in a post sometime back, his wife would buy food that she thought he would eat; he'd eat and not want it anymore and then, it'd be thrown out. My husband lost an additional 15 pounds following surgery, and it was almost going to be going back to the jtube. It was trial and error. He's regained the 15 pounds albeit slowly. He had lots and lots of stomach pain; deep belching type sounds; can't throwup even now. How long is your husband going to have to have the feeding tube? Is this usual protocol following an MIE to continue on a feeding tube. Others on this site know much more about eating problems. I did give my husband a daily vitamin and assorted supplements and tried to get him back to his pre-cancer routine. It took him some 6 to 7 months to get an appetite and even now, from time to time, he has little appetite. He'd doing great. Working a fulltime schedule and was even able to have his shoulder surgery that had had to be delayed for over a year due to his EC. It is hard, but keep on trying.

Eating for calories comes first, appetite comes later
Linda,

It took me about six months after my surgery to develop any kind of appetite. During the time I was using a J-tube not only was I not hungry, I was frequently nauseous. That got better after I stopped using the J-tube.

I worked with a nutritionist to develop an eating schedule that included six or seven small meals a day. I was motivated to eat; even though I did not have any appetite, because I wanted to get rid of the J-tube. I knew I had to prove I could get enough calories via mouth in order to get it taken out.

When I say six or seven small meals; I mean very small. Breakfast would consist of half a bagel with cream cheese, and one hard boiled egg. Lunch would be half a ham and cheese sandwich. Dinner would be a piece of fish the size of my palm and some cottage cheese or macaroni and cheese. In between; I had snacks like crackers with peanut butter, yogurt, or a banana. I found if I ate small meals frequently it was easier to make myself eat even though I was not hungry. I also had less intestinal discomfort (e.g. bloating and cramps).

I think the other reason I had little appetite is that I, like many surgical patients, had some post surgical depression. I have been following your posts of Jim’s progress and I think I may recognize some of my post surgical depression symptoms.

As we go into surgery our focus is purely survival. We are fearful of the potential effects of cancer and the risks of surgery. Once we survive surgery we have to deal with the complications of the tremendous shock to our bodies of the surgery. In my case the complication was infection in both of my surgical incisions, in Jim’s case pneumonia. I, like Jim, was very active and healthy before my surgery. I was the person who took care of the other people in my family. It was a new and frightening experience to be so fragile.

Of course my friends and family, not realizing how fragile I felt, wanted me to rejoin the world after surgery. Let’s go to dinner, let’s go to a movie, let’s go shopping, when do you think you can play golf again? Although I am sure they were trying to cheer me up all those things just reminded me of all the things I could no longer do, at least at the time.

Of course my wife was concerned that I was eating so little and although she tried not to nag me about eating she found it hard to adjust to putting so little on my plate at meals so a lot of food got wasted. It was also depressing to see a plate loaded up with twice as much food as I could eat.

Jim has been through a horrendous struggle. I would be natural to be a little depressed. I think it may be helpful to talk to him about something he can’t do now that he wants to be able to do again. In my case it was play golf. In order to do that he needs to convince himself that if he eats (even if he is not hungry) he can get rid of the J-tube and regain his strength. Appetite will come later.

There are some antidepressant medications that are appetite enhancers as well. Of course that would be a direction only if Jim is genuinely depressed and Jim’s doctor felt it would be helpful.

Given Jim’s pre-surgical health issues, he as climbed a huge mountain, it may take some time for him to get back to “the old Jim.”

The other thing I felt was helpful was eating a little bit of things I liked or things I saw at the grocery store that looked appetizing. We threw away a lot of food during the first six months after surgery. But I got there eventually.

I continue to pray for you and Jim daily. I am happy to hear that he is making progress against the pneumonia. He is one strong guy to have made it through what he has endured. I am sure he will get back to eating at his own pace.


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!

linda1120 said:

Thank you Sandra and Paul
Thank you both for your responses. I will share them with Jim, and it helps me to know that everything he is dealing with is so normal for this kind of surgery. Paul, you are right, and I do remind Jim that he is one tough cookie to have survived all he has been through. I am so grateful I have a husband; I wasn't sure he was going to make it there for a while. I believe the power of prayer brought him through.

I think we need to meet with the nutritionist and set up a eating plan that Jim is in control of. I don't want to bother him about eating. He is tired of dragging that feeding tube around for six weeks! Being free of that will automatically make him feel better. I think there has been some depression and if it continues I believe medical intervention might be helpful.

Sandy, I hope Jim's metabolism doesn't change because he is pretty slim right now. If he continues to lose weight he will look pretty bad. I am glad you no longer have weight, blood pressure, or diabetes issues any longer! There is always a silver lining.

Linda

Linda, I also had a deep
Linda, I also had a deep faith in God, before I got EC as well as now. I know God has a plan for me and where I am today is God's will. No matter where we are, The power of prayer will give us comfort to except His will.

It is a fact that no two people are the same. We all react to treatment differently. I also had some depression. Mine was mostly caused from not getting my strength back as fast as I thought I should. I found out I was very indepentant and I never realized this about myself, so it was hard to depend so much on others. Starting a low impact exercize
program at the gym, helped me a lot, physically and mentally. It is good to talk to a nutrionist. They have good advice.

Praying for you and Paul,
sandra