Continuing Saga of the feeding tube

Hi Linda and Jim
Thanks for
Hi Linda and Jim
Thanks for your recent update. From what I have learned along this cancer journey is after the surgery you do have to eat several smalls meals a day. I would suggest he takes his time drinking the carnation instant breakfast. The new stomach does not like too much too soon. I have also learned about the "dumping" situation. It is known that too much dairy and sugar will make this happen. Take it slow Jim. Slow and easy will win the race. My mom just had her mitral valve replaced in December, as well as a 4 way bypass. She is coming along slowly, but surely. I will continue to pray for both of you. Keep in touch, and enjoy your "me" time at the gym Linda.
Tina in Va

Cannot vomit. Remarkable retching
My husband cannot vomit and there are times he so wishes he could. His retching can clear a room. Dumping syndrome causes him great stomach pain. HOWEVER, he has come so far and is getting around great. He could not tolerate Carnation Instant Breakfast. We go from one food to another. For awhile cereal, but then developed stomach problems. Then, oatmeal. Same thing. Now eats a very toasted thin bagel, one egg and sausage for breakfast. He snacks on Nature Valley Sweet and Salty Peanut Bars. Loves steak. Initially, he couldn't walk from one end of the house to the other. Now, gets around excellently, although not as fast nor as far. What bugs me is when he is a little hungry. He tells me to go ahead and order and he will eat some of mine. I don't mind the sharing but he only eats a tad of the food, and I continue to munch away and the scales are showing it. Of course it is his fault. I'm not going to take the blame...... He no longer has coffee with his breakfast. Drinks a beer or two daily. Some favorite foods such as meatloaf, he no longer desires. We are very thankful, but it is still a learning situation. I buy food. I give away food. He is now laughing and talking like he once did. Everyday is a little better. Hang in there. If you find a solution to the inability to vomit let us know. By the way, he had his surgery 11 months ago. Mary

Some suggestions that worked for me
Linda,

It is good to hear that Jim is making progress. I am sure to both of you the progress seems slow but those of us who don’t see you everyday are happy to hear no more discussion of pneumonia or visits to the emergency room.

Getting used to our new plumbing is a challenge to be sure. I thought I would pass along some things that worked for me. First, you probably have these publications but just in case some documents from UPMC on post esphagectomy eating.
________________________________________________________________________
Diet after Esophagectomy

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf
________________________________________________________________________
Dumping syndrome diet

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf
________________________________________________________________________

These diets will encourage foods that are high in protein and low in simple carbohydrates. They suggest drinking minimal amounts of liquid with meals and then significant amounts of water or other liquids that are low in sugar an hour after meals.

I eat approximately six to eight times a day. I eat according to the clock because I am very seldom hungry.

You will find other members of the group also use high calorie supplements like Boost or Carnation Instant Breakfast to provide extra calories. A warning about high calorie supplements, many members have found that they need to drink them a couple of ounces at a time rather than all at once to avoid dumping.

An example daily menu for me would include:

Breakfast----------------Half a bagel with cream cheese and 2 eggs scrambled
Mid Morning snack--------Package of peanut butter crackers (six crackers)
Lunch--------------------Half a Ham and Cheese sandwich with potato chips
Mid Afternoon snack------Banana and Granola Bar
Dinner-------------------Salmon (4 Oz) , Au Gratin Potatoes, Carrots (small portions)
Evening Snack------------Apple pealed and cut into sections
2 Hours prior to bed-----8 Oz of Yogurt

I had to smile when I read Mary’s post because Nature Valley Sweet and Salty Peanut Bars is also my favorite snack and I have at least one or two of those a day as a treat.

I have also found that frozen yogurt makes an excellent substitute for ice cream. I find that Edy's Slow Churned Yogurt Blends are the closest to regular ice cream in taste and texture.

In general I have found that I can eat most things as long as I practice portion control and eat slowly being sure to chew my food thoroughly. I have learned to set my fork down periodically and rest to be sure I am not eating too fast or too much.

I think a combination of time and learning how to eat reduces episodes of dumping.

Things I know I can not eat include any items that are high in sugar content. I don’t seem to be lactose intolerant because I eat a lot of items with cheese and that does not seem to bother me but anything like syrup on pancakes, or cookies, or candy, or ice cream has a predictable result. I have learned to read labels on processed food. You would be surprised at how many items contain sugar that you would not suspect (like catsup for instance).

I know the learning process can be frustrating for both you and Jim. Karen and I bought and threw out a lot of food before we figured out what did and did not work for me.

I also have found that whole wheat pasta works great for me, as does brown rice, and whole grain breads. They seem to digest better with my new plumbing than highly processed foods.

I have also found that it works best if I sit down and rest for 30 minutes after eating, it reduces abdominal discomfort and potential for dumping.

I will be praying Jim continues to improve and he soon has his heart issues behind him.

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
3/14/2011 CT Scan NED

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

BMGky said:

Cannot vomit. Remarkable retching
My husband cannot vomit and there are times he so wishes he could. His retching can clear a room. Dumping syndrome causes him great stomach pain. HOWEVER, he has come so far and is getting around great. He could not tolerate Carnation Instant Breakfast. We go from one food to another. For awhile cereal, but then developed stomach problems. Then, oatmeal. Same thing. Now eats a very toasted thin bagel, one egg and sausage for breakfast. He snacks on Nature Valley Sweet and Salty Peanut Bars. Loves steak. Initially, he couldn't walk from one end of the house to the other. Now, gets around excellently, although not as fast nor as far. What bugs me is when he is a little hungry. He tells me to go ahead and order and he will eat some of mine. I don't mind the sharing but he only eats a tad of the food, and I continue to munch away and the scales are showing it. Of course it is his fault. I'm not going to take the blame...... He no longer has coffee with his breakfast. Drinks a beer or two daily. Some favorite foods such as meatloaf, he no longer desires. We are very thankful, but it is still a learning situation. I buy food. I give away food. He is now laughing and talking like he once did. Everyday is a little better. Hang in there. If you find a solution to the inability to vomit let us know. By the way, he had his surgery 11 months ago. Mary

can not vomit
Dear Friend, I also lost the ability to vomit after blotched Nissan fundoplication, and near total gastrectomy, since than I have gastropareses, oesp.achalasie etc etc. I suffer immensely nad I wish I could vomit, please reply so I can ask for an advice, thank you lenka

paul61 said:

Some suggestions that worked for me
Linda,

It is good to hear that Jim is making progress. I am sure to both of you the progress seems slow but those of us who don’t see you everyday are happy to hear no more discussion of pneumonia or visits to the emergency room.

Getting used to our new plumbing is a challenge to be sure. I thought I would pass along some things that worked for me. First, you probably have these publications but just in case some documents from UPMC on post esphagectomy eating.
________________________________________________________________________
Diet after Esophagectomy

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf
________________________________________________________________________
Dumping syndrome diet

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf
________________________________________________________________________

These diets will encourage foods that are high in protein and low in simple carbohydrates. They suggest drinking minimal amounts of liquid with meals and then significant amounts of water or other liquids that are low in sugar an hour after meals.

I eat approximately six to eight times a day. I eat according to the clock because I am very seldom hungry.

You will find other members of the group also use high calorie supplements like Boost or Carnation Instant Breakfast to provide extra calories. A warning about high calorie supplements, many members have found that they need to drink them a couple of ounces at a time rather than all at once to avoid dumping.

An example daily menu for me would include:

Breakfast----------------Half a bagel with cream cheese and 2 eggs scrambled
Mid Morning snack--------Package of peanut butter crackers (six crackers)
Lunch--------------------Half a Ham and Cheese sandwich with potato chips
Mid Afternoon snack------Banana and Granola Bar
Dinner-------------------Salmon (4 Oz) , Au Gratin Potatoes, Carrots (small portions)
Evening Snack------------Apple pealed and cut into sections
2 Hours prior to bed-----8 Oz of Yogurt

I had to smile when I read Mary’s post because Nature Valley Sweet and Salty Peanut Bars is also my favorite snack and I have at least one or two of those a day as a treat.

I have also found that frozen yogurt makes an excellent substitute for ice cream. I find that Edy's Slow Churned Yogurt Blends are the closest to regular ice cream in taste and texture.

In general I have found that I can eat most things as long as I practice portion control and eat slowly being sure to chew my food thoroughly. I have learned to set my fork down periodically and rest to be sure I am not eating too fast or too much.

I think a combination of time and learning how to eat reduces episodes of dumping.

Things I know I can not eat include any items that are high in sugar content. I don’t seem to be lactose intolerant because I eat a lot of items with cheese and that does not seem to bother me but anything like syrup on pancakes, or cookies, or candy, or ice cream has a predictable result. I have learned to read labels on processed food. You would be surprised at how many items contain sugar that you would not suspect (like catsup for instance).

I know the learning process can be frustrating for both you and Jim. Karen and I bought and threw out a lot of food before we figured out what did and did not work for me.

I also have found that whole wheat pasta works great for me, as does brown rice, and whole grain breads. They seem to digest better with my new plumbing than highly processed foods.

I have also found that it works best if I sit down and rest for 30 minutes after eating, it reduces abdominal discomfort and potential for dumping.

I will be praying Jim continues to improve and he soon has his heart issues behind him.

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
3/14/2011 CT Scan NED

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

your diet
Paul-

Sometimes when I want to feel hopeful about my potential post surgery life, I go back and read the average daily diet you posted. It sounds splendid, and it actually might be a little more than I used to eat on a regular basis! I'm hoping for similiar results!

Jeff

jthomas233 said:

your diet
Paul-

Sometimes when I want to feel hopeful about my potential post surgery life, I go back and read the average daily diet you posted. It sounds splendid, and it actually might be a little more than I used to eat on a regular basis! I'm hoping for similiar results!

Jeff

It took me a while but I got there
Jeff,

For the first few months after surgery I was beginning to think I would never be able to eat normally again. I had my share of dumping experiences and since I had post surgery chemotherapy; that presented some eating challenges as well. For a while I had to view food like medicine, I didn’t want it but my body need fuel to maintain my weight so I ate anyway. For a while it seemed like all I did was eat and sleep.

My wife says if she ate as much as I did she would gain all kinds of weight but I don’t seem to gain much. I weighed about 150 pounds pre-surgery. After I left the hospital after surgery I weight about 135 pounds. During chemotherapy after surgery I was down as low as 118 pounds. I am about 5’ 5” tall so I looked like a walking skeleton at that point. I am now back to about 130 pounds. I think I don’t gain much more weight because I don’t eat any sugar, (sugar is a guaranteed dumping event), and I eat a lot of fruit and whole grain foods. I also walk two to four miles a day for exercise and I am a golf nut so I play golf several times a week.

I have now learned what foods to avoid. Eating in restaurants can be a challenge from time to time because you never know what is in some of the recipes even when they sound harmless. So once in a while I get an unpleasant surprise but not very often.

You will be back there 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
3/14/2011 CT Scan NED

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