Continuing Saga of the feeding tube

linda1120

Hi Friends,

I decided to back off on "guiding" Jim regarding getting off the feeding tube and eating. I suggested he call his surgeon's nurse who is monitoring his recovery. She advised him to immediately remove two of the six cans of formula and substitute with food. We planned a trip to visit my mother in Colorado last week and he decided to wait until we returned home. While there he started to eat small meals and snacks and is doing better. He still has episodes of retching (had one today) and cannot vomit. Does anyone know if the surgery removes the ability to vomit? Jim is having problems with the "dumping" as well. I think he is drinking his Carnation Instant Breakfast too fast and also eating too much at a sitting. He is dealing with extreme fatigue due to his aortic stenosis (heart valve calcifying) so exercising is almost impossible. He is out of breath walking from one side of the room to the other. I feel so badly for him as he is a very proud "man's man" and has always been strong and the one to do everything. When he is strong enough he will have to have open heart surgery to replace the valve. I understand you feel like a million bucks once you recover from that! I know his stenosis is severe so don't want to push him to do too much. It is a real catch-22.

I am going to go back into the posts and find some eating suggestions, as I know Paul had some great ones. Jim is still having issues with things just not tasting good. I guess this isn't uncommon. I keep telling him everyone says it takes six months to a year to find your "normal."
Unfortunately for every pound he has lost I have found it and more! Oh wonderful stress! It is back to the gym time for me. I now need to start taking care of myself as he is capable of taking care of his personal needs now. Cancer is tough on the whole family. I am so grateful he was able to have the surgery and survive it, and then the icing on the cake is he is cancer free!

Thanks for listening my EC family,

Linda

sal314

Sorry I Can't
offer any advice on the eating situation. But I will and still do continue to pray for you both. No doubt, EC cancer and the surgery is a huge stress on everyone. I pray that he will continue to gain strength and eat more as time goes by.

Take it one day at a time.

Blessings,
Sally

Tina Blondek

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

birdiequeen

Caregiver Weight gain
Linda, I have experienced the caregiver weight gain issue too. The gym has helped me relieve stress and keep the lbs off. Right after surgery I purchased every soft food I could think of and cooked so much in hopes he would eat. We are almost four months post surgery and he likes crunchy food the best now. I think he would rather not look at another bowl of soup, Jello or mash potatoes. My husband did the Carnation mix too but I added protein and frozen fruit to make a smoothie out of it. That was one of the first things that tasted good to him post surgery. Now he is has to push away from the table as things are tasting good but he doesn’t want the side effects of over eating. Just remember two steps forward and sometimes one step back is still progress.

BMGky

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

sandy1943

Hi, It is common to not be
Hi, It is common to not be able to vomit. My Doctor advised me this would happen. Three years since surgery and I can eat anything now. To begin with I lost the desire for some of my favorite foods. I started loving spicier foods than I ate before. Now I like it all. I can't eat as much at a time, but it's fun to eat more often. I have to be careful not to overeat or I experience pain.
I had a lot of trouble with dumping for over two years. Now it is a lot better controled. I did find out that some of the reflux medicines caused me to have it, so I quit taking it. I'm a lot better now and i don't have reflux as long as I sleep elevated.
I started going to the gym when I was well enough after surgery. I did very light strength building and it helped me to regain strength and helped with depression.
Good luck in the healing. All sounds normal. It just takes time.
Sandra

paul61

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!

linda1120

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!

Thank you
Thank you for all of the helpful suggestions. We both appreciate it so much. That it is normal helps coping with it. Thank you for your continued prayers and concern!

Linda

lenka townley

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

lenka townley

sandy1943 said:

Hi, It is common to not be
Hi, It is common to not be able to vomit. My Doctor advised me this would happen. Three years since surgery and I can eat anything now. To begin with I lost the desire for some of my favorite foods. I started loving spicier foods than I ate before. Now I like it all. I can't eat as much at a time, but it's fun to eat more often. I have to be careful not to overeat or I experience pain.
I had a lot of trouble with dumping for over two years. Now it is a lot better controled. I did find out that some of the reflux medicines caused me to have it, so I quit taking it. I'm a lot better now and i don't have reflux as long as I sleep elevated.
I started going to the gym when I was well enough after surgery. I did very light strength building and it helped me to regain strength and helped with depression.
Good luck in the healing. All sounds normal. It just takes time.
Sandra

can not vomit
Dear Sandy, I also can can not vomit and suffer terribly, I have more posts on www.inspire.com
user name lenkatownley, if you read some of them you will see, my life is hell, I suffer immensely as the result of not being able to vomit after blotched stomach surgeries, thank you lenka

jthomas233

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

BMGky

lenka townley said:

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

Who would think one would
Who would think one would ever miss not being able to vomit. My husband gets wretching that just makes him miserable. If he is careful in what he eats, the stomach distress goes away. Your situation sounds much more difficult. My husband's problem is a common side effect of having an Ivor Lewis esophagectomy. I don't believe every IL has this. I don't know. From you post it seems that you have more issues than the inability to vomit. This inability in my husband can cause temporary strong discomfort, but it doesn't rate as difficult as you expressed--suffering immensely. Also, it seems your problem arose from a different condition than esophageal cancer. Yet, many people on this board do experience digestive difficulty at one time or another. You may wish to start a new post asking this question and giving more information as to your physical condition, your initial diagnosis, and what you have done or are doing to deal with it. Someone might have some information that can benefit you. Sorry to hear of your strong discomfort. Hope you can get some answers and advice.

paul61

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!

MRapp226

Linda, I am happy to hear
Linda, I am happy to hear that jim is cancer free. I hope he can start eating more soon.

Take care,
melissa

linda1120

MRapp226 said:

Linda, I am happy to hear
Linda, I am happy to hear that jim is cancer free. I hope he can start eating more soon.

Take care,
melissa

Eating
Thank you Melissa! Jim is able to eat most anything now and the wretching is almost gone. Every once in a while he has problems if he eats too fast or too much. It just takes time. We are so pleased he is cancer free! God is good.

Linda