New and confused

kateel

My husband and I are brand new to your site. But we have been reading much of your postings. We need help. My husband had an esophagectomy 7 weeks ago. He had many setbacks and was in the hospital 35 days (stage 2 cancer, I think). He is eating some food by mouth, but is having a terrible time with swallowing liquids. He had another barium swallow today, but they said everything looks OK. He is swallowing correctly. He has times when he can't even swallow his saliva. He coughs and gags all the time. It is interfering with his sleep, his few daytime activities, like walking, and he is afraid to eat and drink. He is on Zegerid for stomach acid, as well as 14 other meds. He has a feeding tube, which he is on 10 hours overnight, but it seems he is not progressing by mouth so he can get off of the feeding tube. Any suggestions from anyone? The healing process has not been very smooth at all for him. He continues to be so weak, even though he is having physical therapy at home 2 times a week.

Thank you for any suggestions,

Kateel

Unknown

This comment has been removed by the Moderator

Alaska_Kim

Check for Stricture
Hi Kateel,

Has your husband had an endoscopy to check for a stricture where the old and "new" esophagus are joined? Your husbands situation sound very similar to mine.

My husband had his first dilation at 6 weeks after surgery April 7, (probably should have been done a week earlier, but he was stubborn thinking he could work through it). He was so constricted, the doctor could barely get his scope in to look around. Also, because of the severity of the stricture he has had 2 more since and lots of eating problems in between. Once he had his first dilation he was on smooth liquids only (everything had to be blended) and could keep everything down unless he took too big a drink, then he would get the "bubble", cough, hiccup several times and throw up; mostly clear sticky saliva. As long as he took sips, and didn't try to drink more than 8 oz. at a time, he was OK. He is also going through post op Chemo and the doctors now think most of his continued problems are related to the Chemo not from a surgery complication or the stricture.

Good luck! If you have questions, you can email me. I have had to learn how to pack a ton of calories in a 8 oz. cup trying to minimize the supplemental night feeding.

Kim

kateel

Alaska_Kim said:

Check for Stricture
Hi Kateel,

Has your husband had an endoscopy to check for a stricture where the old and "new" esophagus are joined? Your husbands situation sound very similar to mine.

My husband had his first dilation at 6 weeks after surgery April 7, (probably should have been done a week earlier, but he was stubborn thinking he could work through it). He was so constricted, the doctor could barely get his scope in to look around. Also, because of the severity of the stricture he has had 2 more since and lots of eating problems in between. Once he had his first dilation he was on smooth liquids only (everything had to be blended) and could keep everything down unless he took too big a drink, then he would get the "bubble", cough, hiccup several times and throw up; mostly clear sticky saliva. As long as he took sips, and didn't try to drink more than 8 oz. at a time, he was OK. He is also going through post op Chemo and the doctors now think most of his continued problems are related to the Chemo not from a surgery complication or the stricture.

Good luck! If you have questions, you can email me. I have had to learn how to pack a ton of calories in a 8 oz. cup trying to minimize the supplemental night feeding.

Kim

check for stricture
Thanks for the information, Kim. Our home health nurse told us today that it is a little too soon for them to do a dilation. That they will wait until he has healed better before doing this. We have an appointment with the surgeon in one week, so we will see what he says.

Yes, I would like some good tips on how to get 2000 calories and all of that protein into my husband. And forget all the liqiuds. I guess he will continue to have that old feeding tube in him for quite a while yet. This is very hard work!!!

Thanks for your input,

Kateel

kateel

unknown said:

This comment has been removed by the Moderator

posted this just recently
Thanks, Sherri. All suggestions seem to lead to a dilation for my husband.

Kateel

Alaska_Kim

kateel said:

check for stricture
Thanks for the information, Kim. Our home health nurse told us today that it is a little too soon for them to do a dilation. That they will wait until he has healed better before doing this. We have an appointment with the surgeon in one week, so we will see what he says.

Yes, I would like some good tips on how to get 2000 calories and all of that protein into my husband. And forget all the liqiuds. I guess he will continue to have that old feeding tube in him for quite a while yet. This is very hard work!!!

Thanks for your input,

Kateel

Definately press the surgeon
Definately press the surgeon for an endoscopy and a dilation. My husbands first was 6 weeks post op. His Dr. was very conservative not wanting to pull the staples and only dilated 2 mm (6 mm to 8 mm), but he could swallow any liquids at that point forward without problem. Mr. Marshall (from this site) also had a dilation at three weeks following his surgery.

As for nutrition, there others here who have had to get creative to boost calories. You can do a search on the older posts. Sherri (bailey1459) has shared many food ideas that I have been thankful for.

Add whey protein to everything! You can mix it in smoothies, soups and sprinkle it on other foods as well. My husband has been fortunate to not have digestion issues with dairy or sugar (dumping syndrome) post op so I use whole milk or ice cream in smoothies and soups. I also use carnation instant breakfast (sugar free) in the smoothies, a little yogurt, bananas, a little 1/2 & 1/2 and on occasion peanut butter. We had to stop the peanut butter; it seems that the chemo has made peanut butter less than appetizing right now so we won't try that again until he is done. My husband is not a huge fruit fan (unless it is in a drink :-)) and that has posed a challenge in creativity. To keep the volume down, I keep the liquid (milk, ice cream and/or yogurt) to 1 cup. Then I add the mixers. When I first started, I ended up with 20 oz. 1,000 calorie smoothies, down to 16 oz., but my husband just can't drink that much volume before it's "snack time". He is just too full. I have had to learn to keep the volume down. Cream of Wheat with milk and butter has a lot of calories and doesn't have to be chewed like oatmeal.

I make a lot of soups that I blend. I add butter to most everything. Ham and bean, chicken noodle, clam chowder, split pea, tomato bisque, etc., I blend everything and add cream, protein powder and butter. Soft scrambled eggs with 1/2 & 1/2, cheese and butter are good also. I cooked turkey bacon last night (super crispy) and he was able to chew and swallow 4 slices (140 calories, yea!) with minimal problems. I try to keep everything to a one cup serving. He has a protein power bar every day, a cup of chocolate milk, pudding, applesause, and juice.

Write every single thing down that he eats, volume and calories. It is very helpful to go back and reference the successes and the busts (had a few of those - protein powder in mashed potatoes did not go over well - he couldn't stand the taste or the texture). It will also save you a ton of time once you have gone through the effort of calculating more than once.

I don't add any supplements other than the protein powder as he is doing chemo. They asked us not to until finished; although I have read of a supplement that may help with his saliva issue that I may run by the Oncologist if she doesn't have a suggestion for us.

This is hard work! The feeding tube is actually easier; something I never thought I would say! There is so much trial and error, and all we can do after all that effort is to stand by and see if the food goes down well or not!

Oh my, this is a long post! I got on a roll. Hopefully, your husbands surgeon gets him scheduled for a dilation quickly! Keep us posted please.

All my best, Kim

cher76

Alaska_Kim said:

Definately press the surgeon
Definately press the surgeon for an endoscopy and a dilation. My husbands first was 6 weeks post op. His Dr. was very conservative not wanting to pull the staples and only dilated 2 mm (6 mm to 8 mm), but he could swallow any liquids at that point forward without problem. Mr. Marshall (from this site) also had a dilation at three weeks following his surgery.

As for nutrition, there others here who have had to get creative to boost calories. You can do a search on the older posts. Sherri (bailey1459) has shared many food ideas that I have been thankful for.

Add whey protein to everything! You can mix it in smoothies, soups and sprinkle it on other foods as well. My husband has been fortunate to not have digestion issues with dairy or sugar (dumping syndrome) post op so I use whole milk or ice cream in smoothies and soups. I also use carnation instant breakfast (sugar free) in the smoothies, a little yogurt, bananas, a little 1/2 & 1/2 and on occasion peanut butter. We had to stop the peanut butter; it seems that the chemo has made peanut butter less than appetizing right now so we won't try that again until he is done. My husband is not a huge fruit fan (unless it is in a drink :-)) and that has posed a challenge in creativity. To keep the volume down, I keep the liquid (milk, ice cream and/or yogurt) to 1 cup. Then I add the mixers. When I first started, I ended up with 20 oz. 1,000 calorie smoothies, down to 16 oz., but my husband just can't drink that much volume before it's "snack time". He is just too full. I have had to learn to keep the volume down. Cream of Wheat with milk and butter has a lot of calories and doesn't have to be chewed like oatmeal.

I make a lot of soups that I blend. I add butter to most everything. Ham and bean, chicken noodle, clam chowder, split pea, tomato bisque, etc., I blend everything and add cream, protein powder and butter. Soft scrambled eggs with 1/2 & 1/2, cheese and butter are good also. I cooked turkey bacon last night (super crispy) and he was able to chew and swallow 4 slices (140 calories, yea!) with minimal problems. I try to keep everything to a one cup serving. He has a protein power bar every day, a cup of chocolate milk, pudding, applesause, and juice.

Write every single thing down that he eats, volume and calories. It is very helpful to go back and reference the successes and the busts (had a few of those - protein powder in mashed potatoes did not go over well - he couldn't stand the taste or the texture). It will also save you a ton of time once you have gone through the effort of calculating more than once.

I don't add any supplements other than the protein powder as he is doing chemo. They asked us not to until finished; although I have read of a supplement that may help with his saliva issue that I may run by the Oncologist if she doesn't have a suggestion for us.

This is hard work! The feeding tube is actually easier; something I never thought I would say! There is so much trial and error, and all we can do after all that effort is to stand by and see if the food goes down well or not!

Oh my, this is a long post! I got on a roll. Hopefully, your husbands surgeon gets him scheduled for a dilation quickly! Keep us posted please.

All my best, Kim

Kim, thanks for the info
Kim, thanks for all the ideas for calorie packing. My husband is not a candidate for surgery as he is Stage IV, but he has been having troubles swallowing. When they attempted to place a feeding tube in May they stretched the stricture at the esophageal junction and that has allowed him to eat fairly well for the last two months. However now it is starting to constrict again and so we are heading back to the more liquid foods. I have one question though. I was told that heating the whey protein kills the protein. Of course I was told this by a guy in a health food store who then sold me a different whey protein that was "optimized for cooking". Wondered if it was true or if he was just trying to sell me something!

Alaska_Kim

cher76 said:

Kim, thanks for the info
Kim, thanks for all the ideas for calorie packing. My husband is not a candidate for surgery as he is Stage IV, but he has been having troubles swallowing. When they attempted to place a feeding tube in May they stretched the stricture at the esophageal junction and that has allowed him to eat fairly well for the last two months. However now it is starting to constrict again and so we are heading back to the more liquid foods. I have one question though. I was told that heating the whey protein kills the protein. Of course I was told this by a guy in a health food store who then sold me a different whey protein that was "optimized for cooking". Wondered if it was true or if he was just trying to sell me something!

Sorry I haven't gotten back
Sorry I haven't gotten back sooner! I did some research and found that the protein doesn't break down in nutritional value from cooking, rather it breaks down the shape. It can glob up (my choice of words). that did happen to me once when I added it to gravy, so I threw it in the blender (that worked ok). After that, I would mix the protein to the cold liquid then mix in and heat from there. If you are planning on doing a lot of cooking with the protein powder, the kind for cooking is probably easier to work with.

Will your husband be able to have another stretch? I hope so. I know Its been hard for my husband to go backwards from real food to liquids. His oncologist is adding a med that is supposed to help reduce the saliva issue he has been having. We are hopeful because it has been getting worse all week.

Kim