My husband's saliva glands were fried during radition, as well has many of his taste buds. Anything that is sweet now tastes bitter to him. He has to eat so much cheese sauce to get everything down, I am afraid he's going to get heart disease. He is SO limited. Does anyone know of anything besides cheese sauce and gravy he might be able to use to help things slide down his throat? He has to drink so much water at his meals, I don't know how he has any room for food in his stomach. His meals consist of sauteed vegetables, eggs and a few other things. Thanks for your ideas.
Sorry for your husband's continued issues. Maybe try a food buffet to see what he likes, it's easier, and cheaper. ChristineB has a "easy to eat" food listing, and another post for cookbooks has several cookbooks geared for eating disorders. which is down in the listing of topics. There are plenty of soups that can be made, pur�ed vegetables, pasta's, beef, chicken or seafood dishes in light sauces, basically unlmited. Even using an oil mister helps. I have a small "Misto" can that I put oil in, usually extra virgin olive oil. Pump it, and sprays. You can spray that on any food to help swallow. What are your husbands food tastes likes and dislikes, and what types he has difficulties with? Is he eating everything by mouth?
There are ways to increase saliva too. Drinking lemon water before eating, smelling lemons, chewing gum. Milk replicates saliva's consistency, so drinking just may help. The lactic acid burned my mouth. Sugar also helps produce saliva, so maybe a lemonade drink before, during meals, but sugar burned my mouth too during, soon after treatment, but eat everything now.
Last week I made a Texas style chili with ground beef, and small chuck beef (fatter cuts is easier to swallow) then a bolognese sauce for pasta, which both are easy to swallow, at least for me.
I would also suggest seeing a speech and swallow therapist at your treatment center, who can help with mouth exercises, and order a modified barium swallow test, if needed, to see what is the problem with hs swallowing ability.
I hope this helps, any questions, just ask.
The list of easy to eat foods will help. Its full of smoother textured foods which are easier to swallow than say cookies or
crackers.
Easy to Eat Foods Im also very limited with my eating. Yes it sure gets old always eating the same things. I try to switch mine up by alternating weeks where I will eat raspberry jello, homemade chocolate pudding, homemade strawberry cheese pie (no berries or crust), and home made tapioca pudding. I will eat a bowl of one of those things with lots of whipped cream. That gives me some variety. But every single day I will eat cream of wheat (which is my main meal) and a couple peach flavored blended yogurts. Since your husband has problems with tasting sweet, omit the sugar if making any of the above foods from scratch and maybe he will like it better.
As far as his salivia goes, has he tried pilocarpine or salagen? Those are a couple medications which help to produce saliva. They do take a few weeks to fully work but it may help him. Members have had varying results with those medication. I didnt like it as they made me sweat profusely (which girls dont do! LOL!). But others have found success with them. Its worth a shot. Good luck!!!
Thank you so much for your ideas! I will try to implement them as soon as I head to the grocery store next. Thanks again and my best wishes to you both. Lauri
I used to eat a lot of oatmeal and cream of wheat - during treatment cream of wheat was the only solid-ish food I could eat, and I didn't seem to get tired of it for some reason, despite the fact that I couldn't taste anything.
As far as saliva goes, I recently have started using ACT Drymouth mouthwash and so far it is the only product where I can tell a difference in my saliva (especially at night).
Thanks Emily. I appreciate your input. My hubby can eat grits with soft eggs and cheese. We'll try some oatmeal too. Best wishes to you, I see you just finished treatments last month. How are you feeling? I am guessing because you are so young, they threw the kitchen sink at you for treatment? That is pretty much what they told my husband. I hope you are doing GREAT!!
I am still waiting to find out whether the severe sore throat and lump in my throat is cancer, but I have had gastroparesis for almost 5 years. One thing my doctor suggested when it got hard to eat solids due to the gastroparesis is to get those baby food pouches. Gerber, Earths Best, Ella's Kitchen, Plum Organics and Happy Baby all make these. These baby food pouches are pureed so well that they slide down your throat very easily. They make them in fruits and vegatables varieties.
I have eaten these at least 2 times a day and have enteral formula through my feeding tube the rest of the day. They have helped me a lot.
Jessie
I didn't know you had a feeding tube, Jessie.
Ramen noodles worked very well for me. I lived on them for the better part of a month. I would only use 1/2 of the seasoning packet to cut down on the sodium levels. Cook the noodles to the degree necessary and they slide right down. If I felt ok that day I would crack an egg into the soup to get some additional protein.
Hang in there!
Hi defeatingin2010, I know the problem of bloating with too much water well. I have similar problems with lack of saliva and swallowing difficulty. The two main stays of my diet are first porridge, cooked with a whole range of additons such as a banana, honey, ground flaxseed, ground hempseed, some protein powder and creme fraiche. Second is organic probiotic natural yogurt which I have developed a real taste for and I use it to help other foods slide down more easily. I have always had a sweet tooth but I now find confectionary chocolate and other sweet things sting my mouth, however, I can enjoy dark chocolate - +70% cocoa (it was always too bitter in the past - strange that I like it now!) but I can only eat it with a hot milky drink either a latte or hot chocolate. Real chocolate is considered to have a lot of healthy properties and so is especially good for us diet challenged folk who struggle with getting enough calories and proteins! Another thing you could try is adding Psyllium husk fibre to sauces. You only need a tiny amount (0.25 teaspoon) to get a gelifying effect. Too much is horrible, but a small amount can just make make sauces that bit slippier. It is also good for constipation! I also juice fruit and veg twice a day to make sure I get all the vitimins and other goodies that I miss from not being able to eat salads and cooked veg. The taste changes are very strange and effect everyone so differently. I always liked real ales and craft beers, but I now find that I really savour the hoppy beers, so maybe I have changed to enjoy the bitter favours more than sweet! Hope some of this might be a help. Sally
Soda noodles are made of buckwheat, and are WAY healthier than ramen. They should slide down easily with a butter or olive oil sauce, or a stir fry. It is possible that soy sauce and umami-based flavors will taste ok. You might want to try a Chinese buffet. Egg foo yung should be slide down. Go for dishes with soft noodles - rice is stickier.
Best wishes and don't give up!
[quote=Maria]Soda noodles are made of buckwheat, and are WAY healthier than ramen. They should slide down easily with a butter or olive oil sauce, or a stir fry. It is possible that soy sauce and umami-based flavors will taste ok. You might want to try a Chinese buffet. Egg foo yung should be slide down. Go for dishes with soft noodles - rice is stickier.
Best wishes and don't give up! [/quote]
Are you sure you don't mean soba noodles Maria?
I was on a tear for decades to learn how to make as many Japanese things as possible...from scratch. Udon noodles with buckwheat flour was about as quick as a tamale day on December. You even have to boil them 6 times. I seem to do better with the thicker noodles. Now..off to eat some yakisoba. Hungry from talking about it.
I am now embarking on another journey and learning how to eat and swallow again after 6 years of an "Old" new normal (Now another "Very" new normal). Christine has some good options here and I love Maria's Egg Foo Yung comment and been doing that about once a week right now. Been balancing with instant mashed potatoes and Thank God I've always loved eggs. There's several cookbooks out there for folks like us. Going to have to try the different noodles mentioned above as Ramen packs a lot of sodium if you don't use like a vegetable broth. Good discussion! Best wishes to all.
"There's several cookbooks out there for folks like us."
Could someone elaborate on this? I'm 3 months today post-TX and down almost 100 pounds. I don't have much more I can spare, lol. Although being skinny is fun I do need to address my diet and start increasing my caloric intake. You all know the song and dance though: it burns, it's too thick, I can't chew, it tastes like a taxicab floorboard, yada yada yada...
Drink a few ensures to help get enough calories in and to balance your diet. How about tapioca pudding with lots of whipped cream? Puddings are fattening.
It took me several years after rads before I was able to eat enough to gain any weight. I used to make chocolate peanut butter milkshakes with full fat everything. Those giant milkshakes were around 2000 calories each and some days I would drink 3 of them along with eating and I never gained an ounce. Prior to rads, if I even looked at food I gained weight. Your metabolism has dramatically changed and you really need a good 3000 calories daily to try to rebuild your body. Adding high protein will help you to heel.
The easy to eat foods list mentioned above has alot of great food ideas.
Let me know if you want the chocolate peanut butter milkshake recipe.
I was down to 130 for a while after dropping from 245 in a matter of weeks, three years ago. I went up to 170, which took over a year to gain, but then dropped to 140 from another treatment in 2011, but built up to 180, and then lost 10 pounds to 170 from another treatment, which ended in 11/12 I built myself up to 190 right now!
Try adding vegatble oil, vegetable oil, etc. to any drinks, foods, which add extra calories, taste, and fat increases appetite too. To eat foods more easily, you can spray them with an pump oil mister. I have brand called "Misto" that is a spray pump, which you can spray on food.
Good luck.
Someone mentioned burritos ...
One of the things my husband missed most was Mexican - and most of the salsa in the jars are too spicy from the hot peppers.
You can make excellent home made versions without the hot pepper.
Mango or peach salsa:
1 fully ripe mango, chopped
1/4 of a sweet Vidalia onion, chopped and then microwaved for 1-2 minutes (makes it softer and milder
1 Roast red bell pepper, peeled and chopped (or buy it in a jar)
1 handful FRESH cilantro, chopped
1/2 to 2 limes, juiced (be careful - start with a little lime and see how much you can tolerate)
Mango or peach juice, if you need more liquid
This can be stick-blended if you have trouble with the lumps. It can go on anything from rare salmon (goes down easy) to yoghurt tto beans and rice to soft tacos kielbasa (yes - goes down easy) with sour cream. If your mouth is still very sore, go easy on the lime, and add some olive oil which will tempter the acid in the fruit.
A tomato-based taco sauce can be made as follows:
1 6 oz can plain tomato paste
Ground cumin (start with 1 tsp)
Ground coriander (start with 1/2 tsp)
Oregano (start with 1 tsp)
Garlic powder (start with 1/4 tsp)
1 1/2 cans water
Add additional water and herbs to taste. Plain tomato paste is the least acid of the tomato products I have tried. You can add olive oil to this, too, to tempter it.
Hope some of this helps.
Maria
Kelly,
If you search Amazon you will find some cookbooks. Search easy to eat or easy to swallow and some should come up. My wife bought a couple when I was struggling to "Lose the tube" after treatment and couldn't get enough nourishment without the tube. One in particular that I still have is called "Easy to swallow, easy to chew." You can find some that work and then vary the recipes with things you know or learn you can handle. You can probably search different ways and find plenty of options and then review samples or check at a bookstore and be sure you're getting good choices before buying. Christine's correct with her list and of course we are all different. After treatment I couldn't handle milk, it burnt, but others were posting how soothing it was. You have to experiment. I hope this helps and Best of luck!
Be careful how much fat and what kind you eat, and where your nutrition comes from. Being thin does not equal being healthy. You could weigh a normal weight but have high blood pressure and cholesterol. Eating a well balanced, health diet is better for you than trying to pack on too many pounds with empty and nutritionally bad calories. ;o)
With the compromised carotid arteries LDL cholesterol should be kept under 100 for a decrease in stroke risk. Ironically, however, cutting back too much on fats can contribute to nerve issues and/or neuropathies. I understand why doctors don't like to track oral cancer survivors because of the dichotomies like this.
I should have added a bit more explanation about myself when I asked concerning the recipes.
Nearly ten years ago I had a gastric bypass surgery to deal with my 400 pound weight issue. That's made the nutritional side of cancer recovery to be incredibly tough to manage. I get a syndrome called "dumping" if I eat a high sugar or high fat meal, basically making you vomit and feel like you have food poisoning for 30-45 minutes.
Because of this I'm even more limited in what I can tolerate and it's made this battle really tough. I'm down a lot of weight now and not slowing, no matter how hard I try. I'm getting a bit desperate to be honest. It's aggravating because I bought a kayak to help my physical recovery but I'm always too exhausted to use it. I took a beating on my shoulder nerve with the neck surgery and I need badly to get it strengthened (hence the kayak). I can't afford to not have full use of my right arm since I am a mailman and spend all day reaching for boxes out of the truck.
I think I'll call my doc and get a nutritionist meeting.
Hi Kelly. Life is cruel. Having had the courage to go through the gastric bypass it is very unfair you now have to deal with this additonal eating burden. I hope you are seeing your nutriionist and also following Christine's earlier post. Finding high calorie/protein drinks that you can tolerate are really important. I was lucky in not losing too much weight, but my saving in getting off the Fortisp bottles (similar to Ensure) was in buying a juicer and a magic bullet blender. Experiment and keep using something like Ensure until you are more stable. Keep us posted on how things are going.
Hi there -:) welcome. And it's got to be scary! The tables have turned and instead of being overweight your having trouble keeping weight on. Life can be weird sometimes. Sugar for anyone is not a good thing either is high fat, but then the problem remains what to do to gain weight - for me the response is to eat healthfully - whatever is an average sized meal - and have it as frequently as you can. Then try supplementing it with shakes that you make. There are plenty of protein shake mixes out there that use alternative sugars - which affect your glycemic index minimally (stevia is usually the base - try to avoid the ones with fake sugars - aspartame and white sugars) you can add a bit of fruit, then a milk of some sort (almond or whatever) that is low fat and maybe a small scoop of peanut butter, unsweetened cocoa etc...have these in between meals. Try alternative pastas - maybe kamut, quinoa, not white flour pastas - they may be more tolerable. I gather your problem is not eating but the amount and type of foods. So eat all the time but eat stuff that will not set off the dumping. Ultimately frequent healthful meals - if our not a Veg head (I am!), then maybe lean chicken, fish, in a wrap and a smoothie chaser - vegetable pasta (preferably non white flour pasta), with a bit of chicken - and a smoothie chaser. Carry it with you if you can and drink constantly that way your not overloading your system with a big meal but rather feeding yourself calories (healthful) all the time.
hopefully this helps!
[quote]There are plenty of protein shake mixes out there that use alternative sugars - which affect your glycemic index minimally (stevia is usually the base - try to avoid the ones with fake sugars - aspartame and white sugars) you can add a bit of fruit,[/quote]
Cheryld,
I am trying to get my own protein shake powder formulated and having some confusion on the carbohydrate side of things. In terms of adding some sweetness do you have an ingredient list sorted by sweetness and type of carbo? For example, HFCS (High fructose corn syrup) has the greatest sweetness per volume but also is the most simple carb, mono-saccharide. Regular granulated sugar offers good sweetness but is classified as a di-saccharide. Maltodextrin has less sweetness and is a oligo-saccharide.
There is an index called the DE (Dextrose Equivalent) that is the "sweetness" factor for various carbohydrates.
I saw your mention of stevia and I just came across this yesterday as a sugar substitute and wonder how well this works for you? It seems it might impart its own flavor which some find off putting.
Of other natural sweetness ingredients to mix with protein powder to lift the sweetness factor, what else do you suggest?
don
Don,
One of the lowest glycemic indexes is agave nectar, 30. It also has one of the lowest glycemic loads, 9.6. Low GI = 50, low GL = 10.
http://www.mendosa.com/gilists.htm is a link with a bunch of foods listed.
Ed
Hi there - agave is second to stevia in terms of glycemic impact (second lowest) has a honey like texture and similar taste. There is a glycemic index list available that tells you in order which is the best and worst. I have yet to find a complete list or carbohydrate values for them though,,, I'll post if I do. Not everyone likes stevia it's an acquired taste but mixed into a fruit smoothie its not that bad. It can be very sweet so only small amounts are needed.
Cheryl,
Any idea on the glycemic load of stevia? Can't find it anywhere. I don't like the taste but I know stevia is also zero calory and it is believed that stevia also helps regulate blood sugar. I used to use brown rice syrup too but it is a bit funky tasting over time.
If you know the net carbs of stevia the formula for glycemic load is GI/100 x net carbs.
Thanks all.
I'll head to store for the agave nectar, that seems to be something fairly common in the canned juice section.
This is what I will try first using it:
1 OZ Whey protein concentrate (80% protein) 23g protein, 100 cal
1 OZ Maltodextrin (100%) 28g carbo, 112 cal
3 OZ Agave nectar (6tbs) 90g sugar, 360 cal.
Total calories about 570
This might be a bit dense so may need to cut with milk or water. Milk of course adds calories and protein and carbs, all good things so likely a better choice.
I think I would eat dog food just to ger something into my stomache orally. It's been well over 1 1/2 years of liquid. But I am alive so I can complain. LOL
Thank you so much Sally! sounds like your issues are very similiar to my husband's. He said sweet is now bitter. Cooked tomato stings his mouth. I like that idea you said about making things slippery. I will definately try it. thank you. and best wishes to you!!
You can spray food, even after cooking, with an olive oil mister or with any other food oil desired, which helps in chewing, swallowing. Mine is a pump bottle called Misto, available in many stores. Fat adds taste, extra calories, increases appetite too.