Digestive Support

I don't know if this will work with gasterectomy patients but I keep hearing about prebiotics.

Check out information at http://www.gicare.com/search.aspx?usterms=prebiotics&ustype=0

I was told by RD-L  that we should not try them as they could interfere with chemo or radition... I think I will ask more about it.  My reason for wanting for further info is if you are not eating enough fiber/fruits/vegs.. then couldn't things get clogged up.  I am thinking a little help might be a good thing.  Of course Hi Health and other stores really like to push their products.  It's something I need to ask the professionals.

At Jackson Siegelbaum... they say  Prebiotics naturally occur in  wild yams, wheat, onions, garlic, bananas, leeks, artichokes, jicama and others.  http://gicare.com/Our-Practice/prebiotic.aspx

Prebiotin is a commercial prebiotic product with several choices of products. For more info:  http://www.prebiotin.com/

New J tube and RD "L"

Well, another $250, and nearly 2 hours in Registration, we get to the Radiology Intervention.  The food port gets replaced, and we connect with  RD "L".  Wonderful Lady with lots of resources.  As a Info Junkie,  I liked her handouts!  Some  I found and posted already.  Here are links to things she handed us!

Check out the Portion Plate   http://theportionplate.com/enlargedplate.html    good graphic for how much to eat!


Eight  PDF Resources from the Ohio State University Medical Center  http://cancer.osu.edu/Pages/index.aspx  
Thank you Thank you!!!

1. Recipes for People with Head and Neck Cancer (easy to swallow/digest)  http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/headneckcancer.pdf 
2. OSU  James Center recipes  http://cancer.osu.edu/search/Pages/index.aspx?s=JamesCCC&k=recipes
3. Blenderized Diet for Jaw Wiring  http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/blender.pdf
4. High Protein Drink List  http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/gastric/high-protein-drinks.pdf
5. Dysphagia Diet Level I (Pureed)  ((For those with swallowing problems)) http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/dys-1.pdf
6. Dysphagia Diet Level II (Mechanically Altered)  ((For those with swallowing problems)) http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/dys-2.pdf 
7. Dysphagia Diet Level III (Advanced)  ((For those with swallowing problems))  http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/dys-3.pdf 
8. Post Gasterectomy Diet  http://cancer.osu.edu/patiented/materials/pdfdocs/nut-diet/nut-other/post-gas.pdf    ((Even though broccoli is on the not recommended list (page 4),  they put it on the sample lunch menu (page 5)  Yes I read their recommendation carefully!))

Week 3 of chemo

Well, guess what?  They couldn't find an open appointment until Tuesday!  Ha!  It's getting very funny.  But good thing,  we got a call from a cancer registered dietitian Ms L.  We finally have some help! 

Week 2 of Chemo

Well, the triage nurse never called.  The j tube clogged.  We went into the ER and spent $250.  It took 2.5 hours for them to try to use coke to unclog (like we already tried it for 4 hours).  Three ER nurses used lots of strength to push coke to unclog.  Then we were told to come back on Monday since the Radiation Intervention people are off on the weekend.  No point getting upset or worrying, we did what we could..

Chemo- 1st Round for Three Weeks

Just when we are starting to figure how how much to eat, how much to drink,  chemo starts.  Talk about a monkey wrench.  One of the chemo drugs requires 12-14 glasses of water a day.  Guess what, our first weekend was the pitts... we went to the ER twice,  and ended up paying $500 for 4 litres of saline!  Don't ya think that is silly?  My parents say we need home heath care and we're waiting for the triage nurse to call us back  since Dr V's right hand Ms O said we had to talk to the t-nurse.  Waiting. Waiting.  That has to be one of the hardest parts... all the waiting rooms,  waiting for the doc in the exam rooms, chemo, and  phone calls. We really need to get stable because  radiation is forthcoming in 10 days and that's gonna be a new challenge.  Olympics here we go and "LIVESTRONG".  I watched the Tour de France,  and remember Lance with my yellow band.

The second week is passable... too much  "heartburn"  though  Dr V said he shouldn't have nausea.... Ha!  Gotta have a good sense of humor!

Support groups

http://www.medhelp.org/    I just signed up... maybe I'll find others that have same issues and can get some support.  Beth, our Cigna  case manager has been great.   I'm finding that every doctor/nurse has their own speciality and everyone has a different opinion.  I guess we just have to figure out what works for  the collective "us" as I am the primary caregiver/sounding board.  I ddn't realize this is a full time job and Walgreens is two miles away and that seems too far!

We are no longer with Cigna, the company switched to United Health.  We have not found that much support.  I hope we will find people to chat with online!

"Have Fun Eating, eat what you want" says Dr.B.

Everyone keeps telling us something different.  Dr. B says eat what you want,  everyone is different and can tolerate different things.  I guess 8 oz. at a time is a good  starting point.  Eat slowly, and its better to alternate eating and drinking.  If you want alfredo, then eat it!

30 Degree Beds Mandatory

We researched beds, and found adjustable beds for a good price of $2,700!!!  Then we found a bed at Ikea that you can manually set a head at an incline... for about 100, then you need the frame and mattress.  We got the 2" pillow top mattress and still needed more padding.  It turns out, we didn't buy the mattress... buy it also, LOL!!!

  JC Penney's had  1.5 inch foam toppers for 100, Walmart had a latex foam 1.5 inch topper for $25.  They had other incline bed options.  I wish they had long twin beds.

We found $39 bed in a bag at Target,  and 325 count sheets for an additional $19.99.  Mattress covers, mattress protectors also from Target for about $15-$10.  Luke AFB exchange was cheap, mattress pads for $6, and blankets for $10.  I wish I knew we needed a new bed.  The foam wedge wasn't working well.

After sleeping on the Ikea bed for two years, I am thinking about getting an adjustable icomfort bed.  It can raise feet and head,  and even has vibrate options.  This definately would be fun!

Gotta have my gadgets

I bought a countdown timer to  use after eating or drinking so we will know  when its time to eat again.

I bought a neat little scale for about $5 to measure out 2 oz of meat.  It was more than I thought.  So use a scale if you want to be accurate.

Daily Nutritional Needs Calculator

http://www.nutritiondata.com/tools/calories-burned


of course this is for healthy people, not those recovering from surgery....  I don't have the expertise to figure that one out!

Daily Nutritional Requirements from the National Academy of Sciences 1989

Men Women

Calories 2400 1850

Total Fat 80 g or less 62 g or less

Saturated Fat 27 g or less 20 g or less

Cholesterol 300 mg or less 300 mg or less

Sodium 2400 mg 2400 mg

Total Carbohydrate 360 g 275 g

Dietary Fiber 20 to 30 g 20 to 30 g

Protein 63 g 50 g

Calcium 1000 mg 1000 mg

Iron 10 mg 15 mg

Source: National Academy of Sciences, National Research Council, Recommended Dietary Allowances (10th Edition, 1989).


http://www.dvo.com/recipe_pages/pillsbury/Your_Daily_Nutritional_Requirements.html

When to go to bed?

Don't go to bed for an hour after eating.

Your bed must be at least 30 degrees,  us a foam wedge or get an Adustable Bed... I would think the pre-surgery instructions would recommend this ahead of time.  The wedges I bought at Bed Bath and Beyond are about 16 degrees each.  Not good enough and two don't work well.  I went to  H and L  Medical supply in Scottsdale   they had a 30 degree wedge http://www.hnlmedical.com/  for about $40.  I would take a protractor with me to measure them, or bring your basic trig and calculator because the three wedge sellers had no idea what the angle of the pillows that they were selling.  Brush up on your math here...http://wright.nasa.gov/airplane/trig.html  !!

Its all about portions

I've read its better to have 4oz drinks of water every 15 minutes.  Food portions should be limited also... maybe the 1/2 cup rule should be a good starting point for food also?  If you can tolerate more then that's okay.   Low fat and low sugar are also important so there isn't "DUMPING"!!!

I just found shelf stable Gerber Toddler meals at Fresh and Easy. There is a main dish and a vegetable! Watch the fats though.  Don't have a report on the taste though.

On Amazon I ordered a surgical steel  baby food grinder with a bag for about $16.  That solves the need to have small  strained food.  http://www.amazon.com/KidCo-BabySteps-Deluxe-Food-Travel/dp/B0030AHK5A/ref=pd_ybh_1?pf_rd_p=280800601&pf_rd_s=center-2&pf_rd_t=1501&pf_rd_i=ybh&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1AJG1SNJ1SXMGPBWDAS2
If you cook wholesome family food, you can grind  it up for your Gastrectomee...  I've just coined a new word I think.

The Gastrectomy menu does not include toast or jello... unlike those who have stomach reduction surgery.

If you are a nutritionist... please let me know if I"m not on the right track!

Calories and nutrient Calculator

At the USDA, they have an easy to use calculator to help you keep track of calories, vitamins, minerals and more at  http://199.133.10.140/codesearchwebapp/codesearch.aspx.  I made an excel spreadsheet and listed breakfast, am snack, lunch, pm snack, dinner, pm2 snack.  I have 3 rows for each meal (can easily add more).

Its fun for those who really want to be detailed!

Low Fat Low Sugar Diets

Make a smoothie:  1 cup Skim milk ( or Almond Silk, Vanilla soy Silk or Lactose Free Milk, 2 T protein powder, and vanilla flavoring.

Other variations:  flavoring drops of your choice,  add  sugar free lowfat yogurt, canned peaches in juice, apple sauce. lowfat sugar free pudding.

Suggestions to reduce gas:  4oz at a time, not hot nor cold!  Drink liquids at a different time.

Gastro Diet list

Several Gastroenterology Diets   can be found here.