Transition from PEG to "real" food

Kari,

Put a smile on your face and some food in your mouth, you  are making the transition.

I drank smoothies for 7 months until the awful feel and terrible taste no taste went mostly away.

I popped my PEG at 2 weeks post and sampled everything I could think of.

I doctored up items with olive oil and vegetable oil to add calories.

I carried around a little igloo cooler filled with protein drinks and water.

I had dinner with my parents every Sunday (1 bite of chicken, 3 or 4 peas, 1 bite of mashed potatoes), not much, but trying.

I wasn’t depressed, I held out hope and was happy to have survived.  I saw H&N members fly past me in eating, but I caught up and now have very good time with taste and eating.  Meals take much longer, my wife always finishes first and it takes multiple glasses of whatever to help down a meal.

Happy meals ahead.

Matt

Kari,

I provided a detailed analysis to my nutritionist of my calorie intake for 1 week before they would let me pop my PEG. I consumed 2.5 to 3.5 K a day. 3 a day.

I made mostly milk & protein mix vanilla or chocolate smoothies with bananas, berries,  nuts & veg oil, nothing fancy.

I was always taking bites of things, I wanted to know when the taste buds turned back on.

As I mentioned earlier, I had great luck with tomatoes, cucumbers and olive oil, corn-on-the-cob and sweet tea.  You just never know.

You will get there.

Matt

My last chemo was June 7-11th for 96 hours, left my mouth an awful mess, Mucositis.  I lost 30# during treatment but oncologist let me have peg out end of July, I started to worry it was too soon because I got a real sore throat on L side where I had most intense radiation in February and March.  Been surviving on Boost and trying to taste any and everything, shared a chicken fried steak with a friend last night, not enough gravy so not so good. I can now enjoy salads with a lot of salad dressings,  fried eggs over easy, yesterday for lunch I had Asian rice with stir fried vegetables and drenched them in sweet and sour sauce, so I've been lucky if the food is moist enough.  But I have been craving my fav soft grilled shrimp taco with Baja sauce since this whole thing started back in February, actually bought one my last day of treatment and cried because I couldn't eat it, today however, I nearly inhaled that sucka!!! noticed I didn't need as many sips of water with it too.   I can say, it gets better!!!  I call them baby steps, and measure my progress really a day at a time and today?  Stellar!!!!! Epic!!!  Bonus!!! though I do still drink 3-4 Boost plus a day just to make sure I'm getting consistent nutrition. Hang in there and be curious, take lil bites of something if you crave it and keep that water bottle nearby.

Honestly after reading a lot of posts about HnN recovery, I was very worried about being able to resume eating in the normal manner. I recieived 66 and 56 gray to the surgery bed and surrouding area. Of course, saliva, mucous, etc was affected. However, I decided two things early on. First I did not want a tube. Second, I would move to an all liquid diet right away. I accomplished both of these. It cant be stressed enough, treatments and side affects are different for each patient. However, over the last week, I did try a couple of yougurts (regular Yoplait, blue berry and strawberry). Yestrday in lieu of the Ensure, I ate a bowl of cold cereal which i let sit and get soggy. Yes, It tasted like card board, but I enjoyed the feeling of something solid being back on my stomach. I am now noticing, just as with the outside of my face, the inside of my mouth is now 'peeling'. Thats ok, it means another step toward hopefully, a complete recovery from the sores on my tongue and in the throat. I have read others who are clearly upset over the issues with taste. For me, that is less of a focus than the cure. Provided I can feed myself somewhat normally choosing usual foods, Im happy for the moment. Point is, taste as you go, though I recommend you steer clear of anything hot and test carefully cold items or anything that would be spicy. As mentioned elsewhere, keep your bottle of water near at all times : )

Much Love

-Paul 

period.  As soon as the mouth sores were gone I started eating, and tho it didn't have any taste, I never had another Boost.  My Dr. wouldn't remove the PEG either, until I gained weight...after 7 weeks of not using it I wore a pair of Danner steel toed work boots in for a weigh in...and voila!  I got the tube out the next week (they have never let me weigh in with shoes on since...LOL). 

I became a  "souper"....my favorite being homemade veggie soup.  I also got French bread, and I'd slather it with butter, and soak it in my soup.  I bet I ate 8 gallons of that veggie soup in the first month.  I also like homemade loaded potato soup, and Cauliflower and cheese soup.  I learned early, that blander is better...veggies have some taste, where other things like yogurt, icecream, eggs didn't.  I was into texture and putting food in my mouth, and feeling the warmth of it in my belly.  It's healthier too....

So, like Matt said....start eating, and see what you can do.  Soup is lots of liquid with soft things cooked in it.  Not hot, but warm.  I think you heal faster once you get back on solid food...and it certainly lifts the spirits.

p

Kari2007 said:

Thanks

I've been eating without the PEG for the last week with a mixture of Ensure, Boost, smoothies, and mostly soups. I think I have a ways to go before I'm actually eating enough to maintain my weight (although I'm going to think about that steel toed boot idea, phrannie!), but I feel like I'm headed in the right direction. I saw my speech therapist today and she cleared me to start trying all kind of textures, with caution (keep the water handy). And, I can actually taste somethings - for me the more spice (not heat spice, but herb spice) the better, as well as garlic. Of course, anything salty tastes pretty good, too. Tonight a friend is bringing over a cauliflower curry with naan bread. I'm looking forward to it!

Kari

onion...I could taste onion in things almost all the way through treatment, and when it's the only thing a person can taste it's wonderful ! My sister made me a macaroni salad with shrimp....it had finely diced celery and onion in it....and it was so good.  Always water to wash things down by my elbow.  Meat is actually the diciest thing to eat....to this day, meat just goes around and around my mouth till I drink some water to wash it down.

p