Hi John,

When I lost the ability to take in food orally, I had to rely more on my Gtube and Jevity 1.5 Cal cans. I thought the Jevity would surely be the answer to maintaining weight, but I had serious issues with osmotic diarrhea when I first attempted to put a can in. I did not want to be stuck on a pump at night or in the day, so I ended up taking about three days and training my body to accept the gravity feeds and increase tolerance.

For those of you who have had this issue and would like to attempt to remain pump-free...let me explain. The first day of trying Jevity by gravity, I put in 50ml of Jevity and 100 ml of H20 every 2hours starting at 7am until 9am. Then at 11am, 1pm, and 3pm, I added 75 ml Jevity and 150 ml H20. At 5pm, 8pm, and 10pm, I then put in 100 ml Jevity and 200 ml H20. If during any of this I got diarrhea again, I went to the previous dose increment and continued that for a few more hours until I felt ready to try an increase. For Day 2, I did 100 ml Jevity and 200ml H20 at 7am and 10am. If all went well, then I increased to 150 ml Jevity and 250 ml H20 every three hours for the rest of the day. On Day 3, I began with 150 ml Jevity and 250 to 300 ml of H20 at 7am and 10am. Then three hours later I attempted 200 ml of Jevity and 400ml H20. When it was clear I tolerated that, I graduated to putting all 237 ml of Jevity in at a time with 2x the amount of water. I'm sure I could have gotten away with less water, but I was very afraid to encounter osmotic diarrhea again so almost always used the 1:2 ratio of Jevity:H20 from here on out. By day four, I was able to get my 5 cans of Jevity in with 5 feedings. Each feeding took about 20 to 30 minutes (usually water flew in and Jevity took it's time with gravity).

I'm not sure if people have tried that but it really did work wonders for me and it felt good to be as mobile as possible (though honestly, I was on the couch most of the day anyways).

I am now 6 weeks out of treatment and am trying to eat as much orally as possible. I'm not longer dependent on my feeding tube, however, my diet is limited mostly to waffles, french toast, syrup, eggs, and pasta alfredo (mild soft things that don't burn my tongue or that I can coat in syrup to smooth the texture). I realize that this is not the most well rounded of diets so I'm gradually trying to find foods that incorporate vegetables too. Fruit is off the table for now because too acidic and burns like hell. I've found that quiche made with spinach works alright. And I have just started adding really dead broccoli to my pasta alfredo. I was 140 pounds before surgery, radiation, chemo and Erbitux. I'm now 120 but staying constant here and trying to gain weight (ideally, not just from waffles and syrup).

I used to be an avid runner but cannot run with Gtube in place, so I've started biking to regain strength (i'm hoping to add weight with muscle mass too ). I've been biking now 30min to 1hr a day on my trainer to regain energy, strength, and appetite. I find that I'm more willing to put up with the pain of eating (with magic mouthwash) when I have a good appetite as opposed to eating just to get by. And biking seems to do this for me. Now if only I could talk! (tongue hurts too much to talk...)

Ok, I've written a novella. I hope this helps!

Kristen