Do you have anyone to help you at all? It sounds like you are on your own.

Yes, it's hard to get nutrition and hydration through the tube. Many of us have and many will for the rest of their lives. It is just something you work into your routine. It sounds overwhelming because everything coming your way is so intense. It will get better and nutrition/hydration is actually one of the few things you can do that will make things much more comfortable.

In the past 11 years and 2 months I have gone through periods of no swallow twice. It isn't much fun and the second time I didn't have a PEG even. It took almost 100 days to get the swallow and digestion to start working but I did. The first time towards the end of treatment, it only lasted 37 days. You just get through it.

Larry, John was unable to swallow for two years -- starting from the third week of radiation and lasted until recently. He was on the tube all that time. He would have a feed (one box) every two and a half hours. There was one feed when he had to do one and a half boxes. This way he was able to take in six and a half boxes a day. I made up a spreadsheet with the feed times and the meds he should be taking for him to keep track of his feeds. We would bring feeds with us on doctor's visits because it is a two hour drive one way. We will come out of the doctor's office, do a feed in the car and drive home. This was one way we could get all the feeds in with all the medical appointments and not get too far behind.

I made sure we brought hand sanitizer with us in our 'kit' so we would have clean hands. We also brought bottled water (to use with the feed), a pill crusher, a small towel (to protect the clothing in case we spilled anything). I put everything in a ziplock bag so that I would know I had everything together.

I hope this helps. if you need more information, please do ask.

I also had a hard time getting enough PEG tube gravity feedings in every day. it seemed there were no minutes left in the day after my radiation, chemo, any other doctor appointments, and whatever amount of work I was able to squeeze in. First, I used a feeding formula that was calorie dense like Jevity 1.5 (1.5 cal/ml) or even 2.0 cal/ml stuff when I could get it. I would take two 8 oz cans with one can of water three times a day. It's a lot of liquid but I figured 3 x 8 oz = 24 oz and I KNOW I can drink two 12 oz beers. Doing it in three combined feedings/hydrations reduced the overhead of multiple feeding sessions because I would only have to setup, break down, and clean my feeding rig three times a day, plus another quick one I would do with just 24 oz of water, rather than 7, 8, or 9 sessions.

John only uses a 60 ml syringe to push the feed into his PEG tube. He finds he can only do one box 240 ml each time plus another 240 ml of water. When he does one and a half, he gets a bit "full." Larry, it depends on what you are using, gravity or just a syringe. You might also want to experiment a bit and find the schedule that works best for your circumstances.

I never could get as much as they wanted me too, and in fact I couldn't tolerate the formula very well. We even tried a different kind. I know we all need a certain amount of calories per day, and more to fight off the illness, but I think they sometimes forget to take into account body types and former habits ... I couldn't have taken in that many calories even on a healthy day when I COULD eat whatever I wanted. I am a small eater, and always have been. Forcing my stomach to do more than it actually could ended up harming me badly in the long run.

That said, I did make very sure to stick to a schedule of what I actually could manage, and kept on top of my meds and my hydration. That was the only way to keep sane about the whole thing.

As a general rule, if you are losing weight, your caloric intake is too low. If you are gaining, it's usually too high unless you have thyroid issues.

Thanks everyone. My wife helps me. She stays with me and gives me my feeds. Last Friday I was hospitalized with pneumonia and I'm still here on antibiotics. I missed chemo and 1 rad but had 2 rads this week. I am getting morphine. Still in much pain. Coughing up a thick phlegm. I am takng rest of meds in peg. I have gastro because I have ulcerative colitis also. I have a pulmonary dr who has prescribed a med to help dry me up. They are keeping me until nee toon is gone. My wife types what I want to say.
She uses two apps Carezone and calorieking to keep track of everything. I also have 2 daughters who are helping by taking care of house bringing us clean clothes. Wife stays with me in hospital.
I have had anxiety episodes due to the coughing and fear of choking. I also have mouth sores. Hoping I can go home soon.

I am in Alabama too, in Mobile. Thank you for answering. Good to hear so many positive encouring words.

I'm glad to hear you have such a crew around you. Your wife sounds like the perfect caregiver. You are one lucky man!

Unfortunately, meds to dry you out will exacerbate the thick goo and cause more of a choking feeling as it slides down the throat and sticks. Make sure you aren't laying flat on your back much as that will cause it to pool up and cut off the airway.

Try to slowly breathe deeply and work through the panic. The excitement in the body while going through that creates so many responses in the body that make breathing a little more difficult. You will gradually develop some strategies that will help you through the roughest times. Breathing through your nose while eating and a few things like that can help prevent inhaling food or drink. It all just takes time.

Hang in there!

Larry, sounds like you are in good hands. The phlegm will continue to bother you as long as you are not able swallow your saliva. Your saliva will collect at the base of your throat, where it thickens and you will have to cough it up. Keeping your mouth moist by rinsing it with flat club soda or the magic mouthwash will help. The fluid collected in your lungs only because you were trying too hard to swallow. There being nowhere for it to go, whatever it was that you were trying to get down went down the wrong way. A lot of people carry spit cups around during their treatment, and, really, nobody notices.