Here I am with another question, so thank you ahead of time. I'm starting to feel nauseous after my third can of the day. No matter how I use it, one can every two hours or two every 6 hours, fast, slow...I still always feel full and horrible. (Boulus method, I just put it through the syringe) I've been using the PEG for a over month and this just starting happening. I'm now in my third week of radiation. My dietician thought maybe I need to move around more. I walk everyday and do chores sound the house. Wondering if its possible after all this time my stomach is having a bad reaction to this particular formula (fibersource hn) One huge bummer is no matter how hard I try I can sleep sitting up...I've been practicing ans no luck and have tried with the various other surgeries and hospitalization with asthma, so I don't think I'll be able to handle a pump at night : (
Hoping someone has some thoughts....

Anything is possible - ask the to change your formula or maybe cut it with water so its not so heavy .. I couldn't tolerate any formula... Ack!

Thanks

I was given Osmolite and added 8oz of water to thin it out. Also used a gravity bag to feed with as opposed to the syringe. Slow and steady was key, usually 20 minutes or more to empty the bag. Too fast and I got sick. Definitely check about the formula and try thinning it and the gravity bag.

I don't know what to tell you about sleep as I had the opposite issue and couldn't lay prone on the bed. I had no choice but to sleep sitting in a recliner and did so for a couple of months. I bought one of those neck pillows (for air flights) that helped my neck. Sleep was more like 1-3 hour naps for a long time. Eventually you'll sleep if even just naps.

Positive thoughts and prayers

There are hundreds of formulas out there. Some are specially made for those who have a more delicate stomach. The easiest way to stop the nausea is to slow it down and water it down.

I highly recommend getting a prescription for the feeding pump. The pump runs slowly overnight while you sleep on an incline (not sitting up). You can even have the pump running while you relax watching tv of using a computer in the evenings. Its portable and will go wherever you want to do the feedings.

To sleep inclined, many patients will sleep in a recliner or put a couple bricks under the feet at the top f their bed. You can even place something between the top of the mattress and box spring to give you that incline and then sleep on a couple pillows. You dont have to sleep in a sitting position.

Ive used a feeding tube for about 5 years and know all the ins and outs of them. Please give my suggestions a try and your problems will be solved.

I will call the dr and order a pump today, but will start with watering it down. Will also figure out the bed situation, I have a sleep number bed so the bricks might work. Hope I can exchange the unopened boxes of formula, my co pay was a couple hundred dollars if not..oh well, it must be done.. Thank you so much, I'm getting ready to leave for tx, and I'm still sick and it's going to be impossible to take anything in this morning without vomiting it all back up. Im pretty sure i will be vomiting in the next few min, and the ride there is over an hour. Will grab a boost and hope to sip on it on the way back. Thank you.....

Hi Nancy,

I'm sure you know this but since the radiation is just starting and has probably yet to hit your throat hard, why are you taking your nutrition via Peg? My own opinion is to try as hard and as long as possible to eat orally. Only use the Peg as a last resort. Others may disagree but working all those throat and swallow muscles as long as you can is best for you long term, although it may hurt a lot short term.

If you need some different formula, I have a few cases I can send you.

don

The medical supply company probably will not allow you to return the formula. If you get switched they will sometimes give you a free case of the new kind to make sure you can tolerate it before you get a full order.

It is very important that you keep swallowing as much as possible even if it hurts. It may get pretty difficult with your throat becoming so sore it feels like you are swallowing razor blades but you still MUST try to take a few sips several times per day. Down the road it is far more difficult to have to retrain those muscles to relearn how to swallow. Since you are just beginning to use the formula, you can sustain yourself with 2500 calories by eating/drinking then you can always add 2 or 3 cans of formula overnight with the pump and get extra calories and hydration. If your intake is 3500 its not too much and you still shouldnt gain even a pound. Your body is fighting both the cancer and the treatments plus trying to rebuild itself so that takes an incredible amount of calories. Take in as much as possible with 2500 being the bare minimum every single day.

Good luck!!!!



PS... Almost forgot to tell you about The Oley Foundation. They run a formula exchange program where you can pick up some cases for just the cost of S&H (about $15 per case). That program may help you avoid paying hundreds in co-pays. Also I think its Nestle who has a charity program that they will send the patient 12 cases of one of their brands of formulas with proper paperwork completed by your doc or nutritionist. Many hospitals also have things to help needy patients with these types of supplies. If you dont speak up and ask for help, they dont volunteer the info. Talk with your nutritionist or nurses about what your facility offers.

Hi don...I started having problems eating orally after my TORS and went from 113 to 103 rapidly, and couldn't afford to lose one more pound. I needed to put weight on before tx so I started the tube early and ate orally for awhile and now I'm dependent on the PEG. I do eat food daily for practice (tho very little) and drink a good amount all day, tho that's getting harder to do. I have the magic mouthwash but I don't think it's time for it yet. I'm back up to 111. I really don't understand why I couldn't/can't eat. Probably both physical and psychological. I'm usually a strong person, I'm the one people come to for advice, etc. This journey has knocked me on my rear end...and hard. I'm not me anymore (mentally) and of course I hate it. The forum keeps me aware I will be me again one day, even of its a little bit different, a new normal.
Made several calls this morning and waiting for the dr to call back and order the pump that Christine suggested, and some reglan. You are incredibly kind to offer to send your formula. Dietician doesn't feel it's the formula since I've been fine thus far and believes its just all the changes I'm going through bec of the tx and mucous.
Many many thanks.

Another complication that is often overlooked is the bleeding in the mouth and the entire digestive tract. Any traces of blood from mouth sores, etc., that hit the stomach will cause a lot of nausea. It is the body's defense mechanism that clues us something is wrong. In addition, not spitting out the thick mucous that is full of bacteria and sloughing off epithelial cells cusses it to naturally run into the stomach and it can cause nausea, vomiting and diarrhea since the whole digestive system is already overloaded processing everything from treatment.