I'm trying really hard to eat more solid foods and depend less on my PEG for nutrition so I can get rid of the tube. The more food I eat, when it comes time to do a PEG feeding I get nauseated. Does anyone else have this problem? Is it normal or something I should talk to my ENT about next time I go. I've had problems with the tube in the past, infection and granulation tissue and have also had to have it changed out twice since it was put in June of last year. It seems there is a little redness around it now. Don't know if any of that makes a difference about this nausea or not. I would greatly appreciate any input you have on any of the above.

Thanks so much for all the positive responses I have gotten on my other posts!

Sandra~

Granulation and redness will not cause nausea. I have gotten my J/G tube swapped out every other month for the past few years without incident. That wouldnt cause nausea either. Nausea can come and go for a long time after treatments. I still have to take zofran once in a while on bad days and Im 6 years out. Make sure to discuss this with your doctor to see if they can help determine what is causing your nausea.

If you dont already have a feeding pump ask your doc to order one with a prescription for your medical supply company. That way you can run it overnight while you sleep. You will need to sleep propped up on a couple extra pillows. By running the pump overnight it will help you to cut back on the tube feeds you do during the day.

For at least the first year after treatment you will need to take in a minimum of 2500 calories and 48 oz of water. Your body has been thru the war and it needs extra fuel to rebuild itself. Try to make certain you are obtaining these daily minimums and try to eat a healthy diet with higher protein to help with the rebuilding. Check with a nutritionist to help you plan out a balanced diet.

Best wishes!

Hi Sandra

yes, normal. Whilst many return to some version of eating within a few weeks, a select few have the issues similar to what you describe. Sometimes it is just about recognising that the time it is taking to return to eating might be a bit longer than you had hoped and that is still ok. Alex's experience and some ideas below.

Alex relied on his PEG for over 12 months. I remember quite clearly being "told off" by the oncologist who inferred that Alex's bloating, nausea and vomiting, was something he just had to deal with should "try harder" ...thanks doc - very useful . This was in the February of 2011 which was close to 12 months after start of treatment (and insertion of PEG) and 6 months after the completion of treatment.

As a consequence of this, we started documenting what was really happening. Alex's problems included bloating, nausea and vomiting as well as disturbed taste, appetite and ability to swallow.

At the time Alex was on an overnight pump feed which he managed to speed up to finish around 4am in the morning. Even so, he found himself completely lacking in appetite all day. Finally in the evening, he would try mushy food even though he couldn't taste it and didn't want it. Essentially the first two mouthfuls went down well, the third was a battle and made him feel bloated and nauseous and the fourth often caused him to vomit. Consequence: Alex became fearful of that 4th mouthful as the one that was likely to undo all his hard work so stopped doing it.

Plan B was to start taking some formula orally and the rest by pump. Over time he increased the oral intake and decreased the pump feed until it was 100% by mouth. He left the PEG in for about 3 months without using it before having it removed in August of 2011 which was 18 months after he had it inserted.

Two things happened that assisted in switching Alex from pump/PEG to oral feeds that I would recommend you consider or discuss with your doctor.
1. Alex started going to the speech pathologist who showed him what was happening with his swallow and gave him exercises to do including using food (jelly snakes) as part of the process. Eating (well, swallowing mush actually) became a competition instead of a chore. He used the speech pathologist as his personal cheer leading squad and she was very happy to be that.
2. A specialist unconnected with the oncology circus, but very familiar with eating disorders caused by illness and treatment, prescribed an anti-depressant. The doctor pitched it as an appetite stimulant but it did a world of good for Alex's mood as well. Don't know which part had the effect - improvement in mood or improvement in appetite, but over the next few months Alex became fixated with getting rid of the PEG and achieved this nearly 1 year to the day that he finished treatment and about 6 months after he started the anti-depressant.

Maybe something in Alex's story will provide ideas or at least reassurance that you are not peculiar

Hi Sandra,

I certainly did not have my PEG as long as you have. However, I agree that redness and granulation would not cause the nausea but attention should be paid to that as well. Obviously, cleaning and flushing regularly are in order. During my time with the "alien", I had redness often which is a sign of irritation and infection. After cleaning with hydrogen peroxide, a smear of anti-bacterial gel on a q tip around the tube where the redness was solved the problem.

I got my PEG 2 hours after ringing the bell. I used it exclusively for 4 weeks after treatment. I drank water by mouth to keep my swallow going. I experienced the same thing when it finally came to eating food. Part of the reason, IMO, was that my stomach wasn't used to anything solid and had shrunk. My first solid food was one soft scrambled egg. I felt as if I had gorged at a Chinese buffet! Nausea was common up until a couple of months ago and occasionally I still get a bout even though my PEG is gone and I've been eating just about everything since Memorial Day weekend.

To quell the nausea during the transition to solids, I took my anti-nausea drug prior to feeding before I had any symptoms and used a really slow drip from the gravity bag.

Regardless, I would make a point to bring it up with your doctors. I stay in touch with my team via email and they're all great at responding to any questions (Johns Hopkins has a dedicated patient message/interface that posts appointments, messages, test results etc.) .

"T"

See the doctor, and maybe they can do a full blood work up. The nausea can be for many reasons like from pain and other meds, the type, amount, rate of feeding, constipation, compromised kidney function, a staph infection or other types of infections, diseases. Good luck.

I forgot to mention to you about silver sufadine cream (prescription). This will help keep the granulation to a minimum. After showering and pat drying the area under the round plunger, take a qtip and rub some silver sulfadine cream all around the site and cover with a drain sponge gauze pad. I would always add a tiny piece of paper tape to the gauze pad to keep it from falling off. Also avoid lifting anything heavier than 20 pounds or doing strenuous activity.


Paul is correct about the rate of feeding. If you are doing the push method for your formula, maybe its too fast and also it could be too heavy. Slowing down the feedings and watering down the formula usually will help calm the nausea. Sit still for at least 30 minutes after a feeding too.

Sandra,

A couple other things to consider are:

1). Amount of time up and active
2). Amount of protein taken

The first is very important as the treatment affects nerves and digestion is something that gets compromised by chemo and radiation. The mucocitis causes us to slough epithelial cells and the nerves closest to the surface have to regenerate and reconnect. Digestion becomes slower and the stomach emptying happens less because we are eating less. That causes nausea and acid buildup. The treatment further compromises the most important and longest nerve in our body that controls the release of acid, the churning of our stomach by smooth muscles, the moving of food through our digestive system. The best thing for this is more fiber and more time upright so gravity works with the muscles versus against.

Many people are told to increase protein during healing. If this is the case, high levels of protein while beneficial to regrowth of muscles ends up reducing appetite and causing nausea.

Imbalances of nutrition contribute to the nausea as well. Many people increase potassium during hot weather but reduce sodium. Too much potassium with not enough sodium causes nausea, dizziness and other bad feelings because the sodium-potassium pump in the cells cannot transfer nutrients in and bad things out. It is a common problem with endurance athletes but also with people whose immune systems have been compromised such as what happens with chemo and also much more so with the long-term effects of radiation.

Thank you all so very much! I certainly appreciate you all taking your time to make suggestions and give such good advice! I was told that it was fairly normal for the nausea when you start eating more but still have to do some PEG feedings. I'm trying really hard to get rid of the PEG since I seem to have so much trouble with it.

Again, thanks everybody!!

Try to think of the feeding tube as a temporary tool to get you thru a rough spot. I know all too well all the problems that go along with using one.

If you are able to sustain yourself for one month without needing to supplement your diet with the feeding tube then its time to get it removed. Im sure you cant wait but make certain you arent jumping the gun by pushing too hard to get it out, then have a set back and need it put back in. Relearning how to eat normally again takes lots of practice. I hope you arent being too hard on yourself with this. Many patients will continue to hang onto their tube for a year after finishing rads.

Best wishes!!!

I am so happy to announce that I had my PEG tube removed yesterday!! So happy. Now trying really hard to eat enough to keep myself healthy! Again, thank you all so much for all your encouraging words and advice!

Sandra, that is a huge accomplishment! Congrats!!!

YAY!!! Doing a happy dance for you! Another step, a huge step, in your journey.

Thanks everyone! I'm thrilled to be tubeless! The hole is already closed up and doing well. Now on to the next part of this cancer journey. Trying to get use to the new 'normal'.

Great!!!

Congrats!!! Best wishes with your continued recovery!!!

Wonderful, you did it! Way to go!