Can someone please advise...my husband, Jim had a "G-tube" inserted surgically two weeks ago (he was about 3 weeks into his radiation treatments at that time and could not swallow anything but a small amount of water). He remained in the hospital for 3 days to make sure he was recovering well and the tube was working properly...it seemed to be. Things did not go well after he got home: pain, severe constipation, and unable to tolerate the feedings we were prescribed: 400ccs 5 times a day, every 3 hours by syringe. Visiting Nurses came out to help (showed how to do syringe feeding, gave enemas (fun stuff), etc. One week after the surgery Jim was finding it difficult to get his feedings down (reduced to 200ccs) and was very uncomfortable (still no BM) The surgeon ordered exrays of his abdomen but found no obstruction. Jim was vomiting after even a small feeding, couldn't tolerate water via mouth or tube really and we were back to the hospital. He spent 3 more days at the hospital and was feeling much better, getting hydrated, finally a BM, etc, feedings were up to 150ccs/3 hours...then he came home last night and we are back in trouble. It seems that excessive movement (like walking to the bedroom!) makes him sick to his stomach, that and the fact that he is producing so much phlegm or his throat is so swollen that his gag reflex is in panic mode, even clearing his throat can make him vomit. Today we spent 3 hours getting IV hydration and anti-nausea meds at the chemotherapists, but he is still very nauseaous (sp?)
What are we doing wrong here? I'm nearly at my wits end and so is Jim...can anyone give us some suggestions for dealing with the gagging, nausea issues? I am so sorry this is such a long rambling post...Jan

Hi Jan
I was on a PEG tube for 15 months. I too had problems early on, although not as severe as your husband, but nevertheless irritating.

Have you noticed the length of tubing coming out of his stomach? Mine would fluctuate. Sometimes I swear my stomach would suck that tube right in. Other times the tube would be two to three times longer. I began to realize that when I had a lot of tube inside my stomach I would become nauseous, "eat" less, and become rather lethargic.

Soooo, I began to tape the tube to my stomach at the proper length to avoid these nasty little symptoms. Of course, everytime it was time to fill up I had to undo the tape but overall this worked well for me.

Hope this helps,

Jeff

Hi Jan,

I'm sure you will get many replies as this issue is debated quite frequently here on the forum. The first thing I would suggest is to discontinue the bolus feedings by syringe. Get a feeding bag and let the feedings SLOWLY drip into the tube. Many people cannot tolerate the bolus feedings.

Also, you may need to go with a different food. You didn't state what Jim was using, but I know Ensure sometimes is not tolerated as well as some of the other foods. My daughter did better with Nutren. Others have done well with Jevity, etc.

When they did the tests, did they check to see if the stomach emptied properly? In Heather's case, some of the food stayed in her stomach instead of going through her intestines. As soon as she moved, she would vomit. If this is the case with Jim, they should prescribe Reglan (metoclopramide). It helps the stomach to contract and empty completely.

Whatever you do, don't let the doctors shrug this off. It took us much too long to get this figured out and Heather lost way too much weight. She was vomiting for 2 1/2 weeks while the docs screwed around. Make it a priority to get them to address this issue ASAP.

Good luck,
Rainbows & hugs,
Rosie

Sorry, me again. One more thing, It is extremely important to keep the bowels moving. Some things to try would be Senekot-S, Colace or Milk of Magnesia. I would ask the doctor which would be the best for Jim to try first, but definitely try something. Constipation can be a HUGE ongoing problem if you don't get it under control.

Rosie

I don't know how any of the posters on this board got through eating using the syringe, (Several have said it was not problem for them) I couldn't do it. Please do a search under the word PEG and it will find all the previous posts related to this, there have been a ton. From my own experience I have these recommendations. Only eat from a slow drip bag and forget about shooting it into your stomach with a syringe. I couldn't tolerate that and it made me sick every time I tried it. 3 cans of ensure and 2 of water on a slow drip from the bag = feeding time one hour. Next always eat sitting up. After eating, do not lie down for at least 45 min, you'll get sick. Feeding material room temperature. Nothing cold. Stool softeners everyday, over the counter type. (The pain meds are constipating, as are most of the PEG feeding formulas.) Ensure has one with fiber, but it isn't enough to get the job done. Rx laxatives may be required, have them on hand. Senecote is one.

Thank you for your quick and helpful responses Jeffrey, Rosie, and Brian. We are using Jevity with fiber, Lactulose (30cc/day for past two weeks), and Senokot to try to battle the constipation. The options given to us for feeding were CAD pump (noisy, seemed to clog easily when we used it in the hospital right after surgery) or bolus feeding with a syringe...I have been asking the nurses about other options (like what I had read about here on this forum) but they all shrug and say they aren't aware of them. The tube has been a problem from the start, until the surgeon adjusted it in the hospital the other day, it was "popping" frequently (the plastic disc that keeps it in place would be sucked in to Jim's belly (about a 1/2 inch indentation) then 2-3 seconds later it would pop back out, like a bubble had burst inside or something...it caused Jim quite a bit of pain and the Doc kept shrugging it off until Jim got angry with him for seeming like he didn't believe it was doing it...eventually he witnessed it, but wasn't sure why it was happening (he adjusted the balloon that keeps it in place, he adjusted the length because he thought the stomach might be trying to "digest" the tube, and it seems better, but still happens now and then). Jeffrey, it sounds like you might be on to something, maybe we just don't have it right yet...Brian, do you know where I would get this feeding bag? Is there a company that makes them that I could contact, I will try asking the folks at Advantacare who supply us with the Jevity and (if we were using one, the CAD pump).

I truly appreciate all your suggestions and responses,

thanks

Jan

In what world are these nurses living? Unbelievable!! This would give me pause as to where I was being treated if the staff had never heard of a PEG feeding bag.... Look at the pictures of PEG feeding bags in the main body of the web site at http://www.oralcancerfoundation.org/dental/tube_feeding.htm

Jan,

I got Heather's first bag at the local pharmacy. Just tell them you want a bag for gravity flow feeding, not to be hooked up to a pump. The pump bags have the little cassette that goes in the pump. The gravity bags are basically the same, just without the cassette.
Hospital supply companies also have them. Just check the yellow pages. You should also check to see if they are covered under your insurance plan. Good luck.

Rainbows & hugs,
Rosie

Brian and Rosie,

Thanks for the additional info...it does make me wonder when not a single nurse on the oncology floor of the hospital, nor any of the VNA nurses that have visited in the past couple weeks have a clue about the PEG feeding bags...at least the visiting nurse that came today knew a bit more about them...she also suggested we request a referral to a gastroenterologist about the weird popping thing that Jim's tube is doing. She also said we should ask our doc about something called TPN (total parenteral nutrition?) for Jim since he is still not getting enough nutrition or calories and has lost about 17 lbs so far (since January, is that a lot?) He has probably lost 12 of that in the last three weeks. I will check with the local medical supply pharmacy about the bags...wish me luck.

Jan

p.s. positive note: Jim is feeling quite a bit better today.

Jan-
I work at a hospital and can get you those bags for free. It would be NO PROBLEM--please let me know if you need them and I would be happy to ship a few out to you on Saturday morning via Priority Mail. But, you should know that those bags are very common and I would think that ANY nurse would know. I am a unit secretary in the ICU and I know how to use them, etc. Well, I would be happy to get some for you, but I need to know because I leave for work at 2pm EST on Friday and do not work again until Tuesday!
Desiree'

Jan,
I too am in awe that your nurses are not up to speed on the gravity bags. If your husband is on medicare, the bags and ensure are paid for through home health. The doctor needs to write a script for it. I imagine insurance would cover it too. Any city of moderate size should have a home health pharmacy that could fill it. Also make sure that the Peg is not being moved into the intestine when your husband enperiences the sucking in of the tube. You may have to insist on a dye study to see where it is and how it functions. John had to have one and that Peg had to be removed and replaced. A properly working Peg is a God send. It keeps the person totally nurished. As with Brian, John could have never done syring feeding. It would have been too much too fast. It takes him around 45 minutes to do two cans of ensure.
Remember the rule You know your own body. Don't let anyone blow you off. If you have questions-- make sure that they are answered to your satisfaction.
Good Luck.
Meredith

Thanks Meredith, we've asked our primary care doc for a referral to a gastroenterologist, since the surgeon can't seem to figure out why this "sucking in" thing keeps happening...good news is that things are going much better with the tube (aside from sucking in thing) and HURRAH, we finally got some gravity feeding bags from the company that provides us with the Jevity--still, I had to call them and ask if they had them, and none of the medical staff we talked to seemed to know...one nurse with VNA thought the Advantacare people might have such a thing. So, Jim is finally able to get more nutrition, we're up to 1700 calories today.
Question...Jim wanted me to ask if there are any tips for dealing with the mucus/gagging problem...I imagine water/fluids might help thin the secretions?? he is having difficulty getting more than about 16 oz H2O through drinking, gets a bit more through the tube flushings etc. Any tips on this would be more than welcome.

Jan

Hi Jan,

I too had the thick mucous/gagging problems you write about. There really wasn't anything I could do about it -- it was just something I had to endure. I would gargle with magic mouthwash to ease the pain and rinse my mouth with salt/soda solution. Rinsing my mouth with water would have sent me through the roof. It was like acid.

I can tell you right now 1700 calories is not enough. The body needs calories to heal, a lot of calories. I was consuming 2800 calories/day at 5'10".

Heather took Salagen to help thin the mucous and make it easier to spit out. She also got a suction machine with a yankeuer tip to suck it out of her mouth. The less mucous you swallow, the less nausea you have from it. Also, I think some people have mentioned that the carbonation in soda seems to help to break it up.

Since Heather started chemo, she has been on TPN. It supposedly is supplying all the nutrients she needs until she can use her PEG tube again. It is definitely worth asking about.

Rainbows & hugs,
Rosie

Hi Rosie,
I've followed your posts closely and was wondering how your daughter is doing? How are the treatments going?
In my prayers,
Mandi

Hi Mandi,

Thanks for asking about Heather. So far, we can't tell if the chemo is working or not. She had to postpone the 2nd treatment of the new protocol because her white cell count was too low, but it is up now, so she will be having the chemo today or tomorrow.

They have been giving her steroids to help keep the severe swelling down. So she does feel a little better. Other than the white cell count being down, all her other vitals are good. Her lungs are clear and her heart is strong, so we don't have any worries there. It is just a waiting game to see if she responds to the chemo.

Whether or not she responds, I'm hoping to take her home within a week or 2. She has been in the hospital a month now. Her sister and I can do almost everything the nurses do anyway. About the only things we don't do are give her injections and change the medicine bags on the pumps. With the help of visiting nurses, I am sure we can care for her just as well at home.

My wish for everyone is that you and your loved ones continue to improve and no one ever gets to the point that Heather is. This is just the most horrible disease. It leaves you with no dignity at all. But we do continue to hope for that miracle. As they say, it's not over til the fat lady sings and I don't hear any music yet!

Rainbows & hugs,
Rosie

Hi Jan, I can totally sympathize with you and Jim. I went throught basically the same ordeal six months ago. You have to find nutrition that is compatible in order to keep the weight on, I lost 34 pounds during radiation and 9 pounds prior to radiation because of tooth extractions. Gravity feeding is definitly the best, which is what I did and have been doing, I found that doing one can 5 or 6 times a day works out better for me, I also try to take and equal amount of water or gatorade at the same time.
The medications will cause all sort of BM problems, senecote worked for me after taking it as directed for a couple of weeks I tapered of until my body started acting naturally again and it will. I had one of the worst attacks of constipation that anyone could imagine immediately after starting tube feeding I can almost understand what women going through labor and cramping feel like. At least as I explained it to my wife she related that you girls go through something similar on a monthly basis, god bless you, it was hell.
As for the thickening saliva, soda water will thin it some but you pretty much have to work through it, I carry a spit bucket with me everywhere I go with either napkins, which I prefer, or paper towels. Immediately following radiation will be the worst, but it will get better also.
I hope this has helped, keep in touch with this site there is alot of good information that you would have to pry out of Dr.s and Nurses.
You are both in our prayers, be strong you can be cured.
Bill
stage III SCC base of tongue and left lymph node
diagnosed 9/10/2002
84radiation treatments
6 chemo treatments
radical neck disection
survivor, and proud to be one