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'