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PEG tube Problems

Niqmaddu's picture
Niqmaddu
Posts: 2
Joined: Feb 2007

I am having all kinds of problems with my PEG tube which I do have to use now. Pain, drainage, bleeding (surface, not deep). The doc who put it in can't fix it so he sent me to another who promptly nicked it. Now it drains, bleeds, causes pain, and leaks. The doc is talking about replacing it. Anyone have that done mid-treatment?

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Jay, we've talked, but let's talk again. There should be no pain or drainage or bleeding from your PEG tube. Period

If your doctor is not competent to take care of that, you need another doctor. As a matter of fact, I would advise that you seek out a nurse, a wound care therapist (they call them ET nurses around here for some reason) who can help with the wound that is that hole where your tube goes in, and can also help with what to do with that hole to keep it pain-free, drain-free, and blood-free.

What you are experiencing is not normal in my estimation.

While it sounds like you are on the way to having a new site, I would be sure to have a wound care specialist as part of the team from now on.

Thoughts are with you, my friend.

marcialou42
Posts: 3
Joined: Feb 2007

hi - i read the response from soccerfreaks and he is absolutely right - there should be no pain, bleeding, drainage etc - where are you from?? i had a tube replaced during treatment because it got blocked but it was a simple process - they just pulled it out and inserted a new one in the same sight but with your problems this probably would not work..where are you being treated??? you do need another doctor or health professional to help you....good luck and let us know how you make out....

boarsheadf16
Posts: 1
Joined: Feb 2007

yes I had my PEG replaced mid-treatment. The procedure was uneventful and I came out with a new "lifeline" but now I'm 1 yr past treatment and still cannot eat and am on the peg for life support if you wanna call it that! I cannot gain wieght on the PEG and am withering away since I cannot eat food!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

sir or ma'am: something is definitely not right with your treatment. If you do not have a nutritionist, you need to get one. In the meantime, there are many things you can do to help yourself. I am obviously not aware of your exact circumstances, but I could not eat food either for the longest time, and yet found ways to gain weight. If you are using a product like Jevity, for example, they can increase your caloric intake (those cans come in like 1.2, 1.5 and 2.0 'sizes'). You can also do many things to put better stuff into your tube.

While I chose not to do that, so that I would HAVE to eat eventually, others have advised me of various mixtures that will go into the tube that will improve your state.

Do not just let yourself wither away. It is not supposed to be that way, and we can help you.

Feel free to send me emails with any questions you have, and if I don't have answers myself, I will get them for you at once.

We are in this together, my friend. And you should not be in the situation you describe.

Take care.

Happymamabear
Posts: 5
Joined: Feb 2007

Yes my husband had his peg tube put in just after treatment started about three weeks. He was already having problems with it the food would come back up in the tube and it would leak out. He did have it replaced in the gastro center in our hosp. and it worked great after that. he said it was not painful to replace. Good luck.

MJ70
Posts: 72
Joined: Nov 2010

After 10 years of of eating on my own and now need a permant peg tube becasue of aspirating pnemonia ,,,any

 g00d advise would be appreciated ..Thanks   Mel

patricke's picture
patricke
Posts: 494
Joined: Aug 2006

I strongly believe that a third opinion from another GI would be appropriate in your situation.  I had a PEG tube (never left home without it) for 13 1/2 years, and never had the problems that you are having.  I hope that you can resolve these issues real soon.  For excellent sources of nutrition I recommend Fiber Source HN, and Boost Very High Calorie, which should be available at your local medical supply store, and are hopefully covered by your insurance.

For long term tubers, if your GI gives you the green light to put anything that flows into you tube, like mine did eons ago, I more than highly recommend investing (and it really is an investment) in a Vitamix blender.  We were turned on to the Vitamix by friends after Diane had literally burned out the motors of 5 conventional blenders in the process of blending table meals liquidey enough to go down my tube; it was an arduous, time consuming process.  The Vitamix will liquify anything, including the kitchen sink in 3, that's right three minutes to a consistency smooth enough to flow swimmingly down your tube.  So, for a number of years (I lose track) I have been enjoying the benefits of tubing whatever the family is having at every meal.  Of course one does have to watch out for those calories attached to the death by chocolate cake, I'll have a small slice please.  The blender is pricy, but for folks who have a medical necessity regarding being on a liquid diet, the company (very consumer friendly and helpful) offers a discount on their factory reconditioned models, which come with their standard warranty for all models.  You can check them out on the web and give them a call to find out about the details regarding the discount.

When I am out and about I still rely on Fiber Source HN for my meals, and when traveling or camping I use Fiber Source and Boost Very High Calorie (breakfast).  My weight has always been stable while on the cans for many years, and of course since the blending began.  

PATRICK   

Hard12Find
Posts: 211
Joined: Sep 2012

I had issues when my tube was first put in with infection around the stitches, finally got a nurse to do a test and sure enough staph....got it cleaned up, pulled all the stitch remnents myself since they were hesitant to do it, , clean clean clean, and use a q tip to clean more, extrude as much of the drainage as you can, it will get better, after treatment was complete, but was still dependant on the tube, one night at about 10:30 pm, my tube just popped out onto my lap, freaked me out, called the nurse, and was told to go to the ER, so went to the ER, and they had a hard time finding one the same size, and then couldn't get it inserted, I tried off and on for the remainder of the night to put the tube in myself, with no luck, next morning they sent me to radiology where the threaded a small fiber that could be seen on the scope as a guide, and they were able to get the tube in, but it was not much fun, first time you are under general anesthesia, so you wake up sore, second time you will get a topical, but it didn't help much, not meaning to scare you but just sharing my experience, about a month later the second tube came out like the first one did, and I just said screw it, as I had been able to swallow small soft foods, and was less dependant...seemed like it was time to be moving onto food as best I could...Hope yours goes better, lasts longer.....mine was a life saver went from 230 lbs to 140 lbs during treatment, now somewhere around 160 170 and feel pretty good, not much stamina, but working on it....

Remember its just another step in the road to being done with all that crap.....

 

Hondo's picture
Hondo
Posts: 6210
Joined: Apr 2009

 

I agree with Patrick Vitamix blender is the best on the market, but if you are like me and travel a lot you need something smaller to carry with you and I found NutriBullet works well. As for PEG tube get a Kimberly Clark Low-Profile Button it will give you your life back so you don’t have that tube hanging on you all the time

 

Hondo

KB56's picture
KB56
Posts: 279
Joined: Apr 2013

Jay, I had to have mine replaced mid treatment as the baloon that holds it in your stomach starting leaking so there was nothing to hold it inside me.  It was a piece of cake to have replaced and took about 10 minutes.   If your's is causing problems and the doctor nicked it, I would recommend gettting it replaced.

They deadened the area aound the tube, pulled the old one out and immediately inserted the new one, inflated to baloon and I was good to go.

No issue,

Keith

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