I do not think this is normal. Jim has had his tube for 2 years and never had the acid leak. He has only needed it replaced twice. Once because the guy doing his lung biopsy had him lay on stomach and the balloon burst, the second time the cap wore out. Several on the board have tubes for long term or life so I do not think this is normal. Maybe a different GI doctor is needed. I pray you can get some relief soon.

Debbie

Time Bandit said:

Had my tube installed before

Had my tube installed before all the treatment started as a backup. Had it for about three months and didn't have any discomfort until the last week or two; kept it clean with warm water and antibacterial cream. Did have some minor blood and stomach fluid leakage but by keeping it clean and giving it a good rotation every one and a while it went well. The big rush was gettin it removed. WOW. interesting to say the least.

I have always been confused between PEG and G-tube. I had a G-tube but you couldn't put food in it, like others talk about. Anyway mine caused me no problems and then it started hurting at the point where it entered my skin. Come to find out, they put a stitch in there to hold it in place. they like to leave that stich in several weeks but because mine was inflamed, they snipped it. Pain gone, problem solved. Hope your solution is as easy.

Candi

PJ47 said:

Thanks everyone for your suggestions.

I have been cleaning mine with warm water and putting antibiotic cream on the small red area next to the tube.  I will try and find the calmoseptine which sounds like it acts as a barrier from the acids.  I called the nutritionist today and she suggested it may be me sleeping on my side and causing some stress on the tube and she also said I should "burp"  the tube several times a day to get the air out of the stomach.  I just did this and the potato leek soup I had eaten came out like Mt. Vesuvius.  Good thing I had a towel handy or my computer would have been covered!  My PCP is putting an order in for me to see the Interventional Radiologist who put it in but I am not holding my breath because of the Holiday.  Merry Christmas to all!

 

PJ

"burping the tube"....LOL.  I can't tell you how bad I wanted mine out....I got it in April, and when rads were over in June, I was asking for it's removal.....my Onc said no, and it was a good thing.....I still had 3 more chemo's to do.....and it was during them that my mouth went to hell, and I learned to appreciate my tube.....but I only appreciated as long as I couldn't eat.  The second I could eat, I was hounding them to take it out.  They had a "weight acheivement" in mind before they'd remove it....didn't matter to them that I wasn't using it.....so I finally wore a pair of Danner workboots to an appointment which kicked me over the weight they were looking for, and at last....I got permission to get it removed.

I used Triple antibiotic ointment where the tube goes in, and oh man, what a relief.  I was so sore, and it was irritated.....plus just like you, mine would get yanked in my sleep.  I started wearing the stretchy camisoles to bed, and that helped a lot.

p

I was ready to get my peg tube out as well.  Not due to pain but I just hated it hanging there and it seemed to tie me to the IV pole where I hung my "food" bag For so many hours a day.   I got mine out 3 weeks after my last radiation treatment which may have been a week or two too early.   I did have to have my tube replaced once because the baloon that holds it in place in your stomach leaked so it wouldn't stay in.   I did't have the type of pain you describe but there was discomfort for sure. 

I would keep it in until you finish treatment because you will feel pretty bad for a couple of weeks after you finish radiation.  After that then you can make the call to see if you can maintain or gain weight without using it.  It's definitely better to have it and not use it than to need it but not have it. 

Good luck,

keith

PJ47 said:

My tube seems to be causing me to loose weight.

I have to weigh worring about needing it after treatment vs how bad and annoying it is now.  I cannot sleep through the night due to the tube pain, cannot eat much without it hurting more and my stomach feeling full. When I flush it with one tube of water, some of the water spits back out of the tube a couple of times.  I would hate to see what happens if I actually put formula in and it flew out!   I have to hold my stomach up with my hand in order to take the pressure off.  I think my body just may want to reject it or else it is somehow incorrectly placed.  Anyway, I have decided to have it removed and hope for the best.  

PJ

I am the forums biggest PEG hater but since you have one and want it out now, you have to be certain you are able to consume sufficient calories and liquids orally. Before you have it actually removed, force yourself to consume fluid and nutrition orally for a couple days, carefully recording and measuring your intake. If you are unable to consume 2500 calories and 40 oz of water, then reconsider the timing of having it removed. 

If the tube hanging out bothers you, there is a G tube holder that works quite well for me.

Here is the the link on Amazon.

http://www.amazon.com/NELMed-1921-tube-Holder-Inch-60/dp/B003DQEXBK/ref=sr_1_5?s=hpc&ie=UTF8&qid=1388097253&sr=1-5&keywords=g+tube+holder

I'm ordering a second one which allows me to switch back and forth while one is being washed and dried.

PM