Wanting my G-tube out!

PJ47

It is 3 am and my g-tube woke me up again.  It starts to hurt, mostly ache or throb around 2 or 3 am. This one has been in place for 3 weeks. The  one before that for less than 24 hours.  I change positions, prop myself up fiddle with it, etc.  I am basically tired of the tortue it has brought me.  I am still eating and swallowing ok and have 3 more rads left this week.  Was planning on waiting until the week after rads to have it removed, but tired of the aggrivation.  

What says the group?   Is this normal for tubes?  

 

PJ

 

 

lornal

So sorry

So sorry to hear you are still having problems with it.

As far as normal - I have no clue.

I'm on tube 3 (first went in Sep 30).

It was fine until Saturday morning- and it started to slip.

My pain is coming from the skin where the stomach acid leaks on to it.

A wound care nurse recommended Calmoseptine.  Like desitin but with menthol.  It helps protect the skin - but every now and then the acid reaches the skin - and ouch.  This morning, lots of new blood.

Of course, with Christmas, the doc is on vacation.  I just got a patient coordinator at the cancer center for my new diagnosis.  I think I will email later and find out if they can help stabilize the darn thing.

Your almost done with treatment - hang in there. 

Oh, and Merry Christmas

 

jim and i

I do not think this is

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

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.

hwt

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.

G-tube

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

hwt said:

G-tube

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

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

phrannie51

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

I never heard of

"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

CivilMatt

PEG problems

PJ,

I had 2 PEG’s, the first very bad, the second one very good.  I always drank one meal a day while on the PEG, but was drinking all my meals shortly after all treatments ended and had my PEG popped at 2 weeks post.

When you can show your team you no longer need the PEG, they should honor your request.

Matt

KB56

peg tube removal

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

KB56 said:

peg tube removal

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

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

donfoo

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

unusual for me but ...

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. 

KB56

donfoo said:

unusual for me but ...

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. 

peg removal

I agree with donfoo in that you don't want to get it removed until you're sure you can get by without it, especially if you're not done with treatment yet.  Getting 2500 calories and that much water is tougher than you think and since you already have it if you could make it more tolerable it would be good to have.    It used to bother me hanging free at night so my wife bought me some women's tank tops at Wal-Mart ( like $3 or so) and I would wear those around my midsection and it would keep it close to my body which helped.   Plus at the time they had some great spring colors:)

I hated my Peg tube as well and couldn't wait to get it out but I lost 30 pounds with it and can't imagine how much I would have lost without it.  even after you finish treatment your throat will be really sore for some time (mine was 5 months post treatment before it stopped hurting).     you will feel better with time and everyone is a little different but if you can keep it for a little while longer it may help with your nutrition and hydration As your body heals and recovers.  

Purplemountain

G Tube holder

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

Jeff2159

Know how you feel

had my g-tube for 10 months and forced myself off of it as it was hard to take in 2500 calories and 40-60 oz of water as my swallowing is compromised. I would wait 3-4 weeks after all treatment as rads side effects can still come into play. Also my doc said I had to stop using the tube for 2 weeks (except to keep it flushed and moist in the morning, don't want to dry it out) and maintain my weight. Nice thing without tube is I can now swim or take a bath. Good luck

Jeff 

PJ47

Jeff2159 said:

Know how you feel

had my g-tube for 10 months and forced myself off of it as it was hard to take in 2500 calories and 40-60 oz of water as my swallowing is compromised. I would wait 3-4 weeks after all treatment as rads side effects can still come into play. Also my doc said I had to stop using the tube for 2 weeks (except to keep it flushed and moist in the morning, don't want to dry it out) and maintain my weight. Nice thing without tube is I can now swim or take a bath. Good luck

Jeff 

Finished radiation this week and planning to wait til next week

I turned the tube a bit and some of the pain has lessened.  The balloon may have rotated and taken some pressure off.  I am hoping i can still eat fine next week and then I will have it out.  I only have to eat about 2000 cal.a day.  I drink 40-60 oz of water and green tea and throat coat tea (another 16 oz) and I eat a lot of soup, cream of wheat, cottage cheese and canned peaches, and organic supplements and protein smoothies.  I have managed to maintain my weight except for when I had the 2 tube surgeries.  I have had this tube for about 1 month and have never used it for food or supplements.  I flush it once or twice a day.  The tube has made it a real effort to get the calories I need as I feel full all the time as though I had a gastric bypass surgery and there is less room for food and fluids.  Any way I will have it removed next week if all is going well.  

PJ

lornal

PJ47 said:

Finished radiation this week and planning to wait til next week

I turned the tube a bit and some of the pain has lessened.  The balloon may have rotated and taken some pressure off.  I am hoping i can still eat fine next week and then I will have it out.  I only have to eat about 2000 cal.a day.  I drink 40-60 oz of water and green tea and throat coat tea (another 16 oz) and I eat a lot of soup, cream of wheat, cottage cheese and canned peaches, and organic supplements and protein smoothies.  I have managed to maintain my weight except for when I had the 2 tube surgeries.  I have had this tube for about 1 month and have never used it for food or supplements.  I flush it once or twice a day.  The tube has made it a real effort to get the calories I need as I feel full all the time as though I had a gastric bypass surgery and there is less room for food and fluids.  Any way I will have it removed next week if all is going well.  

PJ

Yay

You made it through rads!  That's great.  I'm glad the tube isn't as painful either.