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I am tube ignorant, I think....

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

Keep in mind, I got the darn thing in April, but never HAD to use it till July. I've ran Coke thru it, and I flush it with warm water....but it's getting slower and slower, till today, it wouldn't work with gravity at all...I had to put the plunger in the syringe. Is this how it works? I mean, everybody starts out being able to use gravity, but as time passes we have to force it thru the tube?

I don't dare lose the use of this tube, since these mouth sores make eating and drinking impossible....and I still have to get thru this chemo with another coming the end of the month....my tube is my only option for food and water.

Do I need a new one? Have I messed this one up some how (I only do Ensure and Instant Breakfast VHC thru it)...never have done any real food thru it....

I got really spooked today when water wouldn't even flow down it.

p

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Dear Phrannie,

I don’t think you messed it up, at least I hope not.

I did have to get another PEG and there was no doubt on failure. We could not shoot anything down the tube, NOTHING! It was the most painful thing I’ve experienced in my life. The last time we used it I was sobbing it hurt so much. This was during week 5 and my throat was getting more sore every day. As it turned out, I got a new PEG and it worked wonderfully the rest of the time. The second time they even gave me a picture of the PEG from inside my stomach. The precursor to all of this was the slowing down of the transfer of fluids and the increase in incredible pain. If you don’t have pain, I am thinking there is something to do, I just don’t know what. Good luck! Maybe a master PEG user will drop you a line

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

..where the tube goes in has always been a little sore, but that's all...and my stomach doesn't hurt when I'm feeding myself. Did they tell you what went wrong with your first one, Matt? When they replaced it, did you have to go thru the whole "operation" again, or did they pop the old one out, and then pop the new one in?

Did you go to the emergency room, or did you make an appointment with the butt Dr. and then have to wait?

p

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

I think the first one had scar tissue or something blocking the entrance to my stomach. They cleared it once (the doctor) by plunging a syringe full of water down it (and that hurt like crazy). I did have to go through another operation and it went much smoother than anyone thought. After the procedure (before I woke up) the doctor took my wife aside, patted her on the knee and said I was going to have a really sore throat and that is when I got the liquid Hydrocodone. The sore throat never happened; I could not even tell they had been down my throat. I mean the throat was already a blaze from radiation. It was out patient surgery (few hours). I never quit swallowing and I always drank at least one meal a day.

Matt

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

mine got blocked yesterday for the first time (don't ask), and I've been using it for months. after clearing the block, it works fine again. never used the plunger, I actually cleared it with the tine of a fork...
so no, no change with time here.
I just run water through after my osmolite, and it stays clear.

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

and just stick it down there? How could you tell where it's plugged? I was thinking my was plugged at the end, but maybe not....

My tube has creeped me out since the beginning...so thinking about putting something down there never occured to me...I wonder if a shish kabob stick might work, too...

Another thing...mine has an oder to it...the tube itself has a sweet, almost fermented smell...is that normal, too?

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I could see the blockage, it was in the syringe and at the end of the tube. not recommending a fork for deeper operations. the plunger might be better.
but if it's happening repeatedly, best to check with the professionals. best wishes.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My tube once backed up and we did all kinds of tests to figure out why. Nothing ever showed up. It finally just went thru and no more clogging. They recommend to me to try feeding from several positions to see if it helped.....sitting, standing, reclining,laying on right side with head slightly elevated.They also said to twist tube at belly and see if that helped.
Maybe that will work for you. What worries me more than a blockage is the odor you talked about. You want to make sure something isn't going on in your gut. if you keep noticing that I'd have it checked. Don't want to lose the tube until your mouth clears up,which is hopefully soon!
Take care,
Billie

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Call the 24/7 number...that's what they are there for. I would be concerned with the odd smell. You don't have any weight to spare.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Every once in awhile, mine becomes blocked internally. Have you rotated the tube 360 degrees? That is what I'm supposed to do with mine every so often. I have also used WARM water with the plunger. That usually opens it up also.

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

then that's normal. The gastric juices do have a distinct odor and that is the smell of throw-up basically. I would not put a shish-k-Bob stick down there as those are made of wood usually and crack easily. If you want to stick something down there use something sterile but not breakable. Does it flow in the opposite direction, that is if you let it hang down do you get stomach gastric contents flowing out? If so, then you are ok. Also there are several different kinds out there as the one I had was a rubber tube about the diameter of a pencil and about 18 inches long. No way could I stick a fork tine down there. There are some button ones out there where you could. The twirling motion is to keep the damn thing from being grown over with stomach tissue and encapsulated. Try pushing some coke down it with a syringe and let it sit in there for a few minutes.

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

I swear I can smell my tube all the time but my mom says she doesn't smell anything.

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

The only time you should use the plunger is when you flush the tube before and after feeding and if you are administering meds, which also require flushing before and after. Have you been flushing with syringe and plunger after eating?

boardwalkgirl
Posts: 263
Joined: Jun 2012

I have only used the plunger once when I couldn't get mine to drain. I used just a little pressure. Have you tried rotating your tube or I have even squeezed on my tube in different spots and it has always opened up and stated flowing. I always run water thru before and after a feeding but just by gravity. I would call if you don't get it to work. That's what they are there for.

mechanicman2's picture
mechanicman2
Posts: 16
Joined: Jul 2012

My husbands Dr. was very upset when he asked us if they showed us how to use the feeding tube. He said they put this thing in there and just turn you loose. They don't even show you how to use it. It is a little crazy. But I guess we all figure it out! Trial and Error! His got clogged once and we just kinda pinched it between finger and thumb and broke it loose and poured some warm water in and it went thru. But we could see where it was clogged, down by his belly.

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey phrannie, your situation sounds very interesting; slow flow to no go. It sounds like your tube is working again for you after you gave it the plunge. If there is no obstruction you shouldn't need to plunge it again, and gravity should work until it's time to bid it a fond fairwell because you are eating regularly. I'm a long time tuber, and I always use gravity, pouring down anything that flows. When I first came home, without any tube use education from the hospital medical or nursing crew as to how to care for it, a life saving visiting nurse gave us the anxiety elixing 411. She advised us to flush it with water before and after, as you have heard others say, and flush it with some coke daily. The coke, or other similar soda (I use Diet Pepsi to maintain my lovely slim figure) has citric acid which helps clean out residues both in the tube and at the exit end. I also spin mine around about every day so that it remains free and clear again, at the exit end. As for smells, as long as your tube is functioning it is nothing to worry about, unless friends and family are complaining, then you might have a problem. So, if your tube is flowing normally again you should be alright, but if you experience another slow down and/or stoppage I strongly recommend ringing up your GI guy/girl for a consult about what is happening. I hope that you don't have any more problems, happy tubing.

PATRICK

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Getting tubes replaced is not uncommon, but considering how little you've used your's...Had mine for over 15 months, and it did get plugged twice, but pouring coke into it and letting that bore thru the blockage worked each time. Thing is- our tubes might be different. Go onto my profile page and click on Expressions- have three pictures of what mine looked like. You can also see what you might be dealing with under the skin and in the stomach. If only liquid is being put into it, should clear with coke.

Know you had rib, or some such, placement issues, so it is also possible the tube inside you is getting pinched a bit. Might also try lifting your shoulders with effort when you are feeding, or stretching the upper body. Do not think I woulda put wire or anything like that in the tube trying to clear it. Also might try being upside down trying to get flow out of it with the end cap off to see if anything comes out.

If it is just slow, rather than blocked- might not be a big issue. Have to get Nutrition, though. Also- I pretty much only put Jevity and water down my tube for feeding.

kcass

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

So many ideas....I have been twirling it, that was one of the few things that came with the instructions....

I figured out the smell, too...it's from the liquid Hydrocodone...and it appears only I can smell it...but I sniffed the bottle last night, and thought....wow...this is what stinks up my tube.

So I'm going to start "Coking" everyday...try changing body positions, lifting my shoulders, and maybe getting in my recliner instead of standing...

I haven't used it this morning, yet...just about to go do that...will report when I'm done :).

p

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

I still feel like an idiot over the smell being just from taking hydrocodone the last few days...

However...I flushed before I ate, and then I fed myself in the recliner...and the flow on the tube was back to normal. Flushed after I was done, too...

Somebody mentioned about how they turn you lose with these things and don't tell ya diddley how to use them...just how to care for them till you heal...after that you're on your own. They never even gave me syringes when I got mine...only on here did I hear about those. Finally the Home Health nurse brought me a couple (I had no idea where one would buy them, except maybe Vet Supply).

Like I've said, the tube has kinda creeped me out since the beginning, so I'm not as brave about "figuring things out"...I'm scared I'll screw it up.

With great relief I can say crisis averted...

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I get my osmolite delivered through a med supply company called Infusion Partners--they are in multiple states. They call every two weeks to see how my supply is holding up, and they always ask if I need syringes or anything else.
but the shipping is from a company called Medical Specialties Distributors--not sure of the relation between the companies.
anyway, you can get syringes and stuff delivered.

yensid683
Posts: 227
Joined: Apr 2012

After the tube was placed I was discharged with a pamphlet, what a great help that was!

I had several days of challenge with it and was fortunate that the nursing staff at my radiation oncologist's office was on the ball and helped my wife and I understand not only how to care for the stoma, but how to use the tube.

If you are not using it, flush it daily with a couple of syringes of water.

When you do use it, as you've discovered, flush using the syringe both before and after you feed. I've gotten to the point where I put a full 500ml of water through at each feed, 150 before and the rest after I've dripped in a couple of cans of Jevity.

Here's hoping your mouth calms down and you'll soon be back to oral intake!

Peter

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

My tube never became blocked or even slow...I flushed it daily ...the smell is real....I just used an anti-septic wipe to clean the whole outside and around the opening.

:)

Best,

Tim

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey phrannie, I'm glad to hear that your tube functioning is back to normal and the fluids are flowing smoothly again, and you solved the mystery of the sneaky smell. It is amazing how often trained experienced medical/nursing hospital professionals have a habit of d/c'ing us from the hospital with our spiffy new tubes, without giving us an iota of practical information about using and caring for them. My wife, Diane, just reminded me that when they sent me home, it was with 6 cans of food and a prescription for more, but our CVS pharmacy told us good luck in finding a place to order the stuff, cause they couldn't. God bless the Home Health Care Nurses! Well, you're back to having fun, so just keep it movin on forward. It is great to have this forum for problem solving, support, etc.

PATRICK

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I buy mine (insurance covers it by the way) from a medical supply store.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I've had mine a few years and it will be cremated with me when I die. I don't know why they say to use gravity feeding. I did that for a long time and then just started plunging very slowly and have been doing that ever since. I too used Ensure but constipation and weight loss made me switch to blended food and it had an immediate positive effect on my weight and energy levels. Since I use food I get blocks a lot of times but they are always at the point where the hose and the port are connected at the very top. If my tube has a flushing port then I just pinch the tube below the port and use a small syringe with water to break the jam. If my tube doesn't have a flushing port then I too have used a fork tine, a toothpick and I have even bought some of those very long (craft store) pipe cleaners to push through the jam(s). Somehow I always get it loose. Rotating is done every evening while I shower and YES there is an oder that either others can't smell or they are just being polite. I usually clean around the hole with a peroxide wipe whenever that happens.

Hope you are rid of it soon.

Denny

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

I am confused. Someone said the G-tube I had and PEG were one and same but whenever you all talk about the PEG it sounds so much more complicated than what I had. No one ever mentioned being able to put food in my tube nor do I think you could, it was mighty thin. I only put Ensure or Boost in it or could use it for liquid or crushed meds with a syringe. Actually, the Ensure went in a disposable bag that we would connect to the G-tube. The other thing you all talked about was the extra belly button when it was removed. Mine was actually inserted about 2 inches under my breast and when it was pulled out I never felt it. You could not lay down while using it or for a half hour afterwards. There was a stitch holding it in place so there was no twisting or rotating it. At one point it became a bit painful so they snipped the stitch and immediate relief. I'm beginning to think the G-tube and PEG are not one and the same.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

You have to puree foods to be able to put them in your tube. You have to use a plunger to get them down. The "extra belly button" indeed would be higher than your real one. Whoever took yours out probably deflated the balloon that was holding it in. If that was the case, there would be no pain at all. As far as the stitch is concerned, when they are first put in place, I do believe everyone has a stitch. After a while, the stitch is removed. So you see, what you had is consistent with a PEG.

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Thanks for clarifying. Sounds like they just forgot to tell me about pureed foods and a plunger. Fortunately, the Ensure and Boost got me through.

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