I am tube ignorant, I think....
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
Comments
-
Darn PEG
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,
Matt0 -
check with your nurse
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.0 -
I don't have any pain really...CivilMatt said:Darn PEG
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
..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?
p0 -
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....blackswampboy said:check with your nurse
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.
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?
p0 -
forks not recommendedphrannie51 said: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
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.0 -
the rest of the storyphrannie51 said:I don't have any pain really...
..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
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.
Matt0 -
Talk to RN or GIphrannie51 said: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
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,
Billie0 -
PhrannieBillie67 said:Talk to RN or GI
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
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.0 -
Rotationhwt said:Phrannie
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.
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.0 -
does it smell like baby throw upBillie67 said:Talk to RN or GI
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
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.0 -
I swear I can smell my tubephrannie51 said: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
I swear I can smell my tube all the time but my mom says she doesn't smell anything.0 -
I have only used the plunger
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.0 -
Not educated
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.0 -
BLOCKED
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.
PATRICK0 -
Phrannie
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.
kcass0 -
WOW....thanks you guys....
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
.
p0 -
All's well that ends well.... ha!phrannie51 said:WOW....thanks you guys....
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
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...
p0 -
suppliesphrannie51 said:All's well that ends well.... ha!
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
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.0 -
I too was tube ignorantphrannie51 said:All's well that ends well.... ha!
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
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!
Peter0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards