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#148068 - 04/11/12 12:12 AM help with feeding tube issue  
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plantgirl Offline
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plantgirl  Offline
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North Carolina
Ive had my feeding tube in since early March. Its coming out Thursday (Hallelujah!!!) But I have a problem. I was giving myself some crushed up vitamins that are too big for me to swallow through the tube tonight. When I went to flush with water afterward I couldn't get my plunger to move(wouldn't plunge so to speak) I noticed that the top to the white decompression valve thing is missing.I have no idea where it could have gone. Its not a big deal as it is coming out Thursday and I'm eating on my own ok. I'm just wondering if this would harm me in any way.Any thoughts?


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148073 - 04/11/12 03:36 AM Re: help with feeding tube issue [Re: plantgirl]  
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ChristineB Offline
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PA
What kind of feeding tube do you have? A PEG tube where it goes right into your stomach? Or is it a J-G tube where it has a port for a tube that goes into your intestines and a smaller tube inside of that which is into your stomach? What exactly is missing from your tube?

When giving crushed medications, dissolve them in water and be extra careful that there arent any chunks of medicine that could get stuck. This info is for anyone reading this thread who needs to take meds this way.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148085 - 04/11/12 12:00 PM Re: help with feeding tube issue [Re: ChristineB]  
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Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
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Posts: 74
North Carolina
Its a PEG and its the decompression vent the top popped off and I cant find it.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148087 - 04/11/12 01:36 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Mar 2008
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Charm2017 Offline
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Charm2017  Offline
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Alexandria VA
Plantgirl

Congratulations on getting your feeding tube out tomorrow!
If it were not a sin, I would envy you.
Relax today. The only valve a regular PEG tube has is the one that takes the water to fill up the balloon that holds it in. The actual tube itself goes directly to the stomach with no valves in between. The worse that can happen is that the valve leaks water and your PEG would fall out on its own before the doctors pull it out.
Unless you mean the closure to the end of your tube. That needs to be capped or else the tube clamped. Bottom line:
If nothing is coming out of your stomach thru the tube, you are fine.

I never heard of a decompression valve. Buttons, or low profile G tubes, have two valves. The same water valve as a PEG plus an anti-reflux valve that prevents the stomach contents from coming back out once the feeding extension is unhooked. That anti reflux valve also has a plastic cap but it is just extra insurance to keep debris out.

Christine is right about crushing medicine well. Enjoy your tube free life

Charm


Last edited by Charm2017; 04/11/12 01:48 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#148092 - 04/11/12 02:56 PM Re: help with feeding tube issue [Re: Charm2017]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
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Joined: Nov 2010
Posts: 74
North Carolina
http://oralcancerfoundation.org/dental/images/feeding-tube.jpg

Heres a pic. Its the one on the far right with the little bump on top. That bump is whats missing. Sorry for the confusion.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148098 - 04/11/12 03:25 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Jun 2007
Posts: 9,585
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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PA
I would cover it tightly with a piece of tape so nothing can seep out. It almost looks like a J-G tube except there isnt that extra skinny longer tube.

Congrats on being able to be tube free!!!!! Its a great feeling!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148099 - 04/11/12 03:42 PM Re: help with feeding tube issue [Re: ChristineB]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
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Joined: Nov 2010
Posts: 74
North Carolina
Thanks! I cant wait until tomorrow. I really am sick ofit..have had nothing but trouble with the darn thing from infections to having one of the covers come undone during the night and leaking stomach fluids all over me. (Sorry for that mental image). Anyway I will be happy to be rid of it. How long does it take for the opening to heal?


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148102 - 04/11/12 03:57 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
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Toronto canada
GOOD luck.. having it removed is easy! and you'll be free! hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#148109 - 04/11/12 06:16 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
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Joined: Mar 2008
Posts: 3,082
Alexandria VA
Plant girl

Yep, a picture is worth a thousand words. The "one on the right with the little bump" is the valve used to inflate the balloon to hold in your tube. It does not connect to your stomach but only to the balloon. So the only danger is that it could be damaged or have leaked and your tube is just hanging in your stomach. And that's not much of danger since all that would happen is your tube would come out a day early.

I wish I could tell you from experience how fast the hole would completely heal, but all I can share is that the first time my tube fell out due to a broken valve like yours, the hole had narrowed so much in one hour that they had difficulty putting a replacement in. But luckily for you, OCF has plenty of posters who had temporary PEGS so they would know . I know it took my tracheotomy stoma about two months to heal but it was so much bigger.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#148113 - 04/11/12 07:53 PM Re: help with feeding tube issue [Re: Charm2017]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
[b][/b]Thanks Charm. I know what you mean about the trach stoma. Mines been out for two months and its still not fully closed.

Last edited by plantgirl; 04/11/12 07:58 PM.

4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148115 - 04/11/12 09:20 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Jun 2007
Posts: 9,585
ChristineB Offline
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ChristineB  Offline
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Posts: 9,585
PA
The stomach heals very quickly. After only a couple days it was almost completely closed. I would guess at about 2 weeks to heal the spot left from my first PEG tube.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148172 - 04/13/12 12:58 AM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Well..got the feeding tube out. The actual removal part didn't hurt but I'm a little sore in the stomach area right now. Nothing I cant handle though. My tummy looks like it has 2 belly buttons now!
P.S. Thank you Christine and Charm. You always come through!!

Last edited by plantgirl; 04/13/12 01:08 AM.

4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148173 - 04/13/12 02:40 AM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Jun 2007
Posts: 9,585
ChristineB Offline
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ChristineB  Offline
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Posts: 9,585
PA
YEA!!! Congrats on being tube -free!!! Glad the removal wasnt painful. You will feel much better very soon, it heals quickly.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148197 - 04/13/12 01:19 PM Re: help with feeding tube issue [Re: ChristineB]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
Thanks Christine. I forgot to mention I got the ok to go back to work in 10 days.
Cant wait...I work at a garden center this is busy time for us.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148209 - 04/13/12 04:08 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Plantgirl; Great progress: Tube out, cleared for work. Reminds me of this video from Wizard of Oz
Optimistic Voices: Wizard of Oz
Keep the Faith
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
#148212 - 04/13/12 06:21 PM Re: help with feeding tube issue [Re: Charm2017]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
I thought about putting a jewel where my tube had been. Congrats on getting it out. That was a happy day for me, too.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#148213 - 04/13/12 06:38 PM Re: help with feeding tube issue [Re: zengalib]  
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Posts: 2,671
Anne-Marie Offline
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Anne-Marie  Offline
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TN
Congratulations Plantgirl!! - the tube free accomplishment! I think the jewel is a great idea! Maybe even two jewels with one for the BButton! That way all you need to do is draw a smile underneath!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#148214 - 04/13/12 06:44 PM Re: help with feeding tube issue [Re: zengalib]  
Joined: Nov 2010
Posts: 74
plantgirl Offline
Supporting Member (50+ posts)
plantgirl  Offline
Supporting Member (50+ posts)

Joined: Nov 2010
Posts: 74
North Carolina
[quote=zengalib]I thought about putting a jewel where my tube had been. Congrats on getting it out. That was a happy day for me, too. [/quote

What a great idea!! If I were 20-30 years younger I would definately be doing that.

Charm thanks for the video..that's my favorite movie of all time!!


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
#148493 - 04/19/12 12:20 PM Re: help with feeding tube issue [Re: plantgirl]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
smile age matters not! Do what makes you happy!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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