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#148936 - 05/01/12 06:09 PM Re: Feeding Tubes [Re: Maria]
itsoktoday Offline
Supporting Member (50+ posts)

Registered: 04/30/12
Posts: 60
Loc: California
Everyone,
Thank you for all the helpful tips. Do any of you have problems with reflux or asperation? They want to put my tube in my small intestine. I just found that out.
_________________________
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.

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#148937 - 05/01/12 06:10 PM Re: Feeding Tubes [Re: Charm2017]
itsoktoday Offline
Supporting Member (50+ posts)

Registered: 04/30/12
Posts: 60
Loc: California
Hi Charm,
What do you mean again by a button tube? Never heard of it. I shall do some research on that.
Thanks
_________________________
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.

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#148939 - 05/01/12 06:41 PM Re: Feeding Tubes [Re: itsoktoday]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
Hi there again... to the people talking about formula's etc. Is it not possible to make healthy blended food on your own? I know it's a lot of prep work but ultimately from a health stand point you would be eating food that's prepared fresh by you and gives you more control... there is a website for tube feeders that offers nutritious options with no additives and chemicals.

As for you - Itsokay.... Mine was placed in my small intestine during treatment... the bad thing about that is you are then stuck on a formula feed I think... since - i was told by a dietician that you have to have a special type of feed for that as it has to be predigested? Of course there are probably many different brands, but I would ask. good luck.
_________________________
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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#148942 - 05/01/12 07:07 PM Re: Feeding Tubes [Re: itsoktoday]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Robin

Regular G or J tubes have a long tube dangling out the front.
Buttons or skin level devices do not.
I did not realize that you were talking about a J or Jejunum tube. Those tubes go into the small intestine.
J tubes require a special type of "button". Here is a link to one woman's J button story J button
Here is a link to pictures of the two most popular G or gastronomy"buttons". They go directly into the stomach Mickey vs AMT button

As you can see, the J button has a tube on the inside since the intestine does not have the storage of the stomach. The G button has no tube. Both use a balloon to hold it in.

There are also combo J and G tubes. J tubes almost always require very slow feed drip with a pump. You need a tube first to let the stoma heal properly before you can get a button
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

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#148950 - 05/01/12 09:44 PM Re: Feeding Tubes [Re: Charm2017]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8396
Loc: PA
I have a J/G tube which has a port for the stomach and another one for my large intestine. I usually use the smaller one (stomach) for meds and the larger one for the feeding formula. The J/G tubes are great but they do wear out quickly. That is a huge disadvantage of them, having to go every 2 or 3 months for a new one. Its done on an outpatient basis where you are awake for the whole thing. It can be uncomfortable, but it is fast. I usually walk out of there with a brand new one about 25 minutes after I walk into the hospital.

Good luck!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#149029 - 05/03/12 03:50 PM Re: Feeding Tubes [Re: ChristineB]
sandisays Offline
Member

Registered: 02/11/09
Posts: 18
Loc: missouri
I m not sure what kind of information you are looking for. I've had a tube for three years and will have it for the rest of my life. The last replacement was the newer button type which I like better than the "hanging tube" type. I use Jevity and other than coffee and chicken noodle soup broth thats about it. Most liquids (and I mean thin liquid) doesn't taste good. I just accepted the idea and have learned to live with it, I still go out with family and friends but just order coffee. I have traveled extensively with it. Some things in life just can't be changed, the sooner you accept the idea the better off you are. I have always taken the thought if thats the worse thats going to happen to me I pretty lucky.

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#149277 - 05/08/12 06:15 PM Re: Feeding Tubes [Re: sandisays]
itsoktoday Offline
Supporting Member (50+ posts)

Registered: 04/30/12
Posts: 60
Loc: California
I have not yet had the J tube put in. I am getting a second opinion by doing aonther Barium Swallow Test and Barium Swallow test through the tube I currently have to see if it is truly a swallowing problem versus a reflux problem that is causing my asperations. I did a little test last weekend eating a bit of food and drinking some liquids. I asperated that evening and had a stomach ache and was ill that night and the following day. I just want to check out all my options before I completely give myself up to having a feeding tube the rest of my life.
Robin
_________________________
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.

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