| Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | 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.
| | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | 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.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!! ChristineSCC 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 | | | | Joined: Feb 2009 Posts: 22 Member | Member Joined: Feb 2009 Posts: 22 | 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. | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | 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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