#80543 09-16-2008 08:53 PM | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | had to go in today because at the 5 day mark my peg tube site was MORe sore not better and was oozing when it had not been before, so I called in to them and they wanted me in asap,
they said a slight infection had started so they were giving me strong meds to nip it quick.
one of the docs mentioned they may do a contrast study to see if tube was still in the stomach ... would there be a way i could tell if it had gone out of there or not or is xray with contrast the only way to tell? the seconde doc said no need to worry right nwow because i am not even using it yet but making me wonder if i should use it before they check this???
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Rita,
The infection stinks! I had one as well. Lots of pain and gobs of oozing. If you're anything like me, the oozing will continue for a couple of days after starting the antibiotics, but it will clear and the site will be much less 'owie.'
Have you been flushing the PEG with plain water? Can you spin it around or move it in and out? Mine had come out of my stomach and lodged in my abdominal wall - although no one speculated if that had anything to do with the infection. It hurt when I flushed it and was unbelievably painful if it got moved around but it was still confirmed with a CT scan before it got removed.
Hang in there!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Aug 2008 Posts: 100 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 100 | Hello Rita, must be the season for PEG infections. My wife had hers placed on 9/4 and it became very sore over this past weekend. She started antibiotics yesterday instead of her scheduled start of radiation/chemo. They had mentioned doing an ultrasound but did not do one before sending her home with Augmentin and Bactrim (while in the hospital they gave her an IV with Zosyn). She did not have much oozing until they started trying to loosen up the fitting. She goes back in tomorrow for a follow up and am hoping they do some type of a scan because we are using the PEG for water and the meds but had to stop using it for feeding.
Margaret or Rita, did/do you have an area on the stomach above the PEG that is real hard(maybe an inch above the PEG site). Just wondering if that could be a sign of it not being in the right place, was that a symptom you saw when your PEG was lodged in your abdominal wall?
Thanks, and good luck getting your infection cleared up and starting treatment.
Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
| | | | | 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 |
Rita:
Heres a tip that may help. When I first got my tube, I would put neosporin around the site and cover it with a gauze pad then tape it so it didnt fall off. The gauze pads were made for things like the peg tube cuz they have a cut and a small hole in the middle. Ask your nurses for them, they will give you some. Also my hospital sent a visiting nurse to help me along with the peg, maybe yours has that program too. Ive had my peg tube for 14 months and all the docs who see it say its one of the best kept ones they have ever seen.
Hope you feel better soon.
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: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Thanks all.
CHRISTINE - I am using the IV sponge type gauze you speak of with the slits in it. I place two of these on at each cleaning (2 x a day) and then place tape on them to hold in place.
TOM - They told me one way to tell if it is in the right place is to use the big syringe you put stuff in with, to see if you get stuff out with it too ... they tried this at hospital and it did not work, which is why they wondered - well, last night i accidently answered it LOL .. was getting ready to flush it with water and let go of the tube where i crimped it and well yes, tummy stuff tried coming out so it must be in the right place ... and i quickly flushed it to get rid of that nasty looking stuff LOL
Hard place at top of it ... yeah kinda .. and I think that is where it meets on inside. Just above the bumper I have a small hard spot and that is where it was so tender.
I am just hoping him loosening the bumper a tad like he did does not cause a prob. He said it shouldn't (I do not like that word with docs I like it WILL or it WON"T lol) ... and thought it would help it to heal faster .... so I hope he didn't do a no no.
MARGARET - Yeah, I can turn the bumper, and do daily when I clean it, as this is what they suggested when in the hospital but it doesn't come in and out at all and now, as i said above, after what happened last night it must be in the right place. (thank God)
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Yikes! I had a CT scan of my stomach a few weeks ago because my stomach would swell around my feeding tube site and it hurt like crazy. I actually never got the results from it but the pain went away so I didn't worry about it and it hasn't bothered me since then of course. I found out shortly there after that I would be getting it out anyway so I didn't press the issue.
I hope you start feeling better soon!!!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | How your PEG reacts to twisting will be up to the PEG itself -- My first PEG was short, fat and straight and I found I could make it work better by moving it around (in/out or twisting) a little to make it flow better -- My second PEG (placed by Xray, with only a local anesthetic, BTW) is long, thin and has curves in it, plus no bumper on the end, so moving it doesn't do much.
The nurse showed me how to make the 'special' pads by just cutting into the gauze pad on the side. I clean it with a hydrogen peroxide rinse (Q-tip) and then apply anti-bacterial ointment with second Q-tip.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 |
When you first get the tube its so uncomfortable. Eventually it will get easier. Ask for help by having a visiting nurse come check it weekly. Use the neosporin with the pads and ask your doc to loosen it a little.
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: Mar 2009 Posts: 10 Member | | Member
Joined: Mar 2009 Posts: 10 | Christine, you sound like myself. When I got my first tube, I had a nurse come over 3 days in a row to make sure I knew how to use it and how to take care of it. She gave me the same instructions that you were using, Neosporin around the site, gauze around the base of the tube, under the device that kept the tube from going into the stomach further, and then she had me tape the part where the syringe went in, to my chest and above the hole in the stomach. I had never experienced a spill that I myself, didn't create. Like when the syringe came out of the spout while feeding.
A nurse acidentally pulled the tube out at my last hospital visit but they replaced it with a Mic-Key low profile tube. It is only 24 French in diameter but it works well. The tube I use now would fit inside the other tube. I never used the syringe with the plunger before now, but now I use it all the time. One thing for sure, you won't get a cheese burger through this one!
I have found that attitude can make a world of difference.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez Gnoled, take the cheese off and go for that Black Angus burger no pickle or onion but maybe mayonnaise or mustard. Oh man , how I wish.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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