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feeding tube

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

I was wondering if anyone has/had a problem with the hole in their stomach where the feeding tube soes into the stomach stinking? My tube has an awful smell that never goes away. It is and always has drained and I believe that is the probelm but I've seen the doctor about it 2 times and he says that is nothing wrong. I keep a bandage on it and change it regularly. If anyone has a suggestion to keep it from smelling, I'd gladly appreciate all suggestions. Thank you all in advance.
Debbie

ln
Posts: 2
Joined: Jan 2010

Did your doctor do a blood test to make sure you don't have an infection? Also, are you cleaning it regularly? I don't keep mine covered by a bandage.

Our situations may be different. I am an 8 year survivor, and only have been usin the feeding tube for the last 5 months due to swallowing problems from that have occurred as long-term effects of the radiation. I did, however,have a tube after the operation, and I don't remember any odors.

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Dear All, thank you all so much for the feedback. My doctor has never done a blood test but has always said this is normal. I've seen him for this 4 times. Like Chef, I just clean it with soap and water. I also keep guaze on it. I will try cleaning it more thru the day to see if that helps. I may also pick up some otc orintment. Thank you all for your help.
God Bless,
Deb

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I have had my tube since late 2005, debbie, the tube implanted during a larger surgery. It helps that my wife is a wound care nurse: while I take care of the 'wound' where my tube goes in, she promotes changes to the plan from time to time and they seem to work.

Incidentally, my tube goes in, from your description, in the same place yours does.

What I have found from the start, debbie, is that my sense of smell has increased by large degrees. I am sure that part of it is that I quit my nasty vices. When I left the hospital after my surgery and recovery (a two-week process), the first thing I noticed beyond the glory of sunshine was the rank odor of nearby construction. I could smell the tar as if it was in the car with us.

It may be that your sense of smell is more acute.

Even so, there is much you can do to address this issue. As the other respondent suggests, it is paramount that you not slack off in wound-care treatment. I would add that yuo must consider this a wound.

I use hydrogen peroxide daily. I also DO apply a non-stick gauze to mine. I use a couple of applications that are designed to mend jock itch and diaper rash respectively. When we switch off of that, we go to the burn sticks (your tissue tends to 'bloom' out of the hole around your tube, and you sometimes want to consider cauterizing that, because it can lure infection), and then to some various patches that include but are not limited to something called Acticoat Flex 3 ('a silver-coated antimicrobial barrier dressing', to quote the front of the little packet, and Allevyn Gentle Border, a silicone gel adhesive).

This is not to endorse those products (which you cannot get on your own anyway, as far as I know) but to suggest that your wound care deserves professional attention that your doctor might not be able to provide.

Ask to see a nurse who specializes in such care if you have not done so.

In the meantime, it is hard to imagine that your doctor would not notice an infection or some other dire cause for the smell, especially since you pointed it out to him or her, but I would stay on top of this, debbie. If you do not have someone to help with wound care, insist on someone, or, at the least, insist on being taught how to care for the wound yourself.

It IS a wound.

Best wishes with this and with your survivorship.

Take care,

Joe

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Boy, did my sense of smell improve during treatment! I've always had an extremely sensitive sniffer anyway, and my sense of smell got so outrageously good it was ridiculous. I could smell things that normal people never would, and it was quite unpleasant. I remember once when my wife was cooking some shrimp for her dinner it damn near drove me out of the house.
Happily, I'm back to normal again. But I agree, anything weird or funky on with the PEG ought to be checked out by a doc or nurse.

--Jim in Delaware

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Thanks so much Joe and all the others who replied. Joe, you're right about my smelling being more keen (b/c I quit smoking). All of you have give me great ideas to work with and I thank you all ! I pray that God will continue to be with each and everyone of you. Please stay strong and believe there is light at the end of the tunnel. There are many people here who are vets and you will be one day tool.
God Bless You All,
Debbie

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi debbiejeane,

I have the same issue everyday and have brought it to the attention of two doctors, both saying the same, keep flushed twice daily and clean the area with soap and water. I had a lot of draining out of the tube down my stomach for the first couple weeks with a lot of pink swollen area where the tube and stomach join. I clean it with Q-tips and peroxide and I am now using Neosporin antibiotic ointment as well after I clean the area.

I recently complained to my doctor about two problems with my PEG, first, I'm allergic to dressing tape and I have numerous open sores all around my PEG area from reacting to the tapes to hold down the dressings, hose and valve assembly. Second, I have difficulty holding down and protecting the long PEG hose and valve assembly. I have about a half inch gap between the base of the tube unit that's supposed to be tight against the skin, but they loosened it to relieve the muscle spasms and cramping I was having after it was placed. It worked, but I have to be extra careful as it wants to grab onto almost everything until I get it covered.

The doctor gave me a few of these really neat, white elastic, "fish net" style circular material that stretches nicely and you can either step into it and pull it up to your stomach or you can bring it down over your head. Once in place around your stomach you just unroll it and the fish net holds the Peg tube nicely in place. I then roll some sanitary cotton around the PEG valve to cushion it so it doesn't poke me. I now use far less tape and I don't worry about catching it on anything.

I hope this helps you, it did me.

God Bless you my dear

Mike

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Mike, others have also mentioned the net. I usually tuck mine itno the pants I'm wearing. The smell seems to have eased up. I got wonderful ideas from here as I knew I would, that's why I love coming to CSN.
Thank you very much, friend.
God Bless you,
Deb

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I always and still do wash with cetaphil soap just the anti bactirial bar you can get at wal mart half the price of a walgreens and such
Id get some soap suds on the tube and slide it in and out and give it a little spin back and forth while in the shower and never had a problem for the year i had my tube .. i didnt put the pads around and tape them just when i first got it for a week or so .. I used the fish net stuff from the doctors as a tube top and that stuff worked great.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I was thinking about you just yesterday wondering how you were doing, hope all is well

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i constantly complain about mine smelling, and the doctors tell me all the time mine looks clean, and great and "looks beautiful". i have noticed i do not smell it as much since i just had a button one put in. this is the third on i have had, and by far the most comfortable. i do not have to wear my fish net stretchy thing any more. i also have less cramping with this one. much better. i just use a drain sponge around it, and it stays on with out any tape.

Ibuild4u
Posts: 5
Joined: Feb 2010

Debbie....I am a caregiver to my Husband who was diagnosed NPC.I have a keen sense of smell,and have found the tube smelling quite often.. I have put together a cleaning kit of a small spray bottle of peroxide,some Q-Tips,a couple of makeup sponges, and a tube of Triple Antibiotic. I placed it in a small tupperware container,and it sits on his bedside.After eating he cleans with the peroxide and dabs on some antibiotic ointment and all is well..I also like the idea of using cetaphil in the shower as one poster mentioned.One thing that our Radiation Oncologist provided for the tube was a Catheter Clip.It slides over the tube and adheres to his stomach area..It is good for normally a month,or until the "stickem" wears off.This allows him to clip off the tube after eating and closing, with no fear of leaking..We have NOTHING else around the tub..Before they suggested this clip, he complained of pain/pulling from the tube entry point.Please know this is NOT the intended use of the clip but it works perfect for us..

Hope this Helps..
Kathy

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Welcome here to CSN, there are a lot of us NPC survivors here, I am a little past 4 ½ years and my friend Kent Cass and a few others are more then a year pass treatment and HAWVET is almost 12 years passed treatment. We are all here for one thing, to help others who are just starting the trip so Please feel free to ask as questions.

Take care

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

Kathy, thank you very much. I knew I'd find some good answers here. This forum is super! I pray all goes well for your husband and you.
God Bless,

Debbie

ratface's picture
ratface
Posts: 1230
Joined: Aug 2009

HGi Debbie

Mine was right below the left pectoral and despite meticulous cleaning smelled like baby spit/throw-up on a regular basis. I imagine it was also related to the supplement I was taking just as infants drink formula we do also. I didn't find this unusual as what is comming out is gastric juice and therefore would smell rather foul. As others have mentioned your sense of smell gets dramatically better. I can smell cigarette smoke several cars over while driving. While out walking I can tell you which houses are drying laundry. I can tell you if a man or woman has just left an elevator without ever seeing them. Keep things clean and you should be fine.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Do they smell like Muzak?

Take care,

Joe

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I am a 12 year tonsil cancer survivor. The problems I'm having now, according to my ENT, are a delayed result from the radiation. I have always had dry mouth but after time you learn to live with it. Within the past 18 months I have had a couple of problems come up that Dr says normally appear around the seven year point. The biggest problem is my ability to swallow has gone down dramatically. Before cancer I was 245lbs, immediatly after treatments ended I was around 150. I was able to get up to around 170lbs and able to maintain that for almost 11 years. Now I am losing weight and Dr says that either I gain weight or I get a feeding tube. Thats easy for him to say but not easy to do. I am taking weight gain 2000 every day but weight still goes down.

What exactly are the pros and cons of a tube. Dr says I can maintain weight but that folks get "lazy" and lose the ability to swallow. He did not mention the possibility of infections, that the tube hangs from your body and must be tucked etc etc etc.

I didn't know all the facts 12 years ago and this time I need to be prepared. He gave me until the end of May to be at 175 and quite frankly I don't know if I can make up that much.

The other problems that have just come up are a paralyzed left vocal cord, total numbness to my lower jaw around my chin, and damage tto the back of my tongue which affects my ability to pronounce certian sounds.

Thanks to all..

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Greend- are you intaking Ensure or Boost, and taking-in the calories? As supplements for weight gain- they do help. I have even stopped using the Ensure, for the sake of my wallet and having to buy another size larger pants! Calories.

I am very interested in your paralyzed left vocal cord. Car accident when I was 13 left the left side of my larynx paralyzed and protruding into my windpipe. That was 1968, and only 3 hospitals in the USA could deal with the issues of a "crushed windpipe at the larynx," then. What has your Oto/ENT told you about your half-paralyzed larynx? I was told there was nothing that could be done to bring my main left-side nerve back. Have you been told the same? See the picture of a hospital with my name underneath- that's the place I went thru 18 Ops when I was a teenager that gave me my voice back, and allowed me to lose the trachea tube: Rush-Presbyterian-St.Luke's in Chicago. Hope to get a reply from you on my questions.

kcass

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I was told the same. The only improvement offered was to strengthen the right vocal cord to give me more volumn. Wish it were better. I am going to the University Of Alabama, Birmingham - The Kirkland Clinic. This is the 5th place I've been and they seem to know what they are talking about.

I lived on Ensure but had to stop since it really constipated me with all the iron. My wife "nags" me all the time to at least drink one Ensure mid-morning and late afternoon.

Denny

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