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6 Years Out and Just Now Getting a PEG tube

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

I had tonsil cancer in 2007, and had the neck disection, chemo, and radiation. I'm now 51 (yay - I made it!) Cancer free still!  However, last summer I started having a sore throat and difficulty swallowing.  Finally started throat dilations in April. Today was my ninth one.  The last was 7 weeks ago, and I have since lost all progress made that time. The doctor went as far as the equipment will go last time.  About 3 weeks ago, I had to have my meds changed (for the 3rd time), because the pills are too big.  Then two weeks ago, I started losing my voice - and it is completely gone now.  Went to a different ENT, and found out the radation scar tissue is messing with my vocal chords, causing my airways to be blocked.  The GI doctor encouraged me today to get a PEG tube.  He has concerned about me choking on my meds, dehydration, and lack of nutrition.  I like eathing - even drinking water - it is just to painful - and a bit risky.

I'm upset (okay - pissed) about the whole thing.  But, the feeding tube...  One positive thing I am already looking forward to is NOT having to swallow my pills.  I really stress over that.  The dilations will still continue, so I can still have ice cream, shakes - the good stuff!

Anyone else out there with these kinds of issues, so many years out?

ANy feeding tube advice. I'm sure they will go over it on Monday, but still anxious.

CivilMatt's picture
CivilMatt
Posts: 3090
Joined: May 2012

Lornal,

Welcome to the H&N forum, I am very sorry to hear your predicament.

I was a short term PEG user (went through two of them), but I know of a few here that have them permanently and maybe they will see your post and chime in.

It is unfortunate turn of events for you and I wish you the best results from your continued work with the problems.  About the most useful information I have is the VitaMix 5000 is great for making smoothies (not meant to be funny).  I picked that up from patricke, one of the H&N members.

Matt

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

We got a whole food blender a few months back in hopes I could use the smoothies to help me out.  However, so many are made of fruit (and that is what my son and husband like), that they irritated my mouth.  (I think all the radiation sores in my mouth started popping up again - a discussion with my radiation oncologist next month.)  But, now I guess I have found a new use for the blender.  Thanks for the reply!  I've never joined a group until I started going downhill this week.

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

who have stayed cancer free for years, but end up with a tube due to radiation damage down the road....I'm thinking right now of Rachael and Hondo.  If they see this post they'll give you some input.  It's the damn pits that the damage doesn't rear it's head for so long!

Did you have a tube when you got treatment?  I suppose the rules for a semi-permanent tube are the same as for a temporary one....keep the skin area clean, and flush the tube before and after using it.  Then there's always the fun of figuring out where to stash it when not in use.... Laughing.

I'm sorry this happened to you...but BRAVO on staying cancer free!

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

I'm sad that I'm here and it has come to this, but very glad I am not alone.

I did not have a tube when I got treatment.  Wish I did.  After the 2nd chemo treatment, I was getting IVs every day (except for Christmas - they weren't open), because I wasn't eating or drinking. 

Thanks for the words of encouragement!

Lorna

 

Ladylacy
Posts: 515
Joined: Apr 2012

My husband relies on his feeding tube for everything.  You will need to buy a pill crusher to crush your pills up before putting in your feeding tube or if they are in a capsule, you open the capsule and put what's inside the capsule in your feeding tube.  Feeding tubes come in different sizes but pills will stop them up if you don't crush them and put them in water.  And you can't, which I'm sure you know, crush time release pills.  You can also get a lot of your medication, more expensive we found, in liquid form.  

As far as using a blender for food to put in your feeding tube, we were told not to and to be honest his feeding tube is very narrow and we would be afraid to.  A lot of people do use a blender, magic bullet, and blend everything and put it thru their feeding tube.  We, I guess, are just too afraid to do that.  Even the Nutren 1.5 he is on, is diluted with some water before he puts it in his feeding tube.  His choice.  The first feeding tube he had was somewhat larger than this one.  He will be on a feeding tube the rest of his life.

Wishing you the best -- Sharon

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

On monday, I'll find out what I can and can't do.  I do know the GI wants to do this now, while he can still use the feeding tube he wants to.  If I wait to long, it would probably be a smaller one.  Right now I"m splitting most of my meds - and some end up as crumbs when I'm done.  Some I have even cut back the dose (Dr said okay), because taking 4 pills (quarters) is so much harder than halves.  Another I cut out completely (Dr. was okay with that too). 

Anxious, but looking forward to less stress in the morning and evening.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

as previously mentioned.  My capacity is pretty challenged as well.  Having been through rads twice, and reconstructive surgery as well, fibrosis is my enemy too.  No solid food, though I can choke down a bit it isn't worth the hassle.  Liquids are ok.  Pills are a challenge.  Especially one of my meds that has a nasty habit of sticking and burning the devil out of my throat.  I take them with ensure, as its slicker than water and they go down.  At least for now.  I know my future may have a PEG as well.  I've already discussed it with my ENT oncologist.  For now, I just carry on.  Life isn't over just because I can't eat.  BTW, I've gotten good at turning things into soup.  Have blender, will travel.

 

Pat

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

Chocolate milk has been my friend for taking the meds, especially the ones that have been split - it does a good job of covering the taste - as the pills sit in my mouth a couple of minutes before I have the guts to swallow. 

I don't know if the milk is causing more mucos or not, but I did learn a new trick about mucus last week from a speech pathologist.

Club Soda.

Gargle with club soda, and then drink some.  Breaks it up.  I'll be doing it again after I finish my milk.  I have to have "Food or Milk" with the prednisone I took.  I have been weaning my 6 oz of chocolate milk now for 30 minutes.  (Thus, a feeding tube really sounds good right now!)

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Just the other day Phrannie said "I used to live to eat and now I eat to live". Lots of truth to that statement. I had a g-tube during tx and while glad to get rid of it, I did miss it when it came time to swallow pills. Racheal has made great strides in swallowing after a long time.  You might post message her.

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

Got my PEG tube on Monday.  Still getting used to it, but at least got through a "meal" without making a mess last night.

It will be a different way of living, and I'm reluctant to go back into the office - I am aiming for next Wednesday.  (Small office, little privacy)

Figuring out what to do with the tube.  For now, just tucking it into my pants.  A nurse suggested putting tape around it, and then using a safety pin on the tape to attach to clothing.

MIght wear a cammy all the time to keep it from moving around.

Any thoughts?

 

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

I bought a couple of these while I had my PEG. It did the trick.

http://www.exmed.net/p-2003-nu-hope-carefix-fabric-ostomyurology-pouch-support.aspx?DefaultVariantID=20711

Positive thoughts and prayers

"T"

 

 

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

I'm going to try wearing a men's undershirts (sleevless) and cut a hole for the tube, and then use a saftey pin on the tube tag and pin it to the outside of the shirt. (I should see it and remember it is there before taking the shirt off.)

It won't be against my skin, or on the outside of my clothes.  If that doesn't work - or the tube is just too obvious, I will look at the pouch/support.

So far, so good with the tube.   I am going to try to eat one meal a day (using the term "eat" loosely), since I can still swallow.  Last night - a soft boiled egg and chocolate milk.  Tonight was brocolli cheddar soup (put through the Blendec) and chocolate milk.  If I start coughing, i'll cross that food off this list...

I do still need to get the hang of clamp and unclamp - at the right time - made a mess in the kitchen when I was taking some meds.  I hope to have it mastered by the time I go back to the office next Wednesday!

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

They have a built in bra, and are stretchy....they kept my tube up nice and close to my body, and stayed wherever I placed it...they were cheap, too...like $8 or $9....so I bought them in many colors to go with my work clothes.  I've had my tube out for 10 months, and I still wear these little bad boys....so comfortable.

http://www.amazon.com/gp/product/B002WQJYC0/ref=oh_details_o09_s00_i00?ie=UTF8&psc=1

 

DCH21
Posts: 33
Joined: Mar 2013

Just a tip about the peg tube that helped me and you may find usefull.

While you can buy a medical device to wear and store the peg tube in I chose to use an ace bandage and it worked great.

I bought 3 of them so I could rotate out as they were being put in the laundry. (2 buck$ apiece)

My tube was about 10 inches long. I took the end of the tube and pulled it up to form a U where the tube came out. I than took a few wraps around my body with the bandage and used the clips to keep it in place.

You do not have to put a lot of tension on the bandage,just enough to hold it in place. This accomplished a few things. It did not show through my clothes,did not snag on anything and it made sleeping more comfortable.

Give it a try and see what you think. No more worrying about it jiggling around when you walk or having it pop out when tucked into your pants

 

I wish you the best,

 

Dennis

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I was about 7 years passed my last radiation treatment for NPC when I started to have problems swallowing. Then on day I was laying down and started feeling sick, my wife toke me to the ER and found I had gotten pneumonia from aspiration. I been on the PEG for about two years now, it has changed my life some but all in all it has become a blessing. One day while on my compute I seen a clip on one of my jump drives, I removed it and hooked it to my PEG tube and got a strap to go on my neck, man it has become another blessing. Look at it this way PEG is your best friend its helps to do what your body can’t do anymore.

 

God Bless

Hondo

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

Thanks for the message - and Hope.  This whole thing has taken me for a ride.  And then losing my voice at the same time...whew....

I sent my husband to get some more undershirts so I can put holes in them.  I'll try a strap - and decide between pinning and using the strap. 

Do you still use gauze or something around the tube?  I still need to because it is fresh, and still weeping.  (weeped a lot today, so I'll have a nurse friend take a look tomorrow at church if she isn't working.)

One more thing I am grateful for is that I can now take Aleve.  The pills were to big, but they helped the pain in my throat.  For the last month, I have been using liquid vicoden.  Today, I went back to the Aleve - through my tube - and that kept the throat pain under control. 

 

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

 

I use gauze only when necessary or when I have some leakage, other then that the area is normal dry and I just poke a hole through my shirt so it is easy to get to. I also take Aleve every morning with my other pain pill I could not get started with out it, I don’t know what is in it but it sure works and works well. You will have some weeping but if you continue to have a lot you might want to give your doctor a call and let him know. Also very important is to keep the area around the tube cleaned and dry to prevent infection.

 

God Bless

Hondo

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

Had this PEG for a week now.  Is there a breaking in period at the beginning where it leaks all the time?

I now understand - volume is an issue - that DQ sundae probably wasn't a good idea... Probably shouldn't have tried to eat the whole thing (amost made it..)

Anyway - even after my stomach emptied, my meals today have all been leaking - I've changed the dressing 4 times already. 

Will this continue?  Do I need to cut back on the volume.  I'm using Glucerna 1.2.    1.5 cans 4 x day

 

lornal's picture
lornal
Posts: 281
Joined: Sep 2013

I've had it for 10 days now.  I feel better now than I have for months.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Glad to hear to are doing well on the PEG, your body is finally getting enough energy so you are feeling better.

 

Go PEG go

Hondo J

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Lornal:

I used shoelaces to hold the PEG tube.  Go out and buy several cotton shoelaces..... I bought white and black ones.  You want to make yourself a necklace by tying 2 shoelaces together if needed, and looping the shoelace through the little hinge on the tube clasp thingy.  I used one even in the shower, then put on a fresh (dry) one after and let the first one dry out.... I never had any problems.

Also, if you can get an "I D Badge clip" from an office supply store, you can tie the clip to the PEG tube and then clip it your bra, cammi or shirt.

GOOD LUCK,

Ingrid

 

 

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