PEG Removal

Joel4

Well today I hit the fifth week post treatment (35 rads/Cisplatin).

After a rough first couple of weeks, I now haven't used my tube in over a week.  I am scheduled to have the PEG removed Tuesday.  Hard to imagine as dependent as I was on it, even a few weeks ago.  I still drink Ensure as needed, but am getting most calories through eating regular food despite the tastes.  Speaking of tastes, they are slowly coming back.

Have a scope scheduled at the end of the month and then a PET scan on July 3rd.

For those of you at or near the end of treatment, just know that improvements come in leaps and bounds.

Joel

CivilMatt

BIG step

Joel,

You will be on your PEGless journey into your new normal.

Keep getting better.

Matt

Chicklette

Awesome

Joel, that is wonderful news!  It sounds like you are getting a little better every day.

phrannie51

Getting my PEG removed

was freeing for me!!  No more tether....!!  One of my best days and they made me beg to get it out .

p

Joel4

Thanks For....

The responses!  Phrannie - I am hoping the removal of the PEG will be freeing for me too!

I have grown very used to it and it doesn't really get in my way, but psychologically I think it'll be nice to get rid of it!  

MMDowns

Yay! That's great! Anxious to

Yay! That's great! Anxious to hear how it goes! 

Joel4

MMDowns said:

Yay! That's great! Anxious to

Yay! That's great! Anxious to hear how it goes! 

Well the PEG removal went well.  Removal was painless, and I left the bandage on for just over 24 hours.

Was kind of freaked out to remove the bandage so quickly, and the hole is kind of dark and ominous looking, but I have no pain and it seems to be healing nicely.  I resumed normal activities after 24 hours though I have been avoiding heavy lifting.

Have been putting on a band aid after showering and plan on doing so for a total of five days.

Feeling very blessed to have had it removed just weeks after being so depend on it!

Joel

MMDowns

Joel4 said:

Well the PEG removal went well.  Removal was painless, and I left the bandage on for just over 24 hours.

Was kind of freaked out to remove the bandage so quickly, and the hole is kind of dark and ominous looking, but I have no pain and it seems to be healing nicely.  I resumed normal activities after 24 hours though I have been avoiding heavy lifting.

Have been putting on a band aid after showering and plan on doing so for a total of five days.

Feeling very blessed to have had it removed just weeks after being so depend on it!

Joel

That's great!  I am really

That's great!  I am really happy for you.  How was the decision made to remove the tube? Was it based on the fact that you were eating and swallowing?  Just curious because my husband sees his rads oncologist next week.  Well, first he has a CAT scan on the 18th and then meets with him on the 22nd.  I am wondering if they will reccomend the PEG removal.  He has always been able to swallow and his throat was never horribly sore.  He could control the pain with Tylenol and he doens't even take that now.  His deal is that he isn't wild about eating because he knows the food won't taste great.  But, we have talked about starting to eat some soft foods.  Monday will begin the 4th week of recovery.  Continued luck on the foods and the taste!! 

 

 

Joel4

MMDowns said:

That's great!  I am really

That's great!  I am really happy for you.  How was the decision made to remove the tube? Was it based on the fact that you were eating and swallowing?  Just curious because my husband sees his rads oncologist next week.  Well, first he has a CAT scan on the 18th and then meets with him on the 22nd.  I am wondering if they will reccomend the PEG removal.  He has always been able to swallow and his throat was never horribly sore.  He could control the pain with Tylenol and he doens't even take that now.  His deal is that he isn't wild about eating because he knows the food won't taste great.  But, we have talked about starting to eat some soft foods.  Monday will begin the 4th week of recovery.  Continued luck on the foods and the taste!! 

 

 

Transition

I was totally tube reliant just four weeks back.  My speech pathologist told me I needed to start swallowing food (just 2 ounces a sitting six times a day) in order to keep the swallow strong and work all the muscles that go into eating.  Once I begrudgingly started I just started eating more and more by mouth, supplementing with drinking Ensure and protein shakes.

Once I was one week without the tube the Doctors agreed to remove the tube the following week.  They felt that if I could go two weeks without using the tube AND not lose any weight that we could remove it.

Eating still sucks for me because of taste/texture/mild sore throat but it slowly gets better.  Again, if I am not having a good day swallowing food then I drink Ensure or a protwin shake.  Getting used to the tube is a dangerous place to be, the quicker we ditch it the better!

The thing I miss most about the tube is that it takes me forever to eat now (like a little kid who doesn't want to swallow his veggies)...

 

Joel

MMDowns

Joel4 said:

Transition

I was totally tube reliant just four weeks back.  My speech pathologist told me I needed to start swallowing food (just 2 ounces a sitting six times a day) in order to keep the swallow strong and work all the muscles that go into eating.  Once I begrudgingly started I just started eating more and more by mouth, supplementing with drinking Ensure and protein shakes.

Once I was one week without the tube the Doctors agreed to remove the tube the following week.  They felt that if I could go two weeks without using the tube AND not lose any weight that we could remove it.

Eating still sucks for me because of taste/texture/mild sore throat but it slowly gets better.  Again, if I am not having a good day swallowing food then I drink Ensure or a protwin shake.  Getting used to the tube is a dangerous place to be, the quicker we ditch it the better!

The thing I miss most about the tube is that it takes me forever to eat now (like a little kid who doesn't want to swallow his veggies)...

 

Joel

You read my mind! I was

You read my mind! I was thinking that the more used to it he gets the more reliant he is on the PEG. I can already tell he is sort of getting there.  He used to force down at least one Ensure by mouth and now he won't.  He is still eating oatmeal in the a.m. so that helps with the swallowing but that's about it.  He lost another lb as well and that can't happen.  We both agreed that he HAS to try and swallow soft foods, mashed potatoes are on the menu this weekend.   He had an iced tea this weekend and did taste the tea flavor so to me that is a good sign.  Baby steps.  

Thanks for the info!  I appreciate it

 

caregiver wife

Peg removal

Way to go Joel!  Every bite makes the next one easier!  So very happy for you.

A note to MMDowns and others:  I bribed my husbuand with pudding and ice cream.  Anything I could think of for him to try.  He also likes soft eggs, cooked every way.  Also, don't forget the speach therapist.  We were told there were 40 muscles in the neck, and the exercises my husband got were quite easy to do.  We really were amazed.

One last peg tube odd note.  When my husband was having a peg tube replaced, the surgeon said if ever accidentally pulled out, to immediately put it back in.  (I have now done just that a couple of times)  Or to get  to the emergency room as quick as possible.  The opening closes in about an hour he said, quick response can prevent needing a surgical replacement.  It still will require the doctor to check placement.

Crystal