Peg Removal Advice

ian1511

Hi Folks,

I did read through the super thread and have tried to garner as many tips as possible, but I still feel I need some guidance.

I finished radiation on May 25. I have a button feeding tube in place. It's a pain for me, as the tubing is too small and leaks gastric juices. I have to use a combo of Marathon skin protectant and Zinc ointment to protect my skin.

I am itching to get the PEG pulled and REALLY would like your input.

Here is my rationale: I only use the FT to supplement with up to 8 cans of Jevity 1.2 tube feedings a day. My swallowing is at the point where I am actually eating soft textured foods. I am able to drink the Jevity TF orally without difficulty. All I have to do is add some water to thin it out. It takes me about 10 minutes to drink the Jevity. This is much more convenient than having to setup my feeting tube, flush, wash the bag, etc that takes me about 90 minutes instead. Again, I'm also drinking shakes, soups, veggies and fish.

What do you think?

Thanks,

Darren

sweetblood22

IMO you should only get the
IMO you should only get the peg removed with the permission of your medical team, if you do not use it at all for at least one month, if not two months and you do not loose any weight. If you need to gain weight, then you should wait until you haven't used the peg at all for at least a couple months and you are gaining and not just maintaining.

That's just my two cents.

ratface

sweetblood22 said:

IMO you should only get the
IMO you should only get the peg removed with the permission of your medical team, if you do not use it at all for at least one month, if not two months and you do not loose any weight. If you need to gain weight, then you should wait until you haven't used the peg at all for at least a couple months and you are gaining and not just maintaining.

That's just my two cents.

I'll disagree
because it sounds like psychologically you are ready to have that sucker out. You sometimes cannot begin to get better emotionally until you get rid of that damn peg. It's a crutch sometimes that impedes walking forward. As long as you are so willing to go for it, then go for it. Good luck with your decision. I went in the opposite direction and waited until my 9 month scans were good always thinking the cancer was comming back. I don't think that is healthy either. I think you are progressing better in the emotional/psychological/ department than I did so keep the momentum going. Again, two more cents of internet advice.

sweetblood22

ratface said:

I'll disagree
because it sounds like psychologically you are ready to have that sucker out. You sometimes cannot begin to get better emotionally until you get rid of that damn peg. It's a crutch sometimes that impedes walking forward. As long as you are so willing to go for it, then go for it. Good luck with your decision. I went in the opposite direction and waited until my 9 month scans were good always thinking the cancer was comming back. I don't think that is healthy either. I think you are progressing better in the emotional/psychological/ department than I did so keep the momentum going. Again, two more cents of internet advice.

Lol
Well, that makes it 1:1. I do understand your point, Rick. Not sure I agree, but it has a lot of merit. Sometimes it is that emotional switch that we need that gets us up and out of that hole. Getting that thing out is like the first step to getting normalcy back.

Pam M

What Time Is It?
Time to ask your doc if they're ready to pull that tube (in my opinion).

Personally, If I were in your shoes, and felt ready to be PEGless, I would (with doc's approval) quit using it NOW - and by quit, I mean use it for only water - starting now. If I had to drink some Jevity to meet my caloric goal, so be it. This way, you could tell your doc "my weight is steady, and it's been some time since my last tube feeding". You really seem motivated to be de-pegged. Having said that, you do want to be sure that you are able to maintain your weight with no tube feedings. I'm trying to recall how long I'd been off feedings when my tube was removed - failing at it, but it'd been over a month. I was eating (and drinking) all calories by mouth - some days with Enterex (like Ensure, but sugar-free) "assists". Please be sure that you are quite prepared to get in sufficient calories before pressing doc to remove the tube - early post-treatment is no time to be losing weight.

greg from pa

I would take it out.In my
I would take it out.In my case I had a "nutritionist" try to manipulate with the damn thing.At one point when I was comfortable using it she told me I better start eating and gain weight or "they" would take it out,6weeks later she told me they would not take it out until I gained weight. At one of my ENT visits I told my doc about this and he yanked it,no big deal,at that point I could down a can of jevity in 3 or 4 big gulps. My point is this,as cancer survivors almost no one likes being treated as a child. and yes getting that tube out did alot for me,in terms of getting back to being Greg again. Greg

ian1511

You All Make Sense
I'm glad to hear both sides of the coin. Thank you. The radiation oncology department is of the opinion that the tube should stay in until I can take in orally to gain or maintain weight. I agree with the comments on emotional readiness, cause I'm ready. I have also been a fan of prudence in my life (unfortunately, she does not visit very often). As such, I think it prudent to do oral intake for at least a month, while doing a daily flush on the PEG. As I do this, I'm sure I'll continue to progress with a greater variety of oral intake. If I can do this, I'll bring up the subject to my radiation oncologist during my return to work follow up. My target date for work is July 25. Thanks, Darren

sweetblood22

ian1511 said:

You All Make Sense
I'm glad to hear both sides of the coin. Thank you. The radiation oncology department is of the opinion that the tube should stay in until I can take in orally to gain or maintain weight. I agree with the comments on emotional readiness, cause I'm ready. I have also been a fan of prudence in my life (unfortunately, she does not visit very often). As such, I think it prudent to do oral intake for at least a month, while doing a daily flush on the PEG. As I do this, I'm sure I'll continue to progress with a greater variety of oral intake. If I can do this, I'll bring up the subject to my radiation oncologist during my return to work follow up. My target date for work is July 25. Thanks, Darren

    ♩♪♫♬ Dear Prudence... ♬♫♪♩
Lol. I was way emotionally ready way before I finally got my tube out after 18 months. However, my body refused to cooperate. All the want and emotionally readiness could not surmount the huge physical realities of me needing that tube. Having the stricture, my mouth and tongue still burning, and the need for a tremendous amount of calories just not to loose more weight. The spirit was willing, but the body was weak.

Having a target date and a goal to remove your tube is also an excellent idea. Keep track of your calories and nutrtion and make it count, and you will also feel better as more real foods phase out the canned stuff. If you plan on going back to work, that will further tax your body, and may require you to need more calories, and more nutrition. I would want to know that I could work and maintain my weight and calorie and nutrition requirements.

I remember being pretty scared when I pulled mine out, as I still had some issues and I was only about 94 or 97 pounds when I had it taken out. I have not weighed myself lately, but I think I'm around 110-112. You will be able to do it, too! Sure can be a lesson in patience tho, and I tend to be very prudent. Sometimes overly so. I am the what if- what if- what if kinda girl.

buzz99

Pull that PEG?
My advice to you would be consult with your medical team. Buzz has not used his PEG since March but we have been advised to keep it until the issue of abnormal PET's is resolved. He will be undergoing some biopsies so until we are given the all clear we are keeping the PEG. Your PEG should not be leaking at all. Buzz's first one did leak and it had to be changed. No problems with leakage since. I guess if you keep insisting, they will take it out but that may not be in your best interest. Karen

Tanager75

Good patient
I hated the tube. I was told it was best to maintain weight for 2 months, 1 minimum (because i complained so much). I held my nose and started downing liquid. Yuk!! Being a good patient I did drink and eat everything for a month even though it was dry and tasted horrible. It hurt so bad having it put in, I didnt want to risk having it reinstalled (if that is a word). SO... you have lots of different ideas and experiences.

mark

zepfreak

PEG OUT
coincidentilly, my Dr. told me this week that I could get mine out. I have an appt for next week. Her criteria was I haven't used mine for nutrition for a month, and my weight is stable for 2 weeks and near my pre-treatment level. I know it's agravating, but recovery is a long process and i believe in the better safe than sorry theory. Plus, my meeting with Dr was after my 2 month CT scan, which came back clean. Good luck and stay positive!!

jkinobay

zepfreak said:

PEG OUT
coincidentilly, my Dr. told me this week that I could get mine out. I have an appt for next week. Her criteria was I haven't used mine for nutrition for a month, and my weight is stable for 2 weeks and near my pre-treatment level. I know it's agravating, but recovery is a long process and i believe in the better safe than sorry theory. Plus, my meeting with Dr was after my 2 month CT scan, which came back clean. Good luck and stay positive!!

One additional comment
All good advice here but you need to keep one other thing in mind. Once the PEG is removed your GI Doc will likely not want to or be able to re-install for 30-60 days. That is another reason they like to be absolutely sure you have turned the corner before yanking it. And, by the way, that is exactly how mine was removed. Doc put his first two fingers on either side with the tube in the "Y" and told me he would pull on count of 3.............of course he pulled on count of 2.............no more discomfort than a bee sting and only lasted a few seconds. 24 hr. later it had healed over completely. So not a big deal at all.

Good luck to you..............and get it out as soon as everyone is sure it's time. JK

ian1511

UPDATE
OK, some may call me impetuous, but I got the OK from rad/onc to get my PEG pulled. I called my surgeon today, and he will do it for me tomorrow morning at 8 AM (it helps to work for the overall practice). I have not been using the PEG since I posted this topic, and really only once a day before I posted for a couple of weeks, just to use up the TF formula.

I have really been doing very well in terms of taste and swallowing. I gave myself a good test yesterday......a Chinese buffet. I know, I know, bad places to eat, etc, for all kinds of reasons, but it was the easiest way for me to assess swallowing and taste ability. I was able to swallow the chicken, beef, and pork in any of the dishes, even without much sauce. I was able to eat the rice noodles without any difficulties. I was even able to eat warmer foods, which I could not before. That sealed the deal for the radiation oncologist and for me. I was able to taste everything. The intensity of the taste being about 60-70%, but more than enough to enjoy the food.

PS, I was sooooooooooo grateful as I chewed the food. I gave thanks constantly for both the swallowing and the taste. I don't want to take anything for granted again, if I am conscious of it.

sweetblood22

ian1511 said:

UPDATE
OK, some may call me impetuous, but I got the OK from rad/onc to get my PEG pulled. I called my surgeon today, and he will do it for me tomorrow morning at 8 AM (it helps to work for the overall practice). I have not been using the PEG since I posted this topic, and really only once a day before I posted for a couple of weeks, just to use up the TF formula.

I have really been doing very well in terms of taste and swallowing. I gave myself a good test yesterday......a Chinese buffet. I know, I know, bad places to eat, etc, for all kinds of reasons, but it was the easiest way for me to assess swallowing and taste ability. I was able to swallow the chicken, beef, and pork in any of the dishes, even without much sauce. I was able to eat the rice noodles without any difficulties. I was even able to eat warmer foods, which I could not before. That sealed the deal for the radiation oncologist and for me. I was able to taste everything. The intensity of the taste being about 60-70%, but more than enough to enjoy the food.

PS, I was sooooooooooo grateful as I chewed the food. I gave thanks constantly for both the swallowing and the taste. I don't want to take anything for granted again, if I am conscious of it.

Congrats in the first Chinese Buffet since ending treatment.
It only took me two years past rads to be able to eat at the Chinese buffet. Lol. You're miles ahead of where I was.

Isn't it amazing how you will never take eating or swallowing for granted again? Good luck with the tube removal. Make sure you keep your weight up and get those calories in, or I will nag, nag, nag you!

ian1511

sweetblood22 said:

Congrats in the first Chinese Buffet since ending treatment.
It only took me two years past rads to be able to eat at the Chinese buffet. Lol. You're miles ahead of where I was.

Isn't it amazing how you will never take eating or swallowing for granted again? Good luck with the tube removal. Make sure you keep your weight up and get those calories in, or I will nag, nag, nag you!

Love agressive, I mean...
assertive women D. I intend to stick around. For the price of admission, I don't intend to leave the club anytime soon. Please nag me if I report loss of calories. Somehow, I fear the opposite happening, although the whole shake, protein, fruit and frequent feeding regimen has open my mind to other ways of meeting my caloric requirements rather than just depending on just cooked food.

I'm just going into anxiety over the removal of the PEG tomorrow morning. I'm just going to take a couple of Vicodin before the procedure. I have a few 15 mg ER morphines left, but they are ERs. The kind of tube they put into me, the BARD kind has a hard button that is 3 times the diameter of the stoma. Yikes! Darren

sweetblood22

ian1511 said:

Love agressive, I mean...
assertive women D. I intend to stick around. For the price of admission, I don't intend to leave the club anytime soon. Please nag me if I report loss of calories. Somehow, I fear the opposite happening, although the whole shake, protein, fruit and frequent feeding regimen has open my mind to other ways of meeting my caloric requirements rather than just depending on just cooked food.

I'm just going into anxiety over the removal of the PEG tomorrow morning. I'm just going to take a couple of Vicodin before the procedure. I have a few 15 mg ER morphines left, but they are ERs. The kind of tube they put into me, the BARD kind has a hard button that is 3 times the diameter of the stoma. Yikes! Darren

Oh, why was I thinking you
Oh, why was I thinking you had a mic-key button like mine? That has a balloon, though it did sting coming out. Just for a minute or less. I get at least half my calories from smoothies, and liquids vs cooked/normal food. I just bought a magazine at the store for inspiration, 125 best blender recipes. When you drink them at least twice a day, you need some variety. I am at that point. Lol

KareGiver

sweetblood22 said:

Oh, why was I thinking you
Oh, why was I thinking you had a mic-key button like mine? That has a balloon, though it did sting coming out. Just for a minute or less. I get at least half my calories from smoothies, and liquids vs cooked/normal food. I just bought a magazine at the store for inspiration, 125 best blender recipes. When you drink them at least twice a day, you need some variety. I am at that point. Lol

Bye bye PEG...
My husband has "her" removed next week and is SO ready emotionally and, fortunately, physically. Sounds like you are too. Hopefully this is a leap in the journey!

ian1511

PEG is gone!
The surgeon yanked it out this morning. There was an audible pop and transient pain. It took only a couple of seconds. There was oozing from my new dimple, just north of my naval. The pain then subsided.

I was a different person walking out of the surgeon's office. I just can't tell you how good I felt with that tube gone. My friend and I went to IHOP after the procedure to celebrate and I ate about 3/4 of my spinach/mushroom omelet with fresh fruit on the side instead of pancakes. Yummy!

As soon as the seeping stops, I'm going to go back to one of my favorite haunts: the driving range. I am now reminded why I went through all the brutality of treatment....LIFE!

Darren

KareGiver

ian1511 said:

PEG is gone!
The surgeon yanked it out this morning. There was an audible pop and transient pain. It took only a couple of seconds. There was oozing from my new dimple, just north of my naval. The pain then subsided.

I was a different person walking out of the surgeon's office. I just can't tell you how good I felt with that tube gone. My friend and I went to IHOP after the procedure to celebrate and I ate about 3/4 of my spinach/mushroom omelet with fresh fruit on the side instead of pancakes. Yummy!

As soon as the seeping stops, I'm going to go back to one of my favorite haunts: the driving range. I am now reminded why I went through all the brutality of treatment....LIFE!

Darren

Excellent!
Great news...I will definitely read your post to my husband. Take care!

sweetblood22

KareGiver said:

Excellent!
Great news...I will definitely read your post to my husband. Take care!

Welcome to the second belly button club!
You sure don't have to tell me how good it felt with that thing not stuck in my guts! Awesome!!!!!! It was so nice to bend over with out feeling gut stabbing pain, and you can sleep on your belly again soon. Nice idea to go IHOP! We don't have any near here. Enjoy that peg-less feeling.