Feeding tube

Chefdaddy

sweetblood22 said:

different pain
steve, i get that pain every once in a while, too. that one is more like a spasam. seems to happen more to me if i get too hungry. they both hurt.

I had posted on a thread a
I had posted on a thread a few weeks ago about pain from the PEG area and severe muscle cramping. I mentioned it to my chemo doctor and he loosened the part of the PEG that touches your skin and the pain and spasming went away. He told me that some surgeons think they have to be clasped very tight. He told me that one of his patients came in and he couldn't stand upright it was clasped so tightly.

I hope this helps.

Your friend

Mike

Kent Cass

Chefdaddy said:

I had posted on a thread a
I had posted on a thread a few weeks ago about pain from the PEG area and severe muscle cramping. I mentioned it to my chemo doctor and he loosened the part of the PEG that touches your skin and the pain and spasming went away. He told me that some surgeons think they have to be clasped very tight. He told me that one of his patients came in and he couldn't stand upright it was clasped so tightly.

I hope this helps.

Your friend

Mike

Good To Hear
Very good to hear you're doing okay, Steve. Still a bit confused about some of the PEG experiences expressed in this thread, and I ask you to again read my earlier post- just poured the 4.0 formula into the syringe whose tip was placed into the opened top of my PEG tube.

As for my pain in the PEG entry area- I always figured what I had a problem with was the breech in my previously-injured abdominal wall. Could be because of the difference in our Chemo treatment, but the 4.0 formula provided all of my nutrition from the end of week #1-week #8. And, I didn't have a gas problem. There were times when the "sit down" thing didn't happen for a couple days, and I worried about things getting stuck in my intestines, but it all turned-out okay.

Steve, look for a PM from me. I think you're doing great. Keep him in line, Ann- he's a work in progress.

Believe.

kcass

Scambuster

Kent Cass said:

Good To Hear
Very good to hear you're doing okay, Steve. Still a bit confused about some of the PEG experiences expressed in this thread, and I ask you to again read my earlier post- just poured the 4.0 formula into the syringe whose tip was placed into the opened top of my PEG tube.

As for my pain in the PEG entry area- I always figured what I had a problem with was the breech in my previously-injured abdominal wall. Could be because of the difference in our Chemo treatment, but the 4.0 formula provided all of my nutrition from the end of week #1-week #8. And, I didn't have a gas problem. There were times when the "sit down" thing didn't happen for a couple days, and I worried about things getting stuck in my intestines, but it all turned-out okay.

Steve, look for a PM from me. I think you're doing great. Keep him in line, Ann- he's a work in progress.

Believe.

kcass

Bad Pain was gas pressure,
HI Steve, I do now recall the first week or so of PEG life I had some terrible cramp like pain and I thought the tube had dislodged inside. Once it occurred when I was laying down on the table and they had to postpone my session as I was screaming in pain. It turns out it was trapped gas. After that I would just stand next to the bathroom basin and open my tube and valve and let any trapped gas or fluid run into the basin once in a while till I got a handle on it. Not to say this is the cause of your pain but may be worth a try.

Regds
Scambuster

stevenl

Scambuster said:

Bad Pain was gas pressure,
HI Steve, I do now recall the first week or so of PEG life I had some terrible cramp like pain and I thought the tube had dislodged inside. Once it occurred when I was laying down on the table and they had to postpone my session as I was screaming in pain. It turns out it was trapped gas. After that I would just stand next to the bathroom basin and open my tube and valve and let any trapped gas or fluid run into the basin once in a while till I got a handle on it. Not to say this is the cause of your pain but may be worth a try.

Regds
Scambuster

Pain
Hey scambuster,
Yea it's strange. And it is very strange that you just posted this. I just 5 minutes ago did that and it worked!!! Relieved the pain a great deal. Amazing!! and just like everybody said I am an old hand at this now. Nothing to it. Finally, I am glad the tube is there in case I need it. Doesn't give me the creeps anymore. I have also found that i have a lesser pain when I am hungry. But the gas thing would almost double me over. Thanks for your post, all of you, to help me overcome this stupid fear.

Best to all,
Scardy cat

sweetblood22

stevenl said:

Pain
Hey scambuster,
Yea it's strange. And it is very strange that you just posted this. I just 5 minutes ago did that and it worked!!! Relieved the pain a great deal. Amazing!! and just like everybody said I am an old hand at this now. Nothing to it. Finally, I am glad the tube is there in case I need it. Doesn't give me the creeps anymore. I have also found that i have a lesser pain when I am hungry. But the gas thing would almost double me over. Thanks for your post, all of you, to help me overcome this stupid fear.

Best to all,
Scardy cat

great. now how do i do that
great. now how do i do that with my button?

stevenl

sweetblood22 said:

great. now how do i do that
great. now how do i do that with my button?

Button
Hi sweet,

I wish I could tell you. I, being afraid of the tube sticking out of my gut, inquired about a button or mushroom type feeding tube. got nowhere fast on that one. Don't really even know what one looks like. But I will bet some body has that type and can help you. Sorry sweetblood. But don't worry we'll get you an answer.

Bless Ya,
Steve

sweetblood22

stevenl said:

Button
Hi sweet,

I wish I could tell you. I, being afraid of the tube sticking out of my gut, inquired about a button or mushroom type feeding tube. got nowhere fast on that one. Don't really even know what one looks like. But I will bet some body has that type and can help you. Sorry sweetblood. But don't worry we'll get you an answer.

Bless Ya,
Steve

steve, this is my third type
steve, this is my third type of peg. i started out with one with the long hose sicking out. then went to a bit smaller one that they put in after they did my first dillatation. they went thru my peg to do tthe first stretch. that hose really hurt and was uncomfortable. had a round piece of plastic which cut and hurt my skin. have to change every three months. this button one is best for comfort. have to change end of march. owie.

MaryRC

sweetblood22 said:

steve, this is my third type
steve, this is my third type of peg. i started out with one with the long hose sicking out. then went to a bit smaller one that they put in after they did my first dillatation. they went thru my peg to do tthe first stretch. that hose really hurt and was uncomfortable. had a round piece of plastic which cut and hurt my skin. have to change every three months. this button one is best for comfort. have to change end of march. owie.

sweetblood
The girl I take care of... she has the Mickey button. Whenever I would hook the tubing up to her button gas would come out, or sometimes I would just pinch the tubing off and on and her gas would come out. Also she is always digging at her button, moving it back and forth and gas comes swishing out around it. I am going over to see her today, I will ask her mom ( who is an expert at mickey buttons) what else they do.
Mary

Kent Cass

MaryRC said:

sweetblood
The girl I take care of... she has the Mickey button. Whenever I would hook the tubing up to her button gas would come out, or sometimes I would just pinch the tubing off and on and her gas would come out. Also she is always digging at her button, moving it back and forth and gas comes swishing out around it. I am going over to see her today, I will ask her mom ( who is an expert at mickey buttons) what else they do.
Mary

the button
Actually, the PEG button is what is holding the tube in place INSIDE the stomach. That which is around the opening in your stomach wall is shaped like a button- with holes that allow fluid into the stomach with PEG tube feedings. Has nothing to do with the outside-the-body. The plastic attachments pressed into/with the PEG tubing on the outside is a bit bulky, but it has all held in place good enough for me in my 13-months of ongoing PEG history. Paper tape holding the gauze around the PEG entrace area, and more paper tape holding the top attachments in place above that gauze. OF NOTE: the outer plastic flap on the top of the PEG can tear- mine is torn.

Sweetblood- are you sure you don't have the Balloon tube? I talked at length with my Surgeon about the PEGs. The balloons are the ones that get changed often.

fyi

kcass

sweetblood22

Kent Cass said:

the button
Actually, the PEG button is what is holding the tube in place INSIDE the stomach. That which is around the opening in your stomach wall is shaped like a button- with holes that allow fluid into the stomach with PEG tube feedings. Has nothing to do with the outside-the-body. The plastic attachments pressed into/with the PEG tubing on the outside is a bit bulky, but it has all held in place good enough for me in my 13-months of ongoing PEG history. Paper tape holding the gauze around the PEG entrace area, and more paper tape holding the top attachments in place above that gauze. OF NOTE: the outer plastic flap on the top of the PEG can tear- mine is torn.

Sweetblood- are you sure you don't have the Balloon tube? I talked at length with my Surgeon about the PEGs. The balloons are the ones that get changed often.

fyi

kcass

kent sounds like i had the
kent sounds like i had the peg originally, now i have a balloon tube.

Kent Cass

sweetblood22 said:

kent sounds like i had the
kent sounds like i had the peg originally, now i have a balloon tube.

tubing
Sweetblood- my Surgeon told me a lady under his care gets her's replaced a couple times a year. I didn't ask him why she has her tubing. Do know I will not get such. My PEG is practical enough for me, and the experience of removal is not one I'm looking forward to (hoping for such after my next PS in April).

To all- the feeding tube thing is very simple: it is tubing in which one pours liquid nutrition- like a mouth with plastic tubing as the esophagus emptying directly into the stomach. Not familiar with the gravity-type variety, of which others have spoken of. With mine, there's an attachment section at the end of the tubing, with a flap/top that has a ball underneath to hold the seal for times other than the feedings. All I had to do for the 7 weeks was lift off the top, put the syringe tube's tip into the opening, and then slowly pour the formula into the syringe tube.

And, again, I would advise any/all to inquire about the 4.0 formula, rather than the typical 1.5. With me, the 1.5 would have meant 7 feedings/day, instead of the lesser 4/day that was needed with the more concentrated 4.0. I was told the only problem with the 4.0 was that some people could not tolerate it, due to "regularity." The 4.0 worked for me.

fyi

kcass

D Lewis

Kent Cass said:

tubing
Sweetblood- my Surgeon told me a lady under his care gets her's replaced a couple times a year. I didn't ask him why she has her tubing. Do know I will not get such. My PEG is practical enough for me, and the experience of removal is not one I'm looking forward to (hoping for such after my next PS in April).

To all- the feeding tube thing is very simple: it is tubing in which one pours liquid nutrition- like a mouth with plastic tubing as the esophagus emptying directly into the stomach. Not familiar with the gravity-type variety, of which others have spoken of. With mine, there's an attachment section at the end of the tubing, with a flap/top that has a ball underneath to hold the seal for times other than the feedings. All I had to do for the 7 weeks was lift off the top, put the syringe tube's tip into the opening, and then slowly pour the formula into the syringe tube.

And, again, I would advise any/all to inquire about the 4.0 formula, rather than the typical 1.5. With me, the 1.5 would have meant 7 feedings/day, instead of the lesser 4/day that was needed with the more concentrated 4.0. I was told the only problem with the 4.0 was that some people could not tolerate it, due to "regularity." The 4.0 worked for me.

fyi

kcass

Thanks, Kent
My feeding-tube installation surgery will probably be first thing next week. Thanks for your calming words and sage advice. I can do this.

Deb L.

Kent Cass

D Lewis said:

Thanks, Kent
My feeding-tube installation surgery will probably be first thing next week. Thanks for your calming words and sage advice. I can do this.

Deb L.

Deb and all
As others have testified- the tube is very acceptable. In the big picture: it can be a very necessary inconvenience. Know you can do this, Deb. It is so very critical that one MUST get the nutrition into the body for that body to fight the best fight possible, and the tube makes that getting of nutrition so very easy to do- it really does. When the mouth and throat don't want to function in an eating kinda way- hey, bypass them and put the nutrition directly into the stomach. That simple. Just takes a little getting used-to.

Believe.

kcass

sweetblood22

visual aids
i am going to post two of the three tubes that i have had. the mickey button has been by far the best. if you click on my name and go to my expressions page it will be there momentarily.

stevenl

Kent Cass said:

Deb and all
As others have testified- the tube is very acceptable. In the big picture: it can be a very necessary inconvenience. Know you can do this, Deb. It is so very critical that one MUST get the nutrition into the body for that body to fight the best fight possible, and the tube makes that getting of nutrition so very easy to do- it really does. When the mouth and throat don't want to function in an eating kinda way- hey, bypass them and put the nutrition directly into the stomach. That simple. Just takes a little getting used-to.

Believe.

kcass

assistance
Hi all,
I wanted to thank everyone for the responses to this post. As you all may or may not know, I have only one doctor on my team of doctors that I am not satisfied with. It is this surgeon whom I was referred to and we all just butt heads with some personalities if you will. He did not instruct me, and when asked for assistance offered none. Actually, Kent and the many others who posted to this thread helped me more than one of my own physicians. The PEG that I had put in is actually called PRG. In essence the same thing, same device just a little less intrusive as it is radiology assisted in it's placement. I.E., smaller incision, smaller tube placed down the throat and such. And yes it did have 3 stitches which I had removed this morning. I researched this and also the different types such as the one sweetblood had mentioned. I requested the PRG. Same coverage through my ins. and less intrusive, I figured why not? Just wanted to thank everyone here for assisting me. As I said it is just part of me now and not bothersome at all.

Thanks to all,
Steve

sweetblood22

stevenl said:

assistance
Hi all,
I wanted to thank everyone for the responses to this post. As you all may or may not know, I have only one doctor on my team of doctors that I am not satisfied with. It is this surgeon whom I was referred to and we all just butt heads with some personalities if you will. He did not instruct me, and when asked for assistance offered none. Actually, Kent and the many others who posted to this thread helped me more than one of my own physicians. The PEG that I had put in is actually called PRG. In essence the same thing, same device just a little less intrusive as it is radiology assisted in it's placement. I.E., smaller incision, smaller tube placed down the throat and such. And yes it did have 3 stitches which I had removed this morning. I researched this and also the different types such as the one sweetblood had mentioned. I requested the PRG. Same coverage through my ins. and less intrusive, I figured why not? Just wanted to thank everyone here for assisting me. As I said it is just part of me now and not bothersome at all.

Thanks to all,
Steve

lol
we were posting @ the same time. see the next post. glad you did your research. glad you are used to it. i thought if i bared my little belly and people could see a whimp like me could deal with it, then they could too.

stevenl

sweetblood22 said:

lol
we were posting @ the same time. see the next post. glad you did your research. glad you are used to it. i thought if i bared my little belly and people could see a whimp like me could deal with it, then they could too.

whimp
Hey sweet,
A wimp eh? I mean I'm 6-2 and I was scared of this thing. Mine looks like your 1st one, but my tube is not as long. Thanks for the pics. I tried very diligently to find just such a pic before I had mine put in so I could just see what it looked like. This, I'm sure will help others.

Blessings,
The Wimp

Glenna M

stevenl said:

whimp
Hey sweet,
A wimp eh? I mean I'm 6-2 and I was scared of this thing. Mine looks like your 1st one, but my tube is not as long. Thanks for the pics. I tried very diligently to find just such a pic before I had mine put in so I could just see what it looked like. This, I'm sure will help others.

Blessings,
The Wimp

Stevel and D Lewis
I had a feeding tube for 5 months during my rads and chemo (mine was the same type in sweetbloods picture with the long tube) and it was a breeze and a life saver. The only thing that bothered me was the surgeon left 18 inches of tubing hanging out of my stomach which I had to coil up and tape to my stomach to keep it out of the way. The surgeon told me when I complained about the length that he could shorten it for me.

I would like to share a tip that soccerfreaks told me when I first got the tube. If you are feeling like you are going to vomit you can open the end of the tube and put the end of the tube over your sink and the expelled liquids will come out of the tube and not your mouth. If you are going to be sick this is the only way to go. I was fortunate during my chemo and only vomited 3 times and was very happy to find that soccerfreaks advice worked :-)

Maybe I am an exception but I had no problems with my tube from the time it was inserted until it was removed. Insertion was painless, cleaning was easy, I just washed around the insertion point (with Dove soap) and rotated the tube around in circles as I was washing it. Patted the area dry with a clean gauze pad, wiped around the hole in my stomach with a q-tip soaked in peroxide, wiped again and put a gauze pad around the hole. I was fortunate that the company that supplied my formula also supplied me with 4x4 gauze pads that were made specifically for feeding tubes, they also supplied the paper tape to hold the gauze pads in place. They also supplied the syringes and all the necessary supplies if I chose to do the gravity feeding, which I chose not to do.

The only problem I had was when I was pouring the formula in I would occasionally cough or sneeze :-( I very quickly learned that if I felt like I was going to do this I would quickly put the plug in the end of the tube!! If not I would have formula all over the place - LOL

Getting the tube removed was one of the happier times in my treatment as it gets to be a bother after a while. It hurt for about 10 seconds when they pulled it out but it sure was nice not to have that tubing hanging out of me anymore.

As I said, I may be the exception, as I had no real problems, smell or pain, and was able to get the nutrition my body needed to make it through treatments. I am only 5" 1' and weighed 118 when I was diagnosed and dropped down to 98 pounds before I started on the tube feedings. I never would have survived without the tube. My biggest problem now seems to be gaining the weight back - have you ever heard a woman complain about not gaining weight - LOL

So, to everyone getting the tube, it CAN be done. It has to be done as you definitely need to keep your nutritional intake to the max. Just think positive thoughts as many of us have been through the same procedure and we are all survivors.

Thanks Sweetblood for the picture on the Expression page as I was never very good at describing my feeding tube and you have now made that unnecessary ;-)

Good luck to everyone, stay strong and keep smiling,
Glenna

sweetblood22

Glenna M said:

Stevel and D Lewis
I had a feeding tube for 5 months during my rads and chemo (mine was the same type in sweetbloods picture with the long tube) and it was a breeze and a life saver. The only thing that bothered me was the surgeon left 18 inches of tubing hanging out of my stomach which I had to coil up and tape to my stomach to keep it out of the way. The surgeon told me when I complained about the length that he could shorten it for me.

I would like to share a tip that soccerfreaks told me when I first got the tube. If you are feeling like you are going to vomit you can open the end of the tube and put the end of the tube over your sink and the expelled liquids will come out of the tube and not your mouth. If you are going to be sick this is the only way to go. I was fortunate during my chemo and only vomited 3 times and was very happy to find that soccerfreaks advice worked :-)

Maybe I am an exception but I had no problems with my tube from the time it was inserted until it was removed. Insertion was painless, cleaning was easy, I just washed around the insertion point (with Dove soap) and rotated the tube around in circles as I was washing it. Patted the area dry with a clean gauze pad, wiped around the hole in my stomach with a q-tip soaked in peroxide, wiped again and put a gauze pad around the hole. I was fortunate that the company that supplied my formula also supplied me with 4x4 gauze pads that were made specifically for feeding tubes, they also supplied the paper tape to hold the gauze pads in place. They also supplied the syringes and all the necessary supplies if I chose to do the gravity feeding, which I chose not to do.

The only problem I had was when I was pouring the formula in I would occasionally cough or sneeze :-( I very quickly learned that if I felt like I was going to do this I would quickly put the plug in the end of the tube!! If not I would have formula all over the place - LOL

Getting the tube removed was one of the happier times in my treatment as it gets to be a bother after a while. It hurt for about 10 seconds when they pulled it out but it sure was nice not to have that tubing hanging out of me anymore.

As I said, I may be the exception, as I had no real problems, smell or pain, and was able to get the nutrition my body needed to make it through treatments. I am only 5" 1' and weighed 118 when I was diagnosed and dropped down to 98 pounds before I started on the tube feedings. I never would have survived without the tube. My biggest problem now seems to be gaining the weight back - have you ever heard a woman complain about not gaining weight - LOL

So, to everyone getting the tube, it CAN be done. It has to be done as you definitely need to keep your nutritional intake to the max. Just think positive thoughts as many of us have been through the same procedure and we are all survivors.

Thanks Sweetblood for the picture on the Expression page as I was never very good at describing my feeding tube and you have now made that unnecessary ;-)

Good luck to everyone, stay strong and keep smiling,
Glenna

Steve and Glenna
Maybe I should have left out the whimp comment? I am not implying anyone other than me was whimpy. I said no to the docs in the begining cause I was scared, thank God I changed my mind because I would never have made it. I just feel whimpy in comparison to others here, but maybe I should not feel that way, we are all unique. Sometimes I forget that I also have the added complication of the Fanconis Anemia. My organs, and body already having been compromised because of that.

Glenna. Man I wish I would have known about the tip that soccerfreaks told you. Maybe I would not have gotten down to 88 lbs. I don't know if it would have worked for me, but I definitely would have tried it.

stevenl

sweetblood22 said:

Steve and Glenna
Maybe I should have left out the whimp comment? I am not implying anyone other than me was whimpy. I said no to the docs in the begining cause I was scared, thank God I changed my mind because I would never have made it. I just feel whimpy in comparison to others here, but maybe I should not feel that way, we are all unique. Sometimes I forget that I also have the added complication of the Fanconis Anemia. My organs, and body already having been compromised because of that.

Glenna. Man I wish I would have known about the tip that soccerfreaks told you. Maybe I would not have gotten down to 88 lbs. I don't know if it would have worked for me, but I definitely would have tried it.

trying
No sweet,
I am saying I am 6-2 and was scared of the thing. It's me that's a wimp.

Steve