JG tube - I'm royally pi**ed off!

LeeinLondon

I am so furious with the medical establishment I could spit. On monday when I had the feeding tube surgery, the surgeon who was actually performing the procedure approached us literally on the way into the OR. He explained that my oncologist had ordered a G tube, but the surgeon felt that it should be a JG tube instead (which connects directly to the small intestine). He tried to reach the oncologist on the phone but could not. He said that the main reason he recommended the JG tube was because it would make me less likely to aspirate stomach contents through the incision than a G tube, especially if I was on chemo, as chemo makes the stomach drain inefficiently. I asked about the down side, and he couldn't think of one.

SO.. of course I give him permission, we proceed, and now I find out that there is a major downside - the need for almost continual feeding (vs. approx 1 hour per day with the G tube).. at it's fastest setting, I will need to be connected to the pump 12-15 hours a DAY (if my bowel can absorb the material that quickly). The phrase "night feeding" had come up, which I think most people would imply that most or all of your feeding would be done while you're sleeping - so much for that. If I go to bed at 10 PM and wake at say, 5 AM, I will need to keep feeding until potentially 3 in the afternoon EVERY DAY, of course that doesn't include "normal eating" by mouth.

Sounds like a fun way to spend my life. One step forward, 25 steps back.

So I wasn't given the facts or time to make a proper decision, and my enthusiasm for the surgery is gone. Wow, now I can get nutrition.. and spending half of my waking hours tethered to a pump.

I don't want to sound whiny and I'm grateful for the options. I just feel sideswiped as someone who has played an active role in my treatment since day 1, now my life enjoyment (it's likely of course that I'll have the tube for the rest of my life) has been impacted because (A) my oncologist didn't bother to explain my surgical options to his patient or the surgeon, and I was forced into making an on-the-spot decision without accurate information. If I had been made aware of the huge time commitment, I would have delayed the surgery pending further research.

Don't ever think that someone can be trusted just because they have a diploma.

Thanks for listening to me vent. This sucks.

- Lee

Donna70

Lee this is only what I know
I can understand your being upset and wondering why this was done. I had a j tube for 3 months after my esophagectomy and I did do nite feedings. But I started it around 6:30 pm and finished around 4-5 am in the morning. I also found out I could unhook myself for 10-20 minutes from the pump and do what I had to do without the pump attached. This of course puts you on more time on the pump. I am sure some others on this board will tell their stories about g tube problems and there are many. I did have drainage from my j tube and some soreness and burning of skin but what I saw on this board about some bad g tube experiences made me happy to have the j tube. This is just what I have known and heard. I hope this works out for you. My thoughts and prayers will be with you. This all is a big adjustment. take care,
Donna70

LeeinLondon

Donna70 said:

Lee this is only what I know
I can understand your being upset and wondering why this was done. I had a j tube for 3 months after my esophagectomy and I did do nite feedings. But I started it around 6:30 pm and finished around 4-5 am in the morning. I also found out I could unhook myself for 10-20 minutes from the pump and do what I had to do without the pump attached. This of course puts you on more time on the pump. I am sure some others on this board will tell their stories about g tube problems and there are many. I did have drainage from my j tube and some soreness and burning of skin but what I saw on this board about some bad g tube experiences made me happy to have the j tube. This is just what I have known and heard. I hope this works out for you. My thoughts and prayers will be with you. This all is a big adjustment. take care,
Donna70

Thank you Donna, I hope that
Thank you Donna, I hope that I am able to feed that quickly.. it likely depends on volume of course, they have currently prescribed 2100 calories per day. I wasn't able to find anything online that indicated that G tubes leak more than G tubes; given the JG design bypassing the stomach I can see why that might be true, but it would have been nice to know how much greater the risk would have been.

And take me with a grain of salt. We in this forum are so inundated with emotion and crisis and constant decision that my skin is thinner than it used to be and emotion tends to take front stage a lot of the time.

One day at a time...

Lee

Unknown

This comment has been removed by the Moderator

TerryV

LeeinLondon said:

Thank you Donna, I hope that
Thank you Donna, I hope that I am able to feed that quickly.. it likely depends on volume of course, they have currently prescribed 2100 calories per day. I wasn't able to find anything online that indicated that G tubes leak more than G tubes; given the JG design bypassing the stomach I can see why that might be true, but it would have been nice to know how much greater the risk would have been.

And take me with a grain of salt. We in this forum are so inundated with emotion and crisis and constant decision that my skin is thinner than it used to be and emotion tends to take front stage a lot of the time.

One day at a time...

Lee

J-Tube "backpack"
Regarding this comment from William

Does the manufacturer of your particular make of tube also have any accessories that include a "portable pack?"

I was able to find the backpacks online for about $80 USD IF your supplier doesn't make them available. It may have even been on Amazon.com.

Lee, I get your frustration. My husband is an easy-going guy who loves to not be trapped in the house, much prefers hiking at the late. This slow tube feeding frustrates him to no end. His mood changes when he "has to leash up" - his words. I can sense a tension in the house when it's time for him to hook up. The night feeding idea - while great for some - hasn't worked for Nick. His insomnia kicks into high gear when "leashed".

However, there are good reasons to have the J-Tube. William highlighted them for you, so I won't rehash.

Gain some weight back, get your stomach settled to where you maybe can handle your own intake orally, and keep the J-Tube for "when needed"

Best of luck to you both! You amaze me!

Terry
Wife of Nick, Stage 3

Unknown

This comment has been removed by the Moderator

Unknown

This comment has been removed by the Moderator

Gatoraid

Tube Feeding
The tube was put in as part of the surgery and my feedings took about 14 hours a day the first week. The second week I was allowed soft foods but still required the 16 hour feeding. The third week the volume went lower as I was able to eat more solid foods. The fourth week I was on regular food and the feedings were drastically reduced and ended on week five. By bypassing the stomach I did not experience any nausea from these feedings. Since I was recovering from surgery I was weak and spent all my time in my lounge chair. I could not get comfortable in any position in a bed. My feedings started at 6pm and normally ended around 8am. The first month out of surgery getting fed this way is difficult, but it's a short period of time and it did its job for me. I truly sympathize with you and wish you the best during this nightmare.

Jim

cher76

Lee,
I understand your
Lee,
I understand your frustration totally. Even though Rickie had a PFG tube (which is essentially a smaller gauge g tube inserted using interventional radiology and not requiring a hospital stay) that was inserted into his stomach, his is gravity fed, so that means he is hooked up to a pole as well. He expressed the same feelings as you. What kind of "quality of life" will I have if I have to be hooked up to a pole all day, were his exact sentiments. They prescribed 5 to 6 cans a day, and at first they were taking about an hour and a half to go through. He was being very cautious with the rate because of hearing all the stories of people being nauseated with the g tube. Since then he has learned to regulate it so he can get a can in 30 to 45 minutes. He has never had any problems with nausea or a clogged tube. I think everyone is different and what works for one might not work for another. Even though we requested a j tube after recommendations from this site, all 3 of his doctors felt the g tube was a better fit for him, and so far so good. Also since he is somewhat able to eat, he has never taken 5 or 6 cans in a day. He usually shoots for 2 to 3 feedings, one mid morning, one at lunch and one after supper in the later evening. He was told not to lay down for about 30 minutes after a feeding, so that extends the time required for his last feeding of the day. Give it time and I am sure you will find your groove. The insertion point of the tube has healed up nicely, and he was even able to go swimming this week. Being stage IV Rickie will probably never get rid of the tube either, but he has learned to deal with it. Sometimes he just opts for a can of Ensure Plus instead of a feeding, as it has just about the same amount of calories and nutritional value, and does not take nearly the amount of time to drink as a feeding takes.
Take care and know that it is ok to vent!
Cheryl
Wife of Rickie, dx stage IV EC Oct. 2010

LeeinLondon

cher76 said:

Lee,
I understand your
Lee,
I understand your frustration totally. Even though Rickie had a PFG tube (which is essentially a smaller gauge g tube inserted using interventional radiology and not requiring a hospital stay) that was inserted into his stomach, his is gravity fed, so that means he is hooked up to a pole as well. He expressed the same feelings as you. What kind of "quality of life" will I have if I have to be hooked up to a pole all day, were his exact sentiments. They prescribed 5 to 6 cans a day, and at first they were taking about an hour and a half to go through. He was being very cautious with the rate because of hearing all the stories of people being nauseated with the g tube. Since then he has learned to regulate it so he can get a can in 30 to 45 minutes. He has never had any problems with nausea or a clogged tube. I think everyone is different and what works for one might not work for another. Even though we requested a j tube after recommendations from this site, all 3 of his doctors felt the g tube was a better fit for him, and so far so good. Also since he is somewhat able to eat, he has never taken 5 or 6 cans in a day. He usually shoots for 2 to 3 feedings, one mid morning, one at lunch and one after supper in the later evening. He was told not to lay down for about 30 minutes after a feeding, so that extends the time required for his last feeding of the day. Give it time and I am sure you will find your groove. The insertion point of the tube has healed up nicely, and he was even able to go swimming this week. Being stage IV Rickie will probably never get rid of the tube either, but he has learned to deal with it. Sometimes he just opts for a can of Ensure Plus instead of a feeding, as it has just about the same amount of calories and nutritional value, and does not take nearly the amount of time to drink as a feeding takes.
Take care and know that it is ok to vent!
Cheryl
Wife of Rickie, dx stage IV EC Oct. 2010

Good pump news
Well I spoke to my case worker and the government will pay for 75% of the price of a portable pump.. Sweet!

It seems like 12 hrs is about the fastest I can hope for, but the portable pump will sure make it easier to get around. The stand alone is a good 20lbs.

By the way, I'm into my second feeding and I find it tastes very sweet... Yes I'm kidding.

LeeinLondon

unknown said:

This comment has been removed by the Moderator

Thank you Sherri
This has
Thank you Sherri

This has given me hope that the jg tube was a better choice. Appreciate it.

jojoshort

LeeinLondon said:

Good pump news
Well I spoke to my case worker and the government will pay for 75% of the price of a portable pump.. Sweet!

It seems like 12 hrs is about the fastest I can hope for, but the portable pump will sure make it easier to get around. The stand alone is a good 20lbs.

By the way, I'm into my second feeding and I find it tastes very sweet... Yes I'm kidding.

Tastes sweet?
I guess you're not feeding with the spinach-flavored ones...

chemosmoker

LeeinLondon said:

Good pump news
Well I spoke to my case worker and the government will pay for 75% of the price of a portable pump.. Sweet!

It seems like 12 hrs is about the fastest I can hope for, but the portable pump will sure make it easier to get around. The stand alone is a good 20lbs.

By the way, I'm into my second feeding and I find it tastes very sweet... Yes I'm kidding.

Glad to see your outlook improved!
Lee,
I was frustrated and angered to hear your post and what happened while laying on a gurney headed into the OR. Gosh I love making life-changing medical decisions while I am in such a clear-minded and ready to think state of mind like that! Got to love doctors and health care systems that work this way. As William pointed out, we are adopting your system of government-run health care as we speak, and man is it going to hell in a hand-basket here in Tennessee FAST! I am glad to hear the they will pay for 75% of the portable unit. Great news!
I am pleased to read all of these responses and it seems that maybe you made the right call after all? At the very least I am pleased if you are now in a better place with it.
I have so far avoided all medical procedures save for all of the pathology and testing required to get to the happy place of a thorough stage IVb diagnosis. I am still eating and hydrating by mouth for as long as I possibly can and I am grateful for that. BUT...I also understand that I am a minority in this arena and very lucky (do I dare use that word?) for now.
Keep us posted on HOW your feedings go and how your weight is coming along. I will be curious to read as I may be in your shoes at some point. I look to you and many others here for advice and for what to expect as I begin to crumble and fall apart and become dependent on these very procedures and machine as time goes by. Maybe.
As William says, at least we're alive to complain.
We are here with you, not just for you. I eagerly await your next post here and on the blog too. I wish you and Chantal all the best. I hope you get stronger for your decision and are ready to continue to fight and re-start chemo again, should that be the route you choose.
Take care and keep us posted. Hope I'm not rambling... Woke up early to awful thigh cramps from hell, worse than any charlie-horse I ever had.

PS- Is there any after taste, or is it just sweet? ROFL!
-Eric

LeeinLondon

unknown said:

This comment has been removed by the Moderator

Hi William
Thanks for the info and encouragement. I'm starting to believe that we made the best long-term decision. And yes, we've investigated the portable option, I will have one soon, and as a bonus it should cost us little or nothing to purchase.

LeeinLondon

chemosmoker said:

Glad to see your outlook improved!
Lee,
I was frustrated and angered to hear your post and what happened while laying on a gurney headed into the OR. Gosh I love making life-changing medical decisions while I am in such a clear-minded and ready to think state of mind like that! Got to love doctors and health care systems that work this way. As William pointed out, we are adopting your system of government-run health care as we speak, and man is it going to hell in a hand-basket here in Tennessee FAST! I am glad to hear the they will pay for 75% of the portable unit. Great news!
I am pleased to read all of these responses and it seems that maybe you made the right call after all? At the very least I am pleased if you are now in a better place with it.
I have so far avoided all medical procedures save for all of the pathology and testing required to get to the happy place of a thorough stage IVb diagnosis. I am still eating and hydrating by mouth for as long as I possibly can and I am grateful for that. BUT...I also understand that I am a minority in this arena and very lucky (do I dare use that word?) for now.
Keep us posted on HOW your feedings go and how your weight is coming along. I will be curious to read as I may be in your shoes at some point. I look to you and many others here for advice and for what to expect as I begin to crumble and fall apart and become dependent on these very procedures and machine as time goes by. Maybe.
As William says, at least we're alive to complain.
We are here with you, not just for you. I eagerly await your next post here and on the blog too. I wish you and Chantal all the best. I hope you get stronger for your decision and are ready to continue to fight and re-start chemo again, should that be the route you choose.
Take care and keep us posted. Hope I'm not rambling... Woke up early to awful thigh cramps from hell, worse than any charlie-horse I ever had.

PS- Is there any after taste, or is it just sweet? ROFL!
-Eric

JG tube report
So far so good, day 4 @ 120 ML/hr and no issue. As I wrote earlier, discomfort from the sticky stuff on my chest is the worst thing. The pump is virtually silent and I literally feel nothing when I'm feeding so you forget it's there. I am feeling more energetic each day, and sleeping a little better at night. Swallowing seems to have improved somewhat, and I wonder if it's because I don't feel so pressured to eat. Experimented with pizza yesterday and it was a no-go. Ahhhh a man can dream...pizza...

TerryV

LeeinLondon said:

JG tube report
So far so good, day 4 @ 120 ML/hr and no issue. As I wrote earlier, discomfort from the sticky stuff on my chest is the worst thing. The pump is virtually silent and I literally feel nothing when I'm feeding so you forget it's there. I am feeling more energetic each day, and sleeping a little better at night. Swallowing seems to have improved somewhat, and I wonder if it's because I don't feel so pressured to eat. Experimented with pizza yesterday and it was a no-go. Ahhhh a man can dream...pizza...

Pizza
Maybe pizza toppings only? That works for us

Terry
wife of Nick

adube

LeeinLondon said:

Good pump news
Well I spoke to my case worker and the government will pay for 75% of the price of a portable pump.. Sweet!

It seems like 12 hrs is about the fastest I can hope for, but the portable pump will sure make it easier to get around. The stand alone is a good 20lbs.

By the way, I'm into my second feeding and I find it tastes very sweet... Yes I'm kidding.

Yay Portable Pump! I'm so
Yay Portable Pump! I'm so glad to hear that you found a portable option! And, I'm with chemosmoker, I can't believe they would expect you to make a sound thoughtful medical decision while on your way into surgery! That's so messed up.

Sorry the pizza was a no go, but at least you're able to keep a healthy diet up with the pump now, right? So much less stress than worrying about what you can keep down and what you have apetite for. Who knows, maybe when you get a little further in, you might feel up for it. This might sound stupid, but I remember I ate it when I had my wisdom teeth out-- what about baby food? They make all kinds of tasty flavors (especially fruits) and they're packed with nutrients. My dad tried apple-banana oatmeal the other day and he loved it. He probably thinks I'm a jerkface for buying him babyfood for his 50th birthday last week, but he's got a good sense of humor (plus I thought it might be the only way he might consider giving it a go).

Keeping you in my thoughts, always.

Alissa

(daughter of Mike, IV)

LeeinLondon

adube said:

Yay Portable Pump! I'm so
Yay Portable Pump! I'm so glad to hear that you found a portable option! And, I'm with chemosmoker, I can't believe they would expect you to make a sound thoughtful medical decision while on your way into surgery! That's so messed up.

Sorry the pizza was a no go, but at least you're able to keep a healthy diet up with the pump now, right? So much less stress than worrying about what you can keep down and what you have apetite for. Who knows, maybe when you get a little further in, you might feel up for it. This might sound stupid, but I remember I ate it when I had my wisdom teeth out-- what about baby food? They make all kinds of tasty flavors (especially fruits) and they're packed with nutrients. My dad tried apple-banana oatmeal the other day and he loved it. He probably thinks I'm a jerkface for buying him babyfood for his 50th birthday last week, but he's got a good sense of humor (plus I thought it might be the only way he might consider giving it a go).

Keeping you in my thoughts, always.

Alissa

(daughter of Mike, IV)</p>

No pizza for me
Hi Alissa;

Glad to hear that your dad is finding foods he can eat. Unfortunately I've reached the point where I can barely eat anything, and the thought of eating is so repulsive that I'm glad about that (if that makes any sense). Even liquids go down very slowly and my gag reflex is so sensitive that even water is iffy.

- Lee

adube

LeeinLondon said:

No pizza for me
Hi Alissa;

Glad to hear that your dad is finding foods he can eat. Unfortunately I've reached the point where I can barely eat anything, and the thought of eating is so repulsive that I'm glad about that (if that makes any sense). Even liquids go down very slowly and my gag reflex is so sensitive that even water is iffy.

- Lee

</b>
I'm so sorry to hear that, Lee. It's only been a few days and I've completely fallen in love with you, I can only imagine how much Chantal adores you. I hope that the feeding tube helps keep you more comfortable and less stressed. At least it will be able to give you two more time together.

I think about you every day.

All my love,
Ali

LeeinLondon

adube said:

</b>
I'm so sorry to hear that, Lee. It's only been a few days and I've completely fallen in love with you, I can only imagine how much Chantal adores you. I hope that the feeding tube helps keep you more comfortable and less stressed. At least it will be able to give you two more time together.

I think about you every day.

All my love,
Ali</p>

hi Ali
We have to stop meeting like this

I'm glad that Mike has made a little progress, please keep us posted.

Lee