1. < Digestive Health

Getting an NJ tube and am terrified!

Posted by gastrogirl @gastrogirl, Nov 14, 2021

This is being done any day now, waiting for a bed to open up as I will be admitted for it due to refeeding syndrome. I not eaten more than 350 cals in several months. I am not in good shape. I am scared to death to get it but also for what it will be like after. Nobody to ask questions too since it is like an emergent situation. Anyone care to share what it was like adjusting to feeds? Living with the nasal tube? I am even scared to sleep with that thing. LOL The stress of this is making me so sick right now and I am waiting and not knowing when that call will come.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 14, 2021

@gastrogirl, I can understand your being scared and stressed with all that you are going thru. I realize that you have not been able to eat for a while, no wonder that you are weak and 'not in good shape' right now.
I am unfamiliar with the procedure and the adjustments involved. @gastrogirl, I can understand your being scared and stressed with all that you are going thru. I realize that you have not been able to eat for a while, no wonder that you are weak and 'not in good shape' right now.
While I am unfamiliar with the procedure or the adjustments involved, I would expect that you will feel better after your recovery. I hope that you will feel stronger when you get some nourishment.
Being 'on-call' is is something that I have experienced while waiting for my transplant. I hope that you will hear something soon. Do you live near the hospital? Is someone going to be going with you to listen and ask questions for you about what you can expect afterwards?

I am sending my thoughts and hope for a comfortable recovery and an improvement in your overall condition. I will be watching for any updates.
Hugs.

REPLY
1 reply
gastrogirl | @gastrogirl | Nov 14, 2021
In reply to @rosemarya "@gastrogirl, I can understand your being scared and stressed with all that you are going thru...." + (show)
@rosemarya

@gastrogirl, I can understand your being scared and stressed with all that you are going thru. I realize that you have not been able to eat for a while, no wonder that you are weak and 'not in good shape' right now.
I am unfamiliar with the procedure and the adjustments involved. @gastrogirl, I can understand your being scared and stressed with all that you are going thru. I realize that you have not been able to eat for a while, no wonder that you are weak and 'not in good shape' right now.
While I am unfamiliar with the procedure or the adjustments involved, I would expect that you will feel better after your recovery. I hope that you will feel stronger when you get some nourishment.
Being 'on-call' is is something that I have experienced while waiting for my transplant. I hope that you will hear something soon. Do you live near the hospital? Is someone going to be going with you to listen and ask questions for you about what you can expect afterwards?

I am sending my thoughts and hope for a comfortable recovery and an improvement in your overall condition. I will be watching for any updates.
Hugs.

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Thanks for the response! Sorry you are also on call. A transplant, I wish you all the luck in the world and a speedy recovery. It has to be so hard on you. Are you close by? You must have to be. I am 3 to 4 hours away. My husband, thank GOD for this awesome man, he will be there, we have a list of questions written out. 🙂 Have a great week!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 14, 2021
In reply to @gastrogirl "Thanks for the response! Sorry you are also on call. A transplant, I wish you all..." + (show)
@gastrogirl

Thanks for the response! Sorry you are also on call. A transplant, I wish you all the luck in the world and a speedy recovery. It has to be so hard on you. Are you close by? You must have to be. I am 3 to 4 hours away. My husband, thank GOD for this awesome man, he will be there, we have a list of questions written out. 🙂 Have a great week!

Jump to this post

Oops, @gastrogirl, I did not intend to mislead you. My transplant was 12 years ago, but the memory of waiting and the anxiety and stress are still vivid.
Keep thinking positively while waiting.

REPLY
ZeeGee | @fourof5zs | Nov 14, 2021
In reply to @gastrogirl "Thanks for the response! Sorry you are also on call. A transplant, I wish you all..." + (show)
@gastrogirl

Thanks for the response! Sorry you are also on call. A transplant, I wish you all the luck in the world and a speedy recovery. It has to be so hard on you. Are you close by? You must have to be. I am 3 to 4 hours away. My husband, thank GOD for this awesome man, he will be there, we have a list of questions written out. 🙂 Have a great week!

Jump to this post

@ gastrogirl

I am glad to read your husband is there with you. Make sure you have something to take notes with. On one thing with my gastro tube my husband did not quite understand how to do. Notes would not have worked. Dr Bower's “Fellow” saw my ipad and grabbed it and videoed Dr Bowers showing my husband what to do. (my husband isn't good with ipad) … but he watched the video several times and understood what he needed to do)

Take a few good breaths and try to relax. You will do fine. The tube will probably not hurt being inserted but may feel uncomfortable. I do remember watery eyes. While on the gastric feeding tube I could only recline to 35° angle … but it may be different for you. My last surgery was open and my rib pain kept me from lying flat anyway. My recliner was nice. If you do not have a recliner you might could find a comfy position with pillows or a wedge.

Our hardest part with my gastric feeding tube was medications .. crushing them and mixing with water and putting in tube with syringe. Don't have the tv on and something happen on it funny while doing meds. I squirted formula everywhere when I laughed 😁 I don't even remember what we were watching now.

With determination from you and your husband you will both make it through this. One moment at a time. Will it be easy … there will probably be bumps in the road along the way. One moment at a time .. you can do it!

ZeeGee

REPLY
1 reply
gastrogirl | @gastrogirl | Nov 14, 2021
In reply to @fourof5zs "@ gastrogirl I am glad to read your husband is there with you. Make sure you..." + (show)
@fourof5zs

@ gastrogirl

I am glad to read your husband is there with you. Make sure you have something to take notes with. On one thing with my gastro tube my husband did not quite understand how to do. Notes would not have worked. Dr Bower's “Fellow” saw my ipad and grabbed it and videoed Dr Bowers showing my husband what to do. (my husband isn't good with ipad) … but he watched the video several times and understood what he needed to do)

Take a few good breaths and try to relax. You will do fine. The tube will probably not hurt being inserted but may feel uncomfortable. I do remember watery eyes. While on the gastric feeding tube I could only recline to 35° angle … but it may be different for you. My last surgery was open and my rib pain kept me from lying flat anyway. My recliner was nice. If you do not have a recliner you might could find a comfy position with pillows or a wedge.

Our hardest part with my gastric feeding tube was medications .. crushing them and mixing with water and putting in tube with syringe. Don't have the tv on and something happen on it funny while doing meds. I squirted formula everywhere when I laughed 😁 I don't even remember what we were watching now.

With determination from you and your husband you will both make it through this. One moment at a time. Will it be easy … there will probably be bumps in the road along the way. One moment at a time .. you can do it!

ZeeGee

Jump to this post

Thanks so much for everything! Can not tell you how much it means to me. Take care sweetie. 🙂

REPLY
1 reply
ZeeGee | @fourof5zs | Nov 16, 2021
In reply to @gastrogirl "Thanks so much for everything! Can not tell you how much it means to me. Take..." + (show)
@gastrogirl

Thanks so much for everything! Can not tell you how much it means to me. Take care sweetie. 🙂

Jump to this post

@gastrogirl

I am here for you anytime. Keep me updated.

ZeeGee

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 28, 2021

@gastrogirl, I am dropping in for a brief visit and wondering how you are?

REPLY
gastrogirl | @gastrogirl | Nov 29, 2021

I am ok. Been quite an experience. I got the tube and was great. Feel much better. It only lasted a month before it clogged and could not be undone. It had to come out. 🙁 I refused to put the same type back in due to clogging issues. Nobody wants to do that over and over. I am feeling better since the tube, so I am taking a break over this holiday weekend to figure out what is next. I am hoping I had enough success with the NJ tube, that I can do to a GJ. Thanks for asking about me. 🙂

REPLY
2 replies
ZeeGee | @fourof5zs | Jan 28, 2022
In reply to @gastrogirl "I am ok. Been quite an experience. I got the tube and was great. Feel much..." + (show)
@gastrogirl

I am ok. Been quite an experience. I got the tube and was great. Feel much better. It only lasted a month before it clogged and could not be undone. It had to come out. 🙁 I refused to put the same type back in due to clogging issues. Nobody wants to do that over and over. I am feeling better since the tube, so I am taking a break over this holiday weekend to figure out what is next. I am hoping I had enough success with the NJ tube, that I can do to a GJ. Thanks for asking about me. 🙂

Jump to this post

@gastrogirl
Thinking of you.
ZeeGee

REPLY
walisky | @walisky | Jan 29, 2022
In reply to @gastrogirl "I am ok. Been quite an experience. I got the tube and was great. Feel much..." + (show)
@gastrogirl

I am ok. Been quite an experience. I got the tube and was great. Feel much better. It only lasted a month before it clogged and could not be undone. It had to come out. 🙁 I refused to put the same type back in due to clogging issues. Nobody wants to do that over and over. I am feeling better since the tube, so I am taking a break over this holiday weekend to figure out what is next. I am hoping I had enough success with the NJ tube, that I can do to a GJ. Thanks for asking about me. 🙂

Jump to this post

I think you'll find the GJ to be more comfortable than the NJ. My husband now has the button type of tube, which means that the outside tube is removed between feedings instead of dangling. If tube feeding will be a long-term situation, it might be worth checking into. His doctor had to order it after we asked about it. Is your husband adding a syringe of plain water before and after every feeding? That might help with any clogging issues. Does he add two syringes of water to each container of "food?" Hoping you are doing well and getting strong.

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