Feeding tube

N

NRGWoman

Cathlete
For anyone following my tale for the past year, here is the next installment. I have been nauseous everytime I eat or drink anything since I had surgery in January. I have been having to get IV fluids every 3 days since I am so dehydrated, and now my veins are so bruised they really can't do that anymore so I was put on a feeding tube today. I am not sure I like the feeding tube it runs from my nose into my small intestine (jejunum). I gag every time I try to talk, DH love it he has been talking at me non-stop all day. So far we have just put water into the tube, but DH is currently out getting the liquid nutrition and the pump to feed it into the tube. It will be so interesting to see how I feel receiving nutrition into my intestine and not my stomach. My doctors here have come to the end of their knowledge and have referred me to Mayo. I don't know when my appointment will be yet, but we expect in the next 2-4 weeks. We are just hoping I will be more comfortable while feeding with the tube while we wait than I have been for the last couple of months.

In the mean time I am watching the progress on filming STS and looking forward to the day I am healthy and strong enough to start the STS program.

Shayne
 
Wow, Shayne, my heart goes out to you. When I read your description it brought back memories of DS when he was a very, very sick infant and he had the same device - I want to call it an NJ tube.

I certainly hope and will pray that the tube helps with the nausea and helps you get some much needed nutrition.

Please let us know what happens at Mayo.
 
Oh, Shayne, just wanted to send you some {{{HUGS}}} and tell you that I'm sorry you're having to go through all this!!!
 
Shayne,

I'm so sorry that you are having to go through tube feedings. My twins were tube fed. They kept pulling the tubes out of their noses! It was horrific. When they were 2 years old, they went back on tube feedings for a short time. The therapists had them play with baby dolls with tubes drilled into the dolls' noses. The twins just pulled those out with a vengeance and hugged the dolls with a death grip. There was no way my girls would allow the therapists to put tubes in the dolls' noses on their watch!

During their hospital stay, I met a teenager who had been tube fed all her life. She had the GI tube instead. I hear that comes with a whole nother set of difficulties (more reflux).

Hopefully, the doctors will be able to help you before any long term issues take effect. Have you googled tube feedings yet? There are some support groups on the internet who can help you cope. I found one when my twins were have a host of feeding issues. They were great with advice and guidance, more so than the doctors.

Blessings,
Wendy
 
{{{{{Shayne}}}}}

You poor thing -- you have been through so much this past year. I sure hope they can get to the bottom of it at Mayo. Please know that my thoughts and prayers are with you.
 
Hugs and prayers to you Shayne! I sure hope you start feeling stronger with the feedings and get on to recovery. Good luck at Mayo.
 
I had something like this a few years ago so I feel for you it only lasted three months thank goodness. I was diagnosed with gastroparesis.
 
Shayne, I'm so sorry to hear that they doctors haven't yet found out how to help you! You are in my thoughts and best of luck with Mayo. I've heard many wonderful things about their doctors so I really hope they can find out what's going on so you can go back to living your life! BTW-too funny about your DH talking non-stop. Take care--
Jonahnah
Chocolate IS the answer, regardless of the question.
 
Hi Shayne,

I'm a registered dietitian and have many of my hospital patients on this type of feeding, and i too had a feeding tube in my past. Please feel free to PM me if you need any support.
Hugs to you,
Steph
 
Thank you all for your warm thoughts and wishes.

Things are definately better today. After getting some sleep last night my throat relaxed a lot and I am not gagging as much. I can mostly control the gag reflex if I relax. If I forget and start gagging DH stands over my yelling "go to your happy place", it's pretty funny. All I can say is thank goodness for yoga because I know how to relax my throat and body to stop the gagging reflex.

We got the liquid nutrition last night and it is going well. We have figured out the pump and how to bypass it and push in water too. It all seems to be going well and the nausea is pretty much gone, I can also tell my fluid levels are up. If I didn't have this tube in my face I would feel like joining the human population. I am glad I stuck through the discomfort yesterday (I was having fantasies of pulling the tube out), I think it will really help the doctors to know that I don't feel nauseous with this type of feeding.

I don't yet know when my appointment will be with Mayo. It will likely be in the next month, hopefully in the next couple of weeks. My horoscope says that I will resolve a long term health problem around April 20. At this time I am willing to try anything to get through my days so I am hoping my appointment will be around then, that would only be a week and a half away. Yeah. At least until then I have a manageable way to get through my days.

I am grateful to have a community of strong, supportive people to help me through this tough time.

Shayne
 
Will you be going to Mayo in Rochester? If so, I live 10 minutes from there. Let me know if you need any help with hotels, directions, etc. It's a great place. We are lucky enough to receive all of our medical care there, and I also spend a lot of time shuttling my out-of-town relatives to their appointments when they come. I'm relatively new to the board, so I don't know what you have gone through, but I hope you can find some relief and good health. Good luck and keep us posted.
 
If I forget and start gagging DH stands over my yelling "go to your
happy place", it's pretty funny.

********

OK, that just cracked me completely up. If you can face this drawn out and miserable sounding situation with a sense of humor I think you'll be feeling better soon. I'll keep my fingers crossed for a timely appointment.
 
Wow, you are one brave gal! I am glad you found a "happy" place! :7 I will definitely keep you in my thoughts & prayers while you wait for your appointment. My FIL just came off a feeding tube as he lost his swallowing function due to a stroke...they moved his feeding tube from his nose/mouth to his stomach after awhile which seemed much more comfortable for him. Would that be an option? He is now off the tube and eating normally which is what I pray for you! Keep us posted. Glad you are doing better!


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Your-Friend-In-Fitness, DebbieH (AKA "Den Mother Debbie") http://www.clicksmilies.com/s0105/aktion/action-smiley-066.gif[/img] If You Get The Choice To Sit It Out Or Dance, I Hope You DANCE!
 
Another update. We have pretty much mastered the feeding tube thing. I am feeling great. Now it hardly bothers me at all, but I still do have a pretty constant fantasy of pulling it out.

Yesterday I called one of my bosses yesterday to ask if there was some work I could do at home in the upcoming weeks. When she said yes I even made it to a 3 hour meeting. I must say most people handled the situation pretty well. Today I was able to go shopping with my Mom. This is more activity for me since before I had my last surgery in January, I can tell you I am going to sleep well tonight. I have even mastered sleeping with the feeding tube in and pumping away.

I got my prescreening call from Mayo on Friday. They said they would be calling with my appointment time in the next week or so. Until then at least I feel like I can get through my days. WeatherGirl I would love some help with hotels. I live in the Twin Cities so I don't have to go far, but I don't know a good place to stay.

Thank you for all of your support and I will let you know what happens at Mayo.

Shayne
 
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