Anyone with a feeding tube, how did you get one?

Posted by gastrogirl @gastrogirl, Oct 12, 2021

I have severe AMAG and gastroparesis. Ability to eat has slowed down. I started losing weight, but more than the weight is the muscle and fat wasting away. Energy is gone. Starting to have all these weird things going on and I am losing my quality of life rather quickly. All they want to do is throw more meds at me, which take away the little I do have as far as life goes. I want it back, not to be a drugged up vegetable. All I need is the ability to have some nutrition so I can be active. Insurance denies for months some drugs. All I can do is take antidepressants, I tried them all at this point. They make me sleep and make me wanna eat even less.
All I am asking for is my life back and to not look in the mirror and see a stick figure. I am not all that bad yet, but I do not recognize myself.
From what I read, most end up with a tube and seems they did not have this much trouble getting one.
So what made you finally end up on one? I am tired of begging and wasting away in the meantime. I may not be the ideal candidate, but I can not eat more than 300 cals a day and I get about 10 grams of proteins or less. Been months and months like this, no matter what meds they give me. Starting to get scared.
Nobody is hearing me though. Should it be this hard? I am done with starting and stopping meds. Last thing I want it to sleep all day and wanna eat even less.
I want my life back to an extent.
Thanks for sharing how hard it was for you guys! Means a lot to me.

Interested in more discussions like this? Go to the Digestive Health group.

Hi @gastrogirl, I am so sorry you are having a hard time with your gastroparesis. Unfortunately, I think a doctor is the only one who can diagnose the need for a feeding tube and the length of time it will be required. Doctors also prescribe the type of nutrition that must be fed by the tube.

Have you considered a second opinion?

REPLY
@amandaa

Hi @gastrogirl, I am so sorry you are having a hard time with your gastroparesis. Unfortunately, I think a doctor is the only one who can diagnose the need for a feeding tube and the length of time it will be required. Doctors also prescribe the type of nutrition that must be fed by the tube.

Have you considered a second opinion?

Jump to this post

I want a second opinion badly. Getting into someone new is taking months. I am working on it though.

REPLY

@gastrogirl

I had to look AMAG up. .. autoimmune metaplastic atrophic gastritis. A new one for me.

I had a feeding tube, but it was not because of this condition. It appears from reading that you should have one.

All I can tell you is talk with your doctors about it… ask why not? Get opinions from other doctors.

ZeeGee

REPLY
@fourof5zs

@gastrogirl

I had to look AMAG up. .. autoimmune metaplastic atrophic gastritis. A new one for me.

I had a feeding tube, but it was not because of this condition. It appears from reading that you should have one.

All I can tell you is talk with your doctors about it… ask why not? Get opinions from other doctors.

ZeeGee

Jump to this post

Hi, it is much easier to just say AMAG! lol I actually have no good cells left in my stomach. Between that and the Gastroparesis, eating and getting nutrition seems impossible. My husband and I have been begging the docs but they keep throwing antidepressants at me, which make me want to eat less. Mayo docs, and I have a few, they are arguing as to what to do and nobody is listening to the other. I am caught in the middle and drugged up on these meds that make me feel like a vegetable when all I need is some nutrition. I am looking elsewhere but taking forever to get in.
From what others tell me, they really had no issues getting what they needed. I been trying to figure out how they got the tube and what made the docs decide. TY for replying 🙂 Take care!

REPLY
@gastrogirl

Hi, it is much easier to just say AMAG! lol I actually have no good cells left in my stomach. Between that and the Gastroparesis, eating and getting nutrition seems impossible. My husband and I have been begging the docs but they keep throwing antidepressants at me, which make me want to eat less. Mayo docs, and I have a few, they are arguing as to what to do and nobody is listening to the other. I am caught in the middle and drugged up on these meds that make me feel like a vegetable when all I need is some nutrition. I am looking elsewhere but taking forever to get in.
From what others tell me, they really had no issues getting what they needed. I been trying to figure out how they got the tube and what made the docs decide. TY for replying 🙂 Take care!

Jump to this post

@gastrogirl

Sometimes it is very hard to get a doctor, PA or NP to listen to you.

Trying plain talk… this has not worked for me: ________ … I need|want this: ______ .

If you do not have someone to go with you change that. It is a good idea for someone to be there that can say: you are not listening. .. or to ask: why?

I hope someone listens to you soon.

ZeeGee

REPLY

Morning Gastrogirl, you sound so sad and very uncomfortable. The medical system has become a “medical nightmare”. Since covid appeared it has let to the staff at all hospitals to work extremely long hours and so many changing fields. Finding a new doctor can take to long and your to sick to just hang around and wait. I’m a retired lab tech and I have heard so many sad stories it’s horrible. In my opinion walk into the best ED department you can drive to. Be sure to take a tote filled with things to do and water. You’ll be there for hours. I would double mask and just go. If you can drive to a descent place I would.
It’s happening everyplace. Nurses and doctors overworked and they have little backup. Doctors offices still limit the waiting room and amount of patients they see every day. I hear nightmare stories every day. Covid is causing the biggest impact on our medical system. The one thing is an ED will do something if it’s a good one and not your only local hospital. But you’ll wait a long time. I would try it. Why not, . your getting no help from the people caring for you now or not enough. Can you drink protein drinks frequently throughout the day? Getting a second or third opinion is always a good idea but when your sick you can’t wait.
During all my tests for motility colon issues they found 4 cysts on my pancreas. That was September. My appointment is January. Now I hope theses are nothing but waiting makes you wonder and I’m very tired of we have no opening till then,sorry. I’m sure it’s true because of covid but I want answers myself and waiting is scary. I say go to the ED. It’s worth a try. Best of luck. Keep posting, everyone listening. Joanne

REPLY

Thanks Joanne. I am sorry you are going through so much as well. I hate the local ER. They never help anyone. They tell me, you will not die so go home and make an appointment somewhere, I was thinking of driving to a different one with a different system.
I saw my gastro yesterday, went on person to make him see me. Nutritionist and Hepatologist told him their concerns and my need for immediate attention. He said he "does not believe in feeding tubes". It is a foreign object in the body. Just get botox injections and force myself to eat more. I am on prescription protein shakes. I used to do 3 a day but am down to it taking all day to do 1.
Somedays when too bloated and in pain, I can not finish one a day.
When I can eat, I force it down but then the next few days I pay the price. Having such terrible autoimmune gastritis that is atrophic now, well that does not help. Having no normal stomach lining cells plus making very little stomach acid.
I will keep pushing and bugging anyone I can. I am just starting to wonder why everyone medical that I see is so against it. Online so many of us end up with one. Do I have to collapse before they do it? Not sure how bad everyone else got before getting one or is it normal to get one more easily than my case?

Thanks so very much! I will take that advice. I have zero to lose at this point.

REPLY
@fourof5zs

@gastrogirl

Sometimes it is very hard to get a doctor, PA or NP to listen to you.

Trying plain talk… this has not worked for me: ________ … I need|want this: ______ .

If you do not have someone to go with you change that. It is a good idea for someone to be there that can say: you are not listening. .. or to ask: why?

I hope someone listens to you soon.

ZeeGee

Jump to this post

Thanks. I know what you mean. My husband has voiced his concerns a LOT! Tells them exactly what changes he sees, how much worse it has gotten and how each day is for me. But still they say, nope and throw more meds at me or want to do something that will not help my nutrition. That is why I am asking. How bad was everyone else before they were able to get it. I had my gastro yesterday tell me, he does believe in feeding tubes of any kind. To call the university. So I did and can not get in until Feb on an emergency basis. My fear is I will collapse before someone listens to me. I do not want/need three antidepressants, I want/need nutrition and my life back! Hah!

REPLY

Actually, you sound like a perfect candidate. I do not have a feeding tube. I was with my father daily doing exercises to retrain his swallowing after a couple trans eschemic attacks. He began losing weight, and was literally dying. I took him to his gp who was away, but, the other Dr. saw him. After checking the Dr. said my father was otherwise in good health and asked if he would be agreeable to a feeding tube so he could get good nutrition. We agreed and he began a road to recovering. I took care of the entry area as it is important to keep it very clean. There is a prescribed nutrition drink. At the time we used Ensure. The tube was ultimately removed and the wound closed. My father lived for another four years in good health and died of natural causes.
I pray you can find a compassionate Dr. who will listen and be willing to look outside the "box". Also, look for a Gastroenterologist who also supports Alternative Medicine and protocols.

REPLY
@gastrogirl

Hi, it is much easier to just say AMAG! lol I actually have no good cells left in my stomach. Between that and the Gastroparesis, eating and getting nutrition seems impossible. My husband and I have been begging the docs but they keep throwing antidepressants at me, which make me want to eat less. Mayo docs, and I have a few, they are arguing as to what to do and nobody is listening to the other. I am caught in the middle and drugged up on these meds that make me feel like a vegetable when all I need is some nutrition. I am looking elsewhere but taking forever to get in.
From what others tell me, they really had no issues getting what they needed. I been trying to figure out how they got the tube and what made the docs decide. TY for replying 🙂 Take care!

Jump to this post

If you’re as sick as you sound and you can no longer accept food in your stomach either TPN (total parental nutrition) or a PEG tube for feeding which bypasses your stomach.

REPLY
@jenatsky

If you’re as sick as you sound and you can no longer accept food in your stomach either TPN (total parental nutrition) or a PEG tube for feeding which bypasses your stomach.

Jump to this post

You would think so. I can accept food but it does not stay or digest correctly. Even liquid diet causes stomach flu like symptoms. And I get only 300 cals a day on a good day. Been going on for months as I waste away. My other specialist are asking them to do it and are quite concerned, but the gastro docs just wanna try another med, which so far only makes feel worse. It is starting to get too scary to keep playing games with them.

REPLY

You need to take control to get them to stop experimenting with you.

REPLY
Please sign in or register to post a reply.
  Request Appointment