as small as a world and as large as alone, dramaticmachines: Tube = success! This is...

1:44pm May 16, 2013

dramaticmachines:

Tube = success!
This is going to be long—sorry! I’m going to make this a weekly update; although, it hasn’t been quite a week…almost though. It is causing a lot of throat discomfort, but I am just having to deal with that because I am still unable to eat. Myself, my family, my doctor, and my friends were hoping that if I gave my stomach a break then I would be able to eat semi-normally again. That has not been the case. On Wednesday I visit my GI doctor again and we will discuss surgeons and getting a GJ tube placed.
This has all happened so quickly. It is difficult to take it all in. I never thought I’d have to rely on feeding tubes to actually live. But that is the positive thing about this! I feel like I can actually live again!! I have not been crashing during the day anymore. I have only blacked out once this week and it was not even a bad episode. With the tube, I can function. I even feel like I could make it at school for the majority of the day! I don’t think it would ever be good for me to go full time because my body is different and needs more rest, but it is better than just one class.
Before the tube, even when I was managing 1000 calories a day (still not enough, I know) I still could not function. I hardly like anything anymore because everything makes me sick so when my stomach is working properly I still cannot eat enough foods to allow my body to thrive. It is only enough to maintain weight. My day would consist of getting up and being drowsy, taking my meds, force feeding myself, and hardly making it through one class. Once I got home, I’d be blacking out every time I got up. My blood pressure would plummet. I would stress about eating because I would be too nauseous and have severe heartburn to even attempt to eat lunch. I would not be able to focus on my schoolwork and eventually I’d be confined to my bed for the rest of the day. By 12-2 pm I would be completely and totally done. Everything would ache. It would literally hurt to breathe. I could forget about making plans. If I did, it would be to lay in bed with my boyfriend and watch movies.
With the tube I feel alive again! I was able to get up at 7:30 today and put effort into getting ready. I actually had some energy in me. I went to class and didn’t have to put my head down or wonder how I was going to make it across the parking lot to drive myself home. I took my meds and did not have to bother worrying about food. I just hooked myself up to feeds and I know it has me covered. If I want to try to eat something later I can, but I am not relying on my stomach to sustain life for myself. It is noon and I am about to work on some school. My brain is still able to even think to do that. I have not been nauseous all day. I have not had horrible heartburn or reflux. No dry heaves. No blackouts. I do not feel like my heart is going to beat out of my chest. My joints are not quite as achy…just a few pains here and there (but that is just EDS for ya. That will probably always be). Judging by the other days this past week, by 5pm I still feel like I can go out and do something. I actually want to! Yesterday I was able to cook dinner for the first time in THREE YEARS! Usually I cannot even stand long enough to do that! Anyways, you all get the point I think.
My plan is to get the tube placed sometime this summer so I will have recovery time. Once everything is healed I can carry on with life. I want to try to go to school for 2 classes and dual enroll at the college as well. Maybe I can even graduate early like I always wanted now! The only issue is that I am terrified of going under general anesthesia because of the effects from my last surgery. After researching and talking with people, I want to try to do it under local. From what I have read they say it is much easier on your body that way. I will just have to discuss it with the doctor. I have had general twice in my life. The first surgery went fine. My second was a nissen fundoplication and my dysautonomia and gastroparesis came on full force! I have heard about a nissen worsening motility…or even any abdominal surgery doing that, but I am not sure about ALL of the autonomic symptoms. The surgeon may have knicked my vagus nerve during my last surgery. We don’t know if it was that, surgery in general, or the anesthesia. But I just want to be on the safe side.

Congratulations! I just got a GJ tube placed last month or is it two months now, and despite some complications it’s the best thing that’s happened to me in a long time.

I don’t know if you’re planning on getting a similar tube placed. But GJ tubes are really good because:

1. You can get all your food and meds through the J tube. It totally bypasses your stomach. So as long as your intestines can handle food, it works. (If your intestines are slower than usual, you might have to turn down the feeding rate from what they consider optimal. I had to do that. But it still works.)

2. You can drain fluid out of your stomach with the G tube. This is especially good if your gastroparesis causes bile and stomach acid to build up in your stomach, which can lead to reflux, aspiration, nausea, vomiting, etc. even if you’re not eating at all orally. So you can just remove it straight into a cup or the toilet or a syringe, or sometimes drain it into a bag.

So it’s perfect for a lot of people with gastroparesis. I’m really glad I got it. It’s given me so much of my life back. Not just nutrition, but I’ve stopped getting aspiration pneumonia every few weeks. Feeding tubes can actually lead to aspiration sometimes (especially if you’re not sitting up while feeding), but in my case, because of the reasons for the aspiration, the GJ tube has prevented aspiration for the most part.

And I don’t miss food nearly as much as I thought I would. I feel so much better, and I almost never feel hungry because I’ve got a near constant supply of food going in. Plus eating was such torture towards the end that I have a lot of negative associations with oral food.

So I’d totally recommend feeding tubes to anyone who needs them. Do your research too, if you are going to get one surgically fitted. Talk to people who are knowledgable about it. Be sure you get one that’s right for your needs.

For instance a G tube alone is terrible for feeding purposes most people with gastroparesis because it just puts food in your stomach. And your stomach is the problem. So WTF is a G tube going to do.

A J tube is generally a good thing for feeding, as long as your jejunum and intestines will tolerate the food. It can take awhile to get used to, but once you do it works really well.

A GJ tube is often really good because it lets you feed through one tube and drain through the other. And draining can make a huge difference. Often I get really nauseated, realize my stomach is full of bile, drain it out, and suddenly I feel great again.

And NJ tubes are often good too, especially for temporary situations. I think NG and NJ tubes are the ones with the worst aspiration risk though? Don’t quote me on that.

So usually for gastroparesis you’ll want a tube that bypasses your stomach. Whether it’s going in through your nose, or through a hole in your side. Hence J tubes, NJ tubes, GJ tubes, etc.

I was really glad that I had researched feeding tubes beforehand, because it meant I was able to push them for the tube I wanted.

Sometimes they will try to talk you out of a feeding tube even when your life is in danger. Because I have other disabilities that make them see me as not much of a person, I encountered a lot of doctors who actually thought I was better off dying than getting a tube. And even if they do see you as a person, a lot of medical professionals believe that once you get a tube your life is over. It’s not rational. They’re not rational when they say this. They just believe it because they have strange beliefs about disability.

So if you get them saying that yes you need a tube to survive, but trying to talk you out of a tube anyway? Fight them on it. Fight like hell. Get your family and friends involved. Make sure they know they’re being watched, and will be held accountable if you die because of negligence in getting you the tube. That’s what I had to do to get my tube, they all knew I needed it, they just didn’t think my life was worth anything.

Anyway congratulations on the tube and on feeling better because of it. If you really need one, you’ll feel infinitely better once you start getting real nutrition into your system.

Oh and also pay attention to what kind of nutrition they give you. There isn’t just one formula. There are tons of different kinds. Be sure to get one that suits your needs. With gastroparesis that will often be low fat low fiber. Mine is low fat no fiber high protein. The protein helps my neuromuscular problems. And I’m sure it gets more complicated if your gastroparesis is due to diabetes. But they have formulas for everything, just pay attention and be involved in choosing them. Be involved in both the choice of tube and the choice of formula. Because it’s your body and getting the right tube put in is really important.

Tube = success!

This is going to be long—sorry! I’m going to make this a weekly update; although, it hasn’t been quite a week…almost though. It is causing a lot of throat discomfort, but I am just having to deal with that because I am still unable to eat. Myself, my family, my doctor, and my friends were hoping that if I gave my stomach a break then I would be able to eat semi-normally again. That has not been the case. On Wednesday I visit my GI doctor again and we will discuss surgeons and getting a GJ tube placed.

This has all happened so quickly. It is difficult to take it all in. I never thought I’d have to rely on feeding tubes to actually live. But that is the positive thing about this! I feel like I can actually live again!! I have not been crashing during the day anymore. I have only blacked out once this week and it was not even a bad episode. With the tube, I can function. I even feel like I could make it at school for the majority of the day! I don’t think it would ever be good for me to go full time because my body is different and needs more rest, but it is better than just one class.

Before the tube, even when I was managing 1000 calories a day (still not enough, I know) I still could not function. I hardly like anything anymore because everything makes me sick so when my stomach is working properly I still cannot eat enough foods to allow my body to thrive. It is only enough to maintain weight. My day would consist of getting up and being drowsy, taking my meds, force feeding myself, and hardly making it through one class. Once I got home, I’d be blacking out every time I got up. My blood pressure would plummet. I would stress about eating because I would be too nauseous and have severe heartburn to even attempt to eat lunch. I would not be able to focus on my schoolwork and eventually I’d be confined to my bed for the rest of the day. By 12-2 pm I would be completely and totally done. Everything would ache. It would literally hurt to breathe. I could forget about making plans. If I did, it would be to lay in bed with my boyfriend and watch movies.

With the tube I feel alive again! I was able to get up at 7:30 today and put effort into getting ready. I actually had some energy in me. I went to class and didn’t have to put my head down or wonder how I was going to make it across the parking lot to drive myself home. I took my meds and did not have to bother worrying about food. I just hooked myself up to feeds and I know it has me covered. If I want to try to eat something later I can, but I am not relying on my stomach to sustain life for myself. It is noon and I am about to work on some school. My brain is still able to even think to do that. I have not been nauseous all day. I have not had horrible heartburn or reflux. No dry heaves. No blackouts. I do not feel like my heart is going to beat out of my chest. My joints are not quite as achy…just a few pains here and there (but that is just EDS for ya. That will probably always be). Judging by the other days this past week, by 5pm I still feel like I can go out and do something. I actually want to! Yesterday I was able to cook dinner for the first time in THREE YEARS! Usually I cannot even stand long enough to do that! Anyways, you all get the point I think.

My plan is to get the tube placed sometime this summer so I will have recovery time. Once everything is healed I can carry on with life. I want to try to go to school for 2 classes and dual enroll at the college as well. Maybe I can even graduate early like I always wanted now! The only issue is that I am terrified of going under general anesthesia because of the effects from my last surgery. After researching and talking with people, I want to try to do it under local. From what I have read they say it is much easier on your body that way. I will just have to discuss it with the doctor. I have had general twice in my life. The first surgery went fine. My second was a nissen fundoplication and my dysautonomia and gastroparesis came on full force! I have heard about a nissen worsening motility…or even any abdominal surgery doing that, but I am not sure about ALL of the autonomic symptoms. The surgeon may have knicked my vagus nerve during my last surgery. We don’t know if it was that, surgery in general, or the anesthesia. But I just want to be on the safe side.

Congratulations! I just got a GJ tube placed last month or is it two months now, and despite some complications it’s the best thing that’s happened to me in a long time.

I don’t know if you’re planning on getting a similar tube placed. But GJ tubes are really good because:

1. You can get all your food and meds through the J tube. It totally bypasses your stomach. So as long as your intestines can handle food, it works. (If your intestines are slower than usual, you might have to turn down the feeding rate from what they consider optimal. I had to do that. But it still works.)

2. You can drain fluid out of your stomach with the G tube. This is especially good if your gastroparesis causes bile and stomach acid to build up in your stomach, which can lead to reflux, aspiration, nausea, vomiting, etc. even if you’re not eating at all orally. So you can just remove it straight into a cup or the toilet or a syringe, or sometimes drain it into a bag.

So it’s perfect for a lot of people with gastroparesis. I’m really glad I got it. It’s given me so much of my life back. Not just nutrition, but I’ve stopped getting aspiration pneumonia every few weeks. Feeding tubes can actually lead to aspiration sometimes (especially if you’re not sitting up while feeding), but in my case, because of the reasons for the aspiration, the GJ tube has prevented aspiration for the most part.

And I don’t miss food nearly as much as I thought I would. I feel so much better, and I almost never feel hungry because I’ve got a near constant supply of food going in. Plus eating was such torture towards the end that I have a lot of negative associations with oral food.

So I’d totally recommend feeding tubes to anyone who needs them. Do your research too, if you are going to get one surgically fitted. Talk to people who are knowledgable about it. Be sure you get one that’s right for your needs.

For instance a G tube alone is terrible for feeding purposes most people with gastroparesis because it just puts food in your stomach. And your stomach is the problem. So WTF is a G tube going to do.

A J tube is generally a good thing for feeding, as long as your jejunum and intestines will tolerate the food. It can take awhile to get used to, but once you do it works really well.

A GJ tube is often really good because it lets you feed through one tube and drain through the other. And draining can make a huge difference. Often I get really nauseated, realize my stomach is full of bile, drain it out, and suddenly I feel great again.

And NJ tubes are often good too, especially for temporary situations. I think NG and NJ tubes are the ones with the worst aspiration risk though? Don’t quote me on that.

So usually for gastroparesis you’ll want a tube that bypasses your stomach. Whether it’s going in through your nose, or through a hole in your side. Hence J tubes, NJ tubes, GJ tubes, etc.

I was really glad that I had researched feeding tubes beforehand, because it meant I was able to push them for the tube I wanted.

Sometimes they will try to talk you out of a feeding tube even when your life is in danger. Because I have other disabilities that make them see me as not much of a person, I encountered a lot of doctors who actually thought I was better off dying than getting a tube. And even if they do see you as a person, a lot of medical professionals believe that once you get a tube your life is over. It’s not rational. They’re not rational when they say this. They just believe it because they have strange beliefs about disability.

So if you get them saying that yes you need a tube to survive, but trying to talk you out of a tube anyway? Fight them on it. Fight like hell. Get your family and friends involved. Make sure they know they’re being watched, and will be held accountable if you die because of negligence in getting you the tube. That’s what I had to do to get my tube, they all knew I needed it, they just didn’t think my life was worth anything.

Anyway congratulations on the tube and on feeling better because of it. If you really need one, you’ll feel infinitely better once you start getting real nutrition into your system.

Oh and also pay attention to what kind of nutrition they give you. There isn’t just one formula. There are tons of different kinds. Be sure to get one that suits your needs. With gastroparesis that will often be low fat low fiber. Mine is low fat no fiber high protein. The protein helps my neuromuscular problems. And I’m sure it gets more complicated if your gastroparesis is due to diabetes. But they have formulas for everything, just pay attention and be involved in choosing them. Be involved in both the choice of tube and the choice of formula. Because it’s your body and getting the right tube put in is really important.

Notes: