Find us on Google+ Gastroparesis: Information About The Different Kinds of Feeding Tubes Part 2


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Monday, March 11, 2019

Information About The Different Kinds of Feeding Tubes Part 2

If you would like to read part one of the article, you can do so here: ino

I had to split it up because as one article, it would just be too long. I went about writing this article a bit differently. I posted a survey and had A LOT of responses, so if you participated in the survey, I wanted to say thank you. I also want to thank people who have sent in pictures and stories about this topic, to spread awareness and also to answer any questions you might have. I asked for stories, tips, and tricks from Gastroparesis Warriors with feeding tubes, since I do not have that personal experience to supplement into my research. I apologize because this is going to be a long article. There are a lot of topics to discuss but also a lot of things to share. Again, I want to say thank you to everyone who participated in the surveys, shared their stories and pictures, and for the emails. It helped me understand what I should research. So, let's get down to business and talk about the personal aspects of living with a feeding tube or the inability to have one because of preconceived notions.

I do not want to disparage doctors, at all. I think they have a really important job and they do their best to help people and save lives. However, there are a lot of doctors who may know about Gastroparesis, and other chronic, invisible illnesses, but they may not know how to treat them. My Gastroenterologist, for example, knew enough about Gastroparesis in 2012 to test me for it, but not treat me for it. Since then, awareness for Gastroparesis has come a LONG way, but we still have a long way to go for better treatments and ultimately, a cure.

Weight Issues and Starvation

I want to tackle the "weight issue" a lot of people have with doctors. This issue comes up in my support groups and on my pages. People have shared their stories with me and have messaged me asking for advice. I had one person who messaged me because her doctor told her she needed to lose weight before he would treat her for Gastroparesis. She is diabetic as well. She said that the doctor basically told her to starve herself and messaged me for advice on what to do, going forward. Her story broke my heart and I tried to give her the best advice I could, but I am not a medical doctor. I am a certified pharmacy tech and I have my license, but you should always consult your doctors with questions. Additionally, do your own research and question everything that you are told. You have to be diligent and be your own advocate because sometimes, doctors do make mistakes. We are all human, but I digress, so let me go back to my original point.

That is just overly bad advice, and I do not know how many people this doctor has told this to. Weight has NOTHING to do with Gastroparesis (If you are curious about Gastroparesis and what it does, here is another article I have written:

Furthermore, she told me that her doctor told her that your body going into "starvation mode" is not real. I want to address this because your body does weird things when you are starving. There is such a thing as "starvation mode," it's very real, and I am going to cite some sources so that you can educate yourself and others on what happens when you starve, and also to show your doctor if he or she says that this is not a real problem.

I love learning new things and educating myself as I do research on different topics because it helps me understand people going through these issues that I have no personal experience with them.

Survey Answers

Personal Accounts

"My name is Laura Biernacki and I have a PEJ feeding tube. I first started out with a NJ tube. Due to my gastroparesis , I was not getting the proper nutrition. So my gastroenterologist decided to try an NJ tube.
I had my NJ tube inserted by a radiologist. The reason he did it versus a nurse is that it goes all the way down to the jejunum. He had me lay down and guided it in via x-ray. I was really nervous, however the nurses were really helpful and kept spraying the back of my throat with numbing solution every time I felt like gagging. They also put a numbing solution in my nose so it wouldn't hurt too much. I felt like it was uncomfortable. However once they put it in, I felt relieved.

It did take a couple days to really get used to something in my nose. I did end up in the hospital for nutrition because I couldn't stop vomiting. But that was due to the gastroparesis not the feeding tube.

I did need to sleep somewhat upright in order to not gag on the tube. I also had to feed 24 hours a day so I wore a backpack with my pump. I will recommend you are very careful with any extra tubing hanging or dangling. It can get caught up on something. You really don't want to pull it out accidentally!

I did try eating small amounts of grits or cream of wheat, but I kept gagging. So I didn't really eat. However my gastroenterologist told me that he has had patients who were able to eat. I also was careful of my skin on my face where I would tape the tube. I used tegaderm which seemed to help protect my skin from irritation.

I hope I answered questions regarding a NJ tube.

I currently have a PEJ tube, because I needed something more permanent. So I will write about that.

I then got a PEJ tube the next month, because I was unable to maintain my nutrition any other way due to the gastroparesis.

So my gastroenterologist put in a PEJ tube via endoscopy. When I woke up it was painful, because I had an incision in my jejunum. Plus he had to put a plastic piece around the site to keep the tube in place and help it heal. Unfortunately it had to be tight, so it was uncomfortable. He was able to loosen it after a week or so. That did help ! I have had it since June , so I am now really used to it.

I did have problems with fungal infections at first. But that was due to the fact that I have Lupus and have to be on chemo treatments. Therefore my immune system is not working. However my immunologist put me on a weekly infusion of immunoglobulin, so the infections have subsided.

I do make sure my site is always clean. I clean around it in the shower in the morning. I also make sure it is clean before bed. I usually try not to put bandages around the site unless I have to use ointments for an infection. I was told keeping the site open to air helps prevent infections from starting

I live mostly on tube feedings, so I do wear a backpack in the later afternoon so it will finish by morning. Again make sure if you are out and about, don't let any tubing dangle, because it would hurt like crazy to have it accidentally pull out.

I do leak bile from time to time which can stain clothes and cause skin irritation. If I have to dress up, I will use a split sterile sponge to cover the site, so I don't hurt my clothes. But that doesn't happen too often. I hope I have helped. Please let me know if you have any other questions or concerns. I will try to help 😊 😊
Thanks so much for listening to me 💚💚💜💜"

Image Source: Laura Biernacki's PEJ Feeding Tube

Source: Laura Biernacki's NJ Feeding Tube

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