I will be splitting this up into two parts because I have received so many replies with personal stories and pictures. I am really impressed with the responses to the surveys I sent out for people with feeding tubes to answer to help those whom may have just had one placed, or whom may be on the fence regarding this decision. I will be expanding on the personal stories, survey answers, and pictures in the second part of this article. Thank you to everyone who were brave enough to help me out on this subject, and for helping people out there who might need extra guidance and reassurance.
I do not have any personal experience with feeding tubes, as I have stated above, so part one of my article will mostly be research.
***WARNING***
THIS ARTICLE DOES CONTAIN PHOTOS THAT MAY INCLUDE, BUT NOT LIMITED TO, FEEDING TUBE SITES, INFECTED FEEDING TUBE SITES, AND MAY CONTAIN GRAPHIC IMAGES IN RELATION TO FEEDING TUBES. I WANT TO WARN ANYONE WHO HAS A SQUEAMISH DISPOSITION, THAT THIS ARTICLE DOES IN FACT, CONTAIN PHOTOS.
I have been fortunate enough to encounter some wonderful people who have feeding tubes. They have shared their pictures with me, which you can find on my website (and some below this article),
https://emily-scherer.squarespace.com/feedingtube/
According to The Feeding Tube Awareness Foundation (https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/), these are the different kinds of feeding tubes,
Nasal Tubes (NG, ND, NJ)
Nasal tubes are non-surgical and temporary tubes placed through the nose and into the stomach or intestine. The choice between nasogastric (NG), nasoduodenal (ND), and nasojejunal (NJ) tubes depends on whether your child can tolerate feeding into the stomach or not.
NG-Tubes
NG-tubes enter the body through the nose and run down the esophagus into the stomach.
ND- or NJ-Tubes
ND-tubes are similar to NG-tubes, but they go through the stomach and end in the first portion of the small intestine (duodenum). NJ-tubes extend even further to the second portion of the small intestine (jejunum). Bypassing the stomach can be beneficial for those whose stomachs don’t empty well, who have chronic vomiting, or who inhale or aspirate stomach contents into the lungs.
My friend, Alley, was kind enough to share her NJ Tube story with me. You can read it here: http://www.emilysstomach.com/2014/03/an-nj-tube-story-by-alley-samms.html
All of the different nasal feeding tubes and placements.
Source:https://tinyurl.com/ychryage
Tips for Little Hands and Nasal Tubes
Babies and small children will often try to pull their nasal tubes out. At night, try putting mittens or socks on your child’s hands to keep him/her from pulling the tube out. You can tape the nasal tube (or feeding bag tubing) down the back of the shirt during the day to keep it out of the child’s way. At night, you may want to tape it further down the pajamas. If the pajamas are two-piece, you can run tubing inside the pajama leg to keep children from tangling.
Nasal Tube Considerations
They are non-surgical and temporary.
They are a good way to quickly get infants and children the nutritional benefits of tube feeding.
They can be helpful in determining if longer-term tube feeding will be beneficial.
Nasal tubes need to be taped to the cheek, which can be irritating to some children.
Little hands often succeed in pulling nasal tubes out. Make sure you discuss accidental removal with your doctor and have a replacement plan, because it will happen.
You may see increased nasal congestion, especially in infants.
Nasal tubes can make reflux, gagging, and oral aversions worse.
Nasal tubes can clog easily because they are very narrow. This is unlikely to happen with regular feeding, but may happen with medications that aren’t in liquid form. If your child has any medications that need to be crushed, discuss with your doctors if there is a liquid, compounded, or dissolvable form that can be used.
Some hospitals do not let infants or children go home with nasal tubes. Discuss this with your doctor in advance (if possible).
Nasal tubes are intended for short-term use. They need to be changed every 3 days to 4 weeks, depending on the type of tube. If longer-term tube feeding is needed, it may be time to discuss a G-tube (gastrostomy tube) that is placed directly into the stomach.
Nasal tubes are highly visible since they are taped to the face. They may draw unwanted attention because few people know what they are. They may also be confused with oxygen, since that is the reference point most people have when they see a tube near the nose.
Life at Home with a Nasal Tube
Parents and caregivers can learn how to place, or 'drop,' an NG-tube at home. You will need to be taught by a medical professional, because the correct placement is very important. Learning to replace the tube yourself makes it a lot easier to do routine changes and replace a tube that gets pulled out at home. You will need to check the placement of the nasal tube after you insert it. It is a good idea to confirm placement before the start of each feed and if your child vomits forcefully. You can get more information on NG tube placement, including videos, on our NG Tube Placement and Verification page.
Taping the tube properly to the face can also make a world of difference. Learn how on our Taping Nasal Tubes page.
NJ-tubes, and some ND-tubes, need to be placed by a radiologist with X-ray guidance to ensure correct placement. They cannot be changed at home.
Questions to Ask
Will it be an NG-, ND-, or NJ-tube?
Will we leave the hospital with this tube?
What should I do if the tube is pulled out?
How long will this tube be in place?
How often do we need to replace it?
How do we replace it?
At what point do we need to consider a more permanent tube, such as a G-tube?
Do I need to check placement before feeding or giving medication?
How do I check the placement?
Gastrostomy (G) Tubes
The most common type of feeding tube is the gastrostomy (G) tube. G-tubes are placed through the abdominal wall into the stomach. This sounds scarier than it is. The G-tube surgery can be performed in three ways: surgically through small incisions using a laparoscope, surgically using a larger open incision, or endoscopically using a scope into the stomach to create the stoma from the inside. The endoscopic method has become the method of choice at many hospitals; however, some institutions still place tubes surgically, and children with anatomic abnormalities or who need other procedures may require a surgical placement. For more information on surgical placement, see our page on G-Tube Surgery.
There are a number of types of G-tubes. Any kind of G-tube can be placed initially. Often it is the surgeon or the gastroenterologist who determines the first type of G-tube placed.
PEG and Long Tubes
These are one-piece tubes held in place either by a retention balloon or by a bumper. They are often used as the initial G-tube for the first 8-12 weeks post-surgery. PEG specifically describes a long G-tube placed by endoscopy, and stands for percutaneous endoscopic gastrostomy. Sometimes the term PEG is used to describe all G-tubes. Surgeons may place other styles of long tubes.
Source: https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/g-tube/
Source: In the Image
Low Profile Tubes or Buttons
Source: https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/g-tube/
These tubes do not have a long tube permanently attached outside the stomach. Instead, they have a tube called an extension set that is attached for feeding or medication administration and then disconnected when not in use. When an extension set is not attached to the button, it lies fairly flat against the body. There are two types: balloon and non-balloon.
Balloon Buttons
Balloon buttons are held in place by a water-filled balloon. Balloon buttons are the most common G-tube for children once the stoma (G-tube site) is fully healed, usually in 2-3 months. The use of balloon buttons as a first G-tube is increasing among medical professionals. Balloon buttons can be replaced at home after caregiver training.
Non-Stop Balloon Buttons
Some surgeons and gastroenterologists prefer the first G-tube to be a non-balloon button. Non-balloon buttons are harder to pull out than balloon buttons. Non-balloon buttons cannot be replaced at home. They are placed in the doctor’s office or at the hospital, sometimes with sedation or a topical pain reliever.
Gastric Tube Considerations
G-tubes can be more comfortable than nasal tubes and are a safer option for longer-term tube feeding.
There are low profile, button-style G-tubes that aren’t as noticeable under clothing.
The balloon button G-tubes can be replaced at home by a trained parent or caregiver.
Balloon buttons and tubes typically need to be replaced every 3 months, while non-balloon buttons need to changed less often, between every 6 months to a year.
G-tubes need to be placed surgically or endoscopically, and there is a recovery period after.
Little hands may also pull out G-tubes.
A common complication of G-tubes is the formation of granulation tissue (which looks like red, overgrown tissue around the tube site) during the healing process. It isn’t dangerous but it can be painful and irritating. It may also bleed easily. For more information, see the Granulation Tissue page (NOTE: The link can be reached if you click on "Granulation Tissue" but I have also included the article below).
Granulation Tissue
Source: https://www.feedingtubeawareness.org/troubleshooting/tube-sites/granulation-tissue/
Granulation tissue is typically red or pink soft tissue that appears bumpy or almost bubbly in nature. It is the body’s attempt to heal the tube site. It can bleed very easily and may grow quite rapidly. However, while granulation tissue may be bothersome, it is not dangerous.
Your doctor can use Silver Nitrate to cauterize (or remove) the tissue, or may prescribe steroid creams, such as Triamcinolone (Kenalog) ointment. There are several different strengths of Triamcinolone cream, so ask for a stronger version if the low strength does not work. Silver Nitrate chemically “burns” off the granulation tissue already there, but does not prevent it from growing back. Make sure to cover the unaffected tissue around the stoma with petroleum jelly or a barrier cream to prevent damaging the healthy skin. It is normal for the granulation tissue to look brown and quite awful after having Silver Nitrate applied.
Another option for treatment is GranuLotion, an over-the-counter product that many parents use to help treat granulation tissue. Home remedies that may help include Tea Tree Oil, Maalox or another antacid, Calmoseptine Ointment, or aloe vera (fresh or gel form).
Stabilizing tubes and extensions can help by reducing friction at the tube site. You can tape them to the stomach or create a tab that can be pinned to a diaper or clothing by folding the tape back onto itself.
Keeping the area dry is extremely important to prevent granulation tissue. At first the site may leak. But within 4-6 weeks, the leakage should diminish. Some families prefer to keep the tube site open to air, some use gauze under the button, and some use cloth tube pads. Using G-tube pads can also help reduce friction and absorb leaks to keep the area dry. Certain types of dressings, such as Mepilex, may also be helpful.
Have your doctor check the sizing of the feeding tube, as an incorrectly sized tube can make granulation tissue worse.
Additional Resources:
Site Care Tips for Feeding Tube Stomas from Complex Child. This has wonderful information in it, It has tips on how to deal with yeast around the button/tube site, how to secure it, clean it, and dress it. This site has a lot of useful information in it, including how to handle a bacterial infection.
Granulation Tissue 101 from Feeding Raya. This blog contains pictures of Raya and how the mother deals with issues like granulation, and contains pictures. It is a wonderful resource for those new to feeding tubes or for seasoned veterans with questions.
Sizing for G-tubes
All G-tubes are sized by the width of the tube, which is measured using the French scale, across the diameter of the tube. G-tube buttons require a second measurement, in centimeters, based on the length of the tube’s stem (the part of the tube that is placed in the stoma or tube site). For example, a 16Fr 1.5cm tube has a French size (diameter) of 16 and a stem length of 1.5cm. The size is listed on MIC-KEY and AMT button G-tubes. G-tubes should have enough room between the tube and the skin to allow one or two coins to slide under. If the tube is pressing tightly against the skin or has much more room, your child may need a different stem size.
For more information about feeding tubes, please visit:
https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/
I also wanted to share some personal stories I received from people with different feeding tubes. I asked them a series of questions that I have been asked in my support groups many times, and they were kind enough to answer those questions and share their stories.
Kristin G. writes,
Stewart W. writes,
"I thought I'd let you know my experience with an NG tube.
My specialist and I decided that due to my on going weight loss (my nausea was so bad that all I was getting was a maximum of about 300 calories a day from Ensure Plus), I had to be admitted to the hospital for two weeks in order to get an NG tube.
The NG tube was fitted on that Friday after my admission, but it was not pleasant. I will say that swallowing afterwards did feel sore but nothing compared to an endoscopy. I was told by the doctor that some people do not tolerate them beforehand, and unfortunately I am one of those people.
Since being diagnosed with Gastroparesis, I have always noticed what feels like a lump in my throat. If I try to touch it, it makes my nausea worse. Furthermore, I am also being treated for polyps in my sinuses and these issues made the tube unbearable. I suffered from the worst headache I have ever had for three days straight, along with really bad nausea. I'm lucky that I'm not actually sick very much.
My stomach also had trouble with the feed itself and the pump was only set at 25ml per hour. However, even this caused stomach pain, burping, and diarrhea all night (had a fight with the nurses in the morning for not calling them. I was in a private room so had my own loo and just got on with it. I'm used to this anyway).
I saw the nutritionist on the second day and she had me sipping Ensure Plus, one 250ml every two hours, but it took an hour and a half to finish it.
On the third day, I eventually emailed my specialist and told him what was happening, all of the problems I was having with the tube. He said there was no point persevering further and to just get it removed. I'm in the UK but am lucky enough to have private health care, so you get answers to emails even at eight pm on a Sunday night. Otherwise, the nurses wouldn't be able to do anything without the doctor's approval, in which case I would have done it myself.
I honestly think I could have gotten used to the throat part if it wasn't for the blinding headache. I couldn't even lift my head off the pillow.
It even affected my state of mind and I felt really down. I was actually quite tearful. I even texted my wife and kids and told them I didn't want any visitors at first, but as soon as the tube came out, I was fine. It was weird.
Only 10 minutes after the removal my headache was almost completely gone I'm assuming it was irritating my sinuses and the nausea calmed back down to it's usual which seemed nothing in comparison.
We agreed that if I could get 1800 calories a day minimum, then I could go home within the week. I need 2400 but 1800 should stop me loosing weight, it's pretty much a 12 hour a day job as I need to take it so slowly.
My GI wants to see me in a week to discuss what we are going to do going forward as all I am having is Ensure plus , scandishake and coffee of course.
He has talked about a PEJ tube to bypass my stomach but we will see what happens.
Since coming home I have managed to keep my calorie intake up even just making my latte with fortified milk (unflavored scandishake)
650 calories per cup (go me 😁 ).
Unfortunately today the nausea is real bad so not much going in.
I don't want anybody to take my negative experience as the only outcome as the guy in the room next to me had no issues outside of slight discomfort for a day or two, which he said was helped by letting strepsils throat sweets dissolve in his mouth."
The people below were brave enough to share their pictures for Tubie Awareness Month. They gave me permission to post their pictures and I want to commend them for it. They are true warriors, really, anyone with a chronic illness is."
