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Saturday, June 20, 2009

All About GJ-tubes

Please Note: This is a Parent-to-Parent Conversation about my experience in caring for my daughter who has been tube fed for the last 8 years. It is not a substitute for consulting your physician about how to proceed with your own child or loved one.

GJ-tubes (Transgastric feeding tubes) are similar to G-tubes in that they provide a way to deliver nutrition to a person who is unable to ingest their daily nutritional requirements orally. This type of feeding tube uses the same stoma created by the G-tube if the patient has already been using a feeding tube. No further surgical procedures are needed to switch to this type of tube. (That's the good news!) They are called GJ-tubes because there are two separate routes included inside the feeding tube. One route is delivered into the stomach. The other route is delivered into the small intestines (also known as the jejunum, hence the "J").

A person might need a combination tube like this if their stomach can only handle small amounts of formula, medication, or water. Megan can only handle her medications and water amounts in her "G" port. She receives her formula feeding through her "J" port. Physicians may also elect to prescribe a GJ-tube for a patient even if the person cannot digest anything through their stomach because the "G" port can also serve as a way to minimize air build-up in the stomach. The "G" port would allow a person with this problem to "burp" easier.

Because the "J" part of the feeding tube is threaded into the jejunum, GJ-tubes are placed in the x-ray department of your medical facility under flouroscopy (this is like a video x-ray machine). The "J" portion of the feeding tube that is inserted into the body is much longer because it has to be threaded through the stomach and then a bit further into the small intestines to prevent it from retracting back into the stomach. The nutrition totally bypasses the stomach and directly enters the small intestines instead.
This is a Low Profile GJ-tube in its entirety. There are two holes in the tube just below the "balloon" that release contents into the stomach. Then, there are two holes in the end of the tube that release contents into the intestines.


This is the front view of Megan's low profile Mic-Key GJ tube. We chose this type again because it was most similar to what we were already used to. There are two extensions attached to it because she was eating when this picture was taken.
This is the side view. The "G" port is on the left side. The "J" port is on the top. The cover that closes them is one piece. They either have to both be closed or open. Because she feeds for 10 hours a day, we always keep an extension attached to the "G" port with it clamped to keep from leaking stomach contents. The "balloon" inflation device is on the far right.

This type of GJ-tube also requires the use of the syringes, feeding bags, and extensions mentioned in the All About G-tubes post.

If a person had a G-tube to begin with, the formula used for nutrition will probably change when this new tube is placed. Megan was switched from Pediasure to Peptamen Jr. There is also a version of the Peptamen for adults. This is because the new formula is more elemental, broken down into smaller units chemically. Normally, when food is ingested the stomach produces gastric juices that breaks nutrients down to start the digestion process. Since the J-tube bypasses the stomach, the formula needs to be partially digested for the small intestines to be able to process it.

Additionally, the formula may no longer be fed in "boluses," larger amounts that represent a mealtime. The small intestines do not have the capacity to hold large amounts of formula until it can be absorbed and used nutritionally. This is ultimately the stomach's job. The stomach is supposed to be the holding tank and the intestines are to take and use the nutrients in the speed they are able to digest them.

Therefore, the speed at which a person can be fed into the J-tube is much slower. When Megan had her G-tube, we could feed her six ounces of formula within about a five minute period. Her stomach was slow to empty and we fed her each "meal" five hours apart. When she got her J-tube the fastest rate we were able to feed her was about three ounces per hour, or 90-100ml per hour. When spaced evenly over the hour, this breaks down to be about 5-8ml every five minutes. When the Dr. told me this, my first thought was, "You mean I have to feed her a teaspoon of formula every five minutes all day long?" The Dr. said, "Yes, but no. The feeding pump that you use during the night will be used during the day now."

Megan needed 1000ml per day of the new formula (33oz). The Dr. prescribed her pump to run at a rate of 100ml per hour. So, she would be "hooked up" to the feeding pump for about 10 hours per day. We were given the choice as to which time we started feeding her. We decided that we could call her morning medication regimen "breakfast" and chose to start her "lunch/dinner" at 12:00pm because that is when lunch begins at school. Megan would be able to start her feeding the same time as her peers and finish around 10:00pm.

Wait a second! "If Megan's pump only has a battery life of about two hours, will she be chained to a power outlet all day? That would suck." Luckily, the Dr.'s answer was that there was a feeding pump that was a small device that charged while it was placed in its base on an IV pole during the night and the battery lasted about 12 hours. We could take the pump and feeding bag and place them into a backpack that could sit on the floor near the couch or hang on the back of her wheelchair if she was at school or out in the community with the rest of the family. The Dr. said that she would contact the medical equipment company and let them know to change our Kangaroo pump that was stationary with this new Kangaroo Pet pump.

Backpack shown with pumpPump shown as larger image

Whew, what a relief that was.

Note: You can also choose this style of GJ-tube. The "G" port is on the right and the "J" port is the larger port in the middle. The balloon inflation device is on the far left. There is no separate medication port with this tube. We started with this type of GJ tube in 2003 when Megan first got hers placed. This type of tube does not require extensions either. You just attach a syringe or feeding bag cap into the port of choice.

(In my experience, it is easier to accidently pull this tube out than the "button" style. I experienced it twice-OOPS). Megan got her GJ-tube right before the "button" style GJ-tubes were being introduced. As soon as they were introduced, we switched models right away. Didn't want any more oopsies.

If this tube is accidentally pulled out or breaks, the parent cannot replace it at home. The parent is only able to place their regular G-tube kit and call their physician for an order to place a new GJ-tube in your flouroscopy lab. This is a major hassle. If the tube comes out over the weekend, the person may need to be hospitalized for fluids until they can get a new one placed in flouroscopy, especially if they are unable to tolerate any G-tube feeds at all.

Megan has a clinic that she visits every six months for "check-ups" with the Neurologist, Developmental Pediatrician, Orthopedic Doctor, Pulmonologist, and any rehab therapists we have questions for. This is usually a morning appointment and we schedule a GJ-tube change in the afternoon on these clinic days twice a year. It is necessary to change them out every six to nine months because the bodily fluids are hard on the tubing on the inside. We do not want the bodily fluids to break the tubing down or apart. It would take surgery to remove any "spare pieces" of the tube if they are left in the body. We have not had any problems of this sort with her GJ-tubes throughout the years using this schedule. Until last Friday Evening, that is!

Go Ahead. Click that link. I know you are dying to be "in the know" now.

14 comments:

Lisa said...

Thank you so much for this post! My son just had his g-j tube placed and can for ward this post to family members who have questions. :)

Your daughters are beautiful!

queenie queen said...

just wont to get more info on the gj tube

queenie queen said...

HI MY NAME IS DERRINA MY CHILD NYLAH IS GOIN TO GET THE GJ TUBE DONE TOMORROW I'M WORRIED ABOUT IT ALL i really don't know what it is and how it works i know the doctor are goin to show us how it works but i just won't to get some support on the matter you can email at ohiotoniomonea@yahoo.com
thank hope to hear from you soon

Brandis said...

Thank you SO MUCH for this post! My 9 month old had a G tube placed 3 weeks ago & we're exploring the possibility of a GJ. I've been looking for some useful information about GJ tubes (you know, from a Mom's perspective, not the standard textbook information) and this helped a lot. I haven't had a chance to read anything else about your sweet daughter but as a mom of a baby with medical issues of yet-to-be-determined causes, I really appreciate other moms who are willing to put their stories out there, even when they include the loss of a beautiful girl like your Megan. Thanks again!

Poohprincess said...

Thanks so much for your blog.  I have one child who was on a g-tube 20 years ago and now eats many small meals each day.  Now another child just got a g/j tube.  I am so happy as he hated eating and is 22 yrs old.  I have problems keeping the tube from getting blocked.  Any ideas??

Jenny_nicole_s1979 said...

My daughter has had a g tube for 6 months but the did not do the fundaplication with it. She is very active but we just found out 2 weeks ago that she has severe epilepsy and the GI doc wants to do a GJ tube because she aspirates due to reflux....I've been told once they go to the GJ tube, its hard to ever take them off because the stomach has been bipassed for so long and "forgets" how to properly function as does the small intestine after its been "fed" for so long. Personally, I'm against it in my daughters case because she is so active. She can't handle bolus feedings now because they come out of her mouth as they go into her stomach but I just feel that I would be sentencing her to a life tied to tubes and to the backpack...is what I'm being told by nurses true or no???

joan jones said...

my daughter just got a G/J tube this morning, she has pancreatitis from spinal fusion, I was looking for info to send to my blog and fb..this post is exactly what I was looking for. very good info..I hope it's ok if I send others to this page from my blog? my blog is http://joansblessings.blogspot.com/
joan & hannah grace
this post came searching on swagbucks, thanks for writing it

liliana said...

im so glad the gj tube worked for u i'm still thinking about placing my dougther one or if i just leave the g tube...

Charpogal said...

Thanks for nice dscription, I just got G J  tube couple days ago for my 6 years old daughter, so far she is doing ok with this. But Dr told me I have to feed her 70 ml/hour. Its little bit dificult because almost whole day and night i have to feed her.anyway could I get your e mail address then we can share some new issues ( If you dont mind). Thanks again.  

Mandyle1475 said...

What happens to the stomach when you try to go back to the G tube if there has not been any food going into the stomach for a long period of time?  I ask this because we hope that someday our daugher will be an oral feeder. We are trying to decide if we should try the GJ tube, hoping that it will cure her vomiting. 

SpecNeedsLife said...

Hi,

This is Lori from the blog "Our Special Needs Life" (Megan's Mom). Our goal was to try to get our daughter back to G-tube feedings after using the G-J tube but were never successful. However, it is more due to the fact that she had a degenerative disease. I was never told that that goal wasn't possible. We were told in the beginning that it could be a temporary option to give the stomach a rest and then try to increase feedings to the stomach as it allowed. You doctor can let you know what their feeling is on this as well. I wish you luck and will pray for your family as you make this decision.

Lori

Lois said...

Very good but still have questions.  Our J-tube is getting clogged regularly even though we flush it once per hour, and seems to "burst" and need to be replaced about every three weeks.  We use the second type listed above.  We have Sodium Bicarb & Creon which we put down and works "sometimes."  It seems the G-tube is inside the J tube (I used to think it was reversed).  I can't understand how the G-tube ends in the stomach if it is "inside" the longer J-tube which continues to the colon?

marge said...

where can our doctor get one we have been told there is a national shortage my grandson needs one asap he is being feed through a pic line in his arm
ocmarge@aol.com

Leigh said...

Thank you so much for the info. I had asked a few nurses about a low profile gj tube. Half said yes there was one and the others said there was not. We just switched from a low profile mickey gtube to a gj tube with the long tube attached. I would like to see if they can use the low profile gj tube as this one we do not like. Thank you for being a beacon of hope out there for parents who feel lost.