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i need some in put on my daughter is eight she was diagnose with reflux she also has a phon-doe is totally depending on someone to do for her. my question is one day i put her on a for night feeding and moment later she has all fresh milk coming through her mouth, she is always aspirating in her sleep they now want to do a gj-tube.
i need help
Surgery Tube feeding Diabetes Gastroparesis Pneumonia Hernia Pain Paralysis Hiatal hernia
I am sorry to hear about your daughter. I am 30 years old and have been sick for over 15 years. I do not have a diagnosis. If I do not eat or drink I vomit 6-10 times a day. If I do eat or drink I vomit 10-20 times a day. Nothing stays down.
Because of all of this I have a "through the stomach GJ-Tube." Which means my feeding tube enters my body via the stomach and is threaded down into my intestines - this is where my formula is infused into.
I have what is called a "double-lumen" feeding tube. The easiest way to describe it is 2 tubes in one. The one port feeds me into my intestines and the other port allows me to drain the contents of my stomach into a drain bag (similar to a urinary bag).
Your daughter's doctor may or may not be planning on using the double lumen feeding tube. My old feeding tube only had the one port to feed me through.
The advantage of having a feeding tube that empties into the intestines is, it is rare to have the formula back up into the stomach, where it then has the potential of being aspirated.
A disadvantage is that you can't run the formula as quickly as you can when it is being infused into your stomach. Reason being that our intestines do not expand as much as our stomachs do. A GJ-Tube also has to be changed by a radiologist in order to ensure proper placement.
Since getting my GJ-tube, my life is 100 times better. Because I by-pass my stomach I do not vomit as much. Thanks to the fact that I can drain the bile out of my stomach, I vomit maybe once per week.
I hope this is helpful. Feel free to contact me, or ask questions. I will keep an eye on your post.
Wishing you and your daughter the best,
Shannon
thanks a lot shannon I will be praying for u she already has the g-tube . im trying to determine what are some of the side effect of the gj-tube i do know that u can't replace at home, like the g-tube i can replace it and take it out and clean area that would be infected sometime. have you had that problem were it started to leak around the open where the tube sits. from ur g-tube are ur gj-tube. please stay in touch.
I am sorry that your daughter is dealing with all of this. I do not have any experience with a gj-tube, but I have had separate g-tubes and j-tubes and have found the fact they are separate to work well for me. I have used the j-tube for feeding due to gastroparesis and a g-tube for drainage of stomach contents for relief and currently am feeding through it at night as my current j-tube does not work right. It may be possible to change both a separate j-tube and g-tube at home, as these can be easily changed at my surgeon's office simply be deflating the balloon that holds them in, taking them out, putting in a new one, and inflating the balloons to hold in the new ones although I am not completely sure as I have never done this myself. Is there a reason your doctor does not want to just put in a separate j-tube, especially as your daughter already has a g-tube? I will be sure to keep both you and your daughter in my thoughts and prayers. Many hugs.
Warm regards,
Bobbiejo
thanks bobbiejo that would be one of the question i will ask when i go to the dr next week. thanks again cause i was just lost not knowing what to do please stay in touch with me cause sometimes i feel like i want to break in half. i'll keep u guy in my prayers.
hi, im so sorry to hear about that. my 19 month had the same thing. he had the fundal plaction done and still continued to get sick, he also had a g-tube. his doctors finally put in a gj tube which now he is gaining weight and keeps formula down. the only issue we are having now is that he is throwing up stomach acids. i have come up with a quick fix which he is no longer choking or gagging on any fluids.
the thing im worried about is the color of the fluids coming out of his stomach. but the gj tube is god sent. hope this helps.
There is a strong advantage to separate j and g tubes. Because of the torc put on the j portion of the combo tubes, the interior end of the j tube can retroflex.... in other words, it pops out of the intestine and into the stomach. I had that happen several times. Since getting the separate tubes, I've had far fewer problems.
I'm sorry about your daughter. It sounds like she definitely needs a j-tube for feedings. This will bypass her stomach and most likely will prevent aspiration or prevent her from having the formula come back in her mouth. I would still have her be as upright as possible, though. She might still have some reflux from her intestines into her stomach like I do. The g-tube will be used for venting or draining her stomach if she does not feel well. I have a g/j-tube and it's a help. I wish you the best for your daughter!
Mimi
I have a GJ tube and really appreciate how I can put medicines and formula and extra fluids into the small intestine, where I am much less likely to throw it back up or become severely nauseated for the rest of the day. Though they say that GJ or J tubes rarely backflow to cause choking, I still sleep in a semi-upright position, and put my medicines in me in a reclined position. This is how a home health nurse showed me how to do this when I first started using a feeding tube in Feburary. I'd keep your daughter in a semi-upright position for a while after she is fed, so the contents will stay down via gravity.
As for the problem with GJ and J tubes migrating their way back to your stomach, I had this trouble when I first got a feeding tube and had a smaller FR size. Now that I have a larger FR size (22FR), I haven't had this happen. The only thing is the larger ones sometimes need to be changed more frequently, because they get really dirty inside after a while (at least mine does, despite flusing it several times a day).
Hope all this helps!
Jessie
Trevor has a mickey g/j. He's done very well with it. Like your daughter he had horrible reflux. 411 times in 24 hrs. He also has severe gp. He has gained weight and feels better,most of the time, with the g/j. The only down side is I can't change it at home.
Thinking of you,
Karen
www.caringbridge.org/visit/trevorlasure
thanks karenlas for your input im sorry to here that someone else has to go through this situation with there child i could be hard sometime. i will keep u guys in my prayers. also what is gp
thanks mimi i really have a lot of problem with her aspiration, that really worrie me. but did you no that a fundo increase the risk of having aspiration, that info was giving to me by my lung doctor. i will keep u n my prayers. think of you onjla
I just wanted to let you know what gp is and that I am continuing to keep you and your child in my thoughts and prayers. GP stands for gastroparesis which literally means paralysis of the stomach but overall indicates a slowing of stomach emptying such that food sits in the stomach longer than normal. I was diagnosed with gastroparesis about seven years. It can be caused by a variety of factors such as thyroid problems, diabetes, a virus, autoimmune disorders, abdominal surgeries, and some causes remain unknown and a person, like me, is said to have idiopathic gastroparesis because the reason for it is not yet discovered. The symptoms can present differently in different people, but I can tell you how it affected me. I have had trouble nausea, vomiting, easily getting full, weight loss, malnutrition. Although pain has never been a major issue for me, there are others with gastroparesis who do have this as a symptom. I think the gastroparesis has worsened my reflux since more tends to stay in the stomach and stimulate gastric secretion, but sometimes it is hard to find out what is causing what. I hope that this helps some. Please feel free to ask any questions you may have. I hope that your child's doctors are able to soon come up with ways so that she may feel better. Many, many hugs.
Warm regards,
Bobbiejo
Onjla:
I had no idea that a nissen caused more aspiration. I guess that maybe makes sense. I never had time to weigh the risks and benefits because I did not know I needed one. The surgeon was in there and saw the hiatal hernia and fixed it while he was in there. I'm glad he did, but I often wonder if his surgery caused the hiatal hernia. It's fine if it did - I know there are risks of any surgery, but just tell me. I also knew going in that no one really had experience with my type of problem, which is why the vascular surgeon had another surgeon operate with him. I guess the surgery was extremely interesting and the surgeon was supposed to give me a copy of the DVD but I forgot about it (and now I live in another state).
Mimi
I struggled with the idea as well. With a GJ you can't do large volume feeding but if you do a steady continuous feeding it can work well. Sounds like she probably can't tolerate large or fast feeds anyway.
I was nervous about the idea at first but once it was done I was very pleased. He's handled the feeds really well. The first week or two he had some bile reflux but it went away. One advantage with the GJ is that you can choose gastric or jejunal feeds/meds.
Whichever you feel she can handle. You can also drain the g port if needed while giving jejunal feedings. It can help alot if she has stomach issues or reflux.
Plus, if it doesn't work out and you don't want to keep it, switching back to a plain g tube is easy.
My three year old son is currently facing a change from G to J feeds. The docs will not consider a double lumen gj as they have not had good success on small children because the tube only comes in larger sizes. They are pushing for a separate surgical J tube. Anyone have any thoughts?
Thanks,
Genia
You may know all this already, but I didn't when I first had to deal with tube feeding, so here goes:
ALWAYS feed sitting up and have her sit up for at least a half hour after the feeding is done.
I found that mixing water with the pediasure [half and half] made it easier for my son to digest.
My son had a NISSEN FUNDOPLIFICATION that stops all vomiting. They do something to a flap in the tube between the mouth and stomach [esophagus?] that makes it so food can go DOWN but not back UP.
This has made it possible for us to feed him only 3X a day at 300cc/hr instead of those all night all day feeds.
I don't know if the operation for a fundoplification is a difficult one to go through though because he had it as a baby before we adopted him at 4 yrs old.
Hope this helps a little
Marilyn
My daughter has a Gtube with Nissen fundoplication. The Nissen IS a very difficult surgery for the older kiddos, and is known to cause hiatal hernias over time. Usually they close the hiatal hernia only if it becomes incarcerated or painful. OR, as in the case of my daughter's next surgery, they will close it when the go in to re-do the Nissen! The problem with the Nissen is that as the child (and subsequently the stomach) grows, the Nissen can become floppy and start to leak, or just blow altogether. This can also happen if you raise the rate of the feeding too quickly, and the child retches/gags a lot. My daughter has started to have a "floppy" Nissen and has a hiatal hernia. Neither is not bad enough to consider re-doing the Nissen yet, but it was bad enough to cause her to need a GJ tube in order to keep her from microaspirating at night. The GJ tube has its advantages, because your child will not need a whole new surgery (e.g.- like placing a surgical J tube), but like others have said, it can retrovert and cause leakage into the stomach anyway. Good luck with your decision...my risks/benefits decision was not well-explained to me!
i understand what you are going through. my daughter is 23, cp, with reflux . she had pneumonia twice, and they switched her from a g tube to a gj tube. i sure was glad. the feeding goes to the small intestine, by passes the stomach. I just have to drain the stomach contents once in a while. The only problems i have had is once in a while, it will clog, and tube will break if you try to flush to hard if its clogged. And for a while the bulb kept busting, but i think we have worked through that. I give her feeds and meds through the j port. its very convenient. i also keep her upright all of the time, because she is on the feeding pump most of the time. When I give meds through the j port, i keep her straight up in chair for at least an hour afterwards. Overall, i like the gj tube. Be praying for you. Since having the gj, reflux has decreased a lot.
Angela
Hi,
I'm new to the forum, but I have a question. My daughter is 14 she has CP (she has undiagnosed developmental delay) She has had a g-tube for years and also a fundo but it is only partially intact, she has a kidney stone disease an throws up often when she is having a kidney stone attack and also severe reflux so I'm sure some of the vomiting is due to this as well. The GI has recommended that we try a G-J tube. I'm not convinced this is the best course of action but the GI says we have tried everything to decrease the vomiting. She has lost a few pounds over the last 6 to 8 months. I'm just really uncertain what to do??? So if I could get some feedback on the G-J tube, I would really appreciate it.
Hi Genia
My 3 year old has a GJ tube and he is very small for his age, The G tube is a Fr15 and the J is a 9. So far we have had no problems of it migrating.
He is definately more comfortable being J fed. His intestinal motility is also slow so we get a lot of bile refluxing back into the tube (he has a long tube JPEG) but we run his feed at 70mls anhour in the day and 55 at night.
Good luck with it all
helen
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