J- tube confusion

• By KarenWilliams
• Posted October 9, 2008 at 5:45 am

I had a PEG-J first that is a stoma into the stomach with a fine tube threaded down throuhg that into the jejunum, so feed bypasses the stomach. Because the tube is so fine it blocked frequently and had to be replaced under sedation. I would often have to wait a couple of weeks after it blocked to get an appointment to replace it so I felt awful for those two weeks.
In February I had a PEJ put in which goes directly into the jeunum. Initially a tube that was about 15cms long was in place until the site healed. I now have a low profile button which is kept in place by a small balloon on the inside which is filled with water. As the intestines are fairly narrow the balloon can't be filled very much so it is vulnerable to falling out (it hasn't happened to me yet).
There are lots of options of tubes and methods of securing them. Explain really clearly what you want from your tube and I hope that your Doctor will listen, and find something which suits you.
Good luck.

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• By MarieTwinTubes
• Posted October 9, 2008 at 9:02 am

Hi, SeussRN1.

What were your main problems with the g-tube? What formula(s) were you on? I had some seemingly endless problems for the first year after my initial g-tube placement. Finally through searching on my own and finding Oley and being bullishly persistent with medical folks, I have greatly simplified my routine and my stomach does very well with FiberSource HN.

If you can tell us a little more, maybe we can share some things that might help.

My best to you. Marie

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• By Sanford
• Posted October 10, 2008 at 9:16 am

I've had combination g-j tubes (the j portion regularly retroflexed), and now have separate g and j tubes. Over the course of the years, I've started using only tubes from specific manufacturer (because I know they work) and in fact, show up for my tube swaps every 4 months with replacements in hand. I know people who swear by the button tubes; I've never had one. Unfortunately, there is some trial and error involved in figuring out which type of tube you'll prefer.

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• By ClarksMom
• Posted October 10, 2008 at 9:49 pm

My son is healing from 3 major intestinal surgeries in a 3 week period. It has been such an awful time for him and us. He currently has a gj tube that was placed thru his original g tube site. The j tube is currently curled up inside his tummy, which is where it is NOT supposed to be. :( His tummy is paralyzed from the first surgery(an ileostomy & total removal of his entire colon) and the last 2 didn't help the situation at all. So, until he can heal and regain much of his strength, we are doing TPN and waiting for him to be able to tolerate surgery for a permanent j tube placement. I have read about a low profile buttonfor a j tube that looks just like his Mic-key button. I hope he can have one eventually. When he first got his g tube, it was like a foley cath. Then, after a few weeks healing, he had that replaced with the low profile Mic-key button. Keep us posted on what you decide to do. Clark is has been on Nutren 1.5 and has tolerated it for years. But, for now, TPN is all he can tolerate. Good luck!

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• By alphabubo
• Posted October 11, 2008 at 8:46 am

All the j-tube I have had have been separate ones and have all been held in by balloons. I have had ones made from different materials such as latex or silicone. Probably the one I liked the least was the one that was like that used in a foley catheter because it just did not seem to hold up as well over time. I also had some tubes that had rings that went just over the surface of the skin that helped to keep the tube from moving in and out so much from the site. My favorite type though has been the mic-key button which is a g-tube but in my case has been used as a j-tube. I like it because you can detach most of the tube when you are not using it so that it is much less visible and bothersome. There are quite a wide variety of formulas available out there, depending on what your needs are, for example, some have fiber, some are more calorically dense, some are made to be absorbed more easily. Hopefully you can find one that works better for you. I have found that I need one with some fiber in it.

I have also had experience with ports, having had several. They are usual put in through an outpatient procedure and are accessed through a needle. When I had mine, I was on TPN 24 hours a day so I always needed access, but if you need it less, the needle can be taken out. I prefered it to the PICC line just because it made it easier to deal with the lines during tasks such as changing clothes when the lines were coming from the chest rather than the arm. I also believe that the port is supposed to be a little bit more permanent than the PICC line if I remember rightly.

I hope that you can find something that will work for you and help you to regain back your strength. I will be sure to keep you in my thoughts and prayers, and please feel to ask any more questions that you might have. Best of wishes.

Warm regards,
Bobbiejo

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• By oleyfriends
• Posted October 14, 2008 at 9:32 am

I am not on tube feedings, but as an Oley Foundation staff member I recommend reading the three short articles listed below. They are found in the Tube Feeding Tips page on the Oley website (www.oley.org).

PEJ tube information -- http://www.oley.org/lifeline/matubetalk.html

New tube information -- http://www.oley.org/lifeline/Newtubeorcatheter.html

No Pain with J-tube placement -- http://www.oley.org/lifeline/sotube.html

At least one manufacturer, Kimberly-Clark, makes a low-profile j-tube. You can read more at their website (http://www.kchealthcare.com/productpromosite/mickey/www/Index.asp?action=Pr oductDetails&id=2085).

If you are interested I can also send you a fairly recent listing of all available feeding tubes. Just send your email or street address to dahlr@mail.amc.edu, and write "feeding tube list" in the subject line. I can also put you in touch with more people on J-tubes, if that would be helpful.

Roslyn Dahl
Oley Staff

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• By josada
• Posted November 6, 2008 at 9:11 am

Has anyone with a J tube been able to do bolus feeds?
Has anyone been to Mayo Clinic in Florida for gastroparesis

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• By TTNZ
• Posted November 8, 2008 at 4:06 pm

My son has a G/J-Tube which is made by Kimberly-Clark. It is a Mic-Key low profile tube. It does need to be replaced under anesthesia about every 4-6 months. He hasn't had any problems with this tube and it's much better than some of the other tubes he's had. I just asked him and he said he like his tube and it doesn't hurt. He's five.

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• By lindalee
• Posted November 10, 2008 at 10:11 pm

My first J tube was also sewed in place. I got the tube caught on a drawer and the whole thing ripped out. The doctor put in a Mick 14 french tube with a balloon on the end and it is so much nicer. Doesn't even hurt like the other one did. I have had this since 2005 and can even replace it myself now. I know when it is not in properly and will go to the ER for an x-ray just to be on the safe side.

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• By lindalee
• Posted November 10, 2008 at 10:14 pm

I forgot to mention. I have post-surgical gastroparesis and have tried many, many formulas. The one that is the best for me is Vivonex Plus. It is a dry powder that I mix with water. It is quite expensive though so don't know if that is an issue.

I also know that with gastroparesis, it is important to have low fat and low fiber and the Vivonex is the lowest in both of those areas.

Hope this helps.

Linda

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• By LindaRose
• Posted November 12, 2008 at 9:36 am

Hi: Just thought I'd add some info for you regarding J-tubes...might be of interest to others as well. My daughter had a G-J tube and she experienced the same difficulty others have mentioned. It retroflexed right back into her stomach regularly, tying up in knots even! So it was useless for her. She then had a straight Jejunostomy, direct to the jejunum, and the surgeon used a long dangling tube that was forever sliding back & forth, agravating the stoma track, leaking bile, and getting caught on things. I was unable to find an actual J-tube that was a low-profile tube, but I really wanted one for her. Unfortunately, almost all of the low-profile G-tubes have a balloon inside to hold them in place, and my daughter has such severe obstructive disease, that it did not seem safe to put a balloon in her small bowel, even if it was only minimally filled. We didn't want to create any further obstruction than she already experiences. What I was finally able to find was a low-profile G-tube, that has a "semi-rigid mushroom tip". This tip has holes in it, so matter can pass through it. The tip is also quite small, so in and of itself, it does not take up much space in her small bowel. It was easily inserted through her Jejunostomy track when the long tube was removed. It must be inserted by a radiologist, who uses a rigid protractor to stretch out the mushroom tip. There is a risk of puncture of the bowel wall if you cannot see what you are doing, so patients do not exchange their own tubes. The radiologist uses flouroscopy (live x-ray) to see what he/she is doing while inserting. It hurts a little to exchange the tube, but my daughter often uses local freezing at the site and this helps. She does not need anaesthetic for this procedure, although there are so many other procedures that she cannot have done without it. It is extremely easy to access. We have been completely satisfied with this tube, and she has used this type of tube for at least 8 years now. It is made by Cook, and is called a "Passport-20" . It comes in various lengths, but only one diameter...20French. Hope this is of some help. LindaRose

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