Nasojejunal Feeding Tube (NJ Tube)Jejunal Feeding TubeEmergency (surgically placed and stitched in) TubeLow-Profile J-Tube (Mic-Key)

Back when I failed all attempts to cure or control my gastroparesis through medication, I was losing weight, and losing it fast. My blood tests were not very encouraging either. I would not be a candidate for the gastric neurostimulator surgery at such a low weight (95 pounds at 5’6″), so my doctor decided to place an tube in order to get my weight up for surgery. This was placed back in November, 2009.

Because it is a Nasojejunal feeding tube and not a nasogastric feeding tube, it must be placed with the aid of a flouroscopy machine, a type of moving x-ray, in order to confirm correct placement of the tube in the upper jejunum (the second section of your small intestine). For me, I was given sedation for the procedure. I was not awake nor do I remember any part of the procedure. I recommend this method if anyone is looking to have an NJ tube placed. I woke up an hour after the procedure with a tube taped to my face and was able to go home shortly after. No hospital stay required and it was done by my gastroenterologist. Later that evening my home care company came by to teach me how to use the tube, how to fill my bag with formula and taught me how to use and set the pump to the volume and time I needed. It was a dietician that came to my house that night, so she knew how much and how fast to feed. It was really easy.

My NJ tube came with many complications, however. It was constantly kinking up. The end of the tube would flop over on itself, preventing formula from flowing through it. When I realized that I couldn’t get formula through my tube, I scheduled appointments with my gastroenterologist, who then took x-rays to check the position of my tube and to look for kinks. Each time, one was found, and each time it was in a place that could not be unkinked without a straight up replacement of the tube. When I required a new tube, I required sedation and a day of recovery. This happened each month during the excruciatingly long 6 months I had the NJ tube. I suffered sinus pain during my use of the NJ feeding tube as well as ear and throat pain. Only a new tube seemed to calm the pain, even if it only lasted a few days – I enjoyed being pain-free.

An NJ feeding tube is not meant to be used for such an extended period of time and after a few months I began asking for a permanent feeding tube to be placed. They were confident that when I got my gastric neurostimulator, I’d be able to maintain my own weight and nutritional status through oral feedings alone. So I endured more months with this tube but a few months after the stimulator was placed and I still felt I could not keep my weight up without the tube, my doctor ordered a permanent jejunostomy feeding tube. On April 8th, 2010, I received my long-awaited jejunostomy feeding tube via endoscopy (it was placed endoscopically versus an open procedure).

My feeding tube was placed under sedation as well. It required an over-night hospital stay. It surprisingly was not sore at all. I had to wait 24 hours before I was able to feed using the tube. I didn’t use any dressing on it once the surgical dressing was removed shortly after I got home. I was told that keeping it dry and clean was the best thing for it and to not suffocate it with layers of gauze and tape. My tube is held in place with a non-balloon bumper, so I was told to never twist the outside tube around. I was also told not to move the external bumper closer to the skin as that would bring my intestine up to the abdominal wall and possibly cut off circulation to that part of the intestine, resulting in tissue death and even more serious complications. Alrighty, don’t touch the bumper! Got it. I was just excited to finally have the tube out of my nose even if it was simply exchanged for one in the abdomen.

Because I was previously feeding with a nasojejunal tube, nothing about the schedule, rate, formula or even connectors changed. I still use a christmas tree adapter from the feeding bag itself which connects into a Bard 333 that is connected to my size 22FR feeding tube.

This adapter is able to be changed out when it either no longer works or gets too dirty. Sometimes the caps on top become loose or fluid collects in it, causing it to smell something foul. When it is changed out you just unscrew it from the tube, trim the tube if necessary, and pop in another one. My connector has 2 ports. The bigger one I plug the christmas tree adapter feeding tube into, and the other smaller port I use to flush medicine through.

I also use a hose clamp to make sure that when the ports are open for medicine or closed when not feeding, that everything on the inside of me, stays on the inside of me. It really only takes one mistake of leaving it open to learn to keep it closed. Intestinal fluid will come rushing out like an exploding volcano and you will quickly realize what happened and rush to clamp it shut. Getting a hold of these for replacement is difficult but you really shouldn’t ever need it replaced anyway.

The top shows a slight infection, which I am still fighting with antibiotics and a follow-up with my gastroenterologist, and when it gets infected, I think it is best to leave the stoma undressed. But, when it is healthy I find these Cloth G-Tube pads to be wonderful. I get the girl patterns just to have fun with stoma dressing. You take it where you can get it. I’ve invested in a few of these and since they are machine washable, I haven’t had to use gauze ever. These things really do keep the moisture and other gunk that leaks from the site, clean and away from the skin. I recommend them to everyone with a tube stoma!

This is sort of the setup I run when I’m at home and am using a pole. I sport the Zevex Enteralite Infinity pump. It is amazing. It is quiet, accurate, and will run in just about any position with an excellent battery life of 24 hours at a rate of 120ml/hr. I also use their mini and regular backpack for when I need to take my pump and feed while outside the house. I don’t feel I am limited at all in any activity and have even rock climbed while feeding. I’ve also invested in Tummy Tunnels, while out and about with my tube. It makes accessing my tube easier and also keeps it from pulling on the site.

Feeding by tube isn’t the best situation one finds oneself in, but it definitely isn’t the worst either. You do what you need to do to live and it just becomes a new normal. Feeding by tube has saved my life as well as time in the ER and I am just thankful to have it.

  • 29 Responses

  • Emilie says...

    Hi!:) I have had gastroparesis for years now and still cannot mamange it amd struggle every day! I am on a pure liquid diet but even then I struggle with that! I was considering getting a j tube andhad a few questions about your experience. Does the tubeget caught in your clothes and pull and hurt? Can you still sleep on your stomach? What about go swimming? Do you feel hunger pains? Can you exercise or do abb workouts? Do you find it hard to manage with work and an outside life? Im sorry for having so many questions it makes me very nervous but I am just desperate to get better!! Has the j tube allowed for releif of symptoms? Are you still devolitated by gastroparesis on a daily basis?

    Thank you soo much for your help!!

  • kathleen florea says...

    hi–thank you for sharing your story. i have had an nj tube for a month now and was just told i had to keep it in until i gain enough weight to support my getting a gj tube (because a low weight could prolong healing and put me at higher risk for infection). it has been increasingly uncomfortable of late and i am not tolerating my increasing formula as well this week due to pain and cramping. my nose seems to getting more congested and drains regularly on the tube side. there has been no talk of them replacing this one out…even though it could be in for another whole month or more given how much weight i have to gain. is this common? i know it really should not be left in for more than about 3 weeks if possible.

  • Donnajo says...

    Hi Kirby and everyone all your stories have helped me so much. I feel better know that there is a group where I can go and read all of your stories. I am going through the same ordeal here. I have a feeding tube in my belly along with a drain on the other side of my belly. I have had multiple surgeries but this last one was the worst. I have had numerous ulcers and blockages along with a hole in my intestines. I was eating fine after the surgery but the Dr. now tells me I need to start using the feeding tube and nothing by mouth. I really don’t know how to feel about this. I am scheduled to start in three days from today.. I just want to say thank you for all of your stories I have a better perspective on this I think.. Lol Have a great holiday weekend…
    DJ

  • Teresa says...

    Hi Kirby! I just wanted to thank you for putting your site together and tell you what a superior job you have done in educating others about GP! My husband has suffered with it since the 1980’s and we’ve come to the point where we are seeing the hospital stays of 4 or 5 days about every 6 weeks. He is down to just under 120 pounds for a 5’8 frame. He has a double power port because the IV’s were killing him with frequency! I am trying to explore feeding tubes and would think that the J tube is the best of all, as it looks like you have come to discover as well. It looks like it’s been a year since you did that. How is it for you now? Do you still eat any regular food and if so, what do you eat. My husband is now living on Cream of wheat and soup and he has a protein shake in the morning. It’s just not enough, especially for protein. He doesn’t say he’s in pain but he is doubled up in a fetal position much of the time. He cannot take any of the usual meds because he has grown intolerant including those purchased outside the U.S. Can you explain the button you spoke of and is there a reason why you didn’t get it? He is very sensitive about having this done; He doesn’t seem to think it will help, and I want to find out as much as I can to save his life for our family. Please respond if you can to my email: teesaterry@yahoo.com Thanks again and best wishes to you!

  • Kirby says...

    I had mine in for 6 months and had it replaced due to my awesome backwards peristalsis forcing kinks, 6 times within those months. Once my body settled a bit, I was able to get my pacer and later they placed a j-tube. I have heard of people having a j-tube for nearly a year. THAT is wrong. If someone tells you differently, I suggest you don’t see them or simply confront them about it. It is all about doing what you know is best for you! Remember not to hold doctors on a pedestal, they don’t know everything. And that’s understandable as well as them making mistakes. It happens. But they need to take responsibility instead of blaming patients. That was random. Hope you got something from it. Also sorry I didn’t get back to you. I’ve spent a lot of time this year in the hospital and am still fighting to feel better after things that came around this year. I hope you are feeling better, doing better, enjoying life.

  • Kit says...

    Dear Kirby

    I rarely comment on websites these days but I wanted to thank you for clarifying something very important in my mind. My diagnosis (courtesy of the British NHS after 4 years of trying to get someone to take an interest in the fact I had lost a third of my normal body weight) is hypersensitivity, ie meaningless. I’ve had an NJ tube installed for 3 months and am not due to be reviewed for another 2 months. The feeding began well but now it seems my bowel has fallen victim to the same ‘sensitivity’ as my stomach, responding badly to every tube feed (vast amounts of gas, nausea, cramping pain), along with throat soreness/pressure sore, constant sinus outrage/drip. My Gastro’s mantra has been ‘There’s nothing else I can do for you’. Well, I am going to put that to the test. I have lost most of the weight I gained early on and now I have decided to request the removal the tube in the New Year. Either they come up with something better or I starve to death. But this is not a life I can live, and the medics need to do a lot better. Not a suicide bid, really not, but a desire to have a life back.

    I wish you well and hope 2016 means you see far less of hospitals and doctors. Your story has spoken to a lot of people who haven’t seen themselves represented anywhere else.

  • Kelly says...

    Thanx for info im really scared of tube feeding i was tube fed for 3 months 4 yr ago. And its been talked about know and im really worried im not under weight but have lost ovet 1st in a few weeks and since a weeks hospital stay am finding it difficult to keep things down. My mind is a bit all over the place. But your page is really good x

  • Katie says...

    I’ve had an NJ tube for a month now. I’m a college student and a busy one. Aside from waking up at the 5 hour mark to change out the formula, the tube (like it did for you) gets kinked every time I roll over at night and beeps at me constantly. I haven’t had a full night’s sleep since the day I got the tube. To say the least, I’m exhausted. How did you deal with this?

  • Kirby says...

    Agree 100%. Sometimes we are being starved to death by our doctors from their complete ignorance regarding our lives. We live with this every day. We know. They don’t. And I put it ultimately against quality of life vs quantity of life. Right now it seems to me that I’m simply “existing” with a very low quol. I accept risks that come with treatments just because I want to get better and move on with my life and at the same time I get frustrated to a level so very few would understand, when I know what helps but have no access to it.

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