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.

  • 21 Responses

  • Eli Halifax says...

    I was trying to remember how I found your post – Living with Gastroparesis » Tubes – but I’m not sure. I think other people may be interested in it as well, so I bookmarked this page – http://livingwithgp.com/?page_id=83 – on Digg.com. I hope this is ok.

  • Kirby says...

    Thanks – I thought I changed the site over to something else but I guess it never went through. I’ll update it now :)

  • Matt says...

    Thanks for sharing your story:) I have struggled with acute Pancreatitis for about 8 years now and i have just begun with a nasojejunal feeding tube for about 2 weeks now. It has been more mentally tough than physically, and hearing a story similar to mine really helps. God Bless you and Good luck I will pray for U also.

  • Kirby says...

    Hey Matt!

    I’m glad you found my site. I love hearing how my story sharing and information I research helps people like you, to feel comfortable and less stressed about a new disease that was diagnosed. It is such a new disease in and of itself, that we, the patients, often know more of the disease than the doctors do while making the diagnosis. This, I think, is somewhat due to the fact that we are able to share our personal stories and experiences with others. Doctors do not have that luxury.

    Do you know how long you are expected to keep the NJ tube in? I had mine for an excruciating 6 months with as many tube changes due to kinks (not blockages – it would fold over itself and pinch off, usually near the end of the tube, making it impossible to fix without completely replacing it…more sedation!). I don’t recommend you keep it in longer than 3 weeks at most unless this is just an extremely temporary thing. Is it, or are they talking about placing a permanent feeding tube? I’ve said it tons of times before – my favorite tube is the Bard tube. It can be seen on my tubes page. It didn’t have a balloon for an internal bumper, no stitches and it was a lot more flexible. The little bumper on the inside was so small and flat so it caused zero irritation in my intestine. Only downfall is that it must be placed with the aid of flouroscope; you’d need to be sedated like an EGD. The tube goes through your mouth and then they have a light at the end of the instrument with the feeding tube that you can see from the outside. Once it is in a good position, they poke a hole and string the rest of the tube through your mouth and out that hole until the bumper reaches the intestine. Excess tubing is clipped and then you’re done! For a jejunostomy, however, I’d probably get a button eventually. They are smaller, cuter and easy to keep clean (no fluid stuck in the tube part outside your body – for me that fluid often caused foul smells, embarrassing!). Not for G tubes. Gastrectomies (I might have just made up a word) should have normal longer thicker tubes for optimal drainage. I also wouldn’t combine a G and J tube together, as a lot of people do. Again, it makes it harder to drain the stomach and the J part of the tube will often flip back up into the stomach because of our poor working intestines. Having it happen a lot is horribly inconvenient and often painful if you have GP and you are feeding formula into a non-working stomach.

    Wow, it is really late and I’m exhausted. All my holiday decorations are up in my house and it is starting to feel like the holidays. I hope GP/CIP doesn’t take away my Christmas like it did last year. I’m sure it will all be just fine. Thanks for the comment, Matt. Keep me updated if you want, on how things progress and if you need to vent or have questions – I’m always around :)

  • Matt says...

    Hey Kirby,
    I thought I would give you an update. I still have the Nasojejunal tube and i haven’t had any kinks or complications yet! ( other than the annoying issue of having a tube coming out of my head!) I am hoping to be able to eat by mouth again in a month if I am lucky. It all depends on if my pancrease heals properly or not. I have only gained a couple of pounds back the month I have been on enternal feed, but I was i rough shape to start. I know that mentally I feel a lot better than the start, but I have some body issue’s in my head over the tube. All in all life is getting better even though I was pretty sad on thanksgiving.( My grandma prepares the best meal ever on thanksgiving) I try to focus on the positive though, tonight is my work Christmas party and it will be fun to see co-workers I haven’t seen in a while. I hope u r doing well, you are a strong person!

    P.S. what kind of formula do u use? I am on “Promote” by Abbott ind. I was just curious

  • Kirby says...

    Sorry it has taken so long to get back, hospitals, doctors and lots of snow. Plus with the other comments, you’re got lots. I haven’t heard of that brand before but for tube formula, you will probably need to test a lot of them before your body accepts it. There are a lot of them. Keep me posted.

  • Jessica Snow says...

    Hey Kirby! Glad I finally found your website, since I might be getting a feeding tube before too long now that my GI knows that I have GP! I’m going to message you on FB cause I need to ask you something about all this stuff!! I’m soooo confused!

  • Katie says...

    Hey everyone! I too have gastroparesis… It’s no fun. I’m 17 and it keeps me out of everything I love doing, like school and cross country :( I’m getting better though. I have had a nj tube for two weeks now and today it got clogged. We have tried everything in the book to get it unclogged, but nothing works. I guess I will have to go to the ER in the morning to get it replaced. When they put it in the first time I was wide awake, the sedatives did not work…it was miserable!!! So I am NOT looking forward to round 2

  • Kirby says...

    Yeah. I’ve been awake for several NJs and all my NG tubes which I think, is the worst kind. They are the thickness of your thumb and they always place them in your room. That horrible cracking sound as they shove it down is terrible. I hope you got your NJ tube working again. I had many issues my NJ tube. It was never clogged; it flipped over itself at the very end so pulling back and forth does not undo it. It always had to be replaced. I did have one on-call doctor who was able to pull back and forth on it to un-flip it, but that was a bad experience. It hurt so bad. Just replacing it is easier, even when awake. That felt like having it replaced over and over again and was not fun.

  • Katie says...

    I did get a new on placed :/ but now it’s out!! Check out this video!! http://youtu.be/3mfuy1DkF3w

  • Brittney says...

    Hi, I have been suffering from anemia/malnutrition/malabsorbtion since infancy and I had the distended belly and all.
    But 6 years back I started feeling like I had morning sickness all day and threw up a lot/lost 60 lbs in about 2 months….At the same time my Gall Bladder was full of stones and about to burst, so I went in for Emergency removal. 3 days after the surgery, I started getting horrible lower back spasms and went into the E.R. crying hysterically from pain…4 long months of this went by and then I snapped inside the E.R. demanding better test’s/MRI’s….That night I was admitted and diagnosed with a lower lumbar spinal infection that had been eating my vertebrae/disc from the inside out. After over 2 months of PICC line tubes and antibiotics the infection was under control. My stomach stopped and even though my diet never changed, I gained the weight back + some.
    1 year ago I started feeling the morning sickness feeling again, only worse and throwing up all the time, losing another 30 lbs in about a month….Finally it startled doctors enough to test me and that’s when the Egg sandwich test came back abnormal.
    I have had a lot of these symptoms since a child but the actually throwing up didnt start till 6 years ago. I am not sure how long I may have had it or much about it yet, except for what I can find online.
    Seeing people learning to live with feeding tubes is very scary and it’s been making me wonder a few things.

    -Does everyone who has Gastroparesis eventually need these?

    -Do you know right away if your going to need them or is it a gradual thing?

    -Does healthcare usually help cover the cost?

    I hope these don’t seem like ignorant question’s, I just couldn’t find any answers.

  • Kirby says...

    Brittney -

    I am so saddened to hear your story. It is much like the rest of our stories. Stories of doctors who do not listen. If you are lucky you will find a doctor who will stick by you no matter what kind of crap you throw at them.

    I can’t talk for long, but you are more than welcome to read about my experiences with treatment options for gastroparesis and CIP. They saved my life and are thankful to have them. I wouldn’t give them up for anything in the world and you, too, will develop this opinion once you see improvements.

    1. Not everyone with GP wind up with feeding tubes but they do help and are nothing to be scared of. I loved my tube. Mostly because I could put everything down it (a jejunal tube, not gastric as that would defeat the purpose of a feeding tube in a gastroparesis patient) like medications, water (for hydration) and then nutrition via pump (if you get the rate high enough you can run it for a simple 12 hours while you sleep and go about your day without being pulled down by the tube. See my links for my favorite tube dressings that not only double as goober catchers and stupidly cute accessories.

    2. Your doctor would be best at knowing when it is appropriate to place a tube. You will need to trial the tube via a nasal-jejunal tube to see if you can tolerate tube feedings and to find the correct rate and formula for your body. This can be difficult sometimes but do not give up. Your body needs nutrition but with all the right things, your nausea will decrease immensely or even all together. You can also vent from this tube if you can acquire a Farrell Valve. Google it and order it. I leave it on the floor at night while feeding as it keeps the pressure in my abdomen equalized. All these things can be found on my site. I am working on a page full of gadgets I use or have used that I have personally used and liked during times with NJs, J tubes and now my portacath for TPN.

    3. My healthcare covers the cost 100% I’m not entirely sure which healthcare you have, but it is worth the call to find out, or the GI doctor who would be proposing a type of feeding tube will be able to answer this question for you before any procedure is scheduled.

    I hope that helped. Please feel free to ask more if anything else comes up. I’m here to help and if I can’t answer it myself, I’ll find someone who can :) I hope you are having happy tummy days and get the rest you need tonight.

    - Kirby

  • Tracey says...

    Hi Kirby,

    I have been reading your site for some time now as I was diagnosed with GP last July and suffered all the symptoms like you have and gone through all the medications with no joy, instead i have had increased symptoms to the point now that I am unable to eat anything and even have to water down the liquid drinks given by the hospital and sip these continuously throughout the day.

    I have just been told that they are going to fit a double balloon enteroscopy with jejunal tube insertion. Have you every had a tube placed like this before? I have over the past year been so supported by your site and would just like to send you my appreciation for all that you do in sharing your pathway, I really don’t think you could ever imagine the help that it can bring to people like me with this diagnosis. It helps so much to see what others are dealing with and just to know you are not the only one with this horrid disease. I would just like to send you a big hug and hope that you are doing well.

  • vicki says...

    Hey there,
    I just found your site. Your story has helped me more than words can say. My son (now almost 4) has been living with GP since birth. We have been diagnosed for a little over a year. The Eryped is not working and he is not gaining. We are having this on again-off again talk about a feeding tube. Until your site I have been very scared about a tube for my son. You have helped me to see that it’s not so bad. Although scary it might be a blessing. Trying to get him to eat & being so worried day in and day out every meal documented & every bite celebrated is exausting. We shall see what is to come but I wanted to thank you so much for sharing your story.

  • Emily says...

    Thanks for this post – I was recently diagnosed with GP and I am facing NJ tube placement, so this was quite the helpful story.

  • abyee says...

    Thank you for this I have a NJ tube and about to get a J tube and am worried and the only information I find is for children..

  • maddy says...

    hey beautiful inspirational girl!

    I have gp too. Can you still eat even if you vomit with an NJ tube? I know it’s not ideal but I really love and miss food!!

  • Keith says...

    Hi Kirby,

    I want to thank you for sharing your story. You are an inspiration. I’ve had Type I diabetes since I was a sophomore in HS, back in 1994/95. I am 34 now, and about a year ago, I noticed my stomach was not emptying foods properly. I had really bad control of my blood sugar for 18 years…A1C was always 9.0 or higher…When I 1st noticed problems with my stomach, it got me scared and so I went on an insulin pump…since I went on the pump, my A1C has been 6.0, 6.5 and 6.8……much better then the 18 years of 9.0

    Anyhow, right now I am feeling a bad case of GP. I never been officially diagnosed with GP, but I need to tell my Dr. that I want GP tests done to see if I have it. I know I do, its just I don’t tell anyone my problems so nobody else knows. This will be a way to break the news I suppose.

    Anyhow, let us know how you are doing. It’s been a while since your last posting. I been so sick with GP, I am thinking about how hard it is to get thru the days at work. I have 38 credits earned, and once I get to 40 credits, I guess I could be qualified for disability and be eligible with disability insurance maybe? I’ll have 40 credits accumulated by the end of the year. I have no idea if I would even qualify for disability insurance, but with my diabetes, I also have a long list of other problems :(

    Keith

  • alex says...

    I was diagnosed with gastroparesis last year. It has been a year of struggles multiple we and hospital stays. I had my jtube placed two weeks ago. I still feel the fullness and nausea. But I’m able to eat. It’s a bit scary since I’m a single mom and it would be nice to get acquainted with people going through the same.

  • Rozy says...

    I have had gastroparesis for about at least 7 yrs. & had finally happened upon a great gastro-guy & his cohorts last yr.(after spending all that time on “quacks” shall we say???!They found the thing but no one knew what to do w/the thing.One Dr., head of the dept. told me I’m just a skinny lady!!!Anywho, this new team have done all sorts of new tests & have tried the Botox thing(I still have wrinkles!!)the nj tube thing(just kill me willya??!found myself on u-tube on how to remove the thing but went to er & they did it) & now comes the j tube.Don’t know what to expect, Dr. has a very good outlook on these things, very positive but then I don’t think he has ever had a tube up HIS nose never mind his gut. It HAS to be better than the nose. I am so discouraged, just seems like nothing will work & then there’s the fear of TPN……they’ve been tap dancin around the stimulator………………..Thank God I can still eat, not much & definately not enough(I weigh 78 lbs at 5’3″).I dream of an Italian buffet…………Me, cruisin the web for info….

  • 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!!

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