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Author: admin, 27.07.2014. Category: Organic Products

The Urban Food Tubes delivery system is a project imagined by a collaboration of engineers and academics called FoodTubes. People don't cry because they are weak, but because they have been strong for too long.
Back when I failed all attempts to cure or control my gastroparesis through medication, I was losing weight, and losing it fast.
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). 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.
Because I was previously feeding with a nasojejunal tube, nothing about the schedule, rate, formula or even connectors changed.
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. 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.
Thanks – I thought I changed the site over to something else but I guess it never went through. 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. I have had a lot of these symptoms since a child but the actually throwing up didnt start till 6 years ago. Seeing people learning to live with feeding tubes is very scary and it’s been making me wonder a few things. I can’t talk for long, but you are more than welcome to read about my experiences with treatment options for gastroparesis and CIP. 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. Thanks for this post – I was recently diagnosed with GP and I am facing NJ tube placement, so this was quite the helpful story.
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.. Hi!:) I have had gastroparesis for years now and still cannot mamange it amd struggle every day! I had mine in for 6 months and had it replaced due to my awesome backwards peristalsis forcing kinks, 6 times within those months. I rarely comment on websites these days but I wanted to thank you for clarifying something very important in my mind.
Your childA?a‚¬a„?s jejunostomy tube is a special tube in the small intestine that delivers food and medicine.
The first feeding tube we used was an Oral Gastric (OG) tube and after about a month, Darah graduated to a Naso Gastric (NG) tube. I love answering questions about feeding tubes and would love for anyone to take the opportunity to share their tube-feeding story, experience, or question! Since then we have been down a long road of trying lots of ways for her to firstly tolerate having food in her mouth and then to swallow. Your daughter is so precious, I can relate to the g tube my son has had one for 10 months he was born with esophageal atresia and down syndrome.
Hello, My daughter cannot have the g tube or anything else put in her stomach area due to extensive scarring in that area ( she was born with her liver and intestines outside of her body) so she has had the NG tube in all her 23 months of her life.
My heart goes out to all of us mums whose children cannot do the things that so many parents take for granted.
This design repurposes the tube infrastructure in the UK, by supplying the contents of the tube for transporting groceries.
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. 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.
Sometimes the caps on top become loose or fluid collects in it, causing it to smell something foul. 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. All my holiday decorations are up in my house and it is starting to feel like the holidays. 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’ve been awake for several NJs and all my NG tubes which I think, is the worst kind. 3 days after the surgery, I started getting horrible lower back spasms and went into the E.R. I am not sure how long I may have had it or much about it yet, except for what I can find online. Not everyone with GP wind up with feeding tubes but they do help and are nothing to be scared of. 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 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 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.
Your story has spoken to a lot of people who haven’t seen themselves represented anywhere else.
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. Sometimes we are being starved to death by our doctors from their complete ignorance regarding our lives. The OG tube is a feeding tube that is inserted in the mouth, down the esophagus, into the stomach. She also has Down Syndrome and heart issues and the combination of low muscle tone and heart problems meant that she was too weak to feed normally. In that operation they do keyhole surgery to take the stomach and attach part of it to the abdominal wall and then they cut a hole in her belly which goes straight through to the stomach and put a feeding tube into it.


She has been eating small amounts of things like ice cream and chocolate yoghurt erratically over the last 8 months or so but about 2 months ago she it was like something clicked and she started chewing and swallowing. I think you have a great web site and a precious little girl.God bless you and your family. I keep on telling myself slow and steady will win the race for her but it does get me down at . I was on here in March looking for someone who might know what I can do or try differently. At birth he was diagnosed with down syndrome he had failure to thrive and asparation he a g j tube put in this allows the food to by pass the stomach as he also had gerd about a month after birth they found he had blockage of the duodenum he had surgery he also had heart surgery. 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. When it is changed out you just unscrew it from the tube, trim the tube if necessary, and pop in another one.
Intestinal fluid will come rushing out like an exploding volcano and you will quickly realize what happened and rush to clamp it shut. Feeding by tube has saved my life as well as time in the ER and I am just thankful to have it. 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. I don’t recommend you keep it in longer than 3 weeks at most unless this is just an extremely temporary thing. 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.
I’m going to message you on FB cause I need to ask you something about all this stuff!! I wouldn’t give them up for anything in the world and you, too, will develop this opinion once you see improvements. 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. I’ve had an NJ tube installed for 3 months and am not due to be reviewed for another 2 months. 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.
Try to make this part of your daily routine. Make sure you keep the tube protected by taping it down under a t-shirt. Since then we have reduced her tube feeds to one a day and hope to totally come off tube feeds shortly and then remove her feeding tube once we are confident she can maintain her weight and take enough fluids in to keep her healthy.
Sometimes she puts toys in her mouth but if I give her finger food she doesn’t take it anywhere near her mouth! I am a single mom of a new born down syndrom little blessing who has currenly gone through the first of three surgerys.
Currently he will be starting a feeding clinic so they can teach him how to chew and swallow. My baby had a serious congenital heart problem that they were pretty sure would lead to death after birth. 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. On April 8th, 2010, I received my long-awaited jejunostomy feeding tube via endoscopy (it was placed endoscopically versus an open procedure).
Getting a hold of these for replacement is difficult but you really shouldn’t ever need it replaced anyway.
This, I think, is somewhat due to the fact that we are able to share our personal stories and experiences with others.
If you are lucky you will find a doctor who will stick by you no matter what kind of crap you throw at them.
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. We also got a feeding pump because Talitha couldn’t tolerate all of her nutrition through the day. We all sat around and for the first time in her life Talitha sat there and ate a hash brown just like the other kids. I live in Fl i know that All childrens in st petersburg fl has an intensive feeding therapy and they also have a web site that has some good tips. I woke up an hour after the procedure with a tube taped to my face and was able to go home shortly after. 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. I didn’t use any dressing on it once the surgical dressing was removed shortly after I got home.
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 their mini and regular backpack for when I need to take my pump and feed while outside the house. See my links for my favorite tube dressings that not only double as goober catchers and stupidly cute accessories. Your body needs nutrition but with all the right things, your nausea will decrease immensely or even all together. If someone tells you differently, I suggest you don’t see them or simply confront them about it.
After awhile he got used to it, but his poor skin is so raw from the tape we have to put on the gauze.
Conner my son has a dietician and she said a lot of times down syndrome peoples taste buds are not like ours they like stronger tastes. 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. These things really do keep the moisture and other gunk that leaks from the site, clean and away from the skin. I don’t feel I am limited at all in any activity and have even rock climbed while feeding.
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.
Place them in the plastic bag, and throw them away. Check the skin for redness, odor, pain, puss, or swelling.


Thank you again for the reassurance with seeing the progress your daughter has had I hope that happens with mine. Well now she’s on the g-tube with a kangaroo pump which I can only use it till august of 2009. She is 4 months old now and has been vomiting all her feeds so im in hospital as we write this. 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. My tube is held in place with a non-balloon bumper, so I was told to never twist the outside tube around. It didn’t have a balloon for an internal bumper, no stitches and it was a lot more flexible. When they put it in the first time I was wide awake, the sedatives did not work…it was miserable!!! It was never clogged; it flipped over itself at the very end so pulling back and forth does not undo it.
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.
Make sure the stitches are still in place. Apply soap and warm water to a washcloth, or dip the Q-tip in half strength hydrogen peroxide (1 tsp. I know were supposed to try the veggies but if she loves fruits and can eat a small portion of it I’m happy. We will be going home with a kangaroo feeding pump and are seriously considering gastrostomy to get the g tube put in as she will probably need feeding assistance for a while to come. It was a dietician that came to my house that night, so she knew how much and how fast to feed. 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. The little bumper on the inside was so small and flat so it caused zero irritation in my intestine. I leave it on the floor at night while feeding as it keeps the pressure in my abdomen equalized. 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. Only a new tube seemed to calm the pain, even if it only lasted a few days – I enjoyed being pain-free.
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.
She would cry as if it were the worse thing in the world and she’s so little and already knows. 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. 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. My husband is now living on Cream of wheat and soup and he has a protein shake in the morning.
If I give it to her with the dropper she open her mouth so I can give her some and if I give it to her in a cup she’ll almost want to drink it in an instant and gets frustrated because she would love to just pour it over herself. I was just excited to finally have the tube out of my nose even if it was simply exchanged for one in the abdomen. 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.
I love that, but she still won’t really drink out of the bottle if my husband or I am giving her formula.
I just want to say thank you for all of your stories I have a better perspective on this I think.. She doesn’t have heart problems and she was a term baby weighing at 10lbs and 11ounces. She barely even smells it and just arches her head, screams, cries and hits the bottle as hard as she can. He cannot take any of the usual meds because he has grown intolerant including those purchased outside the U.S. An ocupational therapist at childrens hospital here in California worked with her maybe 2 times a week for a month and she just wouldn’t take anything from the bottle. She will also close her mouth tight so that we can’t even try and put the nipple in her mouth.
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!). 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. Our daughter has been to Genetic doctors and they say that they can find anything wrong with her. Gastrectomies (I might have just made up a word) should have normal longer thicker tubes for optimal drainage. 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. I’m just really worried because in August I might not be able to stay with the kangaroo pump. 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. They want me to feed her bolous feedings but it’s impossible because she has reflux and because she cries a lot and moves a lot and it will take forever for her to finsh eating. I just wish, hope and pray that maybe someday she will start taking the bottle or that she can just start eating solids. Please if someone knows someone, has passed through this or knows what I can do please do let me know.



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