Happy Feeding Tube Awareness Week! The Feeding Tube Awareness Foundation started this awareness week in an effort to eliminate the stigma around feeding tubes and celebrate the lives they make possible. The theme of Feeding Tube Awareness Week this year is “the truth about tube feeding” and the focus for today is education, so in the spirit of it all I’m sharing a little bit more about the medical-y day to day of my life. Today is Feeding Tube 101, and since my life got slightly more complicated when I started TPN in the fall, tomorrow I’ll talk about the rest of it.
Disclaimer, my day to day life is not going to be the same as someone else with a feeding tube. There are hundreds of different reasons why people need tubes, and as such everyone’s day to day will be a little (or a lot) different.
Let’s start with a crash course in feeding tubes. There are many different brands, styles and sizes of tubes. And now a rhyme:
Some tubes are short. Some tubes are long. But all tubes just want to feel like they belong!
But really, there are so many different kinds! Let me decode them for you: G=gastric, or into the stomach; J=jejunal, or into the jejunum which is the second part of the small intestine; N=nasal, through the nose; Fr=French, which is the unit of measurement used to describe feeding tube diameters. G tubes are used when the stomach still functions properly. Depending on why someone has a G tube, they may do bolus feeds, which means a large volume over a short period (much like a regular meal) or continuous feeds, which involves a set rate of formula per hour over many hours. J tubes are used when the stomach function is impaired and the formula needs to be delivered directly into the intestine. J tube feeds must be delivered continuously at a lower rate because while the stomach has a ton of reservoir volume, the small intestine has a much smaller capacity. And to make things even more confusing there are also the hybrid GJ tubes, which have access to both the stomach (G) and the intestine (J) all through the same stoma, or opening, in the stomach. Those are the basics, but tubes can also be differentiated by make, placement and style.
Fun (irrelevant for most people reading this) fact: I have a 16Fr Mic J tube.
Once upon a time, in September and October of 2013, I actually had an NJ tube (nasal-jejunal) which means it went up my nose, down the back of my throat (yes, I could see it when I opened my mouth), down my esophagus, past my stomach, through my duodenum and into my jejunum. Quite the journey really…perhaps I shall write a children’s book about it! Nasal tubes are usually used when tube feeding is temporary or as a trial for tolerance to tube feeding before placing a more permanent one. Here’s what I looked like for 26 terrible days with my NJ tube:
I (un)affectionately referred to this tube as Babar. You can see the resemblance, right?
Despite my smile, I really wasn’t lying when I said those were 26 terrible days. I’ll spare you the traumatic details but I ended up having it pulled six days early in the ER because I could not tolerate it any longer. But regardless of how awful that time in my life was, I mostly just shake my head and laugh about it now.
I started with an NJ tube because the hope was that it would just be temporary. I gave it my best effort but my need for nutritional support persisted, which is why I had my J tube surgically placed in January of 2014.
Here’s a picture that shows both my lifelines, my feeding tube and my central line:
My feeding tube (the one in my belly…duh) was surgically placed right into my small intestine. It hurt, a lot. The surgeons all said it shouldn’t cause any post-operative pain, but I would like them to plant foreign objects in their abdomens, leave them there, and then get back to me on that. It was a good eight to ten weeks before I was completely pain free, but by that point in time I was well underway in my never-ending battle with granulation tissue, a battle that continues to this day. If you haven’t read my posts from last spring where I’m pretty sure I talk about granulation tissue a lot, it’s basically tissue the body produces to try and heal wounds. In most cases this is a good thing but in the case of having a feeding tube where you need that stoma to stay open, granulation tissue is bad. I have tons of pictures (seriously, I have so many) of my poor stoma overrun with granulation tissue and covered in ugly stains from trying to burn it off with silver nitrate, but don’t worry I won’t share those with you! You can look at these pictures instead!
Other than feeling some pressure from the balloon if the tube gets snagged, I don’t feel it inside me. I do, however, experience discomfort when I flush larger volumes of water. And if the water is really cold I can feel that, too! There are days when it is very painful and days when I forget it’s even there, and so far I can’t figure out a rhyme or reason for that. Here’s a random tidbit for you…oftentimes stomachs or intestines will try to digest feeding tubes. By this I mean that normal peristalsis is taking place inside the digestive tract and the internal parts of the tubes get pulled along, sucking the tube in tight against the skin. I like to think of it as a game of tug-of-war between my intestines and the outside world. Basically it’s just annoying and vaguely uncomfortable, though sometimes it’s quite painful.
Before I had gastroparesis and before I knew much of anything about feeding tubes, the truth is that I thought they were pretty icky. In my earlier days of gastroparesis when feeding tubes were something only the really severe cases required, I still thought that. And honestly? They’re not exactly glamorous, but having a tube? And using that tube in public? There’s nothing gross or icky about that! Someone tube feeding in public should be seen no differently than someone eating ‘normally’ in public. Flushing water through a tube should be seen no differently than someone taking a drink from a water bottle.
Feeding tubes are not something to be feared. Some people can’t walk and they need a wheelchair. Some people can’t see and they need glasses. Some people can’t eat and they need feeding tubes. It’s as simple as that.
Feeding tubes aren’t the magic solution for everyone, as mine certainly wasn’t for me, but they do keep people alive and they help people thrive. They allow babies to grow into children, they allow children to grow into adults, and they allow adults to keep living. They aren’t contagious or scary. They’re real. They’re just part of real life. And there shouldn’t be shame or embarrassment associated with anything that gives you have a chance at a life.
So Happy Feeding Tube Awareness Week! It’s all about awareness, so please, if you have any feeding tube questions whatsoever, ask away and I’d be happy to answer! And may all the tubies out there, past, present and future, bare your bellies with pride 🙂
Finding my Miracle 
I was diagnosed with GP the end of 2020 as a results of a pancreas removal surgery and the vagus nerve was damaged. I am slowly but progressively losing weight. Doctors have suggested TPN (as I already have a port and do IV hydration at home several times a week) or a feeding tube. I have told my husband absolutely not the feeding tube as I have heard it’s gross and uncomfortable. But I’m also afraid of the TPN being a pain in the butt and being tied to one more thing. I am a nurse at a busy outpatient center. I have been trying desperately to keep working but because of the malnutrition it is getting progressively harder and harder. I’m at a lose as to what to do and I’m seeking any advise people who have gone through this can give. I know you can eat with the feeding tube and the TPN but I assume not much. I don’t eat much more than soup these days anyway but I do enjoy the pleasure of eating, just not the pain that comes with it. I guess I’m asking if you had the choice of a tube or TPN what would you choose and why. I know you can’t give medical advice about my case. I’m just curious what you think of the choices and why.
Hi Victoria – first of all, I’m so sorry you’re going through all of this. It’s such a challenging and life-altering adjustment, no matter which route you end up taking. As for your specific situation, that’s really tricky for me to weigh in on just because I can tell by your reply that where I live things work very differently. The idea of having a choice about any of this is very foreign to me! I appreciate that you’re not looking for medical advice, but I’m also not super comfortable even sharing my own experience with this because I recognize that a huge influence on my personal experiences is the care and medical support I received or didn’t receive while in that situation. And I would just hate for any mistreatment or gaps in my own care, and any frustration or resentment I might feel around that, to influence your decision. And I apologize for that because I know it’s so so frustrating when you’re just looking for some concrete information or experience from someone and they give you some longwinded non-answer like this. Haha if I were you I would be annoyed with me! But non-answer is all I’ve got
Can a person have a job with a jtube?
Is it possible to live a fulfilling, happy life?
Absolutely! People require feeding tubes for so many different reasons and so their quality of life with a feeding tube will vary depending on those other factors. But a feeding tube itself does not inhibit someone from living a happy life. Life is definitely a little more complicated, but for most people who need feeding tubes, the tubes actually improve their quality of life since nutrition is so essential to life.
Can you go swimming and have fun outside the home?
You can definitely have fun outside the home! Not everyone needs to be on 24hr feeds so they can leave the home without any supplies. But for people who do need longer feeds there are portable pumps that make it possible to go almost anywhere while feeds are running. Swimming is not a free for all. It depends on what type of body of water as well as other circumstances specific to each person. Your doctor or other members of your medical team can help guide you through that.
Catherine: I’m a 24 hr caregiver to a 31 yo (child )as she has a genetic disorder, a stroke victim and non verbal with a ng tube. She is doing ok. But refuses to eat or drink anything orally and I just need some guidance if you have any to give. We give her meds by syringe and need to encourage oral eating and drink so she can be weaned off the tube and have it removed.. she’s lucky to have gained 10 lbs with Kate Farms formula but we are frightened she won’t eat or drink when it’s removed. Is it awfully painful to do so? We’ve tried very puréed foods and broth soups all her favorites but she still refuses. She’s on a 24 hr feed so we know she’s full so if it’s not too painful to eat with the tube it could just not happen till we can reduce the nonstop feeding so she might become hungry. Your thoughts?
Thank you for your time and best wishes for good health
Hi Robin – if you’re asking if it’s painful to eat orally with a feeding tube in place, no, it shouldn’t be. And if you’re asking if it’s painful to have a feeding tube removed, there can be some discomfort as it’s pulled out but it should be quite fleeting. As for how to help her increase her oral intake, I’m sorry I don’t have any advice for you as there are so many potential factors at play. I would suggest seeing if you can be connected with a dietitian and a speech therapist as they would likely have more experience with this and a better understanding of the issues involved. Good luck!
I was diagnosed with GP 6 months ago but it was long over due. I am now at zero tolerance for food/water. I’m awaiting a call from my GI on possible IV supplementation or NJ but today is day 3 and no answer. I have a hydration appointment tmw or I’d go to the glorious ER 🙄. Any suggestions?
Hi Angela – sorry to hear you are struggling so much. Not knowing your whole situation I can’t give you any medical advice or suggestions, but I do hope that you’re able to work something out with your GI. Good luck!
How long does this j tube placement hurt??? Hurts like he’ll still only been a week but dang, nothing like the Dr. Said because it hurts!!!! Thx you for post, been feeling so alone and your post comments others that share have helped
Hi Melissa – so sorry to hear you’re in so much pain! My surgeon really downplayed how much pain it would cause beforehand, and continued to after my surgery as well. But it hurt! It was about 8 weeks before I was able to say, “hey, I wasn’t in pain today,” but it does get better! And it doesn’t take 8 weeks before it becomes manageable. This is tough, but you are tougher, and you’re going to be okay.
I have just been reading about your tube. Can I ask why you got it please? My granddaughter was born at 24 weeks and is having a peg fitted. She was on an no tube. They don’t think her stomach will ever tolerate food. She has never had a bottle and is now seven months old. I’m feeling sad for her so you are an inspiration. Xx
Hi Sharon – I’m really sorry to hear about what your family has been through with your granddaughter. I had my feeding tube placed for a condition called gastroparesis, which causes delayed emptying of the stomach and movement through the GI tract. I know it’s overwhelming, but amongst your sadness, try and make some room for hope. Because feeding tubes are not death sentences. Feeding tubes give people their lives back! They allow people to get the nutrition they need to not just survive, but hopefully to thrive! Some people have trouble with their vision and they wear glasses. Some people have trouble walking and they use wheelchairs. And some people have trouble eating so they use feeding tubes. It’s a big adjustment, definitely, but I promise it gets easier. The first couple of months you feel like you have no idea what you’re doing, but then it all becomes second nature. And the support and resources available for feeding tube care in pediatrics are excellent compared to the often non-existent support for adult patients. So your family will not be in this alone. If you haven’t already, I encourage you and your son or daughter to check out http://www.feedingtubeawareness.org/ – it was started by two mothers with tube fed children who were frustrated by the lack of information out there, and the community and information bank they have built is incredible! Best of luck to your whole family. I’ll be rooting for your granddaughter 🙂
Thank you for sharing your experience! I had an NJ tube due to an extremely severe case of Hyperemesis Gravidarum. I can totally relate to your unaffectionately naming it Babar. I’ve created a blog about my experience as well, well more like “our” because it’s a compilation of all things HG. Good luck on your journey, and thanks for sharing!
http://hgawareness.blogspot.com/2016/09/learning-about-hyperemesis-gravidarum.html
My mom gets a tummy feeding tube soon but now she has an NG. I was informed today that I will be helping with feedings when I go home for Christmas and I wanted to say thank you for your frank discussion which makes me more comfortable.
You are very welcome, Rita, I’m glad I can help in any small way 🙂 Good luck helping out with your mom’s feeding tube. I know it’s overwhelming at first but I promise it all becomes routine very quickly!
Thank you so much for your posts! I just got a J-tube of my own, and it’s been helpful to read about your experiences. I posted a link to this on my own blog, and I wanted to share the link with you. Keep up the great posts!
http://www.kimjacksondo.com/2016/08/gastroparesis-and-feeding-tubes/
Thank you, Kim!
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“There shouldn’t be shame or embarrassment associated with anything that gives you have a chance at a life.” Well said!
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