Hello Peter and Mary, you guys probably aren't going to see this or care about this comment but I am going to type this anyways. I got super sick early September 2016, with a rough cough, migraines, bone and lung pains, shortness of breath, constipation, and nausea and my paediatric doctors couldn't figure out what was up with me. I was put on different inhalers and pills and was tested for different things but everything was coming out clear. We got chest x-rays done and they were clear. After months of waiting we finally got an appointment with a pulmonologist for the 31st of January. I just wanted to let you know how much watching your videos has helped me through hospital stays and rough days at home or school. Watching Mary get through each day helps me get through mine. Thank you for the support that you don't know your giving. Thank you for the laughs that I get each and everyday when I watch your videos. I love you guys!!❤
Hi Mackenzie! Thank you for sharing a bit of your story! I'm so thankful to hear that you find encouragement in our videos! You keep on keeping on! Please do keep us updated as you continue searching to find out how to best treat your body and the complications you are having!
The Frey Life Mary I understand you 100% about the weight thing. Mine is down also, I had blood work done and everything came back normal thank god. I have Ehlers-Danlos it's a rare tissue disease. So I feel your pain.
The Frey Life Thank you for answering, I am glad you guys know you have my support on behalf of everyone. My prayers are with you guys tonight. Love to Mary, Peter, and Ollie! From Mackenzie, and Scout!❤
Could my fellow Frey life family members be praying for me please? I'm going under for two surgeries at one time. I'm having a toe amputated. And... I have a self cath channel that I've been having problems with that another doctor is going to try to fix. Thank you all.
Mary so sorry you are still struggling with your weight. As a nurse I and lots of other people can give you a few tips. On day of placement make them go at your pace. If you need a break so be it. They'll wait. Ask to have a drink of cold water with a straw if not offered. After placement you may feel like you have something in your throat. Cold or hot liquids often help. Sucking on ice chips sometimes works wonders. You have to determine which works best for you. Your nose also may be come irritated. The tube will be taped someplace on your face. Adjusting that can help. Also Vaseline can lubricate the nostril. There are all different products to put down your tube. If something doesn't agree ask for something different and remember delivering it too fast may give you diarrhea. :o Good luck.I'll be rooting for ya.
Hi Peter and Mary...I do not have a NJ tube, so I can't speak to that directly. I have a permanently implanted tube (a j-tube). When it was placed, I had lost so much weight and was really struggling. My health problems are really different than Mary's. I have severe gastroparesis, and some other things. But even though our situations are different, I can relate to Mary's struggles with eating and nausea, which she described so well. I can say that having the feeding tube placed did really help, at least for me. I stopped losing weight rapidly, and stabilized my weight. I regained some strength. I'll be remembering you in my prayers, Mary, hoping that the procedure to place the tube goes as smoothly as possible with the minimum of discomfort! Hang in there! Wishing you all Christ's peace, strength, and hope.
Mary does a nice job speaking to the camera explaining her bacterias. Good stuff. Peter is without question a great man. Best wishes to you two. Keep it rollin.
I started watching your channel around 1 year ago, as a student nurse the videos have given such a great insight into an illness that previously I had very limited knowledge! Thank you for your daily videos, they certainly remind me to smile everyday!
I've had an NJ tube and several NG tubes and I've never thrown up or had a bad experience. It's not fun, but it's not terrible. Just keep swallowing, it feels uncomfortable just once it's in your nose and starts going down but once you swallow it past that point it's really easy. Good luck!
I have a peg tube and it was such a huge blessing in the long run. At the beginning I was hesitant, but it allowed me to keep weight on and stay healthier! Wish you the best of luck!
Mary, your hopefulness and always optimistic attitude is so inspiring. I admire the two of you so much. Love this channel. I'm assuming you already have a dietitian who is trying to help you with weight maintenance etc?
Well you still look amazing for having CF.I think your great attitude is a big help and the support from Peter and family and even Oliver .You are just amazing.
watching the update part makes me feel better about myself because I have ADHD and I have troubling gaining weight and I have always been bullied about my weight but this video make me more confident about myself. hope today was amazing for someone. Hope someone reads this and feel confident about a rough time in their lives and smiles or laughs today
Regan Sparks I'm sorry to hear about people mistreating you for that. It's great that you were positively affected by this video. 🙂. Hang in there and take care of yourself.
Regan Sparks hey don't worry it gets better, I too have ADHD and always had problems with my weight, I now have that weight but the people who did bully me for being underweight are now over weight it's not are fault we super active :)
My meds stifled my appetite as a younger kid (as I've gotten older my meds have had less of an impact on my appetite) and when I was in upper elementary school and we learned about eating disorders people thought I had an eating disorder, my classmates kinda bullied me for that. Looking back, it's almost nice because they did it out of some level of concern for me, obviously it didn't feel like that at the time, but of the other experience with bullying this is the only one that I can think back to and see that it wasn't an issue of ill intent, just kids that didn't know what else to do.
Great replay! *smooch* How brilliant the feeding tube sounds, I hope it goes as planned. Even to hear about the blade of grass up someone's nose made me shiver. How can you!! :D
I have crohns disease and have had many NJ tubes. And you will get used to it in a few days. You wont even feel the tube anymore. It will give your body a lot of energy and it saved my life a few times. If you have any questions, just let me know. I am a pro when it comed to feedingtubes :-)
Mary, you are the cutest human ever! "the opposite of comfortable" "no coughing" haha! You make me laugh! ^_^ I'm glad to hear about the care and plan you have for the future. I will be praying for this new treatment to help you gain weight, and fight off this mycobacterium.
good luck with the NJ tube. I love how you share your lives ~ the good, the bad, the ugly ~ with your The Frey Life family! You are a strong, amazing woman, doing everything you can to help your body be the best it can be. Seeing the love and support that you both have for each other is admirable~ stuff of true love! Praying for you.
Hope the NJ is a good option for you Mary! Be prepared to cry, gag, and puke during insertion. But once it's in and your body is more nourished, I think you'll be pleasantly surprised. It's always the little things for me, like a flight of stairs, where I am thankful my body has the extra energy it needs to keep going. I made the switch from a nasal to a surgical tube last fall and am so pleased I did. When I'm sick or in a flare I just plug in overnight feeds and boom. Keeps my body weight stable and helps me battle whatever is going on. It's unpleasant at first but so so worth it. And I know you're strong. Hugs girl! 💕
Mary, please ask if it is possible, given all your unique med responses, for spray freezing before they feed the tube up your nose. It lessens the immediate discomfort. Also ask about tube sizing if you have a strong gag reflex, smaller is way less intrusive and perhaps more likely with supplemental feeding because less has to go in than total tube feeding. When it is fed into the stomach and through the duodenum it is less likely to be coughed or tossed out with gagging and such. Also not as easily pulled out. My son had an NJ temporarily put it at age 7 and though he did not enjoy the experience of it going in, he barely noticed it once it was in which shocked me. I hope and pray your experience is similar to my son's and it is only a temporary nuisance and you can have one less worry aka vomiting your foods. You and Peter are amazing people. I am so glad that you have the focus of learning and preparing even when what happens isn't always expected. It's not always optimism or pessimism...realism fits right in there and it is always important to cover the bases. Bless you both 💓
hey Mary. I've told you before I don't have CF, but I really relate to you and your struggle. I've been in and out of the hospital and they don't know what's wrong but I just have no appetite and can't eat right now either. I hope you start feeling better. by the way, i didn't see the comments so I don't know if it was already answered, but an NG (nasogastric) tube, stops at the stomach, and an NJ (nasojejunal) goes to the small intestine. I love you guys and you are an inspiration to me everyday!
Mary I have had feeding tubes in the past due to a rare medical condition. The whole procedure to the the nj tube isnt terrible. They numbed my nose and throat so i didnt gag at all. When i got the gj tube which was a tube that was in my stomach into my small intestines it wasnt comfortable but it helped me live. Now im done with those tubes and onto drinking boost drinks to get extra calories. My condition is called superior mesenteric artery syndrome
I have a g/j tube and it saved my life!! I can't live without it, but I'm so thankful that we found this so I can still here and can be a wife and mother. I want to watch my daughter grow up. Anyways enough of that. We tried to just do a g tube but I still couldn't keep it down so they put in the g/j tube and has worked. I have had several nasal gastric feeding tubes and it wasn't to bad. Hopefully it won't be to rough on you.
Hi Frey Life I wanted to take a quick moment to share my story with you. When I was eight or nine I was hanging out at my friends house. She had this really high swing set and we were on top of it messing around and having fun. I was siting on the top and I fell down landing on my knee. I ran home crying and got better the next day. Only that didn't last long. I ended up staying home for a week because I was in so much pain I'm thirteen now and I have been into mutipul doctors to try and figure out what's wrong with my knee. I'm currently I a brace right now after falling and landing on my knee. Everytime I fell sad because I can't be a normal kid I always turn to your TH-cam channel I've always struggled with being me but I love your channel and you make me laugh. It's a small thing to say but thank you for brining my smile back :)
Hi Mary and Peter I've had a N/G tube ( Nasal Gastric) . When the tube was being passed it tickled the back of my throat, I then had an xray to see if the tube was in the correct place . The N/G Tube had a metal wire inside the tube so it showed up on the xray but when they take the metal piece out its hardly noticeable at the back of you're throat. I think you're decision is a good one for you . You will notice the difference in not feeling as tired all the time because you are getting the correct nutrition . Hope all goes well . God bless you both .
Hey The Frey Life! Mary, it's so funny how you were explaining all of your nutrition stuff, and talking about your portal hypertension and the effects that has on the rest of your body - I am a medical student from the UK currently in the midst of revision season, and I have an exam coming up that covers all of what you just explained! I thought I'd also just take the opportunity to say what incredible people you both are! I've been following your story (on and off) since around June, and funnily enough I found you because I did a respiratory module last year that lightly touched on cystic fibrosis and I wanted a bit of context as to how people with cystic fibrosis live day-to-day. Never did I imagine I'd become a follower of your story, you are both truly inspirational in how you can pick up the camera every day and so humbly show us the good and the bad. You guys really paint a fantastic image on what marriage was intended for. You're doing fantastic work, keep it up - God bless!
Hi Mary and peter, I don't know if you will see this but I have severe Crohn's disease, I have had around 8 NG tubes, although I have never had an NJ tube, having the tube put down is not pleasant but it doesn't last long, your instinct is to gag but the most important thing is to swallow and keep swallowing to ease it down, you will probably have a sore throat for a few days and it takes a few days to get used to the feeling of having the tube but after them few days the tube loosens up and you will forget it's even there, having them taken out is easy, just hold you breath and it's out in seconds, honestly Mary, you've been through so much and you are a trooper, you will be okay 💕
Thank you so so much for explaining the whole eating and calorie absorption issues, as a mom of a mini CF warrior that can not explain her issues to me yet, I appreciate you sharing so much!
A feeding tube sounds super scary, but I can understand where you guys are coming from. A feeding tube sounds like it could work really well for you, Mary. Wishing you the best as always x
Mary you are such a trooper , you don't complain and are willing to do whatever it takes to help you . Your positive attitude is so motivating I know you have your moments of course you are human, who wouldn't. I am keeping you in y thoughts and prayers as always! I love you girl! 💕🌞✌️🇨🇦🎀🙏🏼
NG tube placement isn't the most fun but hopefully it will be amazing to get all the nutrients you need. My son had several when he was younger and finally had a feeding tube placed in his stomach and also a GJ tube (which goes into the small intestine to help with calorie adsorption to help with his SEVERE reflux). He couldn't cough or sneeze with throwing up and had to have surgery for it. It's takes stress off of eating too. You can eat for pleasure and also get important calories with the NG tube. It's also a huge plus for meds that taste bad. Just talk to the pharmacist about getting it in a form that can go through the tube! We are cheering you on Mary!
Hi Peter and Mary I just wanted to tell you how amazing your videos have been for me, in early October I broke my ankle and in recently started bothering me again. You have really helped me through the sleepless nights of not knowing what the doctor is going to say. We still don't really no what is wrong with my ankle and I have an MRI coming up. But I wanted to let you guys know how much you have helped me through this difficult time in my life. I know there are things that can happen that are a lot worse but this have been really hard for me. Thank You soooooo much.
I have had multiple NJs, the placement isn't nice but it isn't terrible! Before they start, ask them to go at your pace, if you need a break, tell them! Make sure they give you a drink of water and a straw so you can sip and swallow to help the tube go down! Usually, they will get the tube as far as your stomach before turning on the fluoroscopy and then they aim for the valve at the bottom of your stomach (by wiggling the tube) to try and get the movement of your stomach to pull the tube down to the jejunum. Then the pull the guide wire out of the middle of the tube and you are finished! After placement, find a way of taping the tube that is most comfortable for you, the way the hospital tapes it isn't very comfortable! Also, remember that there are lots of different types of feed so if you don't tolerate the first one, don't worry, there are plenty of other options! Also, if you find the sensation of the tube in your throats weird for the first week or so, try drinking hot drinks or eating/drinking particularly cold things because sometimes the familiar feeling of heat or cold can be comforting! I wish you all the best, I hope it all goes well and you gain weight soon!
Y'all are in our prayers every day! I hope that you get answers on what bacteria it is soon so you can start doing something about it. We have had a rough couple of days. Our 2 year old managed to break his foot. It's like having an extremely heavy newborn again.
Dear Mary and Peter, I subscribed to your channel awhile ago but I have never commented. But I do want you to know that I am praying for you and as you describe your symptoms it gives me more specific things to pray for. I love watching your vlogs and I have to say that the Grace that God has given you to go through what you do is incredible! You are truly an inspiration. I was praying yesterday that you would begin to feel better and I am glad to see that you are feeling a little better! Anyway I pray the Shalom of God over you, which means peace and health and every good thing! Love Mary-Alice
From personal experience: a feeding tube isn't as comfortable as a nice warm blanket but it sort of "relaxes" the brain with the knowledge of finally getting the needed food without the possibility of throwing up. I had moments of frustration when I couldn't stand the feeling of the tube in my nose but doing things that made me happy helped get over this :) after two and a half years I am tube free and on the way to a stable health :) I am sure you'll do great, Mary! Keep your heads high, I believe on you ♥
How do you keep so upbeat with all the things every you go through. I have some problems with my back, which is nothing like you have, and I get so sick of it. Please tell me how you do it. I really feel very proud of you for the way you accept all the complications you face. Stay strong. Give Ollie a hug from me.
Hi Mary and Peter! I'm 23yrs old and I have been living off supplemental feeding for a year now. I have had many NG and NJ tubes during my courses of treatment, however I now have a J-tube (going through my abdomen, not out of my nose) because my supplemental feeds have become a long term solution. Anyways, Mary I wanted to tell you that the thought of getting the tube placed is much worse than the procedure itself. It will be a tad uncomfortable but they do it so fast and once it's in the discomfort dissipates quickly! After about a day with it you don't even feel it anymore so there really won't be anymore discomfort. Just wanted to comment and wish you good luck and let you know I'm sending you loads of good vibes. I hope you start to feel better! I'm so thankful for your blogs as I find a lot of comfort in them as I am also chronically ill and continuously fighting day by day. Thanks again!
Mary, I am so glad to hear about the feeding tube! I honestly think you will have more energy and feel better in general. And once they have the right meds in your system as well, you'll be up to your old escapades in no time! 🌞
I myself haven't had an NG tube but I do know quite a few people in the Ehlers-Danlos community have had them because of Gastroparesis (slow motility, slouchy, stretchy digestive systems that can't digest food correctly). You are so right about giving your body the energy it needs to fight. I know there will be others here who can give you good advice on what to expect.
Yes, I do. Classical (Type 1). EDS has been turning my life upside down lately! This channel has helped me deal with the emotional aspects... different illness, but so many of the same emotions! Peter and Mary have taught me so much about laughing and living in spite of it.
112musician yeah me too. sometimes I feel like I'm not entitled to this chanel but finding another EDSer is fab. personally I just hate the feeling that my body is useless. I have a type 3 dx but they are thinking about crossovers noe because of all the complications I've had recently. hope you are as okay as you can be. gentle hugs so there are fewer dislocations
I am praying for you too! After seeing your old videos and the video of you in your wedding dress I realized how much weight you had truely lost and started praying they would figure out a plan for that. I am thankful you are getting an nj tube no matter how horrible they are to think about getting. God bless!
Awww...Mary! I'm sorry you're going to have to have an NJ tube but I pray it will work really well for you and doesn't cause much discomfort at all! Hang in there! You have so many people praying for you and cheering you on. ((Hugs))
I found your vlog by accident yesterday and had to come back today to see how you are doing. I have NEVER commented on anything like this before but felt the need to say that you could absolutely tell that you felt well that evening. You had beautiful rosy cheeks. I am a nurse though CF was not in my area of work... I thought I recalled that with CF you also have hyper mucus production in your intestines...so maybe that is also causing some clogging, so to speak, which is hampering the absorption of the nutrients that you are eating/drinking.....another reason for your weight issues. You are the sweetest couple! And Peter....you are soooo incredible with your endurance, patience and unconditional love for Mary that you are making all of our husbands look bad :-) Both your positive outlooks and Praising the Lord are very refreshing.....Blessings to you!
You two are an amazing couple. I'm blessed with a fiancee who's sticking behind me even though I have only two or three months left to live. I know what it's like to not be able to eat. My cancer started in my esophagus, and that tumor has restricted what I can swallow. God bless you both.
I've had tests done with pH probes in stomach put in the same way as an NG tube. It takes about 5 minutes to install. The NJ tube (into jejunum of the small intestine) takes a bit longer. Having an NG inserted was honestly not uncomfortable - immediately afterward it feels like a "lump in the throat" for 1h or so just like a sore throat - after that I forgot the tube was there for the whole week it was in place tbh. If they offer you lidocaine or xylocaine spray to numb the nose before inserting the tube - being honest - it stings like crazy and that was more painful that having the tube put in. So you may want Jen to try doing it without and see if you can handle it and if not then take the spray. I'm living on Complan (similar to Scandishakes) for 3 meals a day at the moment as solid food sits in my stomach for 10h at a time and I have to use Domperidone to force it to empty, plus I aspirated stomach contents into my lungs. Looking forward to stomach surgery in the coming months to resolve it.
I'm so glad you addressed this, Mary. I have Crohns and have often wondered if you have ever done TPN (total parenteral nutrition). Its helped me so many times. There was a newby gastro, who wanted me to have an NG (nasogastric I think) tube placed. I resisted simply bc what's always worked was what I wanted. That was a Hickman cath. My surgeon agreed bc my intestine was riddled w scar tissue and Crohns and insufficient. One thing when receiving TPN thru the Hickman is that it makes my brain not want food bc it's getting the fat, calories, and vitamins thru my veins. You may notice that.
If it goes into your your intestine then it is a nj tube. NJ tubes are very uncomfortable when you first have them placed. But if you use some throat numbing spray that will help a lot. I have gastroparesis, we have something in common, we both have an incurable disease! If you aren't familiar, gastroparesis means my stomach is paralyzed. It cannot digest food. So I vomit everything I eat and sometimes what I drink. I got so sick in November bc I couldn't keep any food or fluid down and had a g-j feeding tube placed. I feed about 20hrs/day and this change in my life has been very difficult. But I am thankful to have it bc it bc it is keeping me alive! I am glad you are considering a nj tube. You might find it helps you in a lot of ways even if your pfts are not so great. I will be praying for you Mary! Let me know if you have any questions!
Jessica Hopper I have gastroparesis too(: I've had NJs for 7 weeks now, do you have any problems with your gj? I'm trying to decide between that and just a j tube!
Lauren Chevalier I have not had any problems with my g-j. I would definitely recommend it. I was only really sore for a few days and then the pain was much more manageable. I have never had a ng or nj bc I know I couldn't tolerate it. Them putting one in during the procedure to place my g-j felt like torture to me. But yeah, I've had no problems with clogging, my feeds run great, nobody even knows I have a tube when I'm out, etc. I would definitely talk to your doctor about it. And also, I'm truly sorry that you have to battle gastroparesis too.
I needed this!!! I will.be having a gj placed Jan 8th. I have mitochondrial disease and gp and I said it was my job to do what is necessary to make me be able to enjoy my family and Grandson!!! This has been a hard decision to come to but I feel 100% at ease with it now 💚💜
I had a NG tube for about two weeks when I was in the hospital. If you get the right kind of NG tube for you it will not hurt as much. There are many kinds and different kinds work for different people (the flexible ones are more comfortable for long term). But if you drink from a water from a straw it really helps. Good luck Mary!
tube tip! keep your eyes open when they are putting it in, even though it feels more natural to want to close them and not look. If you shut your eyes, it can make you focus internally on the tube going in, which can make it harder to keep calm. after the insertion, they take the "inserting" tube part out, and leave a MUCH smaller part in, and it feels much, much better - it does not feel like the sinus tube for the entire month! best of luck!!
I had an NJ tube for a while. I know it's pretty easy for NG tubes to come up when you vomit (I've had friends wind up with one end coming out their mouth, the other end out their nose). NJ tubes may be more stubborn than NG tubes but I honestly don't know. Might be worth asking about before you get the tube. A G-tube seems more resilient to vomiting, but I understand that that's more surgery which is not what you need right now. And who knows! It could be TOTALLY FINE. Here's hoping for that! Pro tip: get the smallest tube they'll let you have (is way comfier). And the placement under fluoroscopy is unpleasant when they're trying to pass the thing into your small intestine, but it's so minor compared to what you go through on the regular. You'll be fine. 😁
Mary,I sur hope that the feeding tube gives you the best .This way you can be healthy to fight .I pray everything goes well for you.I enjoy watching .Margaret from Florida.💝😀
I had an nj tube while I was in ICU. I could only stand it for about a week, bc it kept feeling like something was stuck in my throat and when I took pills it felt like they got stuck where the tube went but me being malnourished, it helped. Mine was out in right at my bedside, and it wasn't even bad! I had the same thoughts that you do about me gagging and it being a horrible scene and throwing up but nothing happened they just said swallow hard and it went right down so I'm hoping that you have the same experience. When I got out of ICU I was supposed to go to an appointment and talk about what type of feeding tube I would want to go with but right now I'm too scared to have a permanent feeding tube put in even though I know it can be taken out at any time, I figured I would try eating first and if I still couldn't do it I would Have it as my back up plan. I love you guys I watch you every day and you are my encouragement to keep going through the days. I just got out of the hospital today after a week stay! I would love to send you a package, do you guys have a P.O box?
Hi Mary! Just some advice for the NG tube, 1) try and relax when they put it in and keep swallowing right after its installed (the discomfort will go away after a day or two but make sure you swallow anyway) 2) always check for leaks before you go to bed (it is smells gross if you sleep in it from leaking haha) 3) make sure you keep flushing it on a regular basis to prevent anything from getting stuck in the tube and going bad (really bad smell) I hope it helps you a lot!! Sending love and prayers
I think it's called an NG tube for Naso-gastro. I wish you had my appetite Mary LOL ! You'd be better in no time flat. Praying for you, Peter and Oliver. You remind me that my life could have more struggles than it does and to smile and remember what you have to go through everyday. As always, I will watch your new vlog tomorrow.
My 7 year old had a GJ tube. She aspirates her vomit [she also developed Gastroparesis] so with the food\fluids [only meds go by G into her tummy] going into her intestines there isn't usually anything to vomit and or breath in. She's also gained better on J feeds the past 11 months than she ever did on G feeds. It took us a while to work on getting the right formula\Pedialyte mix and finding her sweet spot as far as the rate. Once we were comfortable we came home and worked up to her full rate at home.
I'm a nursing student, and I'm sorry to say that ng tube insertion is very uncomfortable. Your eyes may water a bit and may activate your gag reflex. But based on your current conditions and your doctors recommendations, it will help you in the long run! Good luck!
Hi Mary! Firstly, I am cheering you on. Secondly I was (in a way) happy to hear that the culture from the lung sample should be coming soon, and that you have a great team ready to help and fight beside you makes me really thankful. And hopeful as well. Lastly, I can sense the nerves and tension about the nasal tube ... and I can say I had to have one in my nose all the way to my upper stomach for just a couple days due to an upper g.i. bleeding (random complication of Turners Syndrome). That said and so I am not going to speculate exactly how your experience will be, because we are all just so different. But I can say the going in ... part .. once they picked the good passage .. was oddly somewhat comfortable and only was not fun for a very short minute. Peter can help you with that part. Also in the beginning it was a quite warm (slightly annoying) sensation that can be helped with the right pain medication for you to make it way more comfortable to have it in in the beginning. So it is definitely doable. You have been so strong and gone through other stuff, I have full faith that you can do this. I will be praying for you tonight. I will pray that the lord helps guides you and your team in this new challenge. I know you can be strong. 💕🤗 You are a one in a million kinda woman. And we care. Katie Jo
I like these informative videos. It's interesting to hear about the many problems and factors of CF. This video reminds us of the hard battle of CF and yet you keep on going in such high spirits Mary
My heart totally goes out to you. I have had an NJ tube once but that was on,y because I was in a two month coma. Then I woke up and had a stomach feeding tube. I don't remember the NJ tube but I do remember the stomach feeding tube that I had for three months after. Thank the Good Lore doctors were satisfied enough with my weight I don't have to have one. Thankfully I can hold on to my calories petite still yes, but healthy thank God. I always pray for you Mary! You are a beautiful person inside and out
Mary, I had the MJ, tubing done, it is not pleasant, but you're correct on, we must do things for our body. I see my surgeon on the 18th of this month and we will schedule a date for my surgery. I can not wait. All i told my surgeon was, I would not like to have my surgery on the 28th, my birthday. Hugs, Love, Peace and Hope to you and Peter and that cute poodle boy Ollie.
Mary, I had to get a test for swallowing where they put a tube in my nose to my stomach. It was not bad at all. Just keep swallowing as much as possible when they put it in. They numb your nose before hand with some jell you snort up. I didn't even gag because I just relaxed and swallowed as fast as i could. It will take a little getting use to but little kids do it all of the time. Try not to over think it. My experience was not bad at all.
Hey Mary hope ur ok I've had lots of NJ tubes but due to severe gastroparesis placed under X-ray. Just ask for the local anaesthetic spray that makes it more comfortable. Unfortunately being sick can still mean there's a chance the tube will displace so it comes out the intestine and refluxing feed back but if it's placed far down enough and they use a weighted tube it should be ok. I also have severe dysmotility throughout my gi tract so had constant problems with tubes but many manage ok and if it works you can have one placed via the abdomen in the same way (I'm due to try another one of these but stitching to my bowel to try and keep in place!). Lots of hugs x
you're in my prayers Mary! I've had an NG tube myself a few times for bowel obstruction and it definitely was not comfortable. To me, it was a little difficult to swallow/eat, and it was always tickling my nose especially when I tried to talk lol. My advice though, is when they go to do it, try to swallow the entire time is going down, it kinda helps the flow of things. Good luck Mary! you've got this!
Hi Frey Guys! I am so sorry to hear you may have an NJ tube. I had an ng tube during a hospital stay in 2013 and well, it's not pleasant. My hope for you is that the NJ tube is easier for you than my experience. My prayers are with you guys, thank you for sharing your life with us!!!
Mary you are an inspiration! Amazing how positive you are ! Love you both and Ollie boy. Question: do you sell your prints out of the US ? I'm a UK resident and was just wondering xxx
Hello Peter and Mary, you guys probably aren't going to see this or care about this comment but I am going to type this anyways. I got super sick early September 2016, with a rough cough, migraines, bone and lung pains, shortness of breath, constipation, and nausea and my paediatric doctors couldn't figure out what was up with me. I was put on different inhalers and pills and was tested for different things but everything was coming out clear. We got chest x-rays done and they were clear. After months of waiting we finally got an appointment with a pulmonologist for the 31st of January. I just wanted to let you know how much watching your videos has helped me through hospital stays and rough days at home or school. Watching Mary get through each day helps me get through mine. Thank you for the support that you don't know your giving. Thank you for the laughs that I get each and everyday when I watch your videos. I love you guys!!❤
Hi Mackenzie! Thank you for sharing a bit of your story! I'm so thankful to hear that you find encouragement in our videos! You keep on keeping on! Please do keep us updated as you continue searching to find out how to best treat your body and the complications you are having!
Mackenzie G Prayers for you. Please keep your Frey life family informed.
The Frey Life Mary I understand you 100% about the weight thing. Mine is down also, I had blood work done and everything came back normal thank god. I have Ehlers-Danlos it's a rare tissue disease. So I feel your pain.
The Frey Life Thank you for answering, I am glad you guys know you have my support on behalf of everyone. My prayers are with you guys tonight. Love to Mary, Peter, and Ollie! From Mackenzie, and Scout!❤
rae1957tn Thankyou, I'm so happy to have support.
That Peter is such a trooper!
oh so true..he is one of a kind guy !
Could my fellow Frey life family members be praying for me please? I'm going under for two surgeries at one time. I'm having a toe amputated. And... I have a self cath channel that I've been having problems with that another doctor is going to try to fix. Thank you all.
kayla Barnes Will pray!
kayla Barnes sending prayers your way
I will definitely pray.
kayla Barnes I will be praying and thinking of you Kayla. Much love 💚
kayla Barnes Praying for you Miss Kayla.
***✋🏼No Coughing ✋🏼***
-Mary 1/11/17
hahaha- I tried so hard!
Mary so sorry you are still struggling with your weight. As a nurse I and lots of other people can give you a few tips. On day of placement make them go at your pace. If you need a break so be it. They'll wait. Ask to have a drink of cold water with a straw if not offered. After placement you may feel like you have something in your throat. Cold or hot liquids often help. Sucking on ice chips sometimes works wonders. You have to determine which works best for you. Your nose also may be come irritated. The tube will be taped someplace on your face. Adjusting that can help. Also Vaseline can lubricate the nostril. There are all different products to put down your tube. If something doesn't agree ask for something different and remember delivering it too fast may give you diarrhea. :o Good luck.I'll be rooting for ya.
MARY SO SORRY YOU ARE STILL STRUGGLING WITH YOUR
MARY SO SORRY YOU ARE STILL STRUGGLING WITH YOUR AS
MARY SO SORRY YOU ARE STILL STRUGGLING WITH YOUR
WELGHT AS A NURSE | AND LOTS OF
OTHER PEOPLE CAN GIVE YOU A FEW
This popped up today. The day the “Bringing baby home” video went live. What a difference.
Hi Peter and Mary...I do not have a NJ tube, so I can't speak to that directly. I have a permanently implanted tube (a j-tube). When it was placed, I had lost so much weight and was really struggling. My health problems are really different than Mary's. I have severe gastroparesis, and some other things. But even though our situations are different, I can relate to Mary's struggles with eating and nausea, which she described so well. I can say that having the feeding tube placed did really help, at least for me. I stopped losing weight rapidly, and stabilized my weight. I regained some strength. I'll be remembering you in my prayers, Mary, hoping that the procedure to place the tube goes as smoothly as possible with the minimum of discomfort! Hang in there! Wishing you all Christ's peace, strength, and hope.
I love seeing Mary cutting cards. I have always loved the sound of the paper cutter when it's in action. Weird, I know ;)
'The opposite of comfortable' LOL ❤️
Keri C 😂
Keri C i laughed at that too. 😂😂
Mary does a nice job speaking to the camera explaining her bacterias. Good stuff. Peter is without question a great man. Best wishes to you two. Keep it rollin.
I am a Nurse, and I still learn so much from you guys. The information and awareness you are sharing is amazing!! Thank you!!!
I started watching your channel around 1 year ago, as a student nurse the videos have given such a great insight into an illness that previously I had very limited knowledge! Thank you for your daily videos, they certainly remind me to smile everyday!
I've had an NJ tube and several NG tubes and I've never thrown up or had a bad experience. It's not fun, but it's not terrible. Just keep swallowing, it feels uncomfortable just once it's in your nose and starts going down but once you swallow it past that point it's really easy. Good luck!
Sara Ringer it’s also because of her cough, if you cough very much you can start throwing up as well so that’s probably the biggest problem
As much as I love the old intro...I am LOVING the new one! Makes me smile every time! 😁
I have a peg tube and it was such a huge blessing in the long run. At the beginning I was hesitant, but it allowed me to keep weight on and stay healthier! Wish you the best of luck!
Mary, your hopefulness and always optimistic attitude is so inspiring. I admire the two of you so much. Love this channel. I'm assuming you already have a dietitian who is trying to help you with weight maintenance etc?
Well you still look amazing for having CF.I think your great attitude is a big help and the support from Peter and family and even Oliver .You are just amazing.
watching the update part makes me feel better about myself because I have ADHD and I have troubling gaining weight and I have always been bullied about my weight but this video make me more confident about myself. hope today was amazing for someone. Hope someone reads this and feel confident about a rough time in their lives and smiles or laughs today
Regan Sparks I'm sorry to hear about people mistreating you for that. It's great that you were positively affected by this video. 🙂. Hang in there and take care of yourself.
Regan Sparks hey don't worry it gets better, I too have ADHD and always had problems with my weight, I now have that weight but the people who did bully me for being underweight are now over weight it's not are fault we super active :)
Chelsea Caswell thanks I am now better then ever because I'm homeschooled for 9th grade and maybe all through the high-school
Regan dear, I'm sending you a big, Loving Motherly hug from Ohio...
My meds stifled my appetite as a younger kid (as I've gotten older my meds have had less of an impact on my appetite) and when I was in upper elementary school and we learned about eating disorders people thought I had an eating disorder, my classmates kinda bullied me for that. Looking back, it's almost nice because they did it out of some level of concern for me, obviously it didn't feel like that at the time, but of the other experience with bullying this is the only one that I can think back to and see that it wasn't an issue of ill intent, just kids that didn't know what else to do.
Great replay! *smooch* How brilliant the feeding tube sounds, I hope it goes as planned.
Even to hear about the blade of grass up someone's nose made me shiver. How can you!! :D
You're so Brave Mary! ❤
I have crohns disease and have had many NJ tubes. And you will get used to it in a few days. You wont even feel the tube anymore. It will give your body a lot of energy and it saved my life a few times. If you have any questions, just let me know. I am a pro when it comed to feedingtubes :-)
poor mary :( i hope you get better soon. sending you positive and healing vibes.
That NJ tube sounds really clever! Hopefully it will help you feel better Mary. Sending Love x
Mary, you are the cutest human ever! "the opposite of comfortable" "no coughing" haha! You make me laugh! ^_^ I'm glad to hear about the care and plan you have for the future. I will be praying for this new treatment to help you gain weight, and fight off this mycobacterium.
I mean indirectly help you fight the mycobacterium* by giving your body better strength and resources.
Prayers for you Mary!! 🙏🏻🤗💜
good luck with the NJ tube. I love how you share your lives ~ the good, the bad, the ugly ~ with your The Frey Life family! You are a strong, amazing woman, doing everything you can to help your body be the best it can be. Seeing the love and support that you both have for each other is admirable~ stuff of true love! Praying for you.
"No coughing" had me laughing so hard. I love you guys so much 😂😍
Hope the NJ is a good option for you Mary! Be prepared to cry, gag, and puke during insertion. But once it's in and your body is more nourished, I think you'll be pleasantly surprised. It's always the little things for me, like a flight of stairs, where I am thankful my body has the extra energy it needs to keep going. I made the switch from a nasal to a surgical tube last fall and am so pleased I did. When I'm sick or in a flare I just plug in overnight feeds and boom. Keeps my body weight stable and helps me battle whatever is going on. It's unpleasant at first but so so worth it. And I know you're strong. Hugs girl! 💕
Positivity never fails. Hang in there.
Mary, please ask if it is possible, given all your unique med responses, for spray freezing before they feed the tube up your nose. It lessens the immediate discomfort. Also ask about tube sizing if you have a strong gag reflex, smaller is way less intrusive and perhaps more likely with supplemental feeding because less has to go in than total tube feeding. When it is fed into the stomach and through the duodenum it is less likely to be coughed or tossed out with gagging and such. Also not as easily pulled out. My son had an NJ temporarily put it at age 7 and though he did not enjoy the experience of it going in, he barely noticed it once it was in which shocked me. I hope and pray your experience is similar to my son's and it is only a temporary nuisance and you can have one less worry aka vomiting your foods. You and Peter are amazing people. I am so glad that you have the focus of learning and preparing even when what happens isn't always expected. It's not always optimism or pessimism...realism fits right in there and it is always important to cover the bases. Bless you both 💓
hey Mary. I've told you before I don't have CF, but I really relate to you and your struggle. I've been in and out of the hospital and they don't know what's wrong but I just have no appetite and can't eat right now either. I hope you start feeling better. by the way, i didn't see the comments so I don't know if it was already answered, but an NG (nasogastric) tube, stops at the stomach, and an NJ (nasojejunal) goes to the small intestine.
I love you guys and you are an inspiration to me everyday!
Sending you a hug! hang in there!
Mary I have had feeding tubes in the past due to a rare medical condition. The whole procedure to the the nj tube isnt terrible. They numbed my nose and throat so i didnt gag at all. When i got the gj tube which was a tube that was in my stomach into my small intestines it wasnt comfortable but it helped me live. Now im done with those tubes and onto drinking boost drinks to get extra calories. My condition is called superior mesenteric artery syndrome
I love the new intro. I also love that you included the clip of Peter using his drone like I recommended! :) :) :)
Beautiful Mary!
Prayers going up for you and your husband. Triple blessings sent your way. Hug the dog.
I have a g/j tube and it saved my life!! I can't live without it, but I'm so thankful that we found this so I can still here and can be a wife and mother. I want to watch my daughter grow up. Anyways enough of that. We tried to just do a g tube but I still couldn't keep it down so they put in the g/j tube and has worked. I have had several nasal gastric feeding tubes and it wasn't to bad. Hopefully it won't be to rough on you.
Hi Frey Life I wanted to take a quick moment to share my story with you. When I was eight or nine I was hanging out at my friends house. She had this really high swing set and we were on top of it messing around and having fun. I was siting on the top and I fell down landing on my knee. I ran home crying and got better the next day. Only that didn't last long. I ended up staying home for a week because I was in so much pain I'm thirteen now and I have been into mutipul doctors to try and figure out what's wrong with my knee. I'm currently I a brace right now after falling and landing on my knee. Everytime I fell sad because I can't be a normal kid I always turn to your TH-cam channel I've always struggled with being me but I love your channel and you make me laugh. It's a small thing to say but thank you for brining my smile back :)
Hi Mary and Peter I've had a N/G tube ( Nasal Gastric) . When the tube was being passed it tickled the back of my throat, I then had an xray to see if the tube was in the correct place . The N/G Tube had a metal wire inside the tube so it showed up on the xray but when they take the metal piece out its hardly noticeable at the back of you're throat. I think you're decision is a good one for you . You will notice the difference in not feeling as tired all the time because you are getting the correct nutrition . Hope all goes well . God bless you both .
I am praying for all of you. Illness is so taxing on mind, body and soul. You guys are amazing examples of how people should treat one and other. 😊
Hey The Frey Life! Mary, it's so funny how you were explaining all of your nutrition stuff, and talking about your portal hypertension and the effects that has on the rest of your body - I am a medical student from the UK currently in the midst of revision season, and I have an exam coming up that covers all of what you just explained! I thought I'd also just take the opportunity to say what incredible people you both are! I've been following your story (on and off) since around June, and funnily enough I found you because I did a respiratory module last year that lightly touched on cystic fibrosis and I wanted a bit of context as to how people with cystic fibrosis live day-to-day. Never did I imagine I'd become a follower of your story, you are both truly inspirational in how you can pick up the camera every day and so humbly show us the good and the bad. You guys really paint a fantastic image on what marriage was intended for. You're doing fantastic work, keep it up - God bless!
Hi Mary and Peter. Thanks for keeping us updated on your medical journey. Sending prayers and hugs your way. ❤🙏
Hi Mary and peter, I don't know if you will see this but I have severe Crohn's disease, I have had around 8 NG tubes, although I have never had an NJ tube, having the tube put down is not pleasant but it doesn't last long, your instinct is to gag but the most important thing is to swallow and keep swallowing to ease it down, you will probably have a sore throat for a few days and it takes a few days to get used to the feeling of having the tube but after them few days the tube loosens up and you will forget it's even there, having them taken out is easy, just hold you breath and it's out in seconds, honestly Mary, you've been through so much and you are a trooper, you will be okay 💕
Thank you so so much for explaining the whole eating and calorie absorption issues, as a mom of a mini CF warrior that can not explain her issues to me yet, I appreciate you sharing so much!
A feeding tube sounds super scary, but I can understand where you guys are coming from. A feeding tube sounds like it could work really well for you, Mary. Wishing you the best as always x
Mary you are such a trooper , you don't complain and are willing to do whatever it takes to help you . Your positive attitude is so motivating I know you have your moments of course you are human, who wouldn't. I am keeping you in y thoughts and prayers as always! I love you girl! 💕🌞✌️🇨🇦🎀🙏🏼
NG tube placement isn't the most fun but hopefully it will be amazing to get all the nutrients you need. My son had several when he was younger and finally had a feeding tube placed in his stomach and also a GJ tube (which goes into the small intestine to help with calorie adsorption to help with his SEVERE reflux). He couldn't cough or sneeze with throwing up and had to have surgery for it. It's takes stress off of eating too. You can eat for pleasure and also get important calories with the NG tube. It's also a huge plus for meds that taste bad. Just talk to the pharmacist about getting it in a form that can go through the tube! We are cheering you on Mary!
Stay strong and positive, Mary! You got this! 💚
Hi Peter and Mary I just wanted to tell you how amazing your videos have been for me, in early October I broke my ankle and in recently started bothering me again. You have really helped me through the sleepless nights of not knowing what the doctor is going to say. We still don't really no what is wrong with my ankle and I have an MRI coming up. But I wanted to let you guys know how much you have helped me through this difficult time in my life. I know there are things that can happen that are a lot worse but this have been really hard for me. Thank You soooooo much.
I have had multiple NJs, the placement isn't nice but it isn't terrible! Before they start, ask them to go at your pace, if you need a break, tell them! Make sure they give you a drink of water and a straw so you can sip and swallow to help the tube go down! Usually, they will get the tube as far as your stomach before turning on the fluoroscopy and then they aim for the valve at the bottom of your stomach (by wiggling the tube) to try and get the movement of your stomach to pull the tube down to the jejunum. Then the pull the guide wire out of the middle of the tube and you are finished!
After placement, find a way of taping the tube that is most comfortable for you, the way the hospital tapes it isn't very comfortable! Also, remember that there are lots of different types of feed so if you don't tolerate the first one, don't worry, there are plenty of other options!
Also, if you find the sensation of the tube in your throats weird for the first week or so, try drinking hot drinks or eating/drinking particularly cold things because sometimes the familiar feeling of heat or cold can be comforting!
I wish you all the best, I hope it all goes well and you gain weight soon!
Would canabis help with the appetite? Not smoked but maybe in edible form or suppositories. Like used by cancer patients.
Bill Tomy great idea! Also helps with nausea
Y'all are in our prayers every day! I hope that you get answers on what bacteria it is soon so you can start doing something about it. We have had a rough couple of days. Our 2 year old managed to break his foot. It's like having an extremely heavy newborn again.
Dear Mary and Peter, I subscribed to your channel awhile ago but I have never commented. But I do want you to know that I am praying for you and as you describe your symptoms it gives me more specific things to pray for. I love watching your vlogs and I have to say that the Grace that God has given you to go through what you do is incredible! You are truly an inspiration. I was praying yesterday that you would begin to feel better and I am glad to see that you are feeling a little better! Anyway I pray the Shalom of God over you, which means peace and health and every good thing! Love Mary-Alice
I cry watching your videos
A few years ago a good friend of mine passed away from CF. She was 21
I’m praying for you.
Still continue to pray for you! God bless you and Peter!
From personal experience: a feeding tube isn't as comfortable as a nice warm blanket but it sort of "relaxes" the brain with the knowledge of finally getting the needed food without the possibility of throwing up. I had moments of frustration when I couldn't stand the feeling of the tube in my nose but doing things that made me happy helped get over this :) after two and a half years I am tube free and on the way to a stable health :) I am sure you'll do great, Mary! Keep your heads high, I believe on you ♥
Mary: No coughing!
Mary immediately after: *Coughs*
Hahah Mary you're so cute!!! "How's this angle?" 😍 adorable
How do you keep so upbeat with all the things every you go through. I have some problems with my back, which is nothing like you have, and I get so sick of it. Please tell me how you do it. I really feel very proud of you for the way you accept all the complications you face. Stay strong. Give Ollie a hug from me.
Hi Mary and Peter! I'm 23yrs old and I have been living off supplemental feeding for a year now. I have had many NG and NJ tubes during my courses of treatment, however I now have a J-tube (going through my abdomen, not out of my nose) because my supplemental feeds have become a long term solution. Anyways, Mary I wanted to tell you that the thought of getting the tube placed is much worse than the procedure itself. It will be a tad uncomfortable but they do it so fast and once it's in the discomfort dissipates quickly! After about a day with it you don't even feel it anymore so there really won't be anymore discomfort. Just wanted to comment and wish you good luck and let you know I'm sending you loads of good vibes. I hope you start to feel better! I'm so thankful for your blogs as I find a lot of comfort in them as I am also chronically ill and continuously fighting day by day. Thanks again!
I got my print in the mail yesterday and it's lovely! It will be a great addition to my home ❤️
Oh hooray!!!!
Thanks for update! Will continue praying for some answers and progress!
Mary, I am so glad to hear about the feeding tube! I honestly think you will have more energy and feel better in general. And once they have the right meds in your system as well, you'll be up to your old escapades in no time! 🌞
I myself haven't had an NG tube but I do know quite a few people in the Ehlers-Danlos community have had them because of Gastroparesis (slow motility, slouchy, stretchy digestive systems that can't digest food correctly). You are so right about giving your body the energy it needs to fight. I know there will be others here who can give you good advice on what to expect.
112musician do you have ehlers danlos... I do too.
Yes, I do. Classical (Type 1). EDS has been turning my life upside down lately! This channel has helped me deal with the emotional aspects... different illness, but so many of the same emotions! Peter and Mary have taught me so much about laughing and living in spite of it.
112musician yeah me too. sometimes I feel like I'm not entitled to this chanel but finding another EDSer is fab. personally I just hate the feeling that my body is useless. I have a type 3 dx but they are thinking about crossovers noe because of all the complications I've had recently. hope you are as okay as you can be. gentle hugs so there are fewer dislocations
112musician I have type 3.
112musician I have EDS too! also I was officially diagnosed with gastroparesis two days ago!
Love you guys!! Praying for you Mary!!
I am praying for you too! After seeing your old videos and the video of you in your wedding dress I realized how much weight you had truely lost and started praying they would figure out a plan for that. I am thankful you are getting an nj tube no matter how horrible they are to think about getting. God bless!
Well, it sounds like there is at least a plan. No one has run out of ideas. That is always good!
Awww...Mary! I'm sorry you're going to have to have an NJ tube but I pray it will work really well for you and doesn't cause much discomfort at all! Hang in there! You have so many people praying for you and cheering you on. ((Hugs))
I found your vlog by accident yesterday and had to come back today to see how you are doing. I have NEVER commented on anything like this before but felt the need to say that you could absolutely tell that you felt well that evening. You had beautiful rosy cheeks. I am a nurse though CF was not in my area of work... I thought I recalled that with CF you also have hyper mucus production in your intestines...so maybe that is also causing some clogging, so to speak, which is hampering the absorption of the nutrients that you are eating/drinking.....another reason for your weight issues. You are the sweetest couple! And Peter....you are soooo incredible with your endurance, patience and unconditional love for Mary that you are making all of our husbands look bad :-) Both your positive outlooks and Praising the Lord are very refreshing.....Blessings to you!
You two are an amazing couple. I'm blessed with a fiancee who's sticking behind me even though I have only two or three months left to live. I know what it's like to not be able to eat. My cancer started in my esophagus, and that tumor has restricted what I can swallow. God bless you both.
Prayers sent your way from snowy Colorado!
Tiff Roybal I live in Colorado too, Colorado Springs to be exact. :)
NJ tube! I am so so happy you guys are considering this. I think it is a great idea.
New to your channel.. You are such a fighter! LOVE your service pups name also! My son's named Oliver. LOVE that name! Much love!
I've had tests done with pH probes in stomach put in the same way as an NG tube. It takes about 5 minutes to install. The NJ tube (into jejunum of the small intestine) takes a bit longer. Having an NG inserted was honestly not uncomfortable - immediately afterward it feels like a "lump in the throat" for 1h or so just like a sore throat - after that I forgot the tube was there for the whole week it was in place tbh. If they offer you lidocaine or xylocaine spray to numb the nose before inserting the tube - being honest - it stings like crazy and that was more painful that having the tube put in. So you may want Jen to try doing it without and see if you can handle it and if not then take the spray. I'm living on Complan (similar to Scandishakes) for 3 meals a day at the moment as solid food sits in my stomach for 10h at a time and I have to use Domperidone to force it to empty, plus I aspirated stomach contents into my lungs. Looking forward to stomach surgery in the coming months to resolve it.
Hi, you guys are amazing! Your positivity is infectious. I watched your wedding video and it made me cry it was so beautiful! Sending love and hugs xx
I'm so glad you addressed this, Mary. I have Crohns and have often wondered if you have ever done TPN (total parenteral nutrition). Its helped me so many times. There was a newby gastro, who wanted me to have an NG (nasogastric I think) tube placed. I resisted simply bc what's always worked was what I wanted. That was a Hickman cath. My surgeon agreed bc my intestine was riddled w scar tissue and Crohns and insufficient. One thing when receiving TPN thru the Hickman is that it makes my brain not want food bc it's getting the fat, calories, and vitamins thru my veins. You may notice that.
If it goes into your your intestine then it is a nj tube. NJ tubes are very uncomfortable when you first have them placed. But if you use some throat numbing spray that will help a lot. I have gastroparesis, we have something in common, we both have an incurable disease! If you aren't familiar, gastroparesis means my stomach is paralyzed. It cannot digest food. So I vomit everything I eat and sometimes what I drink. I got so sick in November bc I couldn't keep any food or fluid down and had a g-j feeding tube placed. I feed about 20hrs/day and this change in my life has been very difficult. But I am thankful to have it bc it bc it is keeping me alive! I am glad you are considering a nj tube. You might find it helps you in a lot of ways even if your pfts are not so great. I will be praying for you Mary! Let me know if you have any questions!
Jessica Hopper I have gastroparesis too(: I've had NJs for 7 weeks now, do you have any problems with your gj? I'm trying to decide between that and just a j tube!
Lauren Chevalier I have not had any problems with my g-j. I would definitely recommend it. I was only really sore for a few days and then the pain was much more manageable. I have never had a ng or nj bc I know I couldn't tolerate it. Them putting one in during the procedure to place my g-j felt like torture to me. But yeah, I've had no problems with clogging, my feeds run great, nobody even knows I have a tube when I'm out, etc. I would definitely talk to your doctor about it. And also, I'm truly sorry that you have to battle gastroparesis too.
I needed this!!! I will.be having a gj placed Jan 8th. I have mitochondrial disease and gp and I said it was my job to do what is necessary to make me be able to enjoy my family and Grandson!!! This has been a hard decision to come to but I feel 100% at ease with it now 💚💜
*NO COUGHING* haha love you so much mary
I had a NG tube for about two weeks when I was in the hospital. If you get the right kind of NG tube for you it will not hurt as much. There are many kinds and different kinds work for different people (the flexible ones are more comfortable for long term). But if you drink from a water from a straw it really helps. Good luck Mary!
tube tip! keep your eyes open when they are putting it in, even though it feels more natural to want to close them and not look. If you shut your eyes, it can make you focus internally on the tube going in, which can make it harder to keep calm. after the insertion, they take the "inserting" tube part out, and leave a MUCH smaller part in, and it feels much, much better - it does not feel like the sinus tube for the entire month!
best of luck!!
I had an NJ tube for a while. I know it's pretty easy for NG tubes to come up when you vomit (I've had friends wind up with one end coming out their mouth, the other end out their nose). NJ tubes may be more stubborn than NG tubes but I honestly don't know. Might be worth asking about before you get the tube. A G-tube seems more resilient to vomiting, but I understand that that's more surgery which is not what you need right now. And who knows! It could be TOTALLY FINE. Here's hoping for that! Pro tip: get the smallest tube they'll let you have (is way comfier). And the placement under fluoroscopy is unpleasant when they're trying to pass the thing into your small intestine, but it's so minor compared to what you go through on the regular. You'll be fine. 😁
Mary,I sur hope that the feeding tube gives you the best .This way you can be healthy to fight .I pray everything goes well for you.I enjoy watching .Margaret from Florida.💝😀
I had an nj tube while I was in ICU. I could only stand it for about a week, bc it kept feeling like something was stuck in my throat and when I took pills it felt like they got stuck where the tube went but me being malnourished, it helped. Mine was out in right at my bedside, and it wasn't even bad! I had the same thoughts that you do about me gagging and it being a horrible scene and throwing up but nothing happened they just said swallow hard and it went right down so I'm hoping that you have the same experience. When I got out of ICU I was supposed to go to an appointment and talk about what type of feeding tube I would want to go with but right now I'm too scared to have a permanent feeding tube put in even though I know it can be taken out at any time, I figured I would try eating first and if I still couldn't do it I would Have it as my back up plan. I love you guys I watch you every day and you are my encouragement to keep going through the days. I just got out of the hospital today after a week stay! I would love to send you a package, do you guys have a P.O box?
| HAD AN NJ
Hi Mary! Just some advice for the NG tube,
1) try and relax when they put it in and keep swallowing right after its installed (the discomfort will go away after a day or two but make sure you swallow anyway)
2) always check for leaks before you go to bed (it is smells gross if you sleep in it from leaking haha)
3) make sure you keep flushing it on a regular basis to prevent anything from getting stuck in the tube and going bad (really bad smell)
I hope it helps you a lot!! Sending love and prayers
I think it's called an NG tube for Naso-gastro. I wish you had my appetite Mary LOL ! You'd be better in no time flat. Praying for you, Peter and Oliver. You remind me that my life could have more struggles than it does and to smile and remember what you have to go through everyday. As always, I will watch your new vlog tomorrow.
Good luck, Mary! I hope the feeding tube helps.
I had a feeding tube! I don't think it will stay down due to your coughing tho. Good Luck!!
My 7 year old had a GJ tube. She aspirates her vomit [she also developed Gastroparesis] so with the food\fluids [only meds go by G into her tummy] going into her intestines there isn't usually anything to vomit and or breath in. She's also gained better on J feeds the past 11 months than she ever did on G feeds.
It took us a while to work on getting the right formula\Pedialyte mix and finding her sweet spot as far as the rate. Once we were comfortable we came home and worked up to her full rate at home.
I'm a nursing student, and I'm sorry to say that ng tube insertion is very uncomfortable. Your eyes may water a bit and may activate your gag reflex. But based on your current conditions and your doctors recommendations, it will help you in the long run! Good luck!
Hi Mary! Firstly, I am cheering you on. Secondly I was (in a way) happy to hear that the culture from the lung sample should be coming soon, and that you have a great team ready to help and fight beside you makes me really thankful. And hopeful as well. Lastly, I can sense the nerves and tension about the nasal tube ... and I can say I had to have one in my nose all the way to my upper stomach for just a couple days due to an upper g.i. bleeding (random complication of Turners Syndrome). That said and so I am not going to speculate exactly how your experience will be, because we are all just so different. But I can say the going in ... part .. once they picked the good passage .. was oddly somewhat comfortable and only was not fun for a very short minute. Peter can help you with that part. Also in the beginning it was a quite warm (slightly annoying) sensation that can be helped with the right pain medication for you to make it way more comfortable to have it in in the beginning. So it is definitely doable. You have been so strong and gone through other stuff, I have full faith that you can do this. I will be praying for you tonight. I will pray that the lord helps guides you and your team in this new challenge. I know you can be strong. 💕🤗 You are a one in a million kinda woman. And we care. Katie Jo
I like these informative videos. It's interesting to hear about the many problems and factors of CF. This video reminds us of the hard battle of CF and yet you keep on going in such high spirits Mary
My heart totally goes out to you. I have had an NJ tube once but that was on,y because I was in a two month coma. Then I woke up and had a stomach feeding tube. I don't remember the NJ tube but I do remember the stomach feeding tube that I had for three months after. Thank the Good Lore doctors were satisfied enough with my weight I don't have to have one. Thankfully I can hold on to my calories petite still yes, but healthy thank God. I always pray for you Mary! You are a beautiful person inside and out
Just awesome people, You guys are a great blessing to my life, Thanks for making my day....where can I go to see your store?
Mary, I had the MJ, tubing done, it is not pleasant, but you're correct on, we must do things for our body. I see my surgeon on the 18th of this month and we will schedule a date for my surgery. I can not wait. All i told my surgeon was, I would not like to have my surgery on the 28th, my birthday. Hugs, Love, Peace and Hope to you and Peter and that cute poodle boy Ollie.
Mary, I had to get a test for swallowing where they put a tube in my nose to my stomach. It was not bad at all. Just keep swallowing as much as possible when they put it in. They numb your nose before hand with some jell you snort up. I didn't even gag because I just relaxed and swallowed as fast as i could. It will take a little getting use to but little kids do it all of the time. Try not to over think it. My experience was not bad at all.
Good luck Mary❤️ your strength and courage inspires me everyday. You guys are amazing and hang in there through this change!!
Hey Mary hope ur ok I've had lots of NJ tubes but due to severe gastroparesis placed under X-ray. Just ask for the local anaesthetic spray that makes it more comfortable. Unfortunately being sick can still mean there's a chance the tube will displace so it comes out the intestine and refluxing feed back but if it's placed far down enough and they use a weighted tube it should be ok. I also have severe dysmotility throughout my gi tract so had constant problems with tubes but many manage ok and if it works you can have one placed via the abdomen in the same way (I'm due to try another one of these but stitching to my bowel to try and keep in place!). Lots of hugs x
you're in my prayers Mary! I've had an NG tube myself a few times for bowel obstruction and it definitely was not comfortable. To me, it was a little difficult to swallow/eat, and it was always tickling my nose especially when I tried to talk lol. My advice though, is when they go to do it, try to swallow the entire time is going down, it kinda helps the flow of things. Good luck Mary! you've got this!
Hi Frey Guys! I am so sorry to hear you may have an NJ tube. I had an ng tube during a hospital stay in 2013 and well, it's not pleasant. My hope for you is that the NJ tube is easier for you than my experience. My prayers are with you guys, thank you for sharing your life with us!!!
Mary you are an inspiration! Amazing how positive you are ! Love you both and Ollie boy.
Question: do you sell your prints out of the US ? I'm a UK resident and was just wondering xxx