I m a rheumatologist from pakistan. I daily see patients in pain.but I have seen none like u. U r a very brave and charming lady.I like ur style as well. may u live long.
Hey, im also from pakistan and suffer from chronic pain as a teenager. Its extremely difficult to find a rheumatologist who knows about eds or is even willing ro acknowledge my pain. Where are you located?
Not sure why this vid popped up on my recommendations, but glad I watched! You have this calming energy but also such strength, w/the perfect mix of wisdom, positivity, and sense of humor. And what a beauty! Thanks for teaching me something new w/this vid; I'm off to check out your channel now. Sending so much love to you, and wishes for a fabulous day. :)
LunahSea Same thing here! For some reason it was in my recommendations, so I watched. Glad I did too. +Christina I have severe back problems too. I have had ten surgeries so far. I don't know how you remain so positive!? I don't even have as many issues to deal with and I get so down sometimes because of the chronic pain, knowing I'll spend the rest of my life like this, and I miss my life before the neurosurgeon cut the nerve to my left leg during back surgery. I will tell you that you should hold out hope that you will regain some nerve function. I did regain some feeling after my nerve was cut, which has been a blessing and a curse. Some of the areas I've regained feeling have become hypersensitive. Any touch, even a slight breeze, is extremely painful. Since your nerve issues are a bit different, I don't think this kind of thing will happen with your nerves though. Anyway, I have subscribed. Maybe I can learn a thing or two from you about having a positive attitude. Take care!
I unfortunately can relate all too well to the trials of numbness, nerve pain and hypersensitivity. I have had 10 (or 11 I can't even remember) neurosurgeries as well and have a similar problem. Some areas are completely numb, other hypersensitive, and so somehow both lol. I am so sorry. I hate knowing that someone else understands. Im honestly so so sorry that you feel this too. Some days I want to scream just having my clothes brush me skin. Just know that you are not alone in living with this, I am not always so positive, I have days where I am just frustrated to no end. And I think thats totally okay
Christina Doherty I'm not sure how I ended up on this video but I'm glad I did. I'm also very sorry to hear you live with pain too. I've had complex regional pain syndrome since 2005 so understand the realities of living with nerve pain. Sending positive wishes your way.
I have EDS and had Kyphosis-Scoliosis and had to wear a brace like yours for a long time. I had most of my disks fused and Harrington rods. I feel your pain and hope you feel better.
I haven't had any discs fused, but I've got Harrington rods that were placed in 1997 for a backwards "S" curvature of Scoliosis. I wore body braces for 3.5 years, 23 hours a day. I've since been diagnosed with EDS type 3 and EDS Kyphoscoliotic type. How long have you had your Harrington rods for? I certainly don't meet too many people with them. :)
dolphinsplash mine was 1987 and I was 2 inches taller after the surgery but now those lower 4 disks not covered by the Harrington rods are crushed or starting to be. Right now my L5 is bone on bone and they can't do anything about it. they tried burning the nerves and a lot of cortisone injections. I have EDS type classic which I heard is really bad. I think it's a mixture of the 1st 3 types. My daughter looked it up and EDS plus Kyphosis-scoliosis is at 65 reported cases on the planet. I didn't see it but she did and I trust her, she's going to college to be a doctor. She has type 3 but not to bad.
My surgeon was Dr. Davis W. Polly Jr.. He was in his residency when he did my surgery which was 11.5 hours long at Walter Reed AMC. He is working currently at The University of Minnesota, and the cool part is that many of my doctors since have met or know Dr. Polly from conferences and he is a top notch doctor. This is his page... www.ortho.umn.edu/bio/orthopaedic-surgery/david-polly
Are there any other options for fixing your back other then more fusion? I've wondered about this since eventually the bones deteriorate that are above and below the fusion. Best wishes that they can figure out another option for you!
I really appreciated watching this. I have EDS with pretty significant dysphagia and I'm waiting for a barium swallow that is scheduled WAYYY too far out. My diet has become really limited in the last few weeks since the swallowing issue became pronounced (never mind months/years of GI issues) and I feel awful. I'm really hoping that even a short term feeding tube situation will help get me back on my feet and hearing your story really helped me understand where I'm at in this journey. Best to you!
You are so amazing! I'm a nurse who works with feeding tubes in children so its very neat to me to be able to hear your reaction and feelings about your g-tube! My kids are mostly non-verbal so I don't have this kind of insight! I always try to teach my nurse friends about feeding tubes because unless you work with one consistently, they're kind of foreign! I've also worked with some children with mast cell activation syndrome. I can only imagine how difficult it must have been to go through the diagnosis. Hope you're doing well!!
Aww im glad I could kind of speak for them a little bit. When you are doing a bolus feed it feels a little bit like its running down your throat. Especially it its cold. If its cold you can really feel it and it feels strange lol. I always think of that scene form Willy Wonka when Violet is chewing the gum and says "I can feel it running down my throat." Otherwise when I am running the pump I cant feel it and it doesn't hurt at all. Hope that can shed a bit more light on it all. :)
Hi , I just want to say how proud I am of you and your openness. I myself have an o stony from severe crowns and my son has a permanent GJ tube so I can somewhat relate. I know that this vid is old but just an FYI.. my son is in danger if he has sedation so he had his Gtube switched to a GJ w no sedation or anything... and he has it replaced every 6 months w nothing.... he has never had pain or anything close to pain w this procedure just an FYI for future reference..., in case that is something you think you might need in the future... All the best.
Also....thank you for sharing your story. It is helping me finally understand my own issues. It helps me feel validated and understand whats going on with me. I don't feel so alone
I have a ton of food intolerances and at first I cried after watching and smelling people eat food I couldn't have but over the years I've slowly learned to enjoy the smells of foods without wishing I could eat them. It's been a slow process and I still get twinges of jealousy when people eat pizza or doughnuts. Hopefully, with time, the pangs and feeling like you are "missing out" will subside. I'm glad you've found a way to get nourishment that works best for your body.
I can relate, it is so hard, especially at first! But you learn that its just not worth it. Im glad you can enjoy the smells and overall experience, I am just finally getting stable enough that I can be around food smells without reacting and it is so so pleasing just to smell it. :)
You're an absolute inspiration. You've gone through so much in your life and you're still smiling and educating us all on these conditions. You're a breathe of fresh air and a strong young lady. Absolutely subscribing to your channel. I hope more people find you so that they can be absorbed by your charm and happiness. Sending all the positive, healthy and happy vibes your way beautiful!
I really appreciate seeing this video -- my motility issues aren't so bad that I need a feeding tube & I do hope that doesn't happen, but hearing about others' experiences is invaluable & I gain a lot from it. And, if I ever do need this information, it's wonderful to have it so well-put. :) I know you get overloaded with requests but maybe you could do a collaborative video with one of your friends who you hang out with at the EDNF conferences? One thing that I don't hear enough about is Vascular EDS; especially the non-vascular component... I recently found out that I have Vascular EDS meanwhile I have almost all of the criteria for Hypermobility type. It's all been very confusing & while I can read clinical papers about what "commonly" happens, it's always helpful to hear about experience & what people do to better their lives. Thank you for all of your videos -- they're so useful, but on top of that? Your voice is very soothing & your personality is very warm. Stay healthy xx
Thank you for the sweet comment. Im glad your motility isn't too bad, I hope it never reaches that point. I would absolutely love to be more collaborative, I wish that I wasn't so far away from so many of my friends. Someday for sure! I don'y know many people with VEDS, but have you ever discovered Cheyenne Love here on TH-cam? th-cam.com/users/flygirl2032 She has VEDS and is absolutely one of the sweetest people in the world.
You're welcome -- your channel has been so helpful to my mindset & staying positive [as much as one reasonably can when "good days" are increasingly scarce]. So you deserve credit for the information & help you provide to your subscribers. :) And thank you for the suggestion! She really does seem really sweet & genuine -- her videos are lovely & informative as well.
I thoroughly enjoyed the video :) You explain everything quite well and you have a lovely pace in your speech. I'm glad you could find something to help you with the ordeal you went through. Hopefully it gets easier from now on
this was in my suggested and its so weird because i have an exam on enteral nutrition (feeding tubes) literally tomorrow morning. thanks for being inspiring and helping me to understand more what im learning about. it makes it more real when you hear this from a person's experience rather than ready about case studies in a textbook.
+george pieloe So glad to be an example lol. So many doctors I have seen and doctors that are family friends have said that they basically had a single paragraph on EDS in med school and every time I have ended up in the hospital I have had to train the nurses on how to use the feeding tube. Its apparently just not common to see the tubes outside of pediatrics and geriatrics :)
my fiance speaks with you on a Instagram (grace) and i want to thank you for doing so.... i recently was diagnosed with eds after many many years of struggle and failed surgeries and you have helped her understand what we deal with and what to possibly expect...this has been extremely difficult for her and having someone that she can speak with that understands is irreplaceable ...so i truly thank you
Im so very glad that I could help you two in some way. I think you guys are great and I love that she is so willing to learn about your condition. Keep being awesome! :)
this just showed up in my recommended and its 1am here in Australia so i thought "why not" and you are truly AMAZING im so greatful i don't have any food allergies or health problems (besides infertility issues and random times i throw up for no reason). your video woke me up again, realizing what i take for granted every day 😊
This was so needed. Im also a EDS patient with Gastroparesis, mastcell and Pots. Im getting a picc line next week to start IVIG and daily fluids. Everything you said was as if it was coming from me personally. Sending you lots of love 🦓
great job again Christina! Your message will and is helping to educate more people how important it is to learn about this rare and complicated illness. My best wishes to you. Stay strong and well. GOD BLESS YOU for all you do. Love, Carmelle
Hi, I randomly stumbled upon your channel. I think you are such an inspiring, brave and positive girl. I think its important that more people are informed about things like feeding tubes so that people understand what its like and why you might have to use one. My Dad recently had to get a stoma (basically a bowel outside of the body) and it was so hard on him. I know people might look at things like a stoma or a feeding tube as weird, but we should be thankful that these things exist to keep the people we love alive and healthy. :)
+Kate Murray I totally agree. I hope your Dad is doing well with his stoma. I know that is something that can very hard to come to terms with and can be very embarrassing (which is such a total shame). I admit that I knew very little about feeding tubes before starting this process. Its just not something that a lot of people have, and it's certainly not something that people talk about
You are so inspiring. Like actually wow. Listening to your story, what you've been through and how positive you're able to be, makes me feel like I can get through anything. You are so strong and thank you so much for sharing your story and experiences with the world, you really are changing lives and educating people. I'll be keeping you in my thoughts and prayers! xx
I've broken my spine and developed a tumor and after getting that removed and getting my first surgery, my spine began to short and it started moving my lungs and heart so I can't really breathe well I was choking and developed a heart condition and ultimately had to have another surgery. But I still can't even imagine what you've gone/still going through. I hope you begin to feel better and stop needing to have surgeries
This was very informational, I'm very glad I watched. I just wish it was captioned because I'm HoH :( But nonetheless I learned a lot! I can never get enough disabled TH-camrs on my feed, so I'm definitely subscribing.
This video was extremely helpful! Thank you for talking about what it's like for you having a feeding tube and for including time stamps/questions in the description box. I am currently having a really hard time eating or drinking anything and I've been dealing with that for years. I end up having a lot of pain after eating/drinking that can last 30minutes up to a couple of days. I also experience nausea, indigestion, and burning when I eat/drink. I suffer from a lot of GI disorders and nothing that I have tried so far (with my doctors' guidance) has helped. I am looking into getting a J feeding tube. Although I wish I could eat/drink all of those amazing foods/drinks, like you said, it's just not worth it. I feel like a J feeding tube would be a blessing. It's hard to "live" when you are so sick all of the time. Thanks again for this video! ☺️💗
Thank you dear so much for these videos. Currently on the long road trying to get diagnosed. Watching you talk about your experiences is so calming and educational. I especially like watching your videos when I'm getting worked up from different flares, like diet changes because I have such severe nausea (yay nutrition drinks!) and the like or right now how a rib dislocated and is killing me (2x today, can't get it back now ugh). So yeah. Your videos are amazing. Thank you so, so much. It's really helpful.
Great video. I'm an emergency RN and I just thought I'd share this idea from some patients I see that have feeding tube, regarding the food cravings. You've probably already thought of this but in the event that you haven't...if you are craving something, some patients just chew food and spit it out. Obviously the ones that don't have difficulty swallowing. But it's something many of them enjoy because they get the taste satisfaction without the consequences. 😊
+Jenna Hopkins I admit, I have thought about it hahahah but my allergy issues cause food to burn my mouth and throat so it wouldn't really be worth it. Plus I don't think it would make me a very popular dinner guest 😂😂😂😂
Christina Doherty lol true. I've always assumed that they do the chew and spit routine in private and not around others eating. I would hope anyways haha.
I have both of these diseases! I have been having a hard time swallowing for a year now and I have never had a swallow study. I didn't even know it was a thing. these videos are very helpful, thank you for sharing your story. +Christina Doherty
My biggest tip is just to dress in lots of layers. I often wear a sleeveless top/dress with a sweater, jacket, scarf, tights, and socks. That way I can take off and put on layers as I please. Obviously thats a more winter/fall thing. Summer? Well, Summer I stay in the AC lol. I wish I had better tips for summer.
Yes! I do all of that! It gets really cold here in the winter but i spike random fevers so sometimes it gets steamy!! The summer is always very tricky, I usually feel very faint. Thank you for your tips!! If you have any questions feel free to ask, i havent had my diagnosis for long but i've learnt some pretty cool tricks!
you are absolutely amazing and inspiring. I ran into this video even tho I do not relate to you at all or was in no way planning to learn what you shared. I am more then glad I clicked play though. you are incredible, beautiful, and simply inspiring! I'm sure your videos help many people including me. we all take life for granted, I am always reminding myself not to and always thankful for life. sometimes not as much as one should be but today I definitely am, and glad that you feel liberated and have found a way to live better. I hope you get to enjoy food again soon and until then stay amazing!!
+steven litton Thank you for your sweet words. Im always glad to hear when someone just kind of stumbles onto my videos. Feeding tubes are definitely not something that a lot of people talk about so its kinda cool to educate people a little bit.
Kudos for reframing your story from a tragedy to a comedic docu-drama LOL. You educate & reassure others dealing with similar issues. Stay the way ur: Positive. Matter of fact. Honest. Humble. And grateful. You are going to have an amazing life!
Came across this video. My daughter had a G tube [A Peg for 2 months than switched to a button] for a little over three years and has now has had a GJ tube for eight months. Only her meds go by G everything else goes by J. She's only has eaten Dum Dum Lollipops since we had to switch to J feeds because food just stays in her stomach for so long and makes her uncomfortable or she throws up etc. The G tube worked really well it wasn't until her motility completely tanked that we needed the J. That hospital sounds so clueless. We were kicked out of the hospital a couple hours after tube placement. I had no idea how to feed my kid. I learned from TH-cam videos. So I love when I see videos like this sharing information with other people.
+Trekkifulshay I had to do my fair share of googling and video watching myself. Its crazy that they can let people go home without knowing how to take care of themselves or their loved ones. Hope your little one is doing well!
Seems like it would make sense to have someone come in and train people on how to use feeding tubes before discharge. She is doing much better J feeds seems to be the answer. :)
Christina Doherty I was literally just looking at pictures of all the different kinds of jewelry they make as adaptive equipment. It's really amazing how far we've come, the type of splint you wear are dynamic I believe? As in they move freely with your fingers?
I'm nine years old I have eds but I don't have a feeding tube and my is caused by hyper mobility and I get made fun of because if someone at school was trying to tickle my spin they see that I have a curve known as (scalliosis) I have pain and all that I walk with my legs straight I have hydro therapy and the people who say they want hypermobillity you don't it is painful.
Hey Clare! I am so sorry that you are having to deal with teasing at school on top of having EDS and scoliosis! Its so sad to think that people would tease someone for that. And im so sorry you are in pain. EDS and hyper mobility can be so painful and you are so young. Hang in there! We are always here for you!
Wonderful video about something that a lot of people don't really know about. One thing I was wondering is, is the tube uncomfortable with the brace or is it just something you've gotten used to?
At the beginning I couldn't even wear the brace with the tube. The original tube that they use sticks straight out from the body. But once I got the low profile mickey button I was able to wear them together. The mickey button tubing goes out at a right angle so I put a little donut of padding around the button itself and then can run the tubing up through the brace with little issue.
Awesome video :) I'm happy to hear you tolerate the neocate splash! I'll be switching to that formula as soon as it comes in since I'm having mast cell actions to mine. Excited to see if it helps my quality of life :)
+Kathleen Gagnon I really hope it works for you! I love that its a pretty thin formula so it feels really light. Not like some of those thick heavy ones that make you super bloated. Let me know how it goes!
Hi, I'm going through gastric issues now I'm in Wales UK, my Dr (gp) has said no more surgery as my shoulder stabilization wasn't successful. I mostly eat ice cream and quavers so not the healthiest of diets at present. Thanks for this vlog
Upon doing research as I move into this phase of getting a more permanent feeding tube finally after 7 months of having an NJ (and enough doctors pushing me to get a more permanent tube/my need becoming more dire) and now having been TPN dependent for just under 11 weeks now, I realize how few videos on TH-cam their are on particularly GJ and J tubes and TPN, so my research has been more google and article and blog based. For the most part I have been told get a GJ tube because of the aspects of gastric venting and drainage while feeding into the intestines (we also have discovered my pancreas isn't working properly to break down things after I had my NJ tube taken out 3 weeks ago and now have pancreatic enzymes for that) so my hope is that in combination with enzymes it would make a difference in my tolerance, but I now have had two doctors say go the surgical J tube route because it has way less complications. But I still really would like a G tube portion because of the drainage, medication, and venting properties for it, so I am seeing the center who does feeding tube and central line placements next week and I am going to see what they think about a separate G and J tube and switching my PICC line to either a port of Hickman line(less infection risk then PICC lines). At this point I am almost 100% sure I am getting a more permanent feeding tube it is the matter of what tube and when (how fast it can be done; the sooner the better I have been told). At this point I am willing to do anything to get off TPN.
Alexandra : they are silver splints, she has another video about her braces and about 8mins in she explains them, I saw your comment and thought "they must just be rings for fashion" and looked into it further, it's pretty amazing they look so nice while being functional for her!
I've starting to have a lot of food sensitivities all at once, and I'm scared and only eating bananas and chicken. This was really informative and helpful, thank you.
I think you are a real star, I am allergic to lots of foods, and I choke easily, but you are so very sweet, and you manage your health issues beautifully, I wish you the absolute best, Katherine who understands your issues and wishes perfect health for you.
I have gastroparesis and like you, much of the time, things don't go down my esophagus. I struggle more with liquids because of severe reflux than food. I had an NJ tube which I had major issues with, then got an awful PEGJ, then a Mic-Key button. My tube is right under my bra line and I'm limited with my bra choices. Thanks to my short torso lol. I'm on Vivonex TEN after failing three, then four other formulas. Vivonex TEN is the most broken down you can get...after that it goes to TPN. Unfortunately, I have to mix it myself which I HATE. I failed Osmolite 1.5, Elecare, did Peptamen AF for ten months then got malabsorption due to inflammation. I used to drink the supplements which was awful. I also do Pedialyte in my tube but have been drinking Gatorade which is surreal...the nostalgia! My placement was...weird. My stoma ripped open three times, so when the long tube was removed, they put me to sleep and pulled it out via my mouth instead of the yanking. Good thing they did the scope...that's when they found the inflammation. I have the same pump as you which I use at night, then use the Enteralite Infinity during the day in cute backpacks :) BTW: it's a gastrostomy...gastronomy is the study of culinary arts and food.
+ReineDeLaSeine14 Thats where mine is placed as well. I did have to completely buy nee undergarments and be careful that they don't move to much and irritate the tube. Im glad to hear that the vivonex is working for you. I have had a lot of pain and bloating lately and am wondering if I may need to try something like that. I can't do pedialyte or gatorade. And thanks! Lol I always seem to gastronomy instead of Gastrostomy XD My tongue doesn't like to cooperate.
This is so interesting. I have EDS, POTS, and MCAS. My GI issues are nearly the same as yours were in the start. Currently I’ve had no or little response to medication as well. I was suspecting gastroparesis until I saw this video... does anyone know if this issue would show in a gastric emptying scan? (instead of just a swallow test) So I wouldn’t have to have both.
Lol yes. Because of my EDS I have very loose ligaments and all of my joints very easily dislocate. This includes my ribs. So if I cough or move weird etc. sometimes I pop a rib out of place. So when they pulled on the tube the bumper caught the back of my rib and pulled it out of place XD
I didn't even know that was possible, that is some freaky freaky stuff you deal with man its honestly absolutely amazing. Lots of love from New Zealand
+sydney wanseri Interesting! I haven't tried that. Im a bit afraid to try anything else now that we found something I don't react to, but I will keep it in mind for sure. ❤
Christina Doherty it's super hypoallergenic and amino acid based. It's completely broken down and easy to digest. He has a g-tube and has lots of stomach issues. I know how scary it is to try new stuff when you are allergic to so many things.
Have you been tested for Eosinophilic Esophagitis? EoE. I had an endoscopy and they biopsied samples from my throat and that is how I was diagnosed. I also have EDS, Mast Cell, and Dysautonomia. What treatment are you receiving for your Mast Cell Activation disease? I've been on Chromolyn Sodium Oral.
I don't think I was biopsied for that. We always just assumed my symptoms were all related to the mast cell, but its interesting that you have both. I will bring that up to my team. I am on zyrtec, pepcid, Cromlyn oral/ nebulized/ nasal, xoponex, and xolair for the mast cell and am on asprin and cortef for other things but they kinda do double duty.
You can get EoE in your esophagus, stomach, and intestines; so 3 possible locations. I'm on Rabeprazole, and Pantoprazole daily...the Pepcid didn't work for me. For Hives, Claritin & 300 mg Zantac as opposed to Benadryl which doesn't work for me. I have Flonase & Azelastine Nasal sprays to help when seasonal allergies are high. I'm on 200mg Chromolyn Sodium Oral-so 1 foil packet a day (8 oral vials) and Flovent HFA swallow which is an inhaler of Fluticasone 220mcg you swallow. I've always had trouble swallowing--turns out the muscles in my esophagus don't properly propel food down, but trouble swallowing is typically a symptom of EoE. Mine just happened to coexist in an un-related way. Daily nausea was my 1st symptom, which led to an allergy skin test and a referral to my G.I. doctor who specializes in EoE. Food reacts differently on your skin vs. swallowing it; so it's difficult to figure out which foods one is really allergic to. That's pretty much where I'm at. I've done the gluten free and dairy free diet, and was re-scoped to check EoE eosinophils in my throat. The diet cleared my cells, but because of other problems I can’t tolerate the diet permanently. My nausea however, has never gone away. Chimes brand Ginger Chews and dissolvable Zofran sometimes help, but not enough to maintain proper weight. We are battling insurance right now to approve a feeding tube, so time will tell. :)
Wow very interesting! Thanks for the info. I can really relate to a lot of the things you said. Im really sorry you are going through it though. I always find it interesting how we all tolerate different meds. I can't tolerate flonase/fluticasone, zantac or claritin.
I have had a feeding tube for two months already. Most I could not eat for 14 days. I have Hereditary Alpha Tryptasemia Syndrome I had two formulas - one became impossible .. I have only one option in Israel, neocate advance, and here it has not been improved in the last few months. It's just a formula that is not enough for vitamins and minerals. 40 grams of protein is not enough for me. In recent months, I have been moving from one anaphylaxis to another. Must completely stop eating and not succeed ..You're the first one I find who has completely stopped eating
I recently was diagnosed with hypermobility syndrome. And am new to learning about it. I suspect eds and am going to see a doctor. Lately I have struggled with choking when I eat. This was not always an issue. My question is.... does eds or hypermobility syndrome get worse?
+Tigress_Free2BeMe Hello! Im glad my videos are helping you! As far as I have been told EDS/ hyper mobility itself is not a progressive disease. Meaning that you are born with the faulty collagen and thats just something that you have for life. But to a point you can damage and stretch out ligaments over time. So its kinda a yes and no thing. That being said, it also often causes a lot of coexisting issues and injuries. Meaning that maybe you injure your knee in high school and then that never fully heals or you develop a secondary condition. I have heard from some people that they actually felt better though later in life once their hormones had balanced out. Its really not a straightforward answer. My best advice is to be proactive about staying fit (strengthening your muscles to avoid injury) and careful to avoid anything risky. We just don't tend to heal very well and that is what makes our condition seem/feel progressive.
+Tigress_Free2BeMe Sure do! My medical updates page is "Prayers for Christina" and my personal is just my name "Christina Doherty." I wouldn't say im super active there, im more on instagram, but if you facebook message my personal I will see it pretty fast
A friend mentioned that to me recently actually! Im glad to hear it is helpful. I can't drink anything right now unfortunately due to swallowing issues, but I will certainly pass it on to other potsie friends. Thank you very much!
I understand there being the restrictions with the feeding tube. :( You are welcome. You may also want to look into Candida diet to fight Candida in the future. It helped me before. I pray for your healing. Take care and God bless.
It was way less horrible than I expected. Turns out it doesn't taste all that bad (which is good because I was tasting it for hours after hahaha) I did have an allergic reaction afterwards to the barium though. Its kinda cool to look at the screen and see yourself swallowing
I have EDS too and on really bad days I tell myself be grateful some people have it a lot worse...as you do x x though my back, hips and pelvis are terrible,I'm looking at your back brace longingly lol. Have you always suffered allergies and intolerances? I have intolerances and now the rheumatologist thinks I could be celiac because I'm reacting to wheat. My hairdresser said 'what will you eat?' I'll be grateful for what I can because like you can't tolerate anything and starving lids all over the world would love my bowl of rice x x
+Wendy Woo Lol I definitely have a love hate relationship with that back brace. It helps so much when I need it, but its also extremely painful. I have had some weird food issues since about age 8 but it started off as just a couple minor intolerances and built up to where it is now
Hey Christina, I've finally been diagnosed with ehlers-danlos syndrome after years of mis-diagnose or just ignoring my symptoms. But for about 4 years now off and on I have just random bouts of throwing up all my food. This would go on for a month to three months at a time with a few months in between where I could keep most of it down. I went vegetarian for a few months and felt great and no throwing up, but haven't had the money to afford eating that way lately and eating enough calories. Do you think the neosplash you were drinking might help me? If it could be paid for by insurance that would amazing as well. I love your videos as I'm trying to learn about all of this stuff so I can explain to people why my body does what it does. It upset me that people come up to me when my body is having a bad day and tell me 'oh you're fine, work through it, stop being such a baby, you don't look sick, or my favorite ' you're to young to have joint problems.
Hey, Im so sorry to hear about your vomiting issues. That sounds just like me a few years ago. I would be good for a few weeks and then kinda get run down and my motility would shut down and I would vomit everything. I supplemental formula may help you quite a bit. Im not really sure how insurance handles it if you aren't dependent on it, but I imagine there would be some way to et it covered. Do you have a feeding tube? the great thing about the splash is that its already broken down so your body doesn't have to use energy to do that, but it tastes kinda terrible. There is a flavored version that I drank for a while, but again, tastes horrible. There could be better options for you out there taste wise. Do you see a nutritionist? They would be the one to ask about this stuff and they usually can give you various samples to find what works
Christina Doherty I do not have a feeding tube right now. I'm in the middle of trying to get disability insurance because my regular insurance don't cover enough for me. and no I don't see a nutritionist at the moment but if I get approved for the insurance I will definitely look into it. right now I go to PT twice a week and love it because my therapist understands my situation and modifies workouts for me, while still trying to gain stability. I added you on your personal facebook. my name is Paige Steffen. if you would like to talk more.
OMG girl the barium swallow test was sooo nasty! I think you are the only other person I know that has done it! I used to have a lot of stomach issues and drinking all of that nasty barium drink was one of the hardest things ever at the time
From your description of your motility problems and swallow test, it sounds like your esophageal and gastric vagus nerve is dysfunctional. I wonder if vagal stimulation would increase your digestive function. Thanks for sharing!
+Laura Farr Very interesting! I had a lot of issues with the vagus nerve before a couple of my surgeries and stimulation did help. Great tip! I will talk to my team about that one for sure
May I please know what your biggest trigger foods are? I also have that wonderful umbrella of disorders and I am really starting to decline. My 2-3x a month issues I have now had for a while as my "regular" issues have now upped to 2-3x in a week and I am drained and so sick and so dehydrated.
If you could please answer this question. Did you also find it sometimes hard to swallow your own saliva as well? And sometimes think you couldn't breathe? I also get alot of the symptoms you've had, 'm basically on a liquid diet as im still not diagnosed, doctors haven't really listened and want to do every other type of tests when i know i should be looked at for eds.
I have all the symptoms that you described in the beginning and ive done 2 capsule endoscopies and they both ran out of their 8 hour battery life in the same spot on my chest as you pointed to. My digestion is so slow I have a bm like 1-2 times a month and all my pills come out fully intact. I also have mast cell and my gi doctor is useless so I'm at a loss what to do.
+Ery kuh Yikes, it sounds like you need a second opinion from a GI. Have you ever had a barium swallow study? That would probably be best to see what is going on with your swallowing. They will give you a lot of different thicknesses and a pill to get a better idea of what is happening when you swallow
I've been scoped sooo many times probably 11 endoscopies since 2015, and 13 colonoscopies in 2016 alone. Also did 2 of the capsule endoscopies(camera pill) and they both stopped at the same place in the chest you pointed to, literally 8 hours of battery life each time and a full week of liquid diet only as well as a bowel prep the night beforehand, and the batteries died in that spot, after that my gi doctor did another regular endoscopy and used it to place one of the capsule cames (my 3rd one) into the beginning of the small intestines they also placed some surgical clips but never explained why. That 3rd camera pill didn't manage to get more than 1/3 of the way through the small intestine before the battery died. It's extremely frustrating as food sits in my chest and I can feel it there, I can throw it up undigested even if I ate it 3 days prior. My gi doctor said that I have gastroparesis and gastritis and put me on Reglan and I ended up with super engorged breast milk pouring out soaking my bras and clothes, vision issues and non stop migraines, my primary doctor did blood work and my prolactin levels were 200 higher than a breastfeeding mother. I spent all of December in the hospital because they were convinced by all my symptoms and bloodwork that taking the Reglan had caused me to develop a prolactinoma on my pituitary gland but they couldn't find it and sent me home saying that I may have micronomas but those are too small to see on mri or ct scans. My gi doctor said that maybe I need a stomach pacemaker but I feel like there's a reason why everything is just stuck in my.esophagus
Hi, Can you please help me? I have been having SEVERE trouble swallowing over the years and I think the nerves that control the muscles wont work anymore. I have trouble swallowing even a small sip of water. If I go to the ER do you think they will go emergency surgery on me? I had another question....Do people that use the pump feeding with a backpack work normal jobs and wear the backpack all day? Thank you much appreciate
I just got my gtube a few days ago trying to get feed that won't trigger my mcas has been crazy hard so I finally get to eat tomorrow!!, i too have eds, Pots, small & large fiber neuropathy, on and on ect(you know how it is)... but I need major spinal reconstructive surgeries and finding a surgeon to do them has been insanely difficult. would you mind sharing your spinal surgeon or surgeons?? the hospital here I am basically teaching and I've caught so many of their mistakes its scary.
+skaty825 Hey there! I hope everything goes well with tour feeds! I feel like a new person since getting my tube. Neocate has ben pretty good to me (I still react a bit but its so so much better than everything else). If you want information on specific doctors and stuff like that I would love to chat in a more private place :). You can message me here on TH-cam but facebook or instagram are best. The links are on my profile and in my video descriptions. Im @watercolor_me_impressed on Instagram ❤
I have EDS too. But the form I have is much more mild than yours. I'm lucky. But I have 2 other conditions that make me really miserable :( I have POTS and PANDAS. It's really hard but we all have our struggles
1 question I have for you may be an odd one. Do you have issues with the tape the use to hold things down? I'm "allergic" to normal tapes and they rip my skin or causes a horrible rash under the tape and have to use paper tape.
Christina Doherty I can do reg tape for a few hours but if it is more then a outpatient procedure I have to have them change it all. 45 ortho surgeries later and I'm a pro at the hospital.
I had a ng tube and we would grind my meds and put them in which helped a bit. Because for a while I was vomiting whole pills as well but now I'm fine and don't really get vomiting any more I stil have a lot of nausea but I can keep food and meds down
Good question! Thats quite a feat lol. At first when I had the tube place I could not wear the brace since the tube stuck straight out. But now I have a Mic-Key button which has an extension tubing that sits more flush and exits at an angle. So what I do is I cut the toe off of a bulky sock and kinda roll it into a donut shape and sit that around the tube site ( just so I don't put any pressure on it). Then I run the extension tubing right under my bust so the brace also isn't putting pressure there and I clip the very top (port clamp area) to my bra strap or shirt with a little tube clip. If Im lucky with a little fiddling it works perfectly fine and my pump wont alarm lol. Although when it comes to pouring meds Its a bit harder for me to access alone and sometimes need to ask for help with the pouring.
When I first had the tube placed we had to use a soft brace/support that we had to alter a bit to work. You can see that in my "Braces and Splints video." th-cam.com/video/NevbHBhd0CM/w-d-xo.html Its the tan one at 3:30
Acadia, I found this on google. "Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks-also called episodes-of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days."
Acadia Mercer Yeah it does... mad respect for all the people who deal with it! It would be literally unbearable for me as I struggle with serious emetophobia (fear of nausea, vomitting etc) 😣
I have EDS, Mast Cell Activation syndrome, Gastroparesis, Disphagia, POTS, to name a few. I was dying in 2014 and unable to eat ANY solids, and reacting to everything. I found the Cusack Protocol on FB, and it was a rocky road getting started, but my last resort. After a year on the protocol, I started getting better. It's not a cure, but something to put symptoms into remission until a cure is found. I have gotten SO much of my life back! I eat again, though sometimes I still have some minor troubles, my Mast Cell syndrome is in check, and my pain is minimal. My Chiari symptoms have improved too. I am telling you b/c thousands have found reversal of symptoms and HOPE through this protocol. I hope this info helps you too!
+Michelle Wickline Thank you so much for the info, I will look more into it. I have been hearing a lot about the cusack protocol lately. Im so glad it has helped you so much and helped you to stabilize! ❤️
Its funny this pops up on my feed now, Its been exactly one year ago that I nearly had to get a feeding tube I have Eosinophilic esophagitis I have SO MANY allergies, I choke on food all the time like you did , the exactly same way, and it got to the point where my oesophagus Has shrunk from my disease it was as tiny as my pinkie finger, I'm a lot better now but it is still a risk in the future
I m a rheumatologist from pakistan. I daily see patients in pain.but I have seen none like u. U r a very brave and charming lady.I like ur style as well. may u live long.
Thank you so very much! That means a lot!
Think about whether or not you were able to treat your patients for the pain. This girl is probably getting the meds that she needs to live her life
Hey, im also from pakistan and suffer from chronic pain as a teenager. Its extremely difficult to find a rheumatologist who knows about eds or is even willing ro acknowledge my pain. Where are you located?
Not sure why this vid popped up on my recommendations, but glad I watched! You have this calming energy but also such strength, w/the perfect mix of wisdom, positivity, and sense of humor. And what a beauty! Thanks for teaching me something new w/this vid; I'm off to check out your channel now. Sending so much love to you, and wishes for a fabulous day. :)
+LunahSea Why thank you! Im glad I could teach you something :)
LunahSea Same thing here! For some reason it was in my recommendations, so I watched. Glad I did too.
+Christina I have severe back problems too. I have had ten surgeries so far. I don't know how you remain so positive!? I don't even have as many issues to deal with and I get so down sometimes because of the chronic pain, knowing I'll spend the rest of my life like this, and I miss my life before the neurosurgeon cut the nerve to my left leg during back surgery. I will tell you that you should hold out hope that you will regain some nerve function. I did regain some feeling after my nerve was cut, which has been a blessing and a curse. Some of the areas I've regained feeling have become hypersensitive. Any touch, even a slight breeze, is extremely painful. Since your nerve issues are a bit different, I don't think this kind of thing will happen with your nerves though.
Anyway, I have subscribed. Maybe I can learn a thing or two from you about having a positive attitude. Take care!
I unfortunately can relate all too well to the trials of numbness, nerve pain and hypersensitivity. I have had 10 (or 11 I can't even remember) neurosurgeries as well and have a similar problem. Some areas are completely numb, other hypersensitive, and so somehow both lol. I am so sorry. I hate knowing that someone else understands. Im honestly so so sorry that you feel this too. Some days I want to scream just having my clothes brush me skin. Just know that you are not alone in living with this, I am not always so positive, I have days where I am just frustrated to no end. And I think thats totally okay
Christina Doherty I'm not sure how I ended up on this video but I'm glad I did. I'm also very sorry to hear you live with pain too. I've had complex regional pain syndrome since 2005 so understand the realities of living with nerve pain.
Sending positive wishes your way.
TheNimmish i have ms so i def know what nerve pain is and some days it really stinks,i so dislike nerve pain
I have EDS and had Kyphosis-Scoliosis and had to wear a brace like yours for a long time. I had most of my disks fused and Harrington rods. I feel your pain and hope you feel better.
I haven't had any discs fused, but I've got Harrington rods that were placed in 1997 for a backwards "S" curvature of Scoliosis. I wore body braces for 3.5 years, 23 hours a day. I've since been diagnosed with EDS type 3 and EDS Kyphoscoliotic type. How long have you had your Harrington rods for? I certainly don't meet too many people with them. :)
dolphinsplash mine was 1987 and I was 2 inches taller after the surgery but now those lower 4 disks not covered by the Harrington rods are crushed or starting to be. Right now my L5 is bone on bone and they can't do anything about it. they tried burning the nerves and a lot of cortisone injections. I have EDS type classic which I heard is really bad. I think it's a mixture of the 1st 3 types. My daughter looked it up and EDS plus Kyphosis-scoliosis is at 65 reported cases on the planet. I didn't see it but she did and I trust her, she's going to college to be a doctor. She has type 3 but not to bad.
dolphinsplash the docs have called the work on my back archaic which kinda scares me.
My surgeon was Dr. Davis W. Polly Jr.. He was in his residency when he did my surgery which was 11.5 hours long at Walter Reed AMC. He is working currently at The University of Minnesota, and the cool part is that many of my doctors since have met or know Dr. Polly from conferences and he is a top notch doctor. This is his page... www.ortho.umn.edu/bio/orthopaedic-surgery/david-polly
Are there any other options for fixing your back other then more fusion? I've wondered about this since eventually the bones deteriorate that are above and below the fusion. Best wishes that they can figure out another option for you!
I really appreciated watching this. I have EDS with pretty significant dysphagia and I'm waiting for a barium swallow that is scheduled WAYYY too far out. My diet has become really limited in the last few weeks since the swallowing issue became pronounced (never mind months/years of GI issues) and I feel awful. I'm really hoping that even a short term feeding tube situation will help get me back on my feet and hearing your story really helped me understand where I'm at in this journey. Best to you!
You are so amazing! I'm a nurse who works with feeding tubes in children so its very neat to me to be able to hear your reaction and feelings about your g-tube! My kids are mostly non-verbal so I don't have this kind of insight! I always try to teach my nurse friends about feeding tubes because unless you work with one consistently, they're kind of foreign! I've also worked with some children with mast cell activation syndrome. I can only imagine how difficult it must have been to go through the diagnosis. Hope you're doing well!!
Aww im glad I could kind of speak for them a little bit. When you are doing a bolus feed it feels a little bit like its running down your throat. Especially it its cold. If its cold you can really feel it and it feels strange lol. I always think of that scene form Willy Wonka when Violet is chewing the gum and says "I can feel it running down my throat." Otherwise when I am running the pump I cant feel it and it doesn't hurt at all. Hope that can shed a bit more light on it all. :)
Hi , I just want to say how proud I am of you and your openness. I myself have an o stony from severe crowns and my son has a permanent GJ tube so I can somewhat relate. I know that this vid is old but just an FYI.. my son is in danger if he has sedation so he had his Gtube switched to a GJ w no sedation or anything... and he has it replaced every 6 months w nothing.... he has never had pain or anything close to pain w this procedure just an FYI for future reference..., in case that is something you think you might need in the future... All the best.
+MissNeko76 Thank you! Thats great to know that that is always an option available to be if we decide to advance it 💜
It my first time watching your videos and I couldn't stop smiling from how much positivity you have.
Also....thank you for sharing your story. It is helping me finally understand my own issues. It helps me feel validated and understand whats going on with me. I don't feel so alone
I have a ton of food intolerances and at first I cried after watching and smelling people eat food I couldn't have but over the years I've slowly learned to enjoy the smells of foods without wishing I could eat them. It's been a slow process and I still get twinges of jealousy when people eat pizza or doughnuts. Hopefully, with time, the pangs and feeling like you are "missing out" will subside. I'm glad you've found a way to get nourishment that works best for your body.
I can relate, it is so hard, especially at first! But you learn that its just not worth it. Im glad you can enjoy the smells and overall experience, I am just finally getting stable enough that I can be around food smells without reacting and it is so so pleasing just to smell it. :)
You're an absolute inspiration. You've gone through so much in your life and you're still smiling and educating us all on these conditions.
You're a breathe of fresh air and a strong young lady. Absolutely subscribing to your channel. I hope more people find you so that they can be absorbed by your charm and happiness. Sending all the positive, healthy and happy vibes your way beautiful!
+yuffie0404 Thank you so very much! Happy vibes right back at ya! :)
I really appreciate seeing this video -- my motility issues aren't so bad that I need a feeding tube & I do hope that doesn't happen, but hearing about others' experiences is invaluable & I gain a lot from it. And, if I ever do need this information, it's wonderful to have it so well-put. :)
I know you get overloaded with requests but maybe you could do a collaborative video with one of your friends who you hang out with at the EDNF conferences? One thing that I don't hear enough about is Vascular EDS; especially the non-vascular component... I recently found out that I have Vascular EDS meanwhile I have almost all of the criteria for Hypermobility type. It's all been very confusing & while I can read clinical papers about what "commonly" happens, it's always helpful to hear about experience & what people do to better their lives.
Thank you for all of your videos -- they're so useful, but on top of that? Your voice is very soothing & your personality is very warm. Stay healthy xx
Thank you for the sweet comment. Im glad your motility isn't too bad, I hope it never reaches that point. I would absolutely love to be more collaborative, I wish that I wasn't so far away from so many of my friends. Someday for sure!
I don'y know many people with VEDS, but have you ever discovered Cheyenne Love here on TH-cam? th-cam.com/users/flygirl2032 She has VEDS and is absolutely one of the sweetest people in the world.
You're welcome -- your channel has been so helpful to my mindset & staying positive [as much as one reasonably can when "good days" are increasingly scarce]. So you deserve credit for the information & help you provide to your subscribers. :)
And thank you for the suggestion! She really does seem really sweet & genuine -- her videos are lovely & informative as well.
I thoroughly enjoyed the video :) You explain everything quite well and you have a lovely pace in your speech. I'm glad you could find something to help you with the ordeal you went through. Hopefully it gets easier from now on
Thank you so very much!
You remind me a lot of Anne Hathaway. You seem so kind and caring
+Jess n Kaley Wow thank you, I really love her :)
That's it!!! I've been wondering for ages who she reminds me of! Thanks!!!
this was in my suggested and its so weird because i have an exam on enteral nutrition (feeding tubes) literally tomorrow morning. thanks for being inspiring and helping me to understand more what im learning about. it makes it more real when you hear this from a person's experience rather than ready about case studies in a textbook.
+george pieloe So glad to be an example lol. So many doctors I have seen and doctors that are family friends have said that they basically had a single paragraph on EDS in med school and every time I have ended up in the hospital I have had to train the nurses on how to use the feeding tube. Its apparently just not common to see the tubes outside of pediatrics and geriatrics :)
+george pieloe best of luck on your exam! :)
You are the most amazing person... Makes me feel utterly pathetic for letting my minor issues get me down.
I wish you all the best, keep smiling.
+flyingbrick88 We all have our struggles and our burdens. I wish you the best as well! ❤️
my fiance speaks with you on a Instagram (grace) and i want to thank you for doing so.... i recently was diagnosed with eds after many many years of struggle and failed surgeries and you have helped her understand what we deal with and what to possibly expect...this has been extremely difficult for her and having someone that she can speak with that understands is irreplaceable ...so i truly thank you
Im so very glad that I could help you two in some way. I think you guys are great and I love that she is so willing to learn about your condition. Keep being awesome! :)
Thanks so much for sharing and being so open. You have been a great blessing to our family!!
You are great at sharing and being a positive role model and support for all of us! Thank you so much Christina! Gentle hugs!
+Lee Skingley 😘❤️❤️❤️
this just showed up in my recommended and its 1am here in Australia so i thought "why not" and you are truly AMAZING
im so greatful i don't have any food allergies or health problems (besides infertility issues and random times i throw up for no reason). your video woke me up again, realizing what i take for granted every day 😊
+Crystal xoxox Love from across the world! Glad to be a part of your late night TH-cam binge. Goodness knows I understand that! 😂
This was so needed. Im also a EDS patient with Gastroparesis, mastcell and Pots. Im getting a picc line next week to start IVIG and daily fluids. Everything you said was as if it was coming from me personally. Sending you lots of love 🦓
great job again Christina! Your message will and is helping to educate more people how important it is to learn about this rare and complicated illness. My best wishes to you. Stay strong and well. GOD BLESS YOU for all you do. Love, Carmelle
Thank you sweet Carmelle! We are always thinking of you! We miss you like a member of the family! Sammie really misses you too.
Hi, I randomly stumbled upon your channel. I think you are such an inspiring, brave and positive girl. I think its important that more people are informed about things like feeding tubes so that people understand what its like and why you might have to use one. My Dad recently had to get a stoma (basically a bowel outside of the body) and it was so hard on him. I know people might look at things like a stoma or a feeding tube as weird, but we should be thankful that these things exist to keep the people we love alive and healthy. :)
+Kate Murray I totally agree. I hope your Dad is doing well with his stoma. I know that is something that can very hard to come to terms with and can be very embarrassing (which is such a total shame). I admit that I knew very little about feeding tubes before starting this process. Its just not something that a lot of people have, and it's certainly not something that people talk about
You are so inspiring. Like actually wow. Listening to your story, what you've been through and how positive you're able to be, makes me feel like I can get through anything. You are so strong and thank you so much for sharing your story and experiences with the world, you really are changing lives and educating people. I'll be keeping you in my thoughts and prayers! xx
+Christine K. Thank you so much for watching and for your prayers. That really means a lot to me.
You're amazing. Honestly. You have such a positive attitude. God bless you.
+Jania Green Thank you ❤
This was my first video of yours I watched... althought I’ve watched every one since finding your channel last year
I've broken my spine and developed a tumor and after getting that removed and getting my first surgery, my spine began to short and it started moving my lungs and heart so I can't really breathe well I was choking and developed a heart condition and ultimately had to have another surgery. But I still can't even imagine what you've gone/still going through. I hope you begin to feel better and stop needing to have surgeries
Wow what a crazy situation! Hopefully you are doing a bit better these days. That sounds like a total nightmare
This was very informational, I'm very glad I watched. I just wish it was captioned because I'm HoH :( But nonetheless I learned a lot! I can never get enough disabled TH-camrs on my feed, so I'm definitely subscribing.
+Little M I have every intention of captioning these very soon
This video was extremely helpful! Thank you for talking about what it's like for you having a feeding tube and for including time stamps/questions in the description box. I am currently having a really hard time eating or drinking anything and I've been dealing with that for years. I end up having a lot of pain after eating/drinking that can last 30minutes up to a couple of days. I also experience nausea, indigestion, and burning when I eat/drink. I suffer from a lot of GI disorders and nothing that I have tried so far (with my doctors' guidance) has helped. I am looking into getting a J feeding tube. Although I wish I could eat/drink all of those amazing foods/drinks, like you said, it's just not worth it. I feel like a J feeding tube would be a blessing. It's hard to "live" when you are so sick all of the time. Thanks again for this video! ☺️💗
Thank you dear so much for these videos. Currently on the long road trying to get diagnosed. Watching you talk about your experiences is so calming and educational. I especially like watching your videos when I'm getting worked up from different flares, like diet changes because I have such severe nausea (yay nutrition drinks!) and the like or right now how a rib dislocated and is killing me (2x today, can't get it back now ugh).
So yeah. Your videos are amazing. Thank you so, so much. It's really helpful.
Great video. I'm an emergency RN and I just thought I'd share this idea from some patients I see that have feeding tube, regarding the food cravings. You've probably already thought of this but in the event that you haven't...if you are craving something, some patients just chew food and spit it out. Obviously the ones that don't have difficulty swallowing. But it's something many of them enjoy because they get the taste satisfaction without the consequences. 😊
+Jenna Hopkins I admit, I have thought about it hahahah but my allergy issues cause food to burn my mouth and throat so it wouldn't really be worth it. Plus I don't think it would make me a very popular dinner guest 😂😂😂😂
Christina Doherty lol true. I've always assumed that they do the chew and spit routine in private and not around others eating. I would hope anyways haha.
I have both of these diseases! I have been having a hard time swallowing for a year now and I have never had a swallow study. I didn't even know it was a thing. these videos are very helpful, thank you for sharing your story. +Christina Doherty
+Molly Vallee (learning2loveU) Thats definitely something to look into! I didn't really know it was a thing either, I wish I had done it much sooner
Do you have any tips or tricks to help with temperature control? I've been having the hardest time with it lately?? +Christina Doherty
My biggest tip is just to dress in lots of layers. I often wear a sleeveless top/dress with a sweater, jacket, scarf, tights, and socks. That way I can take off and put on layers as I please. Obviously thats a more winter/fall thing. Summer? Well, Summer I stay in the AC lol. I wish I had better tips for summer.
Yes! I do all of that! It gets really cold here in the winter but i spike random fevers so sometimes it gets steamy!! The summer is always very tricky, I usually feel very faint. Thank you for your tips!! If you have any questions feel free to ask, i havent had my diagnosis for long but i've learnt some pretty cool tricks!
You are so sweet! I love the way you talk. You go girl! Stay positive :)
+Charlotte Veilleux Thanks! I plan on it! 💕
you are absolutely amazing and inspiring. I ran into this video even tho I do not relate to you at all or was in no way planning to learn what you shared. I am more then glad I clicked play though. you are incredible, beautiful, and simply inspiring! I'm sure your videos help many people including me. we all take life for granted, I am always reminding myself not to and always thankful for life. sometimes not as much as one should be but today I definitely am, and glad that you feel liberated and have found a way to live better. I hope you get to enjoy food again soon and until then stay amazing!!
+steven litton Thank you for your sweet words. Im always glad to hear when someone just kind of stumbles onto my videos. Feeding tubes are definitely not something that a lot of people talk about so its kinda cool to educate people a little bit.
Great video. Thank you for being so honest.
You are so pretty!! Both inside and out!☺️
Thank you :)
Can I just say that I think you're like the cutest lil person? I wish you well!
Why thank you, I wish you well as well
Kudos for reframing your story from a tragedy to a comedic docu-drama LOL. You educate & reassure others dealing with similar issues.
Stay the way ur: Positive. Matter of fact. Honest. Humble. And grateful. You are going to have an amazing life!
Came across this video. My daughter had a G tube [A Peg for 2 months than switched to a button] for a little over three years and has now has had a GJ tube for eight months. Only her meds go by G everything else goes by J. She's only has eaten Dum Dum Lollipops since we had to switch to J feeds because food just stays in her stomach for so long and makes her uncomfortable or she throws up etc. The G tube worked really well it wasn't until her motility completely tanked that we needed the J.
That hospital sounds so clueless. We were kicked out of the hospital a couple hours after tube placement. I had no idea how to feed my kid. I learned from TH-cam videos. So I love when I see videos like this sharing information with other people.
+Trekkifulshay I had to do my fair share of googling and video watching myself. Its crazy that they can let people go home without knowing how to take care of themselves or their loved ones. Hope your little one is doing well!
Seems like it would make sense to have someone come in and train people on how to use feeding tubes before discharge. She is doing much better J feeds seems to be the answer. :)
Love to see you being so strong! Love you girlie. Hopefully we can see each other again at COTW
Yes! I would love that! Are you going this year? We need to catch up!
maybe. Not sure. I'll bring it up to my dad next time i call him. haha
I have a G-tube and use Kate Farms which is hypoallergenic and high calorie. Its been a godsend. I am also thankful for my tube and live a full life.
I hope you’re doing well. ❤️
I love your rings & bracelets!
Megan D'Alessandro they are actually splints. Pretty neat eh
+Oopsie Daisy Yup! They sure are :) The rings are silver ring splints to help stabilize my finger joints :)
Christina Doherty I was literally just looking at pictures of all the different kinds of jewelry they make as adaptive equipment. It's really amazing how far we've come, the type of splint you wear are dynamic I believe? As in they move freely with your fingers?
I have the same silver ring splints and I love them. I was dislocating my fingers several times a day and these really help to stabilize them.
You're really strong and inspiring. Hope you know that 💕
Thank you :)
You are so pretty and have the best attitude! keep it going
I was clueless. Glad to learn more today. Thanks for doing this. ❤
+Whit U. Forever Thank YOU for watching!
Christina Doherty My pleasure!
Thank you so much for doing this video. Best wishes!
+20kst Of course! Thanks for watching! :)
I'm nine years old I have eds but I don't have a feeding tube and my is caused by hyper mobility and I get made fun of because if someone at school was trying to tickle my spin they see that I have a curve known as (scalliosis) I have pain and all that I walk with my legs straight I have hydro therapy and the people who say they want hypermobillity you don't it is painful.
Hey Clare! I am so sorry that you are having to deal with teasing at school on top of having EDS and scoliosis! Its so sad to think that people would tease someone for that. And im so sorry you are in pain. EDS and hyper mobility can be so painful and you are so young. Hang in there! We are always here for you!
Wonderful video about something that a lot of people don't really know about. One thing I was wondering is, is the tube uncomfortable with the brace or is it just something you've gotten used to?
At the beginning I couldn't even wear the brace with the tube. The original tube that they use sticks straight out from the body. But once I got the low profile mickey button I was able to wear them together. The mickey button tubing goes out at a right angle so I put a little donut of padding around the button itself and then can run the tubing up through the brace with little issue.
Awesome video :) I'm happy to hear you tolerate the neocate splash! I'll be switching to that formula as soon as it comes in since I'm having mast cell actions to mine. Excited to see if it helps my quality of life :)
+Kathleen Gagnon I really hope it works for you! I love that its a pretty thin formula so it feels really light. Not like some of those thick heavy ones that make you super bloated. Let me know how it goes!
That lip color is gorgeous on you!!! 💕 you look beautiful!
Hi, I'm going through gastric issues now I'm in Wales UK, my Dr (gp) has said no more surgery as my shoulder stabilization wasn't successful. I mostly eat ice cream and quavers so not the healthiest of diets at present. Thanks for this vlog
great video. is that your bedroom? everything is so cute! i love that poster in the backround and your dreamcatcher. so cute!
+Bewitched Yup! Thats my bedroom! I spend most of my time in there so I love to decorate it 💜
Upon doing research as I move into this phase of getting a more permanent feeding tube finally after 7 months of having an NJ (and enough doctors pushing me to get a more permanent tube/my need becoming more dire) and now having been TPN dependent for just under 11 weeks now, I realize how few videos on TH-cam their are on particularly GJ and J tubes and TPN, so my research has been more google and article and blog based. For the most part I have been told get a GJ tube because of the aspects of gastric venting and drainage while feeding into the intestines (we also have discovered my pancreas isn't working properly to break down things after I had my NJ tube taken out 3 weeks ago and now have pancreatic enzymes for that) so my hope is that in combination with enzymes it would make a difference in my tolerance, but I now have had two doctors say go the surgical J tube route because it has way less complications. But I still really would like a G tube portion because of the drainage, medication, and venting properties for it, so I am seeing the center who does feeding tube and central line placements next week and I am going to see what they think about a separate G and J tube and switching my PICC line to either a port of Hickman line(less infection risk then PICC lines). At this point I am almost 100% sure I am getting a more permanent feeding tube it is the matter of what tube and when (how fast it can be done; the sooner the better I have been told). At this point I am willing to do anything to get off TPN.
You r a very brave girl
This is my first video of yours that I've seen, but your rings/hand jewelry look familiar... are they braces? They're very pretty!
Alexandra : they are silver splints, she has another video about her braces and about 8mins in she explains them, I saw your comment and thought "they must just be rings for fashion" and looked into it further, it's pretty amazing they look so nice while being functional for her!
+Bobbie Mason Thanks for answering for me 😊 Yes, they are splints and they are fantastic. If only all braces could be so lovely lol
I've starting to have a lot of food sensitivities all at once, and I'm scared and only eating bananas and chicken. This was really informative and helpful, thank you.
You have eds?
There's a good reason they don't warn you before yanking- tensing up makes it worse. But still- the caring thing would be to explain why afterwards.
I think you are a real star, I am allergic to lots of foods, and I choke easily, but you are so very sweet, and you manage your health issues beautifully, I wish you the absolute best, Katherine who understands your issues and wishes perfect health for you.
+Katherine Miller Thanks girl! Im sorry that you understand
I have gastroparesis and like you, much of the time, things don't go down my esophagus. I struggle more with liquids because of severe reflux than food. I had an NJ tube which I had major issues with, then got an awful PEGJ, then a Mic-Key button. My tube is right under my bra line and I'm limited with my bra choices. Thanks to my short torso lol. I'm on Vivonex TEN after failing three, then four other formulas. Vivonex TEN is the most broken down you can get...after that it goes to TPN. Unfortunately, I have to mix it myself which I HATE. I failed Osmolite 1.5, Elecare, did Peptamen AF for ten months then got malabsorption due to inflammation. I used to drink the supplements which was awful. I also do Pedialyte in my tube but have been drinking Gatorade which is surreal...the nostalgia!
My placement was...weird. My stoma ripped open three times, so when the long tube was removed, they put me to sleep and pulled it out via my mouth instead of the yanking. Good thing they did the scope...that's when they found the inflammation.
I have the same pump as you which I use at night, then use the Enteralite Infinity during the day in cute backpacks :)
BTW: it's a gastrostomy...gastronomy is the study of culinary arts and food.
+ReineDeLaSeine14 Thats where mine is placed as well. I did have to completely buy nee undergarments and be careful that they don't move to much and irritate the tube. Im glad to hear that the vivonex is working for you. I have had a lot of pain and bloating lately and am wondering if I may need to try something like that. I can't do pedialyte or gatorade. And thanks! Lol I always seem to gastronomy instead of Gastrostomy XD My tongue doesn't like to cooperate.
This is so interesting. I have EDS, POTS, and MCAS. My GI issues are nearly the same as yours were in the start. Currently I’ve had no or little response to medication as well. I was suspecting gastroparesis until I saw this video... does anyone know if this issue would show in a gastric emptying scan? (instead of just a swallow test) So I wouldn’t have to have both.
they pulled out a rib??? I'm so very confused but it sounds painful as all hell and I'm amazed at all you go through and you are so strong ♡♡
Lol yes. Because of my EDS I have very loose ligaments and all of my joints very easily dislocate. This includes my ribs. So if I cough or move weird etc. sometimes I pop a rib out of place. So when they pulled on the tube the bumper caught the back of my rib and pulled it out of place XD
I didn't even know that was possible, that is some freaky freaky stuff you deal with man its honestly absolutely amazing.
Lots of love from New Zealand
You're voice is wonderful!! So calming :) you should make an ASMR video! Thanks for a great video
+Isabella C Thanks! Hahaha thats not something I have thought about before lol
Have you tried elecare? That's what my son uses, but it's a powder so you can up the calories by adjusting the powder to water ratio.
+sydney wanseri Interesting! I haven't tried that. Im a bit afraid to try anything else now that we found something I don't react to, but I will keep it in mind for sure. ❤
Christina Doherty it's super hypoallergenic and amino acid based. It's completely broken down and easy to digest. He has a g-tube and has lots of stomach issues. I know how scary it is to try new stuff when you are allergic to so many things.
Have you been tested for Eosinophilic Esophagitis? EoE. I had an endoscopy and they biopsied samples from my throat and that is how I was diagnosed. I also have EDS, Mast Cell, and Dysautonomia. What treatment are you receiving for your Mast Cell Activation disease? I've been on Chromolyn Sodium Oral.
I don't think I was biopsied for that. We always just assumed my symptoms were all related to the mast cell, but its interesting that you have both. I will bring that up to my team. I am on zyrtec, pepcid, Cromlyn oral/ nebulized/ nasal, xoponex, and xolair for the mast cell and am on asprin and cortef for other things but they kinda do double duty.
You can get EoE in your esophagus, stomach, and intestines; so 3 possible locations. I'm on Rabeprazole, and Pantoprazole daily...the Pepcid didn't work for me. For Hives, Claritin & 300 mg Zantac as opposed to Benadryl which doesn't work for me. I have Flonase & Azelastine Nasal sprays to help when seasonal allergies are high. I'm on 200mg Chromolyn Sodium Oral-so 1 foil packet a day (8 oral vials) and Flovent HFA swallow which is an inhaler of Fluticasone 220mcg you swallow. I've always had trouble swallowing--turns out the muscles in my esophagus don't properly propel food down, but trouble swallowing is typically a symptom of EoE. Mine just happened to coexist in an un-related way. Daily nausea was my 1st symptom, which led to an allergy skin test and a referral to my G.I. doctor who specializes in EoE. Food reacts differently on your skin vs. swallowing it; so it's difficult to figure out which foods one is really allergic to. That's pretty much where I'm at. I've done the gluten free and dairy free diet, and was re-scoped to check EoE eosinophils in my throat. The diet cleared my cells, but because of other problems I can’t tolerate the diet permanently. My nausea however, has never gone away. Chimes brand Ginger Chews and dissolvable Zofran sometimes help, but not enough to maintain proper weight. We are battling insurance right now to approve a feeding tube, so time will tell. :)
Wow very interesting! Thanks for the info. I can really relate to a lot of the things you said. Im really sorry you are going through it though. I always find it interesting how we all tolerate different meds. I can't tolerate flonase/fluticasone, zantac or claritin.
thanks for sharing I'm in the hospital now not feeling well nurse said I'll need a Foley not sure what that is
I love those armor things on your thumbs, where'd you get them?
They are actually splints. I got them from "The Silver Ring Splint Company" :)
OMG they look like straight up jewelry. Congrats to that company! Thanks for the response. :)
I have had a feeding tube for two months already.
Most I could not eat for 14 days.
I have Hereditary Alpha Tryptasemia Syndrome
I had two formulas - one became impossible ..
I have only one option in Israel, neocate advance, and here it has not been improved in the last few months. It's just a formula that is not enough for vitamins and minerals. 40 grams of protein is not enough for me.
In recent months, I have been moving from one anaphylaxis to another.
Must completely stop eating and not succeed ..You're the first one I find who has completely stopped eating
I recently was diagnosed with hypermobility syndrome. And am new to learning about it. I suspect eds and am going to see a doctor. Lately I have struggled with choking when I eat. This was not always an issue. My question is.... does eds or hypermobility syndrome get worse?
+Tigress_Free2BeMe Hello! Im glad my videos are helping you! As far as I have been told EDS/ hyper mobility itself is not a progressive disease. Meaning that you are born with the faulty collagen and thats just something that you have for life. But to a point you can damage and stretch out ligaments over time. So its kinda a yes and no thing. That being said, it also often causes a lot of coexisting issues and injuries. Meaning that maybe you injure your knee in high school and then that never fully heals or you develop a secondary condition. I have heard from some people that they actually felt better though later in life once their hormones had balanced out. Its really not a straightforward answer. My best advice is to be proactive about staying fit (strengthening your muscles to avoid injury) and careful to avoid anything risky. We just don't tend to heal very well and that is what makes our condition seem/feel progressive.
Hugs :) Do you have a facebook?
+Tigress_Free2BeMe Sure do! My medical updates page is "Prayers for Christina" and my personal is just my name "Christina Doherty." I wouldn't say im super active there, im more on instagram, but if you facebook message my personal I will see it pretty fast
Have you heard about Banana Bag drinks for POTS? It may help.
A friend mentioned that to me recently actually! Im glad to hear it is helpful. I can't drink anything right now unfortunately due to swallowing issues, but I will certainly pass it on to other potsie friends. Thank you very much!
I understand there being the restrictions with the feeding tube. :( You are welcome. You may also want to look into Candida diet to fight Candida in the future. It helped me before. I pray for your healing. Take care and God bless.
Very informational. Thank you for sharing. Blessings your way. Off topic, where did you get your earrings?
+Rebecca D Earrings are from American Eagle 😊
If you can will you make a video showing all or some of your braces thanks!!!!!
what did you think of the barrium test?
It was way less horrible than I expected. Turns out it doesn't taste all that bad (which is good because I was tasting it for hours after hahaha) I did have an allergic reaction afterwards to the barium though. Its kinda cool to look at the screen and see yourself swallowing
I have EDS too and on really bad days I tell myself be grateful some people have it a lot worse...as you do x x though my back, hips and pelvis are terrible,I'm looking at your back brace longingly lol. Have you always suffered allergies and intolerances? I have intolerances and now the rheumatologist thinks I could be celiac because I'm reacting to wheat. My hairdresser said 'what will you eat?' I'll be grateful for what I can because like you can't tolerate anything and starving lids all over the world would love my bowl of rice x x
+Wendy Woo Lol I definitely have a love hate relationship with that back brace. It helps so much when I need it, but its also extremely painful. I have had some weird food issues since about age 8 but it started off as just a couple minor intolerances and built up to where it is now
Hey Christina, I've finally been diagnosed with ehlers-danlos syndrome after years of mis-diagnose or just ignoring my symptoms. But for about 4 years now off and on I have just random bouts of throwing up all my food. This would go on for a month to three months at a time with a few months in between where I could keep most of it down. I went vegetarian for a few months and felt great and no throwing up, but haven't had the money to afford eating that way lately and eating enough calories. Do you think the neosplash you were drinking might help me? If it could be paid for by insurance that would amazing as well. I love your videos as I'm trying to learn about all of this stuff so I can explain to people why my body does what it does. It upset me that people come up to me when my body is having a bad day and tell me 'oh you're fine, work through it, stop being such a baby, you don't look sick, or my favorite ' you're to young to have joint problems.
Hey, Im so sorry to hear about your vomiting issues. That sounds just like me a few years ago. I would be good for a few weeks and then kinda get run down and my motility would shut down and I would vomit everything. I supplemental formula may help you quite a bit. Im not really sure how insurance handles it if you aren't dependent on it, but I imagine there would be some way to et it covered. Do you have a feeding tube? the great thing about the splash is that its already broken down so your body doesn't have to use energy to do that, but it tastes kinda terrible. There is a flavored version that I drank for a while, but again, tastes horrible. There could be better options for you out there taste wise. Do you see a nutritionist? They would be the one to ask about this stuff and they usually can give you various samples to find what works
Christina Doherty I do not have a feeding tube right now. I'm in the middle of trying to get disability insurance because my regular insurance don't cover enough for me. and no I don't see a nutritionist at the moment but if I get approved for the insurance I will definitely look into it. right now I go to PT twice a week and love it because my therapist understands my situation and modifies workouts for me, while still trying to gain stability. I added you on your personal facebook. my name is Paige Steffen. if you would like to talk more.
Does anyone think she sounds like the babysitter from the incredibles? Anyway I'm glad i watched this because i learnt to much. You are so strong :)
+Emily 😂😂😂 This has me laughing so hard!
I think it's your accent i knew you sounded like someone but it took me ages to figure out who😂
OMG girl the barium swallow test was sooo nasty! I think you are the only other person I know that has done it! I used to have a lot of stomach issues and drinking all of that nasty barium drink was one of the hardest things ever at the time
+Rachel Gleaves Yes! So gross! 😝
oh MAN you Mickey button story!! fantastic!
XD
From your description of your motility problems and swallow test, it sounds like your esophageal and gastric vagus nerve is dysfunctional. I wonder if vagal stimulation would increase your digestive function. Thanks for sharing!
+Laura Farr Very interesting! I had a lot of issues with the vagus nerve before a couple of my surgeries and stimulation did help. Great tip! I will talk to my team about that one for sure
Awesome! Good luck! You're one strong lady. =)
Your henna is beautiful!!
Thank you! I did it myself :)
Great video!! Very informative.
+Chelsie Wise Thank you so much and thanks for watching! Im glad you got something out of it :)
this was very informative, thanks for sharing ^_^
Im so glad. Thank YOU for watching
May I please know what your biggest trigger foods are? I also have that wonderful umbrella of disorders and I am really starting to decline. My 2-3x a month issues I have now had for a while as my "regular" issues have now upped to 2-3x in a week and I am drained and so sick and so dehydrated.
If you could please answer this question. Did you also find it sometimes hard to swallow your own saliva as well? And sometimes think you couldn't breathe? I also get alot of the symptoms you've had, 'm basically on a liquid diet as im still not diagnosed, doctors haven't really listened and want to do every other type of tests when i know i should be looked at for eds.
I have all the symptoms that you described in the beginning and ive done 2 capsule endoscopies and they both ran out of their 8 hour battery life in the same spot on my chest as you pointed to. My digestion is so slow I have a bm like 1-2 times a month and all my pills come out fully intact. I also have mast cell and my gi doctor is useless so I'm at a loss what to do.
+Ery kuh Yikes, it sounds like you need a second opinion from a GI. Have you ever had a barium swallow study? That would probably be best to see what is going on with your swallowing. They will give you a lot of different thicknesses and a pill to get a better idea of what is happening when you swallow
I've been scoped sooo many times probably 11 endoscopies since 2015, and 13 colonoscopies in 2016 alone. Also did 2 of the capsule endoscopies(camera pill) and they both stopped at the same place in the chest you pointed to, literally 8 hours of battery life each time and a full week of liquid diet only as well as a bowel prep the night beforehand, and the batteries died in that spot, after that my gi doctor did another regular endoscopy and used it to place one of the capsule cames (my 3rd one) into the beginning of the small intestines they also placed some surgical clips but never explained why. That 3rd camera pill didn't manage to get more than 1/3 of the way through the small intestine before the battery died. It's extremely frustrating as food sits in my chest and I can feel it there, I can throw it up undigested even if I ate it 3 days prior. My gi doctor said that I have gastroparesis and gastritis and put me on Reglan and I ended up with super engorged breast milk pouring out soaking my bras and clothes, vision issues and non stop migraines, my primary doctor did blood work and my prolactin levels were 200 higher than a breastfeeding mother. I spent all of December in the hospital because they were convinced by all my symptoms and bloodwork that taking the Reglan had caused me to develop a prolactinoma on my pituitary gland but they couldn't find it and sent me home saying that I may have micronomas but those are too small to see on mri or ct scans. My gi doctor said that maybe I need a stomach pacemaker but I feel like there's a reason why everything is just stuck in my.esophagus
Hi, Can you please help me? I have been having SEVERE trouble swallowing over the years and I think the nerves that control the muscles wont work anymore. I have trouble swallowing even a small sip of water. If I go to the ER do you think they will go emergency surgery on me? I had another question....Do people that use the pump feeding with a backpack work normal jobs and wear the backpack all day? Thank you much appreciate
I just got my gtube a few days ago trying to get feed that won't trigger my mcas has been crazy hard so I finally get to eat tomorrow!!, i too have eds, Pots, small & large fiber neuropathy, on and on ect(you know how it is)... but I need major spinal reconstructive surgeries and finding a surgeon to do them has been insanely difficult. would you mind sharing your spinal surgeon or surgeons?? the hospital here I am basically teaching and I've caught so many of their mistakes its scary.
+skaty825 Hey there! I hope everything goes well with tour feeds! I feel like a new person since getting my tube. Neocate has ben pretty good to me (I still react a bit but its so so much better than everything else). If you want information on specific doctors and stuff like that I would love to chat in a more private place :). You can message me here on TH-cam but facebook or instagram are best. The links are on my profile and in my video descriptions. Im @watercolor_me_impressed on Instagram ❤
I have EDS too. But the form I have is much more mild than yours. I'm lucky. But I have 2 other conditions that make me really miserable :( I have POTS and PANDAS. It's really hard but we all have our struggles
It is hard, Im sorry you are dealing with that. I have POTS as well but not PANDAS.
My daughter has the mini gtube! I can relate to you sooo much
This video brought me to your channel ❤️
I have mast cell too and am having horrible allergies. I had a tube for a few weeks but got it pulled because it got cut open and I had complications
I'm afraid to get another one placed do you have any recommendations
1 question I have for you may be an odd one. Do you have issues with the tape the use to hold things down? I'm "allergic" to normal tapes and they rip my skin or causes a horrible rash under the tape and have to use paper tape.
+Scott LEGO Fowler Yes, super allergic! Even paper tape is an issue although I can tolerate it for short amounts of time
Christina Doherty I can do reg tape for a few hours but if it is more then a outpatient procedure I have to have them change it all. 45 ortho surgeries later and I'm a pro at the hospital.
AYYYYYEEE I HAVEN'T WATCHED THE VIDEO YET BUT I HAVE EDS TOO THANKS FOR THE VIDEO
I had a ng tube and we would grind my meds and put them in which helped a bit. Because for a while I was vomiting whole pills as well but now I'm fine and don't really get vomiting any more I stil have a lot of nausea but I can keep food and meds down
how do u use the tube with the brace?
Good question! Thats quite a feat lol. At first when I had the tube place I could not wear the brace since the tube stuck straight out. But now I have a Mic-Key button which has an extension tubing that sits more flush and exits at an angle. So what I do is I cut the toe off of a bulky sock and kinda roll it into a donut shape and sit that around the tube site ( just so I don't put any pressure on it). Then I run the extension tubing right under my bust so the brace also isn't putting pressure there and I clip the very top (port clamp area) to my bra strap or shirt with a little tube clip. If Im lucky with a little fiddling it works perfectly fine and my pump wont alarm lol. Although when it comes to pouring meds Its a bit harder for me to access alone and sometimes need to ask for help with the pouring.
When I first had the tube placed we had to use a soft brace/support that we had to alter a bit to work. You can see that in my "Braces and Splints video." th-cam.com/video/NevbHBhd0CM/w-d-xo.html Its the tan one at 3:30
i have cyclical vomiting, I know all about vomiting and the health problems and dental problems that come with it.:/
Corissa Smale can I ask what that is?
Acadia, I found this on google.
"Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks-also called episodes-of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days."
Badzeep oh my god that sounds absolutely horrid D:
Acadia Mercer Yeah it does... mad respect for all the people who deal with it!
It would be literally unbearable for me as I struggle with serious emetophobia (fear of nausea, vomitting etc) 😣
I have cvs too :)
Can you please make a video showing all the braces you need? Includying the feeding tube :)
I have EDS, Mast Cell Activation syndrome, Gastroparesis, Disphagia, POTS, to name a few. I was dying in 2014 and unable to eat ANY solids, and reacting to everything. I found the Cusack Protocol on FB, and it was a rocky road getting started, but my last resort. After a year on the protocol, I started getting better. It's not a cure, but something to put symptoms into remission until a cure is found. I have gotten SO much of my life back! I eat again, though sometimes I still have some minor troubles, my Mast Cell syndrome is in check, and my pain is minimal. My Chiari symptoms have improved too. I am telling you b/c thousands have found reversal of symptoms and HOPE through this protocol. I hope this info helps you too!
+Michelle Wickline Thank you so much for the info, I will look more into it. I have been hearing a lot about the cusack protocol lately. Im so glad it has helped you so much and helped you to stabilize! ❤️
Its funny this pops up on my feed now, Its been exactly one year ago that I nearly had to get a feeding tube I have Eosinophilic esophagitis
I have SO MANY allergies, I choke on food all the time like you did , the exactly same way, and it got to the point where my oesophagus Has shrunk from my disease it was as tiny as my pinkie finger, I'm a lot better now but it is still a risk in the future
Can i ask you fo you bolus your water flush or do you push it in using a syringe
that is exactly what i need too