Sooo I am pretty nervous to put this video out there because it is very raw, real, and emotional, but I really wanted to create a video to show and explain what suffering with gastroparesis is really like. To those watching who have gastroparesis, or another GI condition, you are an absolute freaking warrior. Going through something like this everyday is not an easy task. Lately my health has not been the best and I am so so tired because I haven’t been able to get my nutrients in, and I just empathize with you all so much. Keep fighting, you are not alone and we can get through this! To those watching this who do not have a GI condition, thank you. Thank you for taking the time and effort to try to learn and understand what it is like to live with a crippling GI condition. The world is a better place with your knowledge and understanding. It means the world to me (and a whole bunch others) that you would take time out of your day to watch this. Whoever you are watching this, I hope this video helped you or impacted you in some way. You are all beautiful people and can accomplish anything you set your mind to. I love you all and thank you so much for watching. Feel free to comment anything or share part of your story.
So glad you did. For the first time ever I broke down and sobbed because I can totally relate. This is my life, my sadness, my hopelessness. I feel less alone. I feel more sane because we are in this together. I totally had a breakdown from this, but I needed it. If only we could all get together and eat nothing and just be like a support group and hug each other and hold each other up. :) TY
@@goombakisses7398 aww it always breaks my heart when someone says they can relate because this is such a sucky thing to be able to relate to because it is so hard. And sometimes we need a good cry to fully feel all those emotions because I feel like we suppress them for awhile. You are not alone, we are all in this together!
PLEASE TELL ME WHAT THE DOCTOR DID FOR YOU THAT HELPED YOU SO MUCH!!! PLEASE!! I WATCHED THIS AND IT WAS LIKE MY DAUGHTER WAS TALKING AND SAYING WHAT YOU ARE VERBATIM!!!😢😢😭😭😭🙏🙏🙏🙏💔💔💔💔 ANY INFO PLEASE!!! IM SO SORRY YOU'RE DEALING WITH THIS CRUEL DISEASE!! IT IS TRULY HORRIBLE!!!! THANK YOU FOR SHARING!!❤️❤️❤️✌🏼
I’ve had gastroparisis about 15 years ago. It has gotten worse over time and I had a stimulator placed a couple years ago. Last month I gave in and let them put a feeding tube into my intestines. I now live 16-20 hours even single day pumping nutrients into my body. I would never wish this on anyone
I did not expect to cry watching this. The struggle between the 24/7 nausea and emetophobia is the absolute worst. Thank you so much for making this and allow people like me feel less alone. I hope you are doing good and never lose hope🙏🏻 We got this!
This just made me cry thank you. I have been drug tested before multiple times in the ER. For my seizures and for my Gastroparesis. I had a CBD gummy for anxiety just before the ER once that slightly elevated my Marijuana marker in the test and the ER doctor sent me home saying that my seizure was “Because I got too high” despite it being CBD and not THC and I was not in any way high. Despite the fact I broke out in a rash and my seizure lasted more than an hour. Despite the I hadn’t eaten a week because my Gastroparesis. I had about 9 long and painful seizures, barely any ability to eat, and 3 ambulance rides before they finally admitted me to the hospital. And honestly this video really made it sink in how absolutely messed up that was. My blood sugar was about 30 and I was extremely dehydrated in the hospital. I wasn’t diagnosed with Gastroparesis yet. They continued to over hype the fact that I have a history of anxiety and forced me to see a psychiatrist in the hospital. I am so glad my family helped me advocate for myself and make it so it wasn’t for nothing cause it lead to me getting POTS and Severe Gastroparesis diagnosed. I’m still fighting for treatment beyond nausea meds and IV Therapy but it’s RUclipsrs like you who help encourage me to keep fighting.
They haven’t taken my inability to eat seriously because I am overweight due to medications. I’m really sick of feeling so frail an my medical notes from GI doctors say I like “well nourished”.
And the bed thing with your boyfriend hit me in the feels. My immediate family members have all accidentally touched my vomit and I hate that that is a thing. My Husband has had to clean up my urine during seizures, help me change when I’ve puked on myself, been in the room helping me through a hospital enema…. People honestly have no idea how dehumanizing it can be.
@@samrobinson5130I had the same they gave me pills and I would gain weight even when I was only eating less than 500calories a day...problem was I would also have to throw up a lot it was a terrible time 😢
Wow…. I don’t have any words 😔 I just started to learn about this disease, and It BREAKS my heart to see this happening to people, and without any real cure for it. Thank you for sharing your story! You are such a beautiful, and strong woman! You are also SO blessed to have such an amazing husband🙌🏻 It was beautiful to see you document the little moments with each other in the video. Having the support and love you have is incredible! I’m so happy to see that that surgery has helped improve your life! Praise God!🙏🏻 I will be keeping you, and the many others fighting this disease in my prayers🩷
This video left me in tears. As someone who also spent a lot of time in the hospital, it is truly inspirational to see how strong of a person you are and how amazing you and your boyfriend's relationship is. Thank you for sharing!! ♥️
as someone who was diagnosed with Gastroparesis and Eosinphilic Esophagitis a few years ago, this video really hit home. Proud of you, I hope your doing better
I just shared this video with my friends and family. I've been diagnosed with gastroparesis since late 2020 and I haven't been able to express the toll it has taken on me as well as you have expressed it in this video. Thank you. ❤
I have severe EDS and gastroparesis, I just got a feeding tube and I think that this video is really helpful! I only found your channel today but I already love it!
Thank you so much for making this!!!! Such a real look into what we all deal with daily! I relate to every single thing you said, especially the emetophobia! You are so strong 💚
Aww you’re welcome! I really wanted to create this video to help show people what it is like to go through this on a daily basis so I am so glad I was able to do that. And omg the emetophobia it’s awfulll and you are just as strong💚
@@KennaKrueger There's just about nothing worse than the constant feeling of nausea and the vomiting associated with it...even if nothing comes out of it the feeling of constant retching is terrible and uncomfortable and that you never get a break from it when your stomach is so upset. Yesterday I had a terrible bout of nausea and vomiting that lasted for a couple of hours and what was worse about it was that nothing,not even zofran could touch it....fortunately it only lasted a few hours and knock on wood I'm feeling better today so far.
Thank you so much for creating this video to share your true self with the world and to help others who may be going through something similar to relate. You’re my and their hero 🙌🏻 You’re so strong and so brave and it makes me the happiest person to see you grow so much and bright so much love into the world despite all you had to endure. You’re an angel. I love you!!! ❤️
you are the absolute sweetest🥺 you are my hero❤️ thank you so so much for your endless support through all of this and inspiring me every single day. I love you so so much❤️
I'm sorry you had to go through all that and still suffer, I'm about to take a gastric emptying test in about a week to confirm gastroparesis. Thank you for being so very brave by posting this video with all the good and the bad of what it is like to live with this condition. 💜
This really does describes life with this awful condition. I feel like the only 30 year old male in the world with idiopathic GP. My symptoms are similar to yours, however, luckily I don't have the malnourishment or bloating. I too have a complete phobia of throwing up and no matter how nauseated I get I just can't do it. Luckily, I am still able to eat somewhat enough for my smaller body type. There are many days where I just don't want to go on. Its so unfair . Like you, I continually question why me? what did I do? I otherwise would have had the perfect life, not wanting for anything. Thanks for your candid and true depiction of what this F**king illness is. I had botox done which didn't help and I have consulted wth a Dr about GPOEM and he didn't think it would be worth the risk completing the procedure on me. I feel like there is no other options and nowhere else to turn.
It must be really isolating being a male with this condition. I know the majority of people with gastroparesis are female and the focus is mostly on them. I would recommend trying to find other males who have this condition if you haven't already and connect with them! While it doesn't make the physical symptoms better, it does feel less isolating which can be helpful. It often does seem unfair but I try most of the time to believe that this happened to me for a reason and to figure out what good I can contribute into this world with this illness. It is not always easy and I am not always successful at that but sometimes it really does just help to share your story. You are very welcome for this depiction. I truly wanted to show what it was like to live with this condition. I personally never got botox but the GPOEM has helped me significantly with my stomach (but now I think my intestines are slowing down causing issues), but if you feel lost and don't know what else to do, don't be afraid to get a second opinion. I had to see multiple doctors before finding one that would actually listen to me and get me a treatment that is best for me. Keep fighting and find a community and someone who will give you the best treatment! Thank you again for sharing part of your story!
Sorry you have that. I am also a male with digestive motility issues. Mine are caused by having hypermobile type Ehlers Danlos syndrome. Have they tried you on Mestinon yet for your gastroparesis? It's an older medication, but it has emerged as a new treatment option for gastroparesis and intestinal dysmotility.
You're video brought me to tears because I have so many chronic illnesses and have been told I just have IBS and Diverticulosis and literally am about to go talk to my boyfriend about my symptoms because he doesn't understand why I have to take so many pills and it upsets me but your video rang true to me I've been told so much of what you said by doctors and it just kills me on the inside to this day because they still are saying it.
This is incredibly beautiful- exactly what I feel and think all the time, I couldn’t have put it more perfectly myself! Thank you so so much for sharing this & spreading awareness for our disorder 💗
awww omg thank you so so much💚💚 I am so happy that I can be a voice for others with this condition because I always wish there would be a way to show others what it was like living with this disorder when I was super sick but could never quite articulate it. Thank you so much again and I am sending you all my best wishes💚💚
Today is the first day I've ever heard this noun that describes what I've suffered with my whole life, along with gallbladder disease and gastroparesis: Emetophobia: extreme fear of vomiting. One counselor acknowledged it back in the day, but gave me no name for it.
Yes that is what it’s called! Luckily mine isn’t as bad anymore since I was a nurse for a little bit and was exposed to it a lotttt but definitely still there a little
I was brought to tears watching this. I am 18 and got diagnosed a little over a year ago after going to the doctor for 3 years and them recommending me to therapist after therapist saying I had anxiety. I recently got access to my blood test results and have had the markers of malnutrition since January 2018. Since my diagnosis I've gotten two endoscopys with botox. I've gone several days without eating and called the hospital to be met with "try taking all your meds and then eating". The part about sitting in the shower, bruising easily, and staying in because there is going to be food wherever you go. My last botox just wore off and I have been dealing with the fact that I can't eat anymore and they can't perform the procedure again. I've been looking up how everyone else has been dealing with this disease. This helped so much and you described everything perfectly, thank you!
This was so beautiful and authentic. I can’t thank you enough for all the awareness you spread and for sharing your story. Sometimes it’s hard to see the bright side of all of this but you do a damn good job at it. Keep fighting the good fight, know that we love you, and please say a prayer for me tonight because I’m on 4 laxatives and haven’t had any success in two weeks😅
Thank you so so much❤️❤️ it is so so hard to see the bright side sometimes but I try to have as much hope as I can and sometimes you just need a good cry and full day of pity. It’s important to take time for yourself, as much time as you need because life is hard, especially with this. You keep fighting too, I am right along there with you! Omg I’ll definitely being saying a prayer for you because I’ve been in that position multiple times and it is such a scary gamble😅😅
This is currently my journey…you are completely explaining my life. I am scheduled for NG/J tube placement tomorrow and I have no idea what lies ahead. Thank you for posting ❤
I’m watching as I’m currently going under an investigation to see if I have this or another similar problem,I have so much respect for you. I’m also scared of getting conformation of what I’ve got,I don’t know how it will affect my mental health or my diabetes.
I literally cry after watching this video, I’ve been suffering with gastroparesis for the last seven years of my life and it’s completely destroyed me I live in New York City, and I can’t even work or even take care of myself. I became homeless because I was unable to pay bills or do things for myself. I’m on the verge of getting a surgery called a subtotal gastroenterology procedure. I have no idea if it’s really going to help me. But at this point, I’m willing to try anything to get my life together. but I honestly do feel and agree that most people that do not suffer with this disease truly do not understand what we go through and that it’s beyond medication. Nothing you do helps I would like to know the name of the procedure you got to see how it helped you.
Thank you 🙏 I relate so much to this constant nausea had it for 20 years and this video I the first ever I am really relating to because you explain your feelings so well! You’re angel for making this video !take care!
Thank you for this video. I hate that you're struggling so much. I have severe emetophobia and would rather lose a leg than feel sick. Gastroparesis is an illness that im so terrified of getting. I don't think i could continue to live. Thank you for showing this.
I am also fellow GP warrior and couldn’t help but cry this entire video. You did an amazing job at summarizing GP, how if affects us, what is has taken, and what it has not. Thank you so much. You’re inspirational.
aww thank you so much for this comment it means so so much to me. So sorry that you also know what this all feels like but we are strong and can get through this together💚
Im 32 years old. I became a type 1 diabetic at 25 years old. I did not take care of myself. Im not gonna lie i was about 190lbs 5'10 thew up blood for 3 weeks and dropped 50lbs. They explained to me that i was diabetic and it would be forever and i did minimal research and got insurance and my first monthly supply of insulin. I met a women 4 years ago the age of 28, before i met her, during and after i smoked, drank and did drugs. I stopped doing drugs at the age of 30 so did she. I stopped drinking at 31, not sure what happened. They say uncontrolled blood sugar levels cause gastroparesis. I was doing better than i ever had but it was too late. I ended finding myself having massive weight loss and appetite loss without really noticing. I couldnt walk bare footed to the bathroom, cause my feet would hurt so badly. My legs from my butt down to the toes hurt and i mean badly. Couldnt barely touch them let alone walk. I couldnt get help for almost a year after seeing all different types of doctors. Did the tracer test, found out i had gastroparesis and tbh atleast i know now. Ive been diagnosed for about 3 months. But have had it for a year now.this video touched my heart. Cried the entire time, its honestly terrible. I thank god everyday for my girlfriend, she goes through so much with me and she has never once even complained. I wish all of you kings and queens the best life you can have and all i want to say is god bless you and take your diabetes seriously before you have this happen to you. I was naive and thought because i looked and felt healthy that i was. Diabetes is an everyday upkeep that even if you feel okay, please i beg you. Go the extra mile and take extra care of yourself because just like type 1 diabetes u can wake up 1 day and this can happen to you. Stay safe everyone
Wow, this video is so powerful and so well done. Living with your fear daily is so tough to do. It is so tough to do normal things when you feel sick all the time. I too got so nauseous all the time that watching something would become too much. I also lost 20 lbs and become severely underweight. I too had the pouch of medicine with oils, pepto, gas-x, tums, Zofran. And I couldn’t leave the house without it. Showering was impossible somedays. Eating was impossible somedays. Trying to walk from point A to point B felt impossible. Never wanting to leave the house because you feel awful or you don’t want to feel awful when you get out. Walking around the grocery store felt impossible. Going to target or the mall only to feel so sick half way through and just wanting to be home. Never feeling hunger or thirst. Never feeling peace and bliss after a meal- even though all you ate was a small amount of mashed potatoes or dry cereal. Knowing you NEED to eat more yet it’s impossible to do so. Going to the GI doctor and not getting any tests done and getting told “it’s just acid reflux. Change your diet” when you’ve cut out EVERYTHING already. And the “are you sure you aren’t pregnant?” And “it’s probably just IBS. you will need to figure out how to deal with it” and “it might be gastritis. Take this medicine for the rest of your life” This being said, I never had gastroparesis. Instead, I had an overactive gallbladder which was only revealed via HIDA scan. I have had surgery and am SO much better now. If you are watching this video, PLEASE advocate for your health at the doctor. Bring someone with you for support if possible. Push for answers. You will find some!! You will find a better way to live. Kenna, you have created such a beautiful support system through these videos that many will be so thankful for, including myself. Thank you.
wow thank you so so much for writing this out. I literally felt all of these things you talked about as well and I know so many other people do so your response will also help so many people. The walking from point A to point B sometimes was so so rough and I can’t even tell you how many times my boyfriend looked at me trying to make it through the grocery store and was like let’s just go home and get you in bed I will go get the groceries later because the nausea was just overwhelming but I wanted to come along and try to be normal because I love grocery shopping. And the ride home then is awfulll because feeling sick in the car is a terrible feeling. The never feeling peace or bliss after a meal is also so difficult. This is something I am still struggling with now because of the bloating. I often sit and wonder how people just eat and not feel like death afterwards and why I can’t feel like that. I have a constant battle with myself everyday trying to convince myself to eat something even though I know I am just going to have to spend the rest of the day in bed. Dealing with GI doctors is probably the hardest, because a lot of them have a tendency to invalidate you and make you feel like you are just over exaggerating everything. Omg I forgot about the “are you sure you aren’t pregnant” one. I have gotten that every single time. And even though you didn’t have Gastroparesis, you felt all of this and experienced all of this pain and it is valid. You have gone through so much of this pain. I am so so excited to hear that you are so much better and I am so happy to see that you are still empathizing with others who are going through similar situations because it helps so much. Yes please advocate for yourself and bring support. I would not have gotten the care I need without my boyfriend being my advocate! I was too sick and emotional at doctors appointments to speak up for myself so my boyfriend had to fight for my care and he is what got me the help I needed. But keep fighting for what you deserve! Thank you so much for all of your support and kind words. Your support is what pushes me to go out of my comfort zone and create these videos. Thank you so so much💚
Kenna K. Here’s a funny story about the “are you sure you aren’t pregnant?” After seeing like 5 doctors within 2 months and each of them making me do a pregnancy urine test, they all finally believed me when the tests came back negative. Keep in mind, if the test came back positive, I would literally be the Virgin Mary 2.0! So I was very confident I was NOT pregnant. 1 hour before my gallbladder surgery, they make you do another urine pregnancy test “just to make sure”. I understand it’s protocol. Well. 1 hour before surgery, my pregnancy test came back POSITIVE. Doctor: we see a very very faint line on your test...it says positive. Me: WHAT. HOW do I explain without looking CRAZY that it’s physically impossible for that to positive Doctor: are you sure you didn’t have a miscarriage? Me: uuuuuhhhhh yeah I’m sure! Doctor: well we can take some blood to see if you are really pregnant or not. So I’m FREAKING OUT thinking “my surgery is gonna get canceled 1 hour before because I’m the Virgin Mary...” Blood test comes back. Nope! Not pregnant! False alarm!
@@kristinefish9806 omggg i love this story!! I swear they never believe you no matter how many times you say it's not possible haha Omg a false positive?? that is so crazy, i would be the person to somehow convince myself that i am pregnant even though i know i am not but i am glad that they tested you again so you could get the surgery!
Thank you for the great video Kenna! I was extremely sick for months (or likely even longer, but my condition wasn't so severe that I was concerned). I lost 16lbs in only a couple of weeks, and was drastically dropping. After spending a month in the hospital, and having many tests, X-rays, ultrasounds, various scans, endoscopy, colonoscopy, and finally a gastric emptying test, I was then diagnosed with gastroparesis. I spent a month in the hospital trying to find a medication that would help me. Nothing worked for me. They tried a procedure to stretch my pylorus and then inject Botox to relax things. That didn't work either. So, my last resort was to have a GJ tube inserted. I am getting adjusted to getting all my nutrients via my feeding tube, I haven't been able to consume food orally at all. I can finally manage to have about 50-100ml of fluids now (coffee, tea, juice) which is a nice start. The nausea and vomiting are constant, and I am grateful for the odd day that I can say I've been nausea free! It's a rarity these days though. I'm hoping things settle down, but I understand that's a part of this horrible condition. Gravol, Zofran, and peppermints are my lifesavers these days. This has been very life changing for me. I have always had an active lifestyle, and things came to an abrupt halt for me. Your video showed me that I am not alone in this new journey, and that there are many others suffering what I am going through. It helped me realize that my symptoms are just a part of 'a day in the life of gastroparesis'. Like you, I will adapt and adjust to this condition, and not let it take my life! We are warriors, we are strong, we will survive! Thank you for the video, and I look forward to following your journey with you and learning more about gastroparesis through your videos. 🙏
Thank you for putting into words what my 16yr old has been feeling like. We highly suspect she’s been suffering from Gastroparesis for the last 3yrs. And it wasn’t until I found your videos of you sharing your story…that I felt like I could understand & grasp what she has been experiencing…So…THANK YOU! We are meeting with GI in a few days & we are praying for this as the answer. (Not that we want Gastroparesis but just to have answers for all her struggling.) But after a 12lb weight loss in less then a week…it’s time to get to the bottom of all this. Any ways…all this to say Thank You for being brave enough to share your story & allowing my daughter to not feel alone.
I feel like you're telling my story. I tried to keep it from family and friends. I started posting about it I was nervous at first but it's time to everyone knows about us. Your boyfriend is amazing .
I absolutly love this video, i feel like i can relate to it so much but with different symtoms. I have suffered from severe gerd for 5 years and no medication or clean diet helps, even water comes back up. I have to sleep extremly elevated or else i wake up choking on my vomit, even if i wait 6 hours upright before i go to bed, but the heartburn is always there even sitting and standing up. 24/7, it never goes away. I had some tests done and everything came back fine but my gastro doesnt believe its as bad as i say it is and that just makes me so frustrated and cry because i know theres something wrong. I desperatly want a gastric emptying test. I love all your videos im glad i found your channel 🥰
I always get so sad when I hear that others can relate but I just want to know that you are not alone and all of your feelings are valid! I personally never had much experience with GERD but that sounds awful to live with and I find it especially hard when you do everything right and eat as clean as you can and your body still doesn't cooperate and you are still sick. It is so unfair! You are so incredibly strong and all of your symptoms still exist and still effect you even if a test doesn't validate it. The tests aren't 100% accurate and you know how you feel best. Keep fighting and advocating for your health and find someone who will listen and give you the tests and treatments you need. You got this!!
Sorry you experience all that. Definitely get a second opinion or switch doctors. Keep at it until your get the gastric emptying test! I used to wake upnchoking on stomach acid as well, and it's very disturbing. Mestinon is what ended up fixing my digestive motility issues. It's an old medication which has emerged as a new treatment option for digestive dysmotility.
I would definitely get a second opinion. My Dr put me on Dexilant. It made a huge difference. I too was having GERD so bad that I would wake up throwing up in my mouth choking trying to breathe and that was elevating my head at night. I am now on it twice a day because of my symptoms of the gastroparesis changing but it still is the best by far. I am on other medications for spasms and nausea but it would be worth looking into to. Hope this helps.
I found this video at the beginning of my health crash. It gave me someone to relate to. Someone who made me feel like I wasn’t alone. Someone that gave me hope. I’ve come back to this and I’ve sobbed the whole video. I’ve never realized just how much I bottle my feelings and completely numb myself until I’ve had to face them. I go to therapy but can’t think of what to talk about even though I know it’s there. I lost a year of my life. I was so malnourished that I don’t have memories. On my birthday I couldn’t eat my special birthday dinner. I was hospitalized a week later. I still remember my first tube feeds. The feeling of my empty stomach filling up with the barest amount of formula still haunts me. I’m not ok. This illness has taken everything from me. I try to be strong but I’m not. Those bottled up feelings manifest as anger towards my family. I find myself so short tempered that my dog eating my little amount of candy or my door being left open to send me into a sobbing rage. I hate being like this but I can’t fix it. I want my life back. I want to be my normal healthy self i was. But I’m here. I’m not dying but I’m not better.
You are so brave!!! An inspiration!!!! Thank you for taking the time to explain this so very well…I cried from start to end…I just had my second specialist GI apt for GP and was told by the doctor that until I loose a massive amount of weight there is nothing to be done because I am allergic to the mobility medications and all nausea meds (except for phenergan)….but when I “look like the starving kids on TV”….that’s when he said he would help me….despite me being on daily steroids because I have Addison’s disease….I also have severe psoriasis….(like being in the burn unit for weeks during a flare kind of severe psoriasis) the last year of life has been just tears and vomiting and pure loneliness….I am thankful I was blessed with an amazing man as well….we met and fell in love very fast in 2008…six months later I got sick and spent months in the hospital from a surgery gone bad and there he was….staying with me every second he could….he would make sure our three kids had everything they needed back home then would drive and hour to the hospital to sleep on a chair bed beside me…..that kind of love rarely comes around….13 years later and he is still that same person….(we have more photos of us in hospitals than at home-but the love is real)….again I want to thank you for making this video….I want to share it with my friends and family who believe the big lie that I tell them….you know….the “ I’m okay” lie….just like you said perfectly you said the big “I’m okay to not bother others”….I do that a lot too….I think all of us chronically sick people do….I hope you don’t mind me sharing your video as a means of real education that I can’t seem to convey well💚
I apologize for writing so much, I just keep listening to more and I am so happy you also see the positives in your life, your husband is awesome and it takes a real man to do what he has. It's not just your disease but his too, he owned it and I know it had to be tough, I am quite positive that the struggle bonded you both for life. I believe we do sometimes not understand what the other person is dealing with and how they suffer, even if it's just feeling guilty because he can't fix you, because you can be sure he would give anything to make your world better. It affects people that love us in different ways, they feel guilty, angry because they can't change it, they may not even understand what you need from them, yes their quality of life suffers for different reasons, but primarily because they feel helpess to help the person they love so damn much. I am really happy to have been able to cheat and see that things have mostly turned out well for you both, that you guys got married for better or worse, through good times and more importantly bad times. He could of ran away in terror but love won and I personally admire your husband for being such a wonderful person, but understand you are too, you tried to shield him as much as possible and in the video you both admitted doing the wrong thing, rather than accept it I guess there was a sense of avoiding it, which made it harder for both of you. I really haven't talked about my illness for the same reasons you didn't as well I felt in comparison to so many my disease was just so small on rhe grand scale how dare I complain. I still feel this way because I have learned of so many diseases like yours and worse and some not as bad but more than mine, it's just a realization that I could have it so much worse, of course I could have itbso much better, but that frame of mind gets into a pity party and I don't want to do that. 8 rather would accept my limitations and be grateful I didn't have something worse, and feel empathy for those that suffer far more than myself. I believe you understand me, probably many of us think like this and maybe thats what gives us the strength to carry on in a life that many times makes you wonder why ❤
omg i have gastroparesis and i have emetaphobia as well and i never knew someone else who did so i feel so much less alone. I'm so sorry you've had to experience this, it's such a terrible illness.
Thank you for this information and reality. I was diagnosed with gastroparesis about two years ago. I also have chronic pancreatitis. The strange thing is I weight 340. I just recently started having more issues with the gastroparisis. The problems I had in the past we thought was from the pancreatitis like a lot of abdominal pain, severe nausea, cramping, diarrhea or constipation. Now we are leaning more towards the gasteoparesis. I have been hospitalized several times, my hair continues to fallout, my nails are very brittle, exhaustion all the time, and me constantly feeling like I should suck it up and do normal things. I don’t have the energy to do things that I think I should. There are times my family just doesn’t understand why I am so exhausted or that I just can’t do something all of a sudden. This disease hits at a moments notice. Right now, I can eat non fibrous stuff unless of my allergies to food which just since I have been diagnosed have been identified. The list is very long such as most all fruits and all nuts! The hospital trips are more frequent and seem harder to deal with now. I feel they sometimes think I am only there as a drug seeking person. Most of the time, it is because my meds are not working. I do eat small meals. Large meals even average will tear me up. I guess I’m getting used to what I can and can not have. My question is I understand there are stages, so I am just in an early stage? My Dr always says I am in a book all by myself that my symptoms and ways don’t go along with the normal. Has anyone heard of someone like me having these issues? Thank you again for your channel. 😅
Thank you for being brave and sharing this. I have a patient that comes to our hospital often and this has helped me to understand a bit more what she has to deal with.
It took 16 years for my diagnosis they said it's because I'm diabetic that it took so long. I have severe emetephobia as well I'm like seriously of course I'd get one of the chronic illnesses that has nausea and vomiting as the number one symptom. I am grateful that you were able to get the surgery and that you got 4.ogpa in nursing school! 💕
I was diagnosed with Gastroparisis and Elhers Danlos 4 years ago surgically placed feeding tube now changed out to a NG tube surgical tube being placed again soon 😢 much love girl gastroparisis warrior 💚 and I also have a HIGE fear and anxiety about throwing up it scares me so bad but no matter how much it happens it never gets better I have had so much dental work done due to the acids in my stomach coming into contact with my teeth 😢
I had a lot of symptoms years ago then I looked it up and that’s when I decided to see the gastroenterology doctor and said to be tested for gastropresis myself so they finally did a hidascan and found out that I had extremely slow emptying of the stomach when in fact of 2004 my cat scan showed food likely to retain food in stomach which nobody never ever mentioned gastropresis to me at all I was diagnosed back in 2014 I’ve had to follow a certain diet and completely lost so much weight it’s a struggle steal dealing with stomach issues I completely understand especially the nausea 😮
If your pictures trigger anyone, then that's on them. I appreciate your courage just to tell your story, when I came looking I found your story and I fully understand your story is uniquely your own there are common threads that apply to far more than yourself. So thank you for sharing because I am 100 percent sure it's helped me better understand and for those dealing with the same issues, they know they are not alone. I understand you pretty well as my disease isn't the same as yours, regardless it applies, people think you look okay, they don't understand on the inside you are struggling just to survive and many people don't have a support system which is all the more hurtful. I came across this disease by chance and researched it because I was genuinely seeking to understand not just the scientific jargon that is void of humanity, but really understand how this affects a daily life, it's never nice and tidy like explained on Wikipedia or mayo clinic etc. those are just a basic explanation void of individual real world experience. Hearing someone living it really makes it hit home how devastating these illnesses are. You have done a great job documenting and helping others, I know to a degree how this goes, honestly I don't remember how it feels to be healthy, you fall 8nto a new normal, and that happens over and over as disease progresses. We already know there is no cure and we have to live within these new parameters, complaining fells useless and like it falls on deaf ears and people think we are just cry babies. I know the stigma and it's very real. I do believe your attitude taken does help you live better and I know how important it 8s to have someone that loves you and tries hard to understand and just be there when you feel weak or feel like giving up. Thank you for what you have done, I am sure you have helped far more people than you even know. I know that realizing my disease is nothing compared to others has humbled me and kept me from getting to much into a pity party and thankful I don't have something much worse, I can imagine most of us use that to face our disease understanding it could be so much worse. I stumbled onto another disease that contains yours and as if not bad enough they had to deal with their joints and ribs dislocating as if it was not bad enough here is some extra hell to endure, then there are even worse things that are not survivable like ALS which is more known and many less known lethal diseases, I see these and think to myself I have no right to complain, even against your disease, mine seems mild in comparison, yet it sucks too. I guess I am like most I don't speak of it typically, I just live it and do the best I can within my current limitations. So really your words hit home and I totally understand you. Different disease, yet loss of quality of life. How does one measure the loss of quality I have never figured out, I just know that all of it is bad and there are definitely levels of bad and most of us can pretty easily find something worse, that makes us feel lucky or at least thankful we don't have their level of torment. And to say they wished they had your disease to be skinny shows me the utter ignorance they have on such diseases. I really can't hardly believe someone would say that out loud. Be careful what you wish for, clearly they would repent such uterrings given a week or month of the suffering you have faced, probably even a single day. Yes people can be completely ignorant. My disease I can't eat often not for the reasons you did but my disease basically shutdown my metabolism almost completely, if I ate normal I would be incredibly obese, I go three or four days without eating and then just one meal because I don't burn it off, even not eating I lose weight incredibly slow, calories don't add up in my case. I can not eat in 4 days maybe lose a pound if I am lucky, however I do have issues with low blood sugar from such a eating regime, I have to watch for that too as low blood sugar can be far worse than high blood sugar. 8 don't mean to get into my issue, I just wanted you to know there are many of us with different diseases but the same reality, loss of quality of life, and you got yours even younger than myself, I tracked mine to around age 27 to 28 still in the prime of life but wow I feel mine is nothing as you truly were in prime time for life everything should of been great and nothing to worry about other than grades. Again thank you for sharing. You are truly very strong ❤️
Recently just found your channel. I do not have GP, I have something called FAP, it’s a disease that causes thousands of polyps that will eventually turn to cancer. So 20 years ago I had my large intestine taken out. Things were great for just over 10 years. Then I started to have issues. Nausea, bloating, vomiting if I eat too much. Over the last 5 years I ate less and less. Losing about 65 pounds. Wasn’t trying to loose any. In that 5 years i had 5 abdominal surgeries and it was determined that I have a desmoid tumor, right where my stomach and small intestine meet. It’s causing a minor blockage. They can’t remove it for a few reasons. Got to the point last fall where I was losing 1/2 pound a day. They treated me like I have GP, put me on all the same treatments, diet, lifestyle and such. So in the spring I had a j tube placed. Best thing ever. Put on some weight, I’m now at a very healthy weight for me. Have energy again, and don’t feel like I’m 80 anymore. Still have some issues, but over all I feel amazing. Secretly I have wished I had GP, so many of my issues overlap. Then i could have a support system. But no one with my disease has the complications I do. It’s very rare. According to my dr, my tumor is strategically placed for maximum damage. I recognized the hospital gown in your video. And felt compelled to write this. I have been a patient at the Cleveland Clinic for over 20 years. All my abdominal surgeries have been done there. I travel from Michigan, because my condition is so rare, and my complications with this disease are even more rare. Anyway, thanks for sharing your story. Wish you all the best!
Hi Jeni! First off, I just want to say thank you so much for sharing your story. More people will become more aware of your condition now because of your comment and that is such a good thing! I have heard of FAP before but don't know too much about it, but it sounds quite frightening to have to go through especially having your colon removed, you are so strong! Going through all of the GI symptoms you had to experience for five years must have been so tough, especially with no answers. Those symptoms are so debilitating and hard to live with but I am so glad you kept fighting. I have actually never heard of a desmoid tumor before but I am so happy you shared. I am also happy to hear that you were able to get a feeding tube to help improve your quality of life. Having proper nutrition is soooo important and changes things drastically. I know on days where my symptoms are bad and I am struggling to eat, I am so so tired and can barely do anything. I hope the health issues you still have now stay the same or improve because you have been through so much already and deserve only good things! It must be so hard to not have a community with your issues because having other people going through the same experiences as you makes things a little better because you feel less alone. But just know that you are not alone, and that although it may not be gastroparesis, I still recognize you as GI warrior. You have fought through so much and are a very welcome member of our community. All of your health issues and whatever you are feeling is all valid and although I do not know exactly what you are experiencing, I will always do my best to learn, understand and empathize. I actually flew from Florida to Ohio to meet with my doctor because it was hard to find a doctor that truly understood my needs, but I am happy that Cleveland Clinic was able to help your incredibly rare condition and make things better for you. Thank you for sharing your story and I wish you nothing but the best!
Sorry for what you're going through. Does the metabolic approach of cancer offer any other approaches that could diminish your pain? Supposedly approaching cancer that way is offering many breakthroughs. Here's one place it's mentioned ruclips.net/video/Yyt3Do4w7fs/видео.html I'm sorry if it's not helpful at all to you.
@@KennaKrueger I have no idea how I missed your comment. Now I feel super rude for not replying for 2 years. Thank you for your very kind words. Yes the last 7 years have been very challenging mentally. With them not having answers, and little hope for a cure/great treatment plan. Bit I am incredibly blessed by my medical team at Cleveland, and chose to focus on that. I have continued to follow you on instagram. I have not been able to get anything from your shop, always sold out. I have been eying your sweatshirts, but I am not one to wear something that says I have an illness. I totally get that it creates awareness and I totally support that. For me, I don’t like to be reminded that I do have a chronic illness and don’t want to always talk about it. Yes I am an open book and those in my life know. But there is so much more to me than this. But if you did some positive quotes (something like chose to see the blessing, or choose joy) I would love to support you. I know that’s not totally your focus, so if you don’t chose to do anything along those lines I won’t be offended in any way. Will find something I can get at some point, when it doesn’t sell out! Lol
Thankyou so so much… I am suffering sooo hard right now and don’t know what to do :( I really needed this and I’m so glad to see you having some relief !
This was so beautiful, well done! I related so much to this! I've had gastroparesis for years now and you nailed some of the feelings I've had. Oh the nausea, ginger chews, the fear of throwing up, the skinny comments, the doctor appointments, the pretending that you're fine, the um lactating haha. I actually just had the POP procedure done in Ohio a few months ago and while the nausea is a little better, I'm still hopeful that more can be done for all the GI discomfort. Keep sharing your story :)
Aww thank you so much that means a lot! I feel so bad that you also relate so much to this because it’s such a sad thing to relate too. Omg the lactating, probably one of the biggest surprises I had during this illness😂 I hope you continue to heal from the POP surgery and am also really hopeful that more can be done for the discomfort. Thank you again!
Thank you soooo much! That's literally just my situation! Im sooo tired too and today a doctor that didnt know about gastroparesis told me again its a psychosomatic thing when I know it isnt. It is officially diagnosed with a szintigrafie too and I probably have it since my late childhood but the nausea was always blamed on stress and food intolerances. The doctors visit today was so frustrating. Of course I was looking stressed and maybe anxious because I need to talk about really embarassing things with my digestion and because I simply cant eat..it was 4 pm and i still had the food from the day before in my stomach and I was so tired already and just too tired to explain gastroparesis to a doctor that just told me she doesnt know much about it. The fatigue from lack of nutrients is just so strong when your literally starving.. Hope they send me to a gastroenterology station in hospital and not to a mental institution where they might try to fix the broken stomach with pills that make everything even worse. Just thanks once again!!! Wish I could show this to my doctor..
I got diagnosed around mid 2020 and it felt amazing to finally know why I always felt so awful. Right now I’m just on pills to help it but I feel it getting worse lately. The vomiting is the worst, especially when I kept gaining weight too I got so self conscious and stopped eating most days but still felt so awful all the time. Learning about what I have has helped immensely and I feel not so alone anymore
Aww I’m sorry to hear that you know what it is like too it is truly so awful!! And feeling it get worse is such a disheartening feeling. I agree that knowing that others know what you are going through helps and make you feel less alone. I wish you the best and truly hope you are able to find something that helps you.
I feel like the only person in the world that got severe Gastroparesis and GAINED weight. I hate it that someone else had to experience that too but it’s nice to know I’m not alone.
im not too sure if i have gastroparesis but I went quite a while with very high blod sugar because my diabetes went unnoticed and I have pain all the time after eating, i throw up a lot more than normal people and I feel nauseous 24/7. I'm just watching lots of other's experiences to maybe compare. I''m calling my doctor on monday to get it checked out haha.. but thank you for being open about your gastroparesis, it must be hard to open up about such a personal part of you life wish you all the best
Im so sorry you go through this. May God bless you and keep you well 💚 You are so courageous. This video was very well made. You explain things so well
Thank you so much. I am so sorry to hear that you are having similar issues. Living with these issues does hurt and I will be thinking of you and wishing you all the best.
Im 24 years old, underweighted and still undiagnosed. Be grateful to be lucky with good doctors, cause in other hand they dont care and tell you you have it in head...
This is powerful. Thank you so much for making this. I only have a mild case op GP, but combined with severe dysautonomia/POTS still leaves me bedridden most days . Sometimes I wonder what is worse, the illness or the medical gaslighting.
I think I've had this for years. I had gallbladder removed and possible damage to Vegas nerve. It not all the time I get these episodes but when I eat too much. I end up with a swollen stomach and vomiting it up in 8-10 hours. During those hours I'm in severe pain. If I eat foods of too many ingredients tacos, burritos, etc. I camt imagine what you are going through if, this, is a daily basis.
Thank you so much for this! I was just diagnosed this weekend…If you don’t mind could you please share the name of your amazing doctor? I feel so lost right now…Sending lots of love 💕
I was just diagnosed with this but I have been suffering from it for over a year I’ve lost over 100 pounds I am 5 foot eight and I weigh 119 pounds my hair is falling out my teeth are loose and I can’t think straight I’m exhausted I am so hungry I am going to be 57 in November that’s if I make it I’ve been hospitalized twice for it and I’m sure it should’ve been more however I’ve been out of work for two years because I have work injury I’m not recovering from that surgery the way I should because of this disease I am not getting the nutrients I need to heal the way I should I don’t have enough money to buy the ensure that I need to at least get some calories in lately I have not been able to eat at all I was released from the hospital two weeks ago still trying to get some insure trying to get Iowa total care to pay for it or at least help me out I’m all by myself I have no one I’ve been divorced for four years now was in a very long marriage and it was an abusive one and now this is happening to me and nobody cares because they don’t know what it is my son told me I wish I had my fat mom back because skinny mom he’s too skinny and looks sick like she has aids and dying my son is 34 years old the words he uses to describe the situation funny anyway I am trying to get help and there is no one there to help the social worker at Iowa total care instead of doing her job she decided to call the police and tell the police that I was drunk and on drugs and threatening to harm myself I’ll because I reported her for not helping me out with this situation every time I talk to her she yells at me and tells me that I am putting up roadblocks how am I putting up roadblocks when I couldn’t remember my doctors phone number is this woman has all this information she is a social worker that is supposed to be assigned to my case therefore she has all of my medical records along with my doctors phone number two weeks now still nothing she came back with you need to get your doctor to do such and such I said no you need to get my doctor to do that after all you are my advocate because I cannot do this on my own that’s why you were assigned to my case so the police came knocking at my door thinking that I was on drugs intoxicated and trying to harm myself wow all because of some lazy lazy nurse that did not want to do their job over two weeks still nothing still haven’t gotten the ensure but I didn’t get was a knock at the door from the police he says you’re clearly not intoxicated or on drugs and you’re not trying to hurt yourself you’re just trying to get someone to help you save your own life and he asked if he could take me to the hospital so I could get some nourishment and I said no that’s OK I will have my friend next-door do it last thing I want is more attention to myself anyway just needed you to hear my story and thank you for posting these videos it helps a lot!!
I’m having a bad hypoglycemia rn or whatever I haven’t been able to eat today at all because of my gastroparesis I have had gastroparesis since I was 16 and now I’m almost 21 in august I can’t with this illness anymore but I’m pushing threw it hoping I can have gastric bypass surgery this year for my wieght and my gastroparesis and yes the crunchy dissolveable snacks baby food are my best friend and I also eat smoothies a lot
I am sorry to hear that you are having a rough day. It sounds like you have been going through this illness for quite a long time, I am so sorry it is really exhausting. I hope you can get the surgery and it is able to help relieve some of your symptoms!
@@KennaKrueger thank you I know u know that a surgery helps cause I heard u had a surgery also that helped some of ur symptoms any advice I know it’s not the same surgery but any advice
I'm a guy who developed this from an experimental medication victoza, I can't believe people don't know about this more. Or have a bit more empathy to people with this. It's soul crushing. Wait who is the doctor that knows their stuff!?!? I need a name, please!!!
The truth is if people haven't experienced it they don't understand. It doesn't matter which immuno disease and there are many and far too many to know. Nobody regardless of empathy can really get it, and to top it off, most people don't have very much empathy. All too often we are self centered, I like to think us with such problems have more empathy and probably it's true, however we don't know all the diseases people face and it's not a paying job to learn so I write it off as ignorance of the problems and for they lucky ones with perfect health probably willful ignorance and not their problem, sounds cold but I believe it's just honest truth, sometimes the truth isn't glamorous.
Thanks so much for sharing so much in this video! I can relate to a lot of this. I have digestive motility issues, fainting, fatigue, and a lot of other stuff from having hypermobile type Ehlers Danlos syndrome. Was it something like Domperidone that caused the lactation? I can't have drugs like that, due to my endocrine issues and adverse reactions to them in the past. My dysmotility, fainting, and fatigue are being managed with Mestinon, which is an old medication and a new treatment option for gastroparesis.
You are so welcome! Aww I know about all those conditions and they sound so rough to go through. And yes it was the domperidone that caused the lactation. I stopped it shortly after that side effect happened and plus it stopped working for me anyways. I am so happy that you have found a medication that is helping you manage everything!
@@KennaKrueger Another one of my friends is struggling with the Domperidone as well, with the lactating and it not reliably working anymore. Have they tried you on Mestinon yet? It's an old medication, but a new option to treat gastoparesis. It can also help to reduce muscle weakness and fatigue. None of the side effects of Domperidone, which is nice. Mestinon works by stimulating the parasympathetic nervous system and vagus nerve, which are both in charge of digestion and moving things through the digestive tract.
Aww I am so sorry your friend is going through that as well! And no I haven’t tried it yet, I am currently waiting on an appointment with a new doctor my current doctor referred me to
Try going gluten free it has helped me a ton and i cant take any meds for my gastropareses (im allergic with everything) , going gluten free is the first bit of relief i have gotten, even if just a little.
This was an incredible video. I was diagnosed with Gastroparesis a few years ago. I was sick for months before I was properly diagnosed. I don't know what was worse...the symptoms or the fact that my family thought I was purposely making myself sick and vomit. Over the past few years, I've met with 3 dieticians to help me figure out a GP friendly meal plan and none of them fully understood that I cannot eat 3 meals and snacks a day. I finally stopped listening to other people and started listening to my body. I transitioned to a liquid diet and my symptoms are so much better. I drink protein shakes, I juice, and I puree soups. I've found that if I eat 1/4th- 1/2 cup of pureed soup at a time, I don't get the stomach cramps or nausea. I also discovered if you make vanilla pudding and add 1/2 dry cake mix to it, it tastes just like cake! I add a little more milk than the pudding box suggests so it's not as thick, and it's perfect😂 I had to get creative with food lol. I also take a liquid multivitamin, liquid iron, liquid collagen/biotin and b-12 drops for energy. Liquid supplements are so much better than pills since it absorbs faster. I wish you health and happiness!
Aww thank you so much! I am so sorry to hear that your family didn't believe you. This condition is so tough and a strong support system makes it much more bearable. I so agree with you that the best diet we can give ourselves is just us listening to our body and figuring what it needs not necessarily what the textbook gastroparesis diet tells us to eat. We are all so different and tolerate different foods better than others. I am honestly so impressed you are sticking to a liquid diet! I know that would probably help my symptoms a little more but it is sooo hard. Wow that pudding/cake mix thing is so creative, I never thought of that. Getting creative with foods is definitely a must. I am taking vitamins in a pill form right now but should probably look into liquid vitamins to help with absorption. Thank you so much for your comment and I too wish you health and happiness!
This really helped my emotions... It took until I am 26. I just got diagnosed this year in 2022. I always thought my ulcerative colitis was causing this and it wasn't. I have been dealing with this for so long without a label. I am trying so hard and barely able to eat. I am afraid of the inevitable. I am barely making it through school and have to make though decisions. How do you get through college with this? I am afraid that I might not make it. Do you have any way you can help?
@Kenna K I have the symptoms and it feels like food goes to my intestines super fast and I get diarrhea, nausea, and there are sometimes I can't keep solid food down at times but then most times I can tolerate food but there is weeks at a time where I can only drink ensure and drink it real slow? Is that Gastroparesis? My GI doctor wants me to do a barium swallow test. I'm scared I will throw it up
I’m just now seeing this but my pots specialist believes I have gastroparesis and I have emetephobia as well and it sucks having to feel so naseous all the time while constantly worrying about throwing up
Thank you for you video. My 13 yo EDS boy is with all the symptoms now. But, as nausea, vomiting after little food and feeling full after a few bites, pain, all these symptoms are the same in gastric cancer, how can you tell the difference? Where in your stomach do you feel the pain?
Noone will truly understand what people with gp goes through its very tiring annoying vomiting and nausea and the lose of weight right now I'm about 90lbs
Sooo I am pretty nervous to put this video out there because it is very raw, real, and emotional, but I really wanted to create a video to show and explain what suffering with gastroparesis is really like.
To those watching who have gastroparesis, or another GI condition, you are an absolute freaking warrior. Going through something like this everyday is not an easy task. Lately my health has not been the best and I am so so tired because I haven’t been able to get my nutrients in, and I just empathize with you all so much. Keep fighting, you are not alone and we can get through this!
To those watching this who do not have a GI condition, thank you. Thank you for taking the time and effort to try to learn and understand what it is like to live with a crippling GI condition. The world is a better place with your knowledge and understanding. It means the world to me (and a whole bunch others) that you would take time out of your day to watch this.
Whoever you are watching this, I hope this video helped you or impacted you in some way. You are all beautiful people and can accomplish anything you set your mind to.
I love you all and thank you so much for watching. Feel free to comment anything or share part of your story.
So glad you did. For the first time ever I broke down and sobbed because I can totally relate. This is my life, my sadness, my hopelessness. I feel less alone. I feel more sane because we are in this together. I totally had a breakdown from this, but I needed it. If only we could all get together and eat nothing and just be like a support group and hug each other and hold each other up. :) TY
@@goombakisses7398 aww it always breaks my heart when someone says they can relate because this is such a sucky thing to be able to relate to because it is so hard. And sometimes we need a good cry to fully feel all those emotions because I feel like we suppress them for awhile. You are not alone, we are all in this together!
What an interesting heartfelt video...
PLEASE TELL ME WHAT THE DOCTOR DID FOR YOU THAT HELPED YOU SO MUCH!!! PLEASE!! I WATCHED THIS AND IT WAS LIKE MY DAUGHTER WAS TALKING AND SAYING WHAT YOU ARE VERBATIM!!!😢😢😭😭😭🙏🙏🙏🙏💔💔💔💔
ANY INFO PLEASE!!!
IM SO SORRY YOU'RE DEALING WITH THIS CRUEL DISEASE!! IT IS TRULY HORRIBLE!!!! THANK YOU FOR SHARING!!❤️❤️❤️✌🏼
what caused it to happen?
I’ve had gastroparisis about 15 years ago. It has gotten worse over time and I had a stimulator placed a couple years ago. Last month I gave in and let them put a feeding tube into my intestines. I now live 16-20 hours even single day pumping nutrients into my body.
I would never wish this on anyone
I’ve never related to a video more in my life. Thank you
It’s heartbreaking to hear that you relate to this but just know that you are not alone and you are strong and we can get through this together💚
I did not expect to cry watching this. The struggle between the 24/7 nausea and emetophobia is the absolute worst. Thank you so much for making this and allow people like me feel less alone. I hope you are doing good and never lose hope🙏🏻 We got this!
This just made me cry thank you. I have been drug tested before multiple times in the ER. For my seizures and for my Gastroparesis. I had a CBD gummy for anxiety just before the ER once that slightly elevated my Marijuana marker in the test and the ER doctor sent me home saying that my seizure was “Because I got too high” despite it being CBD and not THC and I was not in any way high. Despite the fact I broke out in a rash and my seizure lasted more than an hour. Despite the I hadn’t eaten a week because my Gastroparesis. I had about 9 long and painful seizures, barely any ability to eat, and 3 ambulance rides before they finally admitted me to the hospital. And honestly this video really made it sink in how absolutely messed up that was. My blood sugar was about 30 and I was extremely dehydrated in the hospital. I wasn’t diagnosed with Gastroparesis yet. They continued to over hype the fact that I have a history of anxiety and forced me to see a psychiatrist in the hospital. I am so glad my family helped me advocate for myself and make it so it wasn’t for nothing cause it lead to me getting POTS and Severe Gastroparesis diagnosed. I’m still fighting for treatment beyond nausea meds and IV Therapy but it’s RUclipsrs like you who help encourage me to keep fighting.
They haven’t taken my inability to eat seriously because I am overweight due to medications. I’m really sick of feeling so frail an my medical notes from GI doctors say I like “well nourished”.
And the bed thing with your boyfriend hit me in the feels. My immediate family members have all accidentally touched my vomit and I hate that that is a thing. My Husband has had to clean up my urine during seizures, help me change when I’ve puked on myself, been in the room helping me through a hospital enema…. People honestly have no idea how dehumanizing it can be.
@@samrobinson5130I had the same they gave me pills and I would gain weight even when I was only eating less than 500calories a day...problem was I would also have to throw up a lot it was a terrible time 😢
Wow…. I don’t have any words 😔 I just started to learn about this disease, and It BREAKS my heart to see this happening to people, and without any real cure for it.
Thank you for sharing your story! You are such a beautiful, and strong woman! You are also SO blessed to have such an amazing husband🙌🏻 It was beautiful to see you document the little moments with each other in the video. Having the support and love you have is incredible!
I’m so happy to see that that surgery has helped improve your life! Praise God!🙏🏻
I will be keeping you, and the many others fighting this disease in my prayers🩷
This video left me in tears. As someone who also spent a lot of time in the hospital, it is truly inspirational to see how strong of a person you are and how amazing you and your boyfriend's relationship is. Thank you for sharing!! ♥️
aww🥺🥺 you are so sweet and I hope you are doing okay! Thank you so so much for your support and I truly did get so lucky with my boyfriend❤️
as someone who was diagnosed with Gastroparesis and Eosinphilic Esophagitis a few years ago, this video really hit home. Proud of you, I hope your doing better
I just shared this video with my friends and family. I've been diagnosed with gastroparesis since late 2020 and I haven't been able to express the toll it has taken on me as well as you have expressed it in this video. Thank you. ❤
I have severe EDS and gastroparesis, I just got a feeding tube and I think that this video is really helpful! I only found your channel today but I already love it!
Thank you so much for making this!!!! Such a real look into what we all deal with daily! I relate to every single thing you said, especially the emetophobia! You are so strong 💚
Aww you’re welcome! I really wanted to create this video to help show people what it is like to go through this on a daily basis so I am so glad I was able to do that. And omg the emetophobia it’s awfulll and you are just as strong💚
@@KennaKrueger There's just about nothing worse than the constant feeling of nausea and the vomiting associated with it...even if nothing comes out of it the feeling of constant retching is terrible and uncomfortable and that you never get a break from it when your stomach is so upset.
Yesterday I had a terrible bout of nausea and vomiting that lasted for a couple of hours and what was worse about it was that nothing,not even zofran could touch it....fortunately it only lasted a few hours and knock on wood I'm feeling better today so far.
This made me cry so much , I cannot explain how accurate this is , you literally explained my whole life
Thank you so much for creating this video to share your true self with the world and to help others who may be going through something similar to relate. You’re my and their hero 🙌🏻
You’re so strong and so brave and it makes me the happiest person to see you grow so much and bright so much love into the world despite all you had to endure. You’re an angel. I love you!!! ❤️
you are the absolute sweetest🥺 you are my hero❤️ thank you so so much for your endless support through all of this and inspiring me every single day. I love you so so much❤️
I'm sorry you had to go through all that and still suffer, I'm about to take a gastric emptying test in about a week to confirm gastroparesis. Thank you for being so very brave by posting this video with all the good and the bad of what it is like to live with this condition. 💜
This really does describes life with this awful condition. I feel like the only 30 year old male in the world with idiopathic GP. My symptoms are similar to yours, however, luckily I don't have the malnourishment or bloating. I too have a complete phobia of throwing up and no matter how nauseated I get I just can't do it. Luckily, I am still able to eat somewhat enough for my smaller body type. There are many days where I just don't want to go on. Its so unfair . Like you, I continually question why me? what did I do? I otherwise would have had the perfect life, not wanting for anything. Thanks for your candid and true depiction of what this F**king illness is. I had botox done which didn't help and I have consulted wth a Dr about GPOEM and he didn't think it would be worth the risk completing the procedure on me. I feel like there is no other options and nowhere else to turn.
It must be really isolating being a male with this condition. I know the majority of people with gastroparesis are female and the focus is mostly on them. I would recommend trying to find other males who have this condition if you haven't already and connect with them! While it doesn't make the physical symptoms better, it does feel less isolating which can be helpful. It often does seem unfair but I try most of the time to believe that this happened to me for a reason and to figure out what good I can contribute into this world with this illness. It is not always easy and I am not always successful at that but sometimes it really does just help to share your story. You are very welcome for this depiction. I truly wanted to show what it was like to live with this condition. I personally never got botox but the GPOEM has helped me significantly with my stomach (but now I think my intestines are slowing down causing issues), but if you feel lost and don't know what else to do, don't be afraid to get a second opinion. I had to see multiple doctors before finding one that would actually listen to me and get me a treatment that is best for me. Keep fighting and find a community and someone who will give you the best treatment! Thank you again for sharing part of your story!
Sorry you have that. I am also a male with digestive motility issues. Mine are caused by having hypermobile type Ehlers Danlos syndrome.
Have they tried you on Mestinon yet for your gastroparesis? It's an older medication, but it has emerged as a new treatment option for gastroparesis and intestinal dysmotility.
Men don’t have gastroparesis FYI u where misdiagnosed unfortunately!!!
How r u?
@@elliebee08 how i am a male and i have been diagnosed with gastroparesis i had 18% left after 4 hours
You're video brought me to tears because I have so many chronic illnesses and have been told I just have IBS and Diverticulosis and literally am about to go talk to my boyfriend about my symptoms because he doesn't understand why I have to take so many pills and it upsets me but your video rang true to me I've been told so much of what you said by doctors and it just kills me on the inside to this day because they still are saying it.
This is incredibly beautiful- exactly what I feel and think all the time, I couldn’t have put it more perfectly myself!
Thank you so so much for sharing this & spreading awareness for our disorder 💗
awww omg thank you so so much💚💚 I am so happy that I can be a voice for others with this condition because I always wish there would be a way to show others what it was like living with this disorder when I was super sick but could never quite articulate it. Thank you so much again and I am sending you all my best wishes💚💚
Today is the first day I've ever heard this noun that describes what I've suffered with my whole life, along with gallbladder disease and gastroparesis: Emetophobia: extreme fear of vomiting. One counselor acknowledged it back in the day, but gave me no name for it.
Yes that is what it’s called! Luckily mine isn’t as bad anymore since I was a nurse for a little bit and was exposed to it a lotttt but definitely still there a little
It is an honor to recieve your vulnerability and your strength. Thank you for giving others, myself included, a voice to how we feel living with GP
I was brought to tears watching this. I am 18 and got diagnosed a little over a year ago after going to the doctor for 3 years and them recommending me to therapist after therapist saying I had anxiety. I recently got access to my blood test results and have had the markers of malnutrition since January 2018. Since my diagnosis I've gotten two endoscopys with botox. I've gone several days without eating and called the hospital to be met with "try taking all your meds and then eating". The part about sitting in the shower, bruising easily, and staying in because there is going to be food wherever you go. My last botox just wore off and I have been dealing with the fact that I can't eat anymore and they can't perform the procedure again. I've been looking up how everyone else has been dealing with this disease. This helped so much and you described everything perfectly, thank you!
This was so beautiful and authentic. I can’t thank you enough for all the awareness you spread and for sharing your story. Sometimes it’s hard to see the bright side of all of this but you do a damn good job at it. Keep fighting the good fight, know that we love you, and please say a prayer for me tonight because I’m on 4 laxatives and haven’t had any success in two weeks😅
Thank you so so much❤️❤️ it is so so hard to see the bright side sometimes but I try to have as much hope as I can and sometimes you just need a good cry and full day of pity. It’s important to take time for yourself, as much time as you need because life is hard, especially with this. You keep fighting too, I am right along there with you!
Omg I’ll definitely being saying a prayer for you because I’ve been in that position multiple times and it is such a scary gamble😅😅
This is currently my journey…you are completely explaining my life. I am scheduled for NG/J tube placement tomorrow and I have no idea what lies ahead. Thank you for posting ❤
I’m watching as I’m currently going under an investigation to see if I have this or another similar problem,I have so much respect for you.
I’m also scared of getting conformation of what I’ve got,I don’t know how it will affect my mental health or my diabetes.
I literally cry after watching this video, I’ve been suffering with gastroparesis for the last seven years of my life and it’s completely destroyed me I live in New York City, and I can’t even work or even take care of myself. I became homeless because I was unable to pay bills or do things for myself. I’m on the verge of getting a surgery called a subtotal gastroenterology procedure. I have no idea if it’s really going to help me. But at this point, I’m willing to try anything to get my life together. but I honestly do feel and agree that most people that do not suffer with this disease truly do not understand what we go through and that it’s beyond medication. Nothing you do helps I would like to know the name of the procedure you got to see how it helped you.
Thank you 🙏 I relate so much to this constant nausea had it for 20 years and this video I the first ever I am really relating to because you explain your feelings so well! You’re angel for making this video !take care!
Thank you for this video. I hate that you're struggling so much. I have severe emetophobia and would rather lose a leg than feel sick. Gastroparesis is an illness that im so terrified of getting. I don't think i could continue to live. Thank you for showing this.
I suffer from disphasia. Thank you for this encouragement. I love you.
I am also fellow GP warrior and couldn’t help but cry this entire video. You did an amazing job at summarizing GP, how if affects us, what is has taken, and what it has not. Thank you so much. You’re inspirational.
aww thank you so much for this comment it means so so much to me. So sorry that you also know what this all feels like but we are strong and can get through this together💚
10 minutes in, im in tears cause all this is so relative, I have lived with it for over 10 years...
Im 32 years old. I became a type 1 diabetic at 25 years old. I did not take care of myself. Im not gonna lie i was about 190lbs 5'10 thew up blood for 3 weeks and dropped 50lbs. They explained to me that i was diabetic and it would be forever and i did minimal research and got insurance and my first monthly supply of insulin. I met a women 4 years ago the age of 28, before i met her, during and after i smoked, drank and did drugs. I stopped doing drugs at the age of 30 so did she. I stopped drinking at 31, not sure what happened. They say uncontrolled blood sugar levels cause gastroparesis. I was doing better than i ever had but it was too late. I ended finding myself having massive weight loss and appetite loss without really noticing. I couldnt walk bare footed to the bathroom, cause my feet would hurt so badly. My legs from my butt down to the toes hurt and i mean badly. Couldnt barely touch them let alone walk. I couldnt get help for almost a year after seeing all different types of doctors. Did the tracer test, found out i had gastroparesis and tbh atleast i know now. Ive been diagnosed for about 3 months. But have had it for a year now.this video touched my heart. Cried the entire time, its honestly terrible. I thank god everyday for my girlfriend, she goes through so much with me and she has never once even complained. I wish all of you kings and queens the best life you can have and all i want to say is god bless you and take your diabetes seriously before you have this happen to you. I was naive and thought because i looked and felt healthy that i was. Diabetes is an everyday upkeep that even if you feel okay, please i beg you. Go the extra mile and take extra care of yourself because just like type 1 diabetes u can wake up 1 day and this can happen to you. Stay safe everyone
Wow, this video is so powerful and so well done. Living with your fear daily is so tough to do. It is so tough to do normal things when you feel sick all the time.
I too got so nauseous all the time that watching something would become too much. I also lost 20 lbs and become severely underweight. I too had the pouch of medicine with oils, pepto, gas-x, tums, Zofran. And I couldn’t leave the house without it.
Showering was impossible somedays. Eating was impossible somedays. Trying to walk from point A to point B felt impossible. Never wanting to leave the house because you feel awful or you don’t want to feel awful when you get out. Walking around the grocery store felt impossible. Going to target or the mall only to feel so sick half way through and just wanting to be home.
Never feeling hunger or thirst. Never feeling peace and bliss after a meal- even though all you ate was a small amount of mashed potatoes or dry cereal. Knowing you NEED to eat more yet it’s impossible to do so.
Going to the GI doctor and not getting any tests done and getting told “it’s just acid reflux. Change your diet” when you’ve cut out EVERYTHING already. And the “are you sure you aren’t pregnant?”
And “it’s probably just IBS. you will need to figure out how to deal with it” and “it might be gastritis. Take this medicine for the rest of your life”
This being said, I never had gastroparesis. Instead, I had an overactive gallbladder which was only revealed via HIDA scan. I have had surgery and am SO much better now.
If you are watching this video, PLEASE advocate for your health at the doctor. Bring someone with you for support if possible. Push for answers. You will find some!! You will find a better way to live.
Kenna, you have created such a beautiful support system through these videos that many will be so thankful for, including myself. Thank you.
wow thank you so so much for writing this out. I literally felt all of these things you talked about as well and I know so many other people do so your response will also help so many people.
The walking from point A to point B sometimes was so so rough and I can’t even tell you how many times my boyfriend looked at me trying to make it through the grocery store and was like let’s just go home and get you in bed I will go get the groceries later because the nausea was just overwhelming but I wanted to come along and try to be normal because I love grocery shopping. And the ride home then is awfulll because feeling sick in the car is a terrible feeling.
The never feeling peace or bliss after a meal is also so difficult. This is something I am still struggling with now because of the bloating. I often sit and wonder how people just eat and not feel like death afterwards and why I can’t feel like that. I have a constant battle with myself everyday trying to convince myself to eat something even though I know I am just going to have to spend the rest of the day in bed.
Dealing with GI doctors is probably the hardest, because a lot of them have a tendency to invalidate you and make you feel like you are just over exaggerating everything. Omg I forgot about the “are you sure you aren’t pregnant” one. I have gotten that every single time.
And even though you didn’t have Gastroparesis, you felt all of this and experienced all of this pain and it is valid. You have gone through so much of this pain. I am so so excited to hear that you are so much better and I am so happy to see that you are still empathizing with others who are going through similar situations because it helps so much.
Yes please advocate for yourself and bring support. I would not have gotten the care I need without my boyfriend being my advocate! I was too sick and emotional at doctors appointments to speak up for myself so my boyfriend had to fight for my care and he is what got me the help I needed. But keep fighting for what you deserve!
Thank you so much for all of your support and kind words. Your support is what pushes me to go out of my comfort zone and create these videos. Thank you so so much💚
Kenna K. Here’s a funny story about the “are you sure you aren’t pregnant?”
After seeing like 5 doctors within 2 months and each of them making me do a pregnancy urine test, they all finally believed me when the tests came back negative. Keep in mind, if the test came back positive, I would literally be the Virgin Mary 2.0! So I was very confident I was NOT pregnant.
1 hour before my gallbladder surgery, they make you do another urine pregnancy test “just to make sure”. I understand it’s protocol.
Well. 1 hour before surgery, my pregnancy test came back POSITIVE.
Doctor: we see a very very faint line on your test...it says positive.
Me: WHAT. HOW do I explain without looking CRAZY that it’s physically impossible for that to positive
Doctor: are you sure you didn’t have a miscarriage?
Me: uuuuuhhhhh yeah I’m sure!
Doctor: well we can take some blood to see if you are really pregnant or not.
So I’m FREAKING OUT thinking “my surgery is gonna get canceled 1 hour before because I’m the Virgin Mary...”
Blood test comes back. Nope! Not pregnant! False alarm!
@@kristinefish9806 omggg i love this story!! I swear they never believe you no matter how many times you say it's not possible haha
Omg a false positive?? that is so crazy, i would be the person to somehow convince myself that i am pregnant even though i know i am not but i am glad that they tested you again so you could get the surgery!
Thank you for the great video Kenna!
I was extremely sick for months (or likely even longer, but my condition wasn't so severe that I was concerned). I lost 16lbs in only a couple of weeks, and was drastically dropping.
After spending a month in the hospital, and having many tests, X-rays, ultrasounds, various scans, endoscopy, colonoscopy, and finally a gastric emptying test, I was then diagnosed with gastroparesis.
I spent a month in the hospital trying to find a medication that would help me. Nothing worked for me. They tried a procedure to stretch my pylorus and then inject Botox to relax things. That didn't work either.
So, my last resort was to have a GJ tube inserted. I am getting adjusted to getting all my nutrients via my feeding tube, I haven't been able to consume food orally at all. I can finally manage to have about 50-100ml of fluids now (coffee, tea, juice) which is a nice start.
The nausea and vomiting are constant, and I am grateful for the odd day that I can say I've been nausea free! It's a rarity these days though. I'm hoping things settle down, but I understand that's a part of this horrible condition. Gravol, Zofran, and peppermints are my lifesavers these days.
This has been very life changing for me. I have always had an active lifestyle, and things came to an abrupt halt for me.
Your video showed me that I am not alone in this new journey, and that there are many others suffering what I am going through. It helped me realize that my symptoms are just a part of 'a day in the life of gastroparesis'. Like you, I will adapt and adjust to this condition, and not let it take my life!
We are warriors, we are strong, we will survive!
Thank you for the video, and I look forward to following your journey with you and learning more about gastroparesis through your videos. 🙏
Thank you for this video ❤ made me feel less alone even 3 years later.
Thank you for putting into words what my 16yr old has been feeling like. We highly suspect she’s been suffering from Gastroparesis for the last 3yrs. And it wasn’t until I found your videos of you sharing your story…that I felt like I could understand & grasp what she has been experiencing…So…THANK YOU!
We are meeting with GI in a few days & we are praying for this as the answer. (Not that we want Gastroparesis but just to have answers for all her struggling.) But after a 12lb weight loss in less then a week…it’s time to get to the bottom of all this.
Any ways…all this to say Thank You for being brave enough to share your story & allowing my daughter to not feel alone.
I feel like you're telling my story. I tried to keep it from family and friends. I started posting about it I was nervous at first but it's time to everyone knows about us. Your boyfriend is amazing .
I absolutly love this video, i feel like i can relate to it so much but with different symtoms. I have suffered from severe gerd for 5 years and no medication or clean diet helps, even water comes back up. I have to sleep extremly elevated or else i wake up choking on my vomit, even if i wait 6 hours upright before i go to bed, but the heartburn is always there even sitting and standing up. 24/7, it never goes away. I had some tests done and everything came back fine but my gastro doesnt believe its as bad as i say it is and that just makes me so frustrated and cry because i know theres something wrong. I desperatly want a gastric emptying test. I love all your videos im glad i found your channel 🥰
I always get so sad when I hear that others can relate but I just want to know that you are not alone and all of your feelings are valid! I personally never had much experience with GERD but that sounds awful to live with and I find it especially hard when you do everything right and eat as clean as you can and your body still doesn't cooperate and you are still sick. It is so unfair! You are so incredibly strong and all of your symptoms still exist and still effect you even if a test doesn't validate it. The tests aren't 100% accurate and you know how you feel best. Keep fighting and advocating for your health and find someone who will listen and give you the tests and treatments you need. You got this!!
Sorry you experience all that. Definitely get a second opinion or switch doctors. Keep at it until your get the gastric emptying test! I used to wake upnchoking on stomach acid as well, and it's very disturbing.
Mestinon is what ended up fixing my digestive motility issues. It's an old medication which has emerged as a new treatment option for digestive dysmotility.
I would definitely get a second opinion. My Dr put me on Dexilant. It made a huge difference. I too was having GERD so bad that I would wake up throwing up in my mouth choking trying to breathe and that was elevating my head at night. I am now on it twice a day because of my symptoms of the gastroparesis changing but it still is the best by far. I am on other medications for spasms and nausea but it would be worth looking into to. Hope this helps.
I found this video at the beginning of my health crash. It gave me someone to relate to. Someone who made me feel like I wasn’t alone. Someone that gave me hope. I’ve come back to this and I’ve sobbed the whole video. I’ve never realized just how much I bottle my feelings and completely numb myself until I’ve had to face them. I go to therapy but can’t think of what to talk about even though I know it’s there. I lost a year of my life. I was so malnourished that I don’t have memories. On my birthday I couldn’t eat my special birthday dinner. I was hospitalized a week later. I still remember my first tube feeds. The feeling of my empty stomach filling up with the barest amount of formula still haunts me. I’m not ok. This illness has taken everything from me. I try to be strong but I’m not. Those bottled up feelings manifest as anger towards my family. I find myself so short tempered that my dog eating my little amount of candy or my door being left open to send me into a sobbing rage. I hate being like this but I can’t fix it. I want my life back. I want to be my normal healthy self i was. But I’m here. I’m not dying but I’m not better.
Thanku so much for having the strength and courage to make this video
You are so brave!!! An inspiration!!!! Thank you for taking the time to explain this so very well…I cried from start to end…I just had my second specialist GI apt for GP and was told by the doctor that until I loose a massive amount of weight there is nothing to be done because I am allergic to the mobility medications and all nausea meds (except for phenergan)….but when I “look like the starving kids on TV”….that’s when he said he would help me….despite me being on daily steroids because I have Addison’s disease….I also have severe psoriasis….(like being in the burn unit for weeks during a flare kind of severe psoriasis) the last year of life has been just tears and vomiting and pure loneliness….I am thankful I was blessed with an amazing man as well….we met and fell in love very fast in 2008…six months later I got sick and spent months in the hospital from a surgery gone bad and there he was….staying with me every second he could….he would make sure our three kids had everything they needed back home then would drive and hour to the hospital to sleep on a chair bed beside me…..that kind of love rarely comes around….13 years later and he is still that same person….(we have more photos of us in hospitals than at home-but the love is real)….again I want to thank you for making this video….I want to share it with my friends and family who believe the big lie that I tell them….you know….the “ I’m okay” lie….just like you said perfectly you said the big “I’m okay to not bother others”….I do that a lot too….I think all of us chronically sick people do….I hope you don’t mind me sharing your video as a means of real education that I can’t seem to convey well💚
I’m suffering now just found out after three years!!! Thank u for this
Thank u for sharing this story with us. I feel like it might help people understand us finally. I have just started losing weight and I am scared 😨.
I apologize for writing so much, I just keep listening to more and I am so happy you also see the positives in your life, your husband is awesome and it takes a real man to do what he has. It's not just your disease but his too, he owned it and I know it had to be tough, I am quite positive that the struggle bonded you both for life. I believe we do sometimes not understand what the other person is dealing with and how they suffer, even if it's just feeling guilty because he can't fix you, because you can be sure he would give anything to make your world better. It affects people that love us in different ways, they feel guilty, angry because they can't change it, they may not even understand what you need from them, yes their quality of life suffers for different reasons, but primarily because they feel helpess to help the person they love so damn much. I am really happy to have been able to cheat and see that things have mostly turned out well for you both, that you guys got married for better or worse, through good times and more importantly bad times. He could of ran away in terror but love won and I personally admire your husband for being such a wonderful person, but understand you are too, you tried to shield him as much as possible and in the video you both admitted doing the wrong thing, rather than accept it I guess there was a sense of avoiding it, which made it harder for both of you. I really haven't talked about my illness for the same reasons you didn't as well I felt in comparison to so many my disease was just so small on rhe grand scale how dare I complain. I still feel this way because I have learned of so many diseases like yours and worse and some not as bad but more than mine, it's just a realization that I could have it so much worse, of course I could have itbso much better, but that frame of mind gets into a pity party and I don't want to do that. 8 rather would accept my limitations and be grateful I didn't have something worse, and feel empathy for those that suffer far more than myself. I believe you understand me, probably many of us think like this and maybe thats what gives us the strength to carry on in a life that many times makes you wonder why ❤
omg i have gastroparesis and i have emetaphobia as well and i never knew someone else who did so i feel so much less alone. I'm so sorry you've had to experience this, it's such a terrible illness.
Thank you for this information and reality. I was diagnosed with gastroparesis about two years ago. I also have chronic pancreatitis. The strange thing is I weight 340. I just recently started having more issues with the gastroparisis. The problems I had in the past we thought was from the pancreatitis like a lot of abdominal pain, severe nausea, cramping, diarrhea or constipation. Now we are leaning more towards the gasteoparesis. I have been hospitalized several times, my hair continues to fallout, my nails are very brittle, exhaustion all the time, and me constantly feeling like I should suck it up and do normal things. I don’t have the energy to do things that I think I should. There are times my family just doesn’t understand why I am so exhausted or that I just can’t do something all of a sudden. This disease hits at a moments notice. Right now, I can eat non fibrous stuff unless of my allergies to food which just since I have been diagnosed have been identified. The list is very long such as most all fruits and all nuts! The hospital trips are more frequent and seem harder to deal with now. I feel they sometimes think I am only there as a drug seeking person. Most of the time, it is because my meds are not working. I do eat small meals. Large meals even average will tear me up. I guess I’m getting used to what I can and can not have. My question is I understand there are stages, so I am just in an early stage? My Dr always says I am in a book all by myself that my symptoms and ways don’t go along with the normal. Has anyone heard of someone like me having these issues? Thank you again for your channel. 😅
Thank you for being brave and sharing this. I have a patient that comes to our hospital often and this has helped me to understand a bit more what she has to deal with.
It took 16 years for my diagnosis they said it's because I'm diabetic that it took so long. I have severe emetephobia as well I'm like seriously of course I'd get one of the chronic illnesses that has nausea and vomiting as the number one symptom. I am grateful that you were able to get the surgery and that you got 4.ogpa in nursing school! 💕
I was diagnosed with Gastroparisis and Elhers Danlos 4 years ago surgically placed feeding tube now changed out to a NG tube surgical tube being placed again soon 😢 much love girl gastroparisis warrior 💚 and I also have a HIGE fear and anxiety about throwing up it scares me so bad but no matter how much it happens it never gets better I have had so much dental work done due to the acids in my stomach coming into contact with my teeth 😢
@Kenna K. I have been recently diagnosed with gastroparesis and I am glad I found your channel .
I had a lot of symptoms years ago then I looked it up and that’s when I decided to see the gastroenterology doctor and said to be tested for gastropresis myself so they finally did a hidascan and found out that I had extremely slow emptying of the stomach when in fact of 2004 my cat scan showed food likely to retain food in stomach which nobody never ever mentioned gastropresis to me at all I was diagnosed back in 2014 I’ve had to follow a certain diet and completely lost so much weight it’s a struggle steal dealing with stomach issues I completely understand especially the nausea 😮
Wow what a great video ! I’ve seen a lot of videos on gastroparesis but this is probably the best one yet !Thank you!
Than you so much for this. Definitely needed this today.
Reasonable do much with this, safely. Here for you all and being with you all virtually through all of this.
Thanks for sharing. I'm nauseas all the time (started with 14 and now I'm 31) treated all the time like the crazy freak. Now I feel less isolated
Aww I am so sorry you have to deal with the nausea it is not fun!! You are definitely not a freak or alone in this!
If your pictures trigger anyone, then that's on them. I appreciate your courage just to tell your story, when I came looking I found your story and I fully understand your story is uniquely your own there are common threads that apply to far more than yourself. So thank you for sharing because I am 100 percent sure it's helped me better understand and for those dealing with the same issues, they know they are not alone. I understand you pretty well as my disease isn't the same as yours, regardless it applies, people think you look okay, they don't understand on the inside you are struggling just to survive and many people don't have a support system which is all the more hurtful. I came across this disease by chance and researched it because I was genuinely seeking to understand not just the scientific jargon that is void of humanity, but really understand how this affects a daily life, it's never nice and tidy like explained on Wikipedia or mayo clinic etc. those are just a basic explanation void of individual real world experience. Hearing someone living it really makes it hit home how devastating these illnesses are. You have done a great job documenting and helping others, I know to a degree how this goes, honestly I don't remember how it feels to be healthy, you fall 8nto a new normal, and that happens over and over as disease progresses. We already know there is no cure and we have to live within these new parameters, complaining fells useless and like it falls on deaf ears and people think we are just cry babies. I know the stigma and it's very real. I do believe your attitude taken does help you live better and I know how important it 8s to have someone that loves you and tries hard to understand and just be there when you feel weak or feel like giving up. Thank you for what you have done, I am sure you have helped far more people than you even know. I know that realizing my disease is nothing compared to others has humbled me and kept me from getting to much into a pity party and thankful I don't have something much worse, I can imagine most of us use that to face our disease understanding it could be so much worse. I stumbled onto another disease that contains yours and as if not bad enough they had to deal with their joints and ribs dislocating as if it was not bad enough here is some extra hell to endure, then there are even worse things that are not survivable like ALS which is more known and many less known lethal diseases, I see these and think to myself I have no right to complain, even against your disease, mine seems mild in comparison, yet it sucks too. I guess I am like most I don't speak of it typically, I just live it and do the best I can within my current limitations. So really your words hit home and I totally understand you. Different disease, yet loss of quality of life. How does one measure the loss of quality I have never figured out, I just know that all of it is bad and there are definitely levels of bad and most of us can pretty easily find something worse, that makes us feel lucky or at least thankful we don't have their level of torment. And to say they wished they had your disease to be skinny shows me the utter ignorance they have on such diseases. I really can't hardly believe someone would say that out loud. Be careful what you wish for, clearly they would repent such uterrings given a week or month of the suffering you have faced, probably even a single day. Yes people can be completely ignorant. My disease I can't eat often not for the reasons you did but my disease basically shutdown my metabolism almost completely, if I ate normal I would be incredibly obese, I go three or four days without eating and then just one meal because I don't burn it off, even not eating I lose weight incredibly slow, calories don't add up in my case. I can not eat in 4 days maybe lose a pound if I am lucky, however I do have issues with low blood sugar from such a eating regime, I have to watch for that too as low blood sugar can be far worse than high blood sugar. 8 don't mean to get into my issue, I just wanted you to know there are many of us with different diseases but the same reality, loss of quality of life, and you got yours even younger than myself, I tracked mine to around age 27 to 28 still in the prime of life but wow I feel mine is nothing as you truly were in prime time for life everything should of been great and nothing to worry about other than grades. Again thank you for sharing. You are truly very strong ❤️
You just explained my 18 year olds life 💕😞
I really admire the fact you have such a positive attitude. You and your boyfriend are so cute together.
I wish more people had watched this!
Aww thank you so much this means a lot to me!!
Recently just found your channel. I do not have GP, I have something called FAP, it’s a disease that causes thousands of polyps that will eventually turn to cancer. So 20 years ago I had my large intestine taken out. Things were great for just over 10 years. Then I started to have issues. Nausea, bloating, vomiting if I eat too much. Over the last 5 years I ate less and less. Losing about 65 pounds. Wasn’t trying to loose any. In that 5 years i had 5 abdominal surgeries and it was determined that I have a desmoid tumor, right where my stomach and small intestine meet. It’s causing a minor blockage. They can’t remove it for a few reasons. Got to the point last fall where I was losing 1/2 pound a day. They treated me like I have GP, put me on all the same treatments, diet, lifestyle and such. So in the spring I had a j tube placed. Best thing ever. Put on some weight, I’m now at a very healthy weight for me. Have energy again, and don’t feel like I’m 80 anymore. Still have some issues, but over all I feel amazing. Secretly I have wished I had GP, so many of my issues overlap. Then i could have a support system. But no one with my disease has the complications I do. It’s very rare. According to my dr, my tumor is strategically placed for maximum damage. I recognized the hospital gown in your video. And felt compelled to write this. I have been a patient at the Cleveland Clinic for over 20 years. All my abdominal surgeries have been done there. I travel from Michigan, because my condition is so rare, and my complications with this disease are even more rare. Anyway, thanks for sharing your story. Wish you all the best!
Hi Jeni! First off, I just want to say thank you so much for sharing your story. More people will become more aware of your condition now because of your comment and that is such a good thing! I have heard of FAP before but don't know too much about it, but it sounds quite frightening to have to go through especially having your colon removed, you are so strong! Going through all of the GI symptoms you had to experience for five years must have been so tough, especially with no answers. Those symptoms are so debilitating and hard to live with but I am so glad you kept fighting. I have actually never heard of a desmoid tumor before but I am so happy you shared. I am also happy to hear that you were able to get a feeding tube to help improve your quality of life. Having proper nutrition is soooo important and changes things drastically. I know on days where my symptoms are bad and I am struggling to eat, I am so so tired and can barely do anything. I hope the health issues you still have now stay the same or improve because you have been through so much already and deserve only good things! It must be so hard to not have a community with your issues because having other people going through the same experiences as you makes things a little better because you feel less alone. But just know that you are not alone, and that although it may not be gastroparesis, I still recognize you as GI warrior. You have fought through so much and are a very welcome member of our community. All of your health issues and whatever you are feeling is all valid and although I do not know exactly what you are experiencing, I will always do my best to learn, understand and empathize. I actually flew from Florida to Ohio to meet with my doctor because it was hard to find a doctor that truly understood my needs, but I am happy that Cleveland Clinic was able to help your incredibly rare condition and make things better for you. Thank you for sharing your story and I wish you nothing but the best!
Sorry for what you're going through. Does the metabolic approach of cancer offer any other approaches that could diminish your pain? Supposedly approaching cancer that way is offering many breakthroughs. Here's one place it's mentioned ruclips.net/video/Yyt3Do4w7fs/видео.html I'm sorry if it's not helpful at all to you.
@@KennaKrueger I have no idea how I missed your comment. Now I feel super rude for not replying for 2 years. Thank you for your very kind words. Yes the last 7 years have been very challenging mentally. With them not having answers, and little hope for a cure/great treatment plan. Bit I am incredibly blessed by my medical team at Cleveland, and chose to focus on that. I have continued to follow you on instagram. I have not been able to get anything from your shop, always sold out. I have been eying your sweatshirts, but I am not one to wear something that says I have an illness. I totally get that it creates awareness and I totally support that. For me, I don’t like to be reminded that I do have a chronic illness and don’t want to always talk about it. Yes I am an open book and those in my life know. But there is so much more to me than this. But if you did some positive quotes (something like chose to see the blessing, or choose joy) I would love to support you. I know that’s not totally your focus, so if you don’t chose to do anything along those lines I won’t be offended in any way. Will find something I can get at some point, when it doesn’t sell out! Lol
@@christopherpreciado7578 unfortunately in my situation it’s not an option at this point. But thank you so much for your comment.
Thankyou so so much… I am suffering sooo hard right now and don’t know what to do :( I really needed this and I’m so glad to see you having some relief !
This was so beautiful, well done! I related so much to this! I've had gastroparesis for years now and you nailed some of the feelings I've had. Oh the nausea, ginger chews, the fear of throwing up, the skinny comments, the doctor appointments, the pretending that you're fine, the um lactating haha. I actually just had the POP procedure done in Ohio a few months ago and while the nausea is a little better, I'm still hopeful that more can be done for all the GI discomfort. Keep sharing your story :)
Aww thank you so much that means a lot! I feel so bad that you also relate so much to this because it’s such a sad thing to relate too. Omg the lactating, probably one of the biggest surprises I had during this illness😂 I hope you continue to heal from the POP surgery and am also really hopeful that more can be done for the discomfort. Thank you again!
Amazing video and please continue not to bottle up your emotions. You are a strong warrior 💪 keep it up
Thank you so so much!!❤️
Thank you soooo much! That's literally just my situation! Im sooo tired too and today a doctor that didnt know about gastroparesis told me again its a psychosomatic thing when I know it isnt. It is officially diagnosed with a szintigrafie too and I probably have it since my late childhood but the nausea was always blamed on stress and food intolerances. The doctors visit today was so frustrating. Of course I was looking stressed and maybe anxious because I need to talk about really embarassing things with my digestion and because I simply cant eat..it was 4 pm and i still had the food from the day before in my stomach and I was so tired already and just too tired to explain gastroparesis to a doctor that just told me she doesnt know much about it. The fatigue from lack of nutrients is just so strong when your literally starving..
Hope they send me to a gastroenterology station in hospital and not to a mental institution where they might try to fix the broken stomach with pills that make everything even worse. Just thanks once again!!! Wish I could show this to my doctor..
12:17 this one happened today and mistaken for a mental illness 😢
I got diagnosed around mid 2020 and it felt amazing to finally know why I always felt so awful. Right now I’m just on pills to help it but I feel it getting worse lately. The vomiting is the worst, especially when I kept gaining weight too I got so self conscious and stopped eating most days but still felt so awful all the time. Learning about what I have has helped immensely and I feel not so alone anymore
Aww I’m sorry to hear that you know what it is like too it is truly so awful!! And feeling it get worse is such a disheartening feeling. I agree that knowing that others know what you are going through helps and make you feel less alone. I wish you the best and truly hope you are able to find something that helps you.
I feel like the only person in the world that got severe Gastroparesis and GAINED weight. I hate it that someone else had to experience that too but it’s nice to know I’m not alone.
im not too sure if i have gastroparesis but I went quite a while with very high blod sugar because my diabetes went unnoticed and I have pain all the time after eating, i throw up a lot more than normal people and I feel nauseous 24/7. I'm just watching lots of other's experiences to maybe compare. I''m calling my doctor on monday to get it checked out haha.. but thank you for being open about your gastroparesis, it must be hard to open up about such a personal part of you life wish you all the best
Thank you so much for sharing this video. I have been binge watching your videos whilst in a bad flare up. I have never related more. Thank you x
God blessed you 🙏 princess, and return your health
you are exactly the same as me omg your emetaphobia explination is amazing
Aww sorry to hear you know what this is like too but you are not alone!!
I was there from the beginning of this video to the end excelent job love you both.
Im so sorry you go through this. May God bless you and keep you well 💚
You are so courageous. This video was very well made. You explain things so well
I love this video. Thanks for sharing all sides of this terrible illness. Also you look like wonder woman!!
I was diagnosed with severe gp but, I would rate my syptoms as mild. I consider myself extremely lucky. it still sucks.
Love your video I wish you the best. Having similar issues haven’t been diagnosed yet but trying to figure it out. It hurts to be alive.
Thank you so much. I am so sorry to hear that you are having similar issues. Living with these issues does hurt and I will be thinking of you and wishing you all the best.
Im 24 years old, underweighted and still undiagnosed. Be grateful to be lucky with good doctors, cause in other hand they dont care and tell you you have it in head...
This is powerful. Thank you so much for making this. I only have a mild case op GP, but combined with severe dysautonomia/POTS still leaves me bedridden most days . Sometimes I wonder what is worse, the illness or the medical gaslighting.
Wow I’m so sorry 😢😭
💚
Saame the last year has been living nightmare
Thank you for sharing your story!!
I think I've had this for years. I had gallbladder removed and possible damage to Vegas nerve. It not all the time I get these episodes but when I eat too much. I end up with a swollen stomach and vomiting it up in 8-10 hours. During those hours I'm in severe pain. If I eat foods of too many ingredients tacos, burritos, etc. I camt imagine what you are going through if, this, is a daily basis.
This is an amazingly informative video! 😍
Thank you so much!💚
I like all of your videos, but I have gastroparesis I been dealing with it four 3 years😢
i feel so good about by gp after watching your video.
The butternut squash and sweet potato baby food are my favorite sadly
Thank you so much for this! I was just diagnosed this weekend…If you don’t mind could you please share the name of your amazing doctor? I feel so lost right now…Sending lots of love 💕
What surgery did you have. I’m getting a G POEM in a week
I was just diagnosed with this but I have been suffering from it for over a year I’ve lost over 100 pounds I am 5 foot eight and I weigh 119 pounds my hair is falling out my teeth are loose and I can’t think straight I’m exhausted I am so hungry I am going to be 57 in November that’s if I make it I’ve been hospitalized twice for it and I’m sure it should’ve been more however I’ve been out of work for two years because I have work injury I’m not recovering from that surgery the way I should because of this disease I am not getting the nutrients I need to heal the way I should I don’t have enough money to buy the ensure that I need to at least get some calories in lately I have not been able to eat at all I was released from the hospital two weeks ago still trying to get some insure trying to get Iowa total care to pay for it or at least help me out I’m all by myself I have no one I’ve been divorced for four years now was in a very long marriage and it was an abusive one and now this is happening to me and nobody cares because they don’t know what it is my son told me I wish I had my fat mom back because skinny mom he’s too skinny and looks sick like she has aids and dying my son is 34 years old the words he uses to describe the situation funny anyway I am trying to get help and there is no one there to help the social worker at Iowa total care instead of doing her job she decided to call the police and tell the police that I was drunk and on drugs and threatening to harm myself I’ll because I reported her for not helping me out with this situation every time I talk to her she yells at me and tells me that I am putting up roadblocks how am I putting up roadblocks when I couldn’t remember my doctors phone number is this woman has all this information she is a social worker that is supposed to be assigned to my case therefore she has all of my medical records along with my doctors phone number two weeks now still nothing she came back with you need to get your doctor to do such and such I said no you need to get my doctor to do that after all you are my advocate because I cannot do this on my own that’s why you were assigned to my case so the police came knocking at my door thinking that I was on drugs intoxicated and trying to harm myself wow all because of some lazy lazy nurse that did not want to do their job over two weeks still nothing still haven’t gotten the ensure but I didn’t get was a knock at the door from the police he says you’re clearly not intoxicated or on drugs and you’re not trying to hurt yourself you’re just trying to get someone to help you save your own life and he asked if he could take me to the hospital so I could get some nourishment and I said no that’s OK I will have my friend next-door do it last thing I want is more attention to myself anyway just needed you to hear my story and thank you for posting these videos it helps a lot!!
I’ve been reeling from
Gastroparesis. My gpoem failed and I’ve been nauseated and puking constantly for three weeks ugh !
I’m having a bad hypoglycemia rn or whatever I haven’t been able to eat today at all because of my gastroparesis I have had gastroparesis since I was 16 and now I’m almost 21 in august I can’t with this illness anymore but I’m pushing threw it hoping I can have gastric bypass surgery this year for my wieght and my gastroparesis and yes the crunchy dissolveable snacks baby food are my best friend and I also eat smoothies a lot
I am sorry to hear that you are having a rough day. It sounds like you have been going through this illness for quite a long time, I am so sorry it is really exhausting. I hope you can get the surgery and it is able to help relieve some of your symptoms!
@@KennaKrueger thank you I know u know that a surgery helps cause I heard u had a surgery also that helped some of ur symptoms any advice I know it’s not the same surgery but any advice
I'm a guy who developed this from an experimental medication victoza, I can't believe people don't know about this more. Or have a bit more empathy to people with this. It's soul crushing. Wait who is the doctor that knows their stuff!?!? I need a name, please!!!
The truth is if people haven't experienced it they don't understand. It doesn't matter which immuno disease and there are many and far too many to know. Nobody regardless of empathy can really get it, and to top it off, most people don't have very much empathy. All too often we are self centered, I like to think us with such problems have more empathy and probably it's true, however we don't know all the diseases people face and it's not a paying job to learn so I write it off as ignorance of the problems and for they lucky ones with perfect health probably willful ignorance and not their problem, sounds cold but I believe it's just honest truth, sometimes the truth isn't glamorous.
I got officially diagnosed in April of this year and I also have emetophobia. It’s literally killing me and draining me
Thanks so much for sharing so much in this video! I can relate to a lot of this. I have digestive motility issues, fainting, fatigue, and a lot of other stuff from having hypermobile type Ehlers Danlos syndrome.
Was it something like Domperidone that caused the lactation? I can't have drugs like that, due to my endocrine issues and adverse reactions to them in the past. My dysmotility, fainting, and fatigue are being managed with Mestinon, which is an old medication and a new treatment option for gastroparesis.
You are so welcome! Aww I know about all those conditions and they sound so rough to go through. And yes it was the domperidone that caused the lactation. I stopped it shortly after that side effect happened and plus it stopped working for me anyways. I am so happy that you have found a medication that is helping you manage everything!
@@KennaKrueger Another one of my friends is struggling with the Domperidone as well, with the lactating and it not reliably working anymore.
Have they tried you on Mestinon yet? It's an old medication, but a new option to treat gastoparesis. It can also help to reduce muscle weakness and fatigue. None of the side effects of Domperidone, which is nice. Mestinon works by stimulating the parasympathetic nervous system and vagus nerve, which are both in charge of digestion and moving things through the digestive tract.
Aww I am so sorry your friend is going through that as well! And no I haven’t tried it yet, I am currently waiting on an appointment with a new doctor my current doctor referred me to
Try going gluten free it has helped me a ton and i cant take any meds for my gastropareses (im allergic with everything) , going gluten free is the first bit of relief i have gotten, even if just a little.
What surgery did you have ? I have gastroparesis ...its awful... living of ricemilk and protein powder
That was a beautiful video
This was an incredible video. I was diagnosed with Gastroparesis a few years ago. I was sick for months before I was properly diagnosed. I don't know what was worse...the symptoms or the fact that my family thought I was purposely making myself sick and vomit. Over the past few years, I've met with 3 dieticians to help me figure out a GP friendly meal plan and none of them fully understood that I cannot eat 3 meals and snacks a day. I finally stopped listening to other people and started listening to my body. I transitioned to a liquid diet and my symptoms are so much better. I drink protein shakes, I juice, and I puree soups. I've found that if I eat 1/4th- 1/2 cup of pureed soup at a time, I don't get the stomach cramps or nausea. I also discovered if you make vanilla pudding and add 1/2 dry cake mix to it, it tastes just like cake! I add a little more milk than the pudding box suggests so it's not as thick, and it's perfect😂 I had to get creative with food lol. I also take a liquid multivitamin, liquid iron, liquid collagen/biotin and b-12 drops for energy. Liquid supplements are so much better than pills since it absorbs faster. I wish you health and happiness!
Aww thank you so much! I am so sorry to hear that your family didn't believe you. This condition is so tough and a strong support system makes it much more bearable. I so agree with you that the best diet we can give ourselves is just us listening to our body and figuring what it needs not necessarily what the textbook gastroparesis diet tells us to eat. We are all so different and tolerate different foods better than others. I am honestly so impressed you are sticking to a liquid diet! I know that would probably help my symptoms a little more but it is sooo hard.
Wow that pudding/cake mix thing is so creative, I never thought of that. Getting creative with foods is definitely a must.
I am taking vitamins in a pill form right now but should probably look into liquid vitamins to help with absorption. Thank you so much for your comment and I too wish you health and happiness!
This really helped my emotions... It took until I am 26. I just got diagnosed this year in 2022. I always thought my ulcerative colitis was causing this and it wasn't. I have been dealing with this for so long without a label. I am trying so hard and barely able to eat. I am afraid of the inevitable. I am barely making it through school and have to make though decisions.
How do you get through college with this? I am afraid that I might not make it. Do you have any way you can help?
@Kenna K I have the symptoms and it feels like food goes to my intestines super fast and I get diarrhea, nausea, and there are sometimes I can't keep solid food down at times but then most times I can tolerate food but there is weeks at a time where I can only drink ensure and drink it real slow? Is that Gastroparesis? My GI doctor wants me to do a barium swallow test. I'm scared I will throw it up
I’m just now seeing this but my pots specialist believes I have gastroparesis and I have emetephobia as well and it sucks having to feel so naseous all the time while constantly worrying about throwing up
Thank you for you video. My 13 yo EDS boy is with all the symptoms now. But, as nausea, vomiting after little food and feeling full after a few bites, pain, all these symptoms are the same in gastric cancer, how can you tell the difference? Where in your stomach do you feel the pain?
Noone will truly understand what people with gp goes through its very tiring annoying vomiting and nausea and the lose of weight right now I'm about 90lbs
I was diagnosed with idiopathic gp when I was 12, then it went away randomly. Now I’m dealing with possible partial intestinal paralysis at 25😔