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    Question

    How do you bring yourself to dill out an end of life packet?

    I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd

    Post

    18 months later as a tubie

    I know it has been a while since I last updated y'all on my progress with living with a GJ tube. It has been an experience! I've had to 9 tube replacements due to my tube moving, twisting and countless clogs. After so many issues, my gastrointestinal surgeon felt that I needed better assistance from the Internal Radiation team or IR for short. With the IR team, instead of the GJ tube being replaced through endoscopy and replace while I am awake but giving something for pain. The first time I had it done, I was very nervous because of knowing I would be awake for it. I was able to watch the team set up the room with the monitors and the x-ray machine over me so they can see where to go. I have a completely different tube than I had from 11 months ago post. The photo above is me now. I can say I have had only 2 clogs with this new tube and it was so easy to unclog with a can of Coke. I'm still adjusting to live with having this GJ tube forever but I'm being patient with myself during the process.
    #EhlersDanlosSyndrome #Gastroparesis #GJtube #FeedingTube #LifeasanEDSerwomanofcolor #MastCellActivationDisorder #posturalothostatictachycardiasyndrome

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    Feeding tube/port decision

    Does anyone have any thoughts/ tips when deciding between a j tube or a port? #EhlersDanlosSyndrome #Spoonie #AutonomicDysfunction #Gastroparesis #Anxiety #FeedingTube #PosturalOrthostaticTachycardiaSyndrome

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    Hi, I’m New Here #FeedingTube #MultipleSclerosis #Baclofen #SpinalCordInjury #Paraplegia #TraumaticBrainInjury

    Just thought I’d introduce myself 🫣

    Before my illness/injuries took over, I used to really enjoy cooking— even thought about enrolling myself into a culinary arts program. However, I would eventually come to realize, through the years that it simply wasn’t meant to be.

    My journey began in 2008, when I was diagnosed with multiple sclerosis. And despite having started a DMT (Copaxone), my symptoms took a turn for the worst in October 2013. One day, while showering, I got hit with an out-of-the-blue case of vertigo, resulting in a fall, which caused my lumbar spinal cord injury.

    Despite my best efforts to communicate with my medical team, I wasn’t taken seriously. The only responses that my doctors repeatedly used whenever I’d express my concerns were, “Hmm… I’m not sure if this is from the MS”, or, “Why don’t we increase your medication dose and see what happens” 🙄🤕 This went on for about eight years.

    By 2016, my digestive system decided that it’d had enough!!! And just like that 🫰🏾it quit on me. I’d spend the next four years shedding a drastic amount of weight, being unable to keep any food or liquids down, and frantically searching for a doctor to actually listen to me. And all I had to show for my efforts was a traumatic brain injury I’d acquired in November 2018, after having passed out, being rushed to a hospital that was close by at the time, and receiving treatment for dehydration— but not the concussion I’d sustained from having fainted, in the first place. 🙄🤨

    By 2019-ish, I’d finally found a team of medical professionals who were as compassionate as they were intelligent; and in March 2020, after I’d withered down to 105 lbs, I had a j-tube surgically implanted. It’s saving my life, for sure, but it still makes for a lonely existence.

    Once my digestive issues were “stabilized” (new normal = permanent), it was time for me to get the rest of my poor, exhausted body taken care of. My new neuro team placed me on Ocrevus, which helps tremendously at keeping my nervous system in line; I also have a little helper— a port-a-cath— that gives my medical team the necessary access to my stubborn veins for blood work and infusion days (it literally took a whole team of nurses, and one uncomfortable hour to finally got my veins to cooperate before my port 😳💉🩸).

    Next up was Pain Management. After several unsuccessful attempts of conservative treatments (crushing pain pills and flushing them into my tube), it was decided that I would be an ideal candidate for an intrathecal Baclofen pump, which I had surgically implanted in January 2022.

    So, what brings me here to the forums? Isolation. As I mentioned previously, living life in a partially bionic body makes for a rather lonely existence 😔 After all, what are the chances of meeting someone else with MS, a TBI, an SCI, and a STRONG affinity for all things audio (unless it’s reruns of classic shows that I grew up with, documentaries, or pretty much ANYTHING to do with British TV, then nope, I probably haven’t seen/don’t want to watch whatever it is you were about to suggest 🤷🏾‍♀️🤣), who also enjoys Bible study, coloring, and word search puzzles? 🦗🦗🦗🦗🦗🦗🎤🎤🎤 (*ahem… um, hello… is this thing on?*)

    Someone… Anyone… Bueller??? 🤓🤓🤓

    Probably not… but a girl can dream, right? 😴🤣

    At any rate, that’s my story. Hoping to find a lunch table to crash soon 👚👛🎀🛍💖🤣😊

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    Lost #ChronicIllness #Depression #Anxiety #afraid #needhelp #TPN #FeedingTube #MissouriHealthCareSucks

    I’ve fought 8 long years for health. In that time I’ve been dismissed, let down, told nothing was wrong and left to my own defenses. I’ve suffered from depression and anxiety since I was 32, now 56 I’ve had a total abdominal colectomy with IRA in 2017, failed… only to get an ileostomy with hope for regaining health and weight in 2021. Now at 87 pounds, I’ve lost hope, doctors fail me, no offer of tube feeding or supplemental feeding, I can’t eat without pain, now on pain medication. Still I suffer. I’m at a loss, I’m trying to make each day count, I’m grateful for the life I’ve lived, but I’m not ready to go yet. I’m scared, yet I don’t have the energy to even attempt to go to doctors appointments with any hope, as they continue to fail me. I don’t understand why others are given help and the doctors I see won’t do a thing! I feel like I’ve just been left to wither away and die.

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    Accepting This New Life and be Comfortable!

    It has been 9 months since I've had my PEG tube place. In these 9 months, I've have not only had to adjust to having a feeding tube, but also feeling confident and comfortable in the skin I am in. I've had to have it changed over 8 times due to the manufacture of the tube. Yet I digress and keep moving forward. It took me some time to really take a photo of myself with my feeding tube on display. I've learned a lot about my body since going through this experience and truly learning to accept this new quality of life I am blessed with. I could have died last November. Living with Ehlers Danlos Syndrome, Gastroparesis, POTS, Bipolar disorder/depression, etc is hard. I wouldn't wish this on no one. So as I am learning to grow and glow more in the skin that I am in!

    #EhlersDanlosSociety #GastrointestinalDiscomfort #FeedingTube #Gastroparesis

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    For Granted

    Hi everyone! I write a weekly newsletter with stories from my life. Sometimes those stories involve my daughter Em who is three and has cerebral palsy.

    I shared the story link below in my latest issue. I challenged myself to write a <500-word flash="" memoir="" piece="" from="" what="" was="" originally="" a="" 4,000-word="" essay="" draft.="" i'm="" sharing="" here="" because="" i="" thought="" this="" group="" would="" enjoy="" it.=""

    #CerebralPalsy #FeedingTube #Disability #Parenting