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    I'm a Warrior

    #chronicillnesswarrior #gastroparesisawareness #socialhealth #patientadvocate #TPN #rarediseaseawareness

    Yesterday I had several procedures done 3 hrs from home. This picture was taken on my way. I have Autonomic Dysfunction which causes many issues. I had to have my esophagus dilated again, an endoscopy to recheck a gi bleed, g tube for venting switched out, and colonoscopy due to polyp history. Thank goodness no more polyps this time. My throat is sore, but will get better. My g tube button was starting to become buried, according to the dr. My colon was significantly tortuous. Will be seeing a colorectal surgeon soon to discuss options. Make it a great day everyone!!

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    Complexities, invisible scars and getting the help you need #TPN #MALNURISHMENT #Gaslighting #behcets #Ileostomy #help

    I suffer from multiple illnesses. The main one being a rare vascular disease called Behçet’s that I was diagnosed with over 15 years ago.. It has destroyed my body inside and out. My entire colon was removed and afterward I’ve developed one problem after another. At one point, I was on a ventilator undergoing 6-8 hours of dialysis a day after I went into kidney failure. I spent year being mistreated by doctors. I have been called crazy, hysterical, accused of seeking pain meds, subjected to absolutely horrific abuse from medical staff and it ultimately caused a spiral in my mental health. For the past 6-7 years, I’ve had a great team of doctors(finally) until now. I went through 6 months of chemotherapy for the Behçet’s. It was very difficult, but it has helped the disease tremendously. Unfortunately, it has caused more problems with my gut. Over the last year I am only able to eat extremely bland food with no nutrients. Now it’s becoming difficult to eat at all. All of my doctors think I need to start TPN right away for severe malnutrition, but referred me to the GI doctor to prescribe it and follow me. The GI doctor refused ANY kind of supplemental nutrition. He was rude, hateful and gaslit me during the whole appointment. I am wasting away. I am too weak to shower, drive and sometimes too weak to walk into the next room. My life is in complete shambles and once again, my mental health has taken a dive. Most days I can’t even digest my medication. I’m completely lost and have no idea where to turn, as my other doctors have begun to step away because I’m so “complex”. I’ve researched where to go for help for the extreme malnourishment and I get nowhere. Can anyone help me and:or offer any suggestions? I’ve faced some really difficult times, but I’m seeing any way out of this. Please help!! #behcets #Ileostomy #malnutrtion #haslighting #help

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    Gastroparesis and Advocacy Awareness

    youtu.be/BhgMhzIfbXc
    Check out this podcast, in which I was a guest on earlier Thursday August 11, 2022. #gastroparesisawareness #PatientAdvocacy #socialhealthnetwork #rarepatientvoice #TPN
    #theleonthomasgroup

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    An Accomplishment

    Hi there. One of my illnesses is Gastroparesis. Well, it's Gastroparesis Awareness Month. I received the Gastroparesis Awareness Month proclamation from the mayor of my city on Tuesday afternoon. I was able to share my story and enlighten her on the disease as she'd never heard of it. I love bringing awareness. #gastroparesisawareness #chronicillnesswarrior #oleyambassador #TPN #patientadvocate

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    Hey Mighty wartiors! Hope you all are well. August is Gastroparesis Awareness Month. I made a video to show others part of my life. youtu.be/dTtp9z8ul_Y #gpwontsilenceme #gastroparesisawareness #chronicillnesswarrior #TPN #AutonomicDysfunction

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    Baking Therapy

    As someone on TPN, I don't consume meals or desserts. I still love to bake. When I'm feeling halfway decent, I bake and smell it. I give my goodies to my two closet neighbors or staff at my Immunologist's office. I've heard that it's always delicious. #bakingtherapy #Foodforthought #chronicillnesswarrior #TPN #patientadvocate

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    After a 4yr battle against TPN I finally went home on full term #TPN #Gastroparesis #CysticFibrosis #childrenshospital

    I dreaded this day so much but it is the first one I actually managed to have the energy to walk without being pushed! #childrenshospital

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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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    Feeling lucky

    I have a handful of chronic Illness and I’m also a nurse. I recently went back to work part time after being out on medical leave for 10 months. It’s truly kicking my butt, but I’m so happy to be back. I got called bad ass and and inspiration, but In reality I just feel lucky. I’m one of the lucky ones who can still work, albeit part time but I’m working. I don’t feel deserving of being called these things. Yes, I have daily struggles but so doesn’t everyone.

    #ChronicIllness #TPN #EhlersDanlosSyndrome #Intestinal Dysmotility #AutonomicNeuropathy #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Nurse

    Question

    Any tips/trick for when you feel Clamy all over, which often turns to cold to the bone feeling, followed by a hot flash (and than it restarts again..)

    Hai,
    I'm often run into the problem that my body gets caught into a Ficuosis Cycle of Hot>clammy(of sweat) > cold >hot again etc (almost fever like).
    It's often triggered by environmental temperature changes, because for some reason my body doesn't know what to do with that...
    It's probably caused by one of my conditions/meds, like I'm on fenanyl and us #TPN (total parenteral nutrition = feeds via a permanent IV)
    > I'm already doing clothing layering a lot, and wear a lot of scarves tat are easy to put on or off. But I'm looking for more Clothing tips, like what fabric types to look out for, and which to absolutely avoid...? Like now I'm only using Cotten primarily, just because I'm so unsure about other (mostly synthetic) fabric types.
    So any tips, or insights, are greatly appreciated!!
    XxX Maudddy

    #clamy
    #Crohns
    #ChronicPain
    #painmeds