Crohn's Update: First Skyrizi Infusion Experience + Symptom Benchmark

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  • Опубликовано: 1 ноя 2024

Комментарии • 13

  • @colleenallenalampi6391
    @colleenallenalampi6391 Месяц назад

    I've just found you a few days ago, and have watched a few different of your blogs and I feel like I'm watching my own video. I
    To start I have Fibromyalgia, and Type 1 diabetes. Last fall 2023 I started have gastro issues. And my Gi had me do 12 stool samples. I couldnt eat anything without it going through me in a matter of 10 minutes. Constantly nauseous, same as you dont leave home with out Zofran or I
    Imodium. got tested for Chrohns, , Ulcerative Collitis, Colon Cancer. So I feel for you. You are so brave and awesome. Turns out I have EPI Exocrine Pancreatic Insufficiency, I have to take about 6+ Pacreatic enzymes when I eat before I start, in the middle, and at the end. I have all the same full, feelings ,stabbing g pain, bloating. It's awful, autoimmune diseases are horrible. Right after the beginning of the year in February my Fibromyalgia had a flare up, and with in a few days I was a hot mees my spine hurt so bad I could barely move all my joints my wrists, fingers, hands, elbows, everything from head to 2, I couldn't even get out of bed. And just listening to you, I got tested for everything they thought I had a spinal infection, Rheumatoid Arthritis, Lupus, and as you I got tested for Sjhogrens which is a sister disease to Lupus. I have the same severe dry eye issue, and dry mouth , I may have to have eye surgery the help the eye ducks in my eye do something , not sure what but to produce my fluid because it's so bad I'm in so much pain. They finally diagnosed me in July after so many test with another autoimmune disease Spondylitis, causing severe Arthritis. I started Humira, but with my other meds and health issues I was hvi g severe side effects. So I hd to stop after 3 shots. I see my Rheumatologist on Monday the 23rd. Sorry if this was long, hope it wasn't strange. Just watching you,I felt such a connection. Talking to my Drs, and even my my family and friends going through all this, I felt they thought I was crazy. Best of Luck to you. I wouldn't mind a response. Colleen

    • @coachninab
      @coachninab  Месяц назад

      @@colleenallenalampi6391 Hi Colleeen! It warms my heart that my journey could provide you any comfort. I know how it can feel like people who don’t understand the process of chronic illness can just look at you like you’re crazy, and being able to share and connect with others who do have this kind of experience is really important to me, so thank you for reaching out. Lots of love to you on your journey ❤️‍🩹

  • @BarrettLaurie
    @BarrettLaurie 7 месяцев назад +2

    Hey Nina. Welcome to the Crohn's family. Excited to hear how Skyrizi works for you.
    I finally got to infusion after my Remicade infusions.
    My Crohn's presented with anal fistulas and bathroom urgency.
    I remember the feeling of not knowing what it felt like to feel "well."
    Thank you for sharing your journey and I look forward to learning more about your journey.

  • @catmando4448
    @catmando4448 8 месяцев назад +1

    I would love to see an update after your next infusion. Good luck with this biologic!

  • @kendrabee100
    @kendrabee100 8 месяцев назад +1

    Thank you for sharing your experience with us. I was recently diagnosed. You described to a T what the symptoms feel like every day. 💞

    • @coachninab
      @coachninab  8 месяцев назад +1

      Thank you! Take care of yourself in this new diagnosis phase 💛✨

  • @Spaghetti989
    @Spaghetti989 8 месяцев назад

    Thanks for the story

  • @angierosales1606
    @angierosales1606 Месяц назад

    How did you feel the day after the infusion? I got my first yesterday, and today, I feel horrible 😟

    • @coachninab
      @coachninab  Месяц назад

      @@angierosales1606 I felt pretty down the next day because I wasn’t noticing any difference but after a while things did start to improve, especially after the second infusion :)

  • @_LAND_OF_THE_FREE_
    @_LAND_OF_THE_FREE_ 8 месяцев назад

    It's been 13 day's how are you ?

    • @coachninab
      @coachninab  8 месяцев назад +1

      Things are going well! I will post an update in the next two weeks

  • @vipulnaik1
    @vipulnaik1 Месяц назад

    ruclips.net/video/u7wj4v1FOkQ/видео.html -- I think "tenesmus" is the term for what you're describing.