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Pasazer

528d

Just got diagnosed literally 20 minutes ago and I didn’t know it was incurable until I looked it up and now I’m on the verge of sobbing, how does this affect my life? How has this affect your life? How did you deal with your diagnosis?

Top reply
    • Bigdaddyc9

      484d

      I manage mine with small meals and Reglan and I smoke more weed than Snoop lol

    • Bigdaddyc9

      484d

      I manage mine with small meals and Reglan and I smoke more weed than Snoop lol

    • Skittles22

      485d

      It's still very new to me, I got diagnosed this year. It's been difficult, not going to lie to you. Finding out what works and what doesn't can be hard for any condition. I'm taking rabeprazole for acid reflux, and I'm on ondansetron and metoclopramide for nausea as needed. I replace at least one meal a day with an ensure shake. Sometimes more than one. I avoid a lot of foods, and I try to only eat a little at a time. Your stomach is only about the size of your fist, so eating more than that is difficult. Hopefully, this helps a bit.

    • Teal100

      485d

      I have a peg-j feeding tube as medication didn't work for me but not I have that and one medication my life is so much better, I'm not so tried and sleepy all the time and can actually do things.

    • Icequeen90

      507d

      It is definitely still manageable. The process of finding what works for you feels defeating but don’t lose hope. I take reglan for mine and levisin as needed. I had to change so much about my diet. A good diary and a dietician help a ton with that. Regular exercise seemed to really help me as well. Water water water I cannot say it enough how much it helps with so much of it.

    • Riverwater

      528d

      Not gonna lie, it REALLY sucked at first. But incurable doesn’t mean unmanageable or untreatable, and it’s a condition that still needs a lot of research. When I was first diagnosed, I got a bunch of meds thrown at me and I tried pretty much everything until I figured out what works for me. I drink smoothies every morning and it helps me have an appetite for the rest of the day, I take a probiotic because delayed gastric emptying can mess with your gut bacteria, and I drink a lot of warm beverages and eat softer foods. I started seeing a dietitian when I felt lost, and she helped me find new foods to eat that worked, and helped me work through my ARFID as well. Over time, you’ll figure out what foods trigger your symptoms (popcorn, red meat, and raw veggies are my biggest triggers) and it will get easier. (Try to get a zofran prescription for the heavy symptom days. It’s a lifesaver.) I had to make a lot of changes at first (gave up vegetarianism), but now it’s all part of my routine, so I don’t think about it on a day to day basis anymore. I didn’t give up trying things, and that’s how I got to the point where my symptoms are very well-managed. It’s a part of my life, but it doesn’t control my life. I know things are scary right now, but please have hope.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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