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MedicalUnicorn

448d

Hello fellow potsies! I was wondering how many of you have a feeding tube to help with eating? POTS makes it very difficult to eat for me. Sometimes I feel that a feeding tube would make things a lot easier. When did you know it was time to get one?

Top reply
    • Triniti_a

      447d

      I have POTS and mild gastroparesis, I also have post prandial pain unrelated to the GP (can't figure out the cause of it yet), but bc of that it is very hard for me to eat aswell. I weighed 100lb at one point, my doctor told me that if I lost more weight we would talk about getting a feeding tube. The closest experience I have to that is I got a manometry test done, it was torture. The worst feeling ever. But I understand your pain/feelings, I often thought a tube would be easier. I found that drinking boost shakes and eating soft foods helped in the beginning. I've now gained 12lb and can eat regular foods. I still have the pain but I've just been "dealing" with it bc even with the 12lb I feel so much stronger than I did before. So, I say all that to say that a feeding tube is not a failure, but it should be the last resort. You're not alone. Talk to your doctor and see what options are available for you. I hope you get some relief and are able to eat soon ❤️

    • Triniti_a

      447d

      I have POTS and mild gastroparesis, I also have post prandial pain unrelated to the GP (can't figure out the cause of it yet), but bc of that it is very hard for me to eat aswell. I weighed 100lb at one point, my doctor told me that if I lost more weight we would talk about getting a feeding tube. The closest experience I have to that is I got a manometry test done, it was torture. The worst feeling ever. But I understand your pain/feelings, I often thought a tube would be easier. I found that drinking boost shakes and eating soft foods helped in the beginning. I've now gained 12lb and can eat regular foods. I still have the pain but I've just been "dealing" with it bc even with the 12lb I feel so much stronger than I did before. So, I say all that to say that a feeding tube is not a failure, but it should be the last resort. You're not alone. Talk to your doctor and see what options are available for you. I hope you get some relief and are able to eat soon ❤️

      • MedicalUnicorn

        447d

        @Triniti_a Thank you so much for sharing! According to my GI doctor, I also have post prandial pain (not sure why), but sometimes I wonder if it's just because of my POTS (I have the hyperadrenergic subtype). I have mild weeks, where eating is ok, but I often have tough weeks where I tend to eat the bare minimum. I've lost 11 pounds since the summer. I will see my doctor later this month, so maybe I will ask her about it. Thank you <3

    • kateafranklin

      447d

      I am a potsie, but I got my feeding tubes for Gastroparesis. I was labeled as pale and frail while in the hospital for a partial paralysis episode, and was struggling to eat even the smallest meals. I had failed all of the Gastroparesis medication treatments. I could barely eat a snack.

      • MedicalUnicorn

        447d

        @kateafranklin awww, I'm so sorry! You're so brave and strong!

    • Officialishness

      448d

      Unfortunately feeding tubes do come with some risks. I would look into alternatives such as liquid supplementation or diet changes before doing a feeding tube. It depends on where your problems lie (physical incapability to swallow, severe GI issues, etc.) I would recommend talking to your treating physician and see if you can get a referral to a GI specialist.

    • Healforhealth

      448d

      Potsie here!! I'm sorry to hear that you have a hard time eating. I don't struggle with this symptom but I am interested to learn from other Posties about this topic! I have seen other people get feeding tubes when they generally have lost the ability to nourish their bodies. I'm not educated enough on this topic to say when the right time is... I hope some fellow Potsies can give you some good advice very soon! 🙏🙌❤️

    • Hamie

      448d

      I haven't so I can't relate

☝ 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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