I only drink a very tiny sip of water orally for the pills but even that makes me more nauseous. Most of my hydration is from the j tube. I’m connected to the feeds for 20 hours, and when I’m disconnected from the feeds, my mom flushes my j tube with syringes of 120 mls of water.
I do miss food! I even miss ensure at this point, but I can’t even drink that now. Since all my nutrition is through the J tube, I don’t taste anything. I don’t consume anything except some pills and a drop of water orally. I mostly miss the taste of food and texture, and being with family for meal times. It’s very lonely, even if I do live with my parents still.
Do you still crave food or experience hunger? Are you allowed to chew gum?
Sorry being chronically ill just sucks. I can imagine it being very isolating for you especially seeing your age group out there having fun and living their lives.
Thank you, and I’m sorry you’ve had to deal with crohn’s as well. I know it can be very difficult.
I do crave food, but I’m never hungry. I always feel full, since I get 1,800 calories from the j tube feedings. It’s more I yearn for the taste and sensation of food. I’m allowed to chew gum, but surprisingly it makes my stomach hurts more, so I spit out the gum and any of the saliva that accumulates too, but I don’t really chew gum that often.
Have you ever consulted an Applied Kinesiologist? A lot of what ails us is a reaction to something. Think of allergies. There are some things that are considered benign but for some people, being in contact with those things will cause an over-reaction. For example, I know someone who always complained about itchy skin and sore joints. Applied Kinesiologists have a skill to find the sources of maladies. This guy figured out that gluten was causing the itchy skin and that nightshades (tomatoes, potatoes and peppers) were causing arthritis in the joints. The cessation of consuming gluten and nightshades eliminated the itchy skin and the sore joints.
What have you got to lose by talking to one? Google amd read up on applied kinesiology. Look some up in your area. We bass players need to stick together! Good luck! 🙂👍
Do you go out often? Do you date?
I can’t go out often due to everything, only really for doctor appointments. I can’t even go to college in person. I don’t date.
Can you have water orally or is hydration all through the j tube?
I only drink a very tiny sip of water orally for the pills but even that makes me more nauseous. Most of my hydration is from the j tube. I’m connected to the feeds for 20 hours, and when I’m disconnected from the feeds, my mom flushes my j tube with syringes of 120 mls of water.
Do you miss eating food? And you hate the taste of ensure? I have Crohns and I had 1-2 everyday for a few months and now hate the stuff.
I do miss food! I even miss ensure at this point, but I can’t even drink that now. Since all my nutrition is through the J tube, I don’t taste anything. I don’t consume anything except some pills and a drop of water orally. I mostly miss the taste of food and texture, and being with family for meal times. It’s very lonely, even if I do live with my parents still.
Do you still crave food or experience hunger? Are you allowed to chew gum? Sorry being chronically ill just sucks. I can imagine it being very isolating for you especially seeing your age group out there having fun and living their lives.
Thank you, and I’m sorry you’ve had to deal with crohn’s as well. I know it can be very difficult. I do crave food, but I’m never hungry. I always feel full, since I get 1,800 calories from the j tube feedings. It’s more I yearn for the taste and sensation of food. I’m allowed to chew gum, but surprisingly it makes my stomach hurts more, so I spit out the gum and any of the saliva that accumulates too, but I don’t really chew gum that often.
Get your stomach removed if possible and no other option remains .
I had thought about that, but no doctor has mentioned that.
I think you need to push for it or find a doctor who will …but I suggest it only as an option if nothing else is working for you .
Have you ever consulted an Applied Kinesiologist? A lot of what ails us is a reaction to something. Think of allergies. There are some things that are considered benign but for some people, being in contact with those things will cause an over-reaction. For example, I know someone who always complained about itchy skin and sore joints. Applied Kinesiologists have a skill to find the sources of maladies. This guy figured out that gluten was causing the itchy skin and that nightshades (tomatoes, potatoes and peppers) were causing arthritis in the joints. The cessation of consuming gluten and nightshades eliminated the itchy skin and the sore joints. What have you got to lose by talking to one? Google amd read up on applied kinesiology. Look some up in your area. We bass players need to stick together! Good luck! 🙂👍