I am getting mine placed today. I'll be going into surgery at some point this afternoon. I just want to know is there anything I should expect and to not worry about? And, when should I be worried? How's the pain level?
Hi! Just here to share my story and how I ended up being hospitalized and eventually got a tube placed.
I'm 30 years old 4'11" and I was weighing at 69/55 lbs fluctuating and I could not gain. I also couldn't eat enough orally to get the nutrients and calories my body needs, for decades my body has been on starvation mode and everytime I'd eat, I'd get refeeding syndrome ( recently was told this, it makes sense. ) and I'd go back to feeling absolutely godawful.
I don't have a definitive diagnosis yet. ARFID is heavily suspected but, it doesn't explain my inability to eat enough even if I'm eating my safe foods. I might have an autoimmune disease or disorder, my blood sugar has been heavily affected and I've had episodes of severe hypoglycemia where I was disoriented and couldn't remember where I was, who I was with, why I was there, forgot the month, day, year, couldn't remember colors either.
I'm curious as to when I'm finally discharged from the hospital and go to my inpatient rehab center to get stronger again ( muscles were wasting away, hence being really unsteady on my feet, and being unable to walk a few steps without almost falling. ) bed alarms on and I need to call a nurse if I need to use the bathroom, are there good ways to ensure my tube is working the way it should? How can I tell if it's kinked or coiled? I'm all but used to how it feels at this point, still getting used to the sensation I get when I am eating solid foods and drinking, I just want to make sure I know all I can from those of you who've had your tubes longer and may have more experience to share.