Do you love a tubie? This week is the week to show your feeding tube love. Feb 5-11 is Feeding Tube Awareness week.
This past year I have gone from in home IV hydration therapy, to a PICC line therapy, to a PEG G-tube, finally ending the year with a PEG J-tube. Not a good year for eating for me. I didn’t realize that when I got my feeding tube I would be one of the few adults with feeding tubes.
I have found that most long term feeding tubes are for children. Feeding tubes in adults for many years were not encouraged, especially for young adults. I have heard comments like you seem too young for a feeding tube, just force your self to swallow. Teens that have severe GI problems are often sent to psychiatry for “eating disorders”.
I am not belittling eating disorders. I am saying that many teens that do not have an eating disorder are lumped into that group because as a teen they are dismissed or accused of being over dramatic. When they are dealing with serious medical issues that needs prompt treatment.
I have seen teens have their Celiac disease kick in and be completely dismissed. Despite loss of weight and obvious nutritional loss. This is one reason I will not let my teen go into their doctor appointments alone. I can be a silent observer but I WILL be there. I am the final medical decider until my teen is 18 years old no matter how much the pediatrician tries to push me out the door. I am the mama bear that may need to defend my teen from accusations that are baseless.
I pray your family does not have to go through a severe GI issue up to and including a feeding tube. If you do educate yourself. You may have to actively go out and find people to help you.
My home health service did not have their nurses trained on ANY feeding pumps. My feeding pump and formula supplier was nothing but a paperwork and box pusher. They had no education. To put the cherry on top this mess the last time I was in the hospital I had to show the nurses on the floor how to use my feeding pump. Education is just not wide spread on feeding pumps, and feeding problems.
The best sources of information I found were the Oley Foundation and several FaceBook page/groups G-PACT and Feeding Tube Awareness.