u/Affectionate-Row9488

My GI doctor just referred me to adolescent medicine (I'm 17) for help managing my "complex symptoms" and "feeding difficulties", and I'm trying to understand if it's a common and/or useful referral or just him being dismissive.

For context: I’m fully dependent on GJ-tube feeds for nutrition and get most of my hydration through the tube as well, plus IV hydration weekly. I can only have crackers, popsicles, and water/soda by mouth. Since October, I’ve been having increasing difficulty tolerating my feeds. I was recently hospitalized for electrolyte abnormalities after draining too much from my GJ-tube because I couldn’t tolerate my feeds otherwise.

This has largely been treated as a hypersensitivity issue despite my getting worse while doing everything right (as per my GI doctor himself and my pain psychologist). I completed an intensive pain rehab program, have bi-weekly pain/GI psych sessions, continue to function through symptoms, keep up with school, and work out every day (although I was recently put on exercise restriction).

I have also been diagnosed with autoimmune autonomic ganglionopathy (seronegative, but with many objective test abnormalities). My neuroimmunologist believes AAG is causing both my gastroparesis and feed intolerance, and I have done well on IVIG so far. However, my GI doctor has dismissed it completely since the diagnosis is not definitive (he has a long history of being very dismissive, I am planning to switch doctors soon).

After looking into the adolescent medicine program, it seems like it's mostly focused on mental health issues and eating disorders, which makes me nervous that the referral is just him being dismissive. Of course, I'm open to anything that might help, but I've never struggled with any kind of mental health issues.

Has anyone had experience with adolescent medicine in a situation like this? Did it end up being helpful/supportive? Or is it really just psych-focused?

Edit: Asked for clarification and he said he thinks I might be struggling with disordered eating. Bro????

Nutritionist came by to tell me that I can’t run, I can’t workout, and I can only walk under 1 mile for the foreseeable future, even with being able to increase the rate of my feeds. I am so upset. Exercise, especially running, is the one coping mechanism that actually helps distract from the pain and the nausea and all the other awful parts of this illness. Before this admission I was doing PT/cardio, walking 3-4 miles and/or running 2-3. Realistically I knew it was making me feel worse but it was the only thing keeping me sane. I feel so stupid for being so upset about this, especially when I’m on a floor full of babies on TPN who’s parents would probably love to worry about inconsequential stuff like this. I’m just tired of this illness taking over my entire life. I can’t eat, I can barely drink, and now I can’t do the one thing I truly still enjoy. I’m also tired of the things I was praised for and pushed to do when I was more stable (being active, pushing through my symptoms, not focusing on my illness, etc.), now being turned against me and used to blame me for my deterioration.

Accidentally landed myself in the hospital because I was draining too much from my G-tube. I feel so stupid. I knew I shouldn’t have been draining as much as I was but it’s the only way I can tolerate my feeds at the proper rate and not feel like I’m going to throw up 24/7. I could barely admit it to the doctor because I feel so ashamed that I can’t just push through my symptoms. I hate this disease. I don’t understand why everything has to be so complicated.

Is it common to suddenly have bile/medication leak out of the J-port of a GJ-tube?

I got a MICKEY GJ tube on April 13, and haven’t had any issues with it so far. However, I suddenly started having bile leak out of the J-port when my extension wasn’t attached and then spill out of the extension when it was. The most leakage I’ve had from the J-port before this was a bit of formula from the extension if I forgot to clamp it so I’m kind of confused/worried. The bile also smells like the medication I pushed through the J-port 2 hours ago, but I’m sure that could also be from residual meds in the connection part. I also can’t drain/vent anything from my G-port despite feeling really nauseous and bloated, but that does happen to me sometimes.