u/Sea_Emergency_7751

I was recently diagnosed with intestinal failure.

I've been on TPN for 3 years now, after suddenly not tolerating J feeds anymore. I was doing pretty well, until having SMAS, MALS, colectomy, and ileostomy surgery 7 months ago. my surgeon found ~1/3 of my small intestine was necrotized so he resected all of that. my motility completely stopped afterwards.

nothing has moved since- my G tube drains 24/7, and I've had less than 300ml ileostomy output in the last 7 months. i've had 12 hospitalizations for pseudobstructions in the last 6 months.

IV zofran, IV emend, and IV benadryl have been unable to manage my nausea and vomiting. any other ideas? I can't do phenergan or reglan due to dystonia.

thank you 🫶🏻

I was recently diagnosed with intestinal failure.

I've been on TPN for 3 years now, after suddenly not tolerating J feeds anymore. I was doing pretty well, until having SMAS, MALS, colectomy, and ileostomy surgery 7 months ago. my surgeon found ~1/3 of my small intestine was necrotized so he resected all of that. my motility completely stopped afterwards.

nothing has moved since- my G tube drains 24/7, and I've had less than 300ml ileostomy output in the last 7 months. i've had 12 hospitalizations for pseudobstructions in the last 6 months.

IV zofran, IV emend, and IV benadryl have been unable to manage my nausea and vomiting. any other ideas? I can't do phenergan or reglan due to dystonia.

also, is there a specific community for IF or CIPO? or intestinal dysmotility? I have so many questions. thank you 🫶🏻

has anyone had issues with sensura mio click bags not staying "locked"? I've only had my ostomy for 3 weeks, but I've woken up numerous times with it unlocked, and hardly clicked on... I usually have the lock on the left side, so towards the midline. is there a better place to position it? I'm definitely clicking it all the way, so I'm not sure whats going on