While I am making tremendous progress in almost all aspects of my health, here’s an update on the not so great aspect: my GI system.
Unfortunately, the gastric emptying scan didn’t give us much clarity. I’ve met with both GI surgery and a GI physician, and our main goal is to wean off TPN and rely on tube feeds (and the minimal oral intake I am able to somewhat tolerate) for my nutrition.
Tomorrow, I have surgery to get another GJ tube placed. The hope is that when I am able to vent/drain my stomach, I will tolerate jejunal tube feeds. The NJ tube simply didn’t work. Feeds via the nasal tube were incredibly painful and nauseating (almost as bad as eating orally). I even threw up one of my NJ tubes this week which was very startling.
For weeks now, I have tried to eat a little bit (orally) every night right before bed. I time my eating with Zofran and nasal ketamine, but the pain is agonizing. This typically ends with me retreating to my room to lay in a fetal position with a heating pack on my stomach and tears in my eyes. Vomiting is destructive because it causes my fused neck to suddenly jerk which accelerates my headache and gives me neck pain, blurry vision, and ringing in my ears. Gratefully, now I am able to administer IV Zofran which has helped reduce my vomiting significantly.
One positive aspect of TPN is that it has helped me reach a stable place nutritionally and have more energy. Nevertheless, I want to wean off this ASAP….kinda feel like it’s a time bomb for another blood infection/sepsis. As I highlighted in an earlier post, TPN has its risks and can take a toll on your body/organs.
Thank you for the continued encouragement! Excited to get this rubber tube out of my nose.