update

     The last few days have been difficult to say the least. They did the surgery  on Thursday and as soon as I woke up I knew things hadn't gone the easy way. The surgeon said that it became a very complicated operation involving incisions because my stomach is much smaller than they expected and it was stuck under my colon. I've been on a twenty four hour gravity vent since surgery to vent the G tube. The surgeon said that we could attempt things through the G port but they would most likely cause horrible pain and needing to vent immediately. My J tube port is higher up than before so they are hoping they can maybe get tube feeds going soon. 
     The pain has been completely unbearable, had to be on oxygen after surgery because the tube is placed so high up I can't take a deep breath without horrible pain. The docs didn't help with pain relief at all...my surgeon said if he would have been there my pain would have been taken care of. He left my other stoma site open because if this g/j doesn't work he wants to have a place to go in rather than open a fresh site, but he also said that if feeds fail this time then the docs really need to understand we've exhausted all of our efforts and should start TPN. He said he doesn't understand why they are taking the approach they are taking to everything because it is very dangerous for me. He said as soon as he saw me in clinic he knew that I needed surgery asap to get everything started that I am in desperate need of nutrition.
    We have also started doing some research into the last few months while the medicine docs have said my labs were okay and all that. I've read over all my tests and lab reports over the last few months and my albumin has been low enough to start TPN for the last month in a half, my hemoglobin just came back as 8.1 after surgery which explains weakness, and my CTs have shown multiple issues also. All this time they have been focusing on the number on the scale while my body is falling a part. I don't understand how this happens. It is just like when someone with an eating disorder is trying to get treatment and all the insurance company has to say is the wt is low enough...weight is not an indication of one's health. People with eating disorders die at all different wts, underweight, normal wt, and even overweight and it is the same with gastroparesis.
     People are dying everyday because of ignorance on the part of doctors. This has to stop, we have to spread awareness and help things get better. Right now my pain meds are kicking in so I'm a little spacey time to sleep. I will hopefully write a blog that is more useful tomorrow, have a topic in mind already!