As mentioned previously, I believe that the area of biliary bypass is grossly neglected with our disease. The affected patients suffer greatly and in my opinion, it is unnecessary suffering that can be prevented with a procedure such as the one you have been able to receive.
I believe that the US is lagging other countries with their approach to biliary by-pass. This may be related to (in part) the possible legal consequences and/or the institutional reluctance of providing such surgery. However; I have encountered great support from the medical community at large and have been encouraged by many to pursue ways of pushing for changes in this particular area of possible treatment for our patients. This is a huge undertaking for the Cholangiocarcinoma foundation; any input you can provide to us can aid us in establishing a feasible protocol for biliary bypass for those affected by biliary blockage due to tumor progression.
Whatever I can do to aid in this, I'm up for doing. Please let me know specifically what I could to to help establish a protocol. I am very lucky that once my oncologist and surgeon knew that I was in the hospital and dehydrated, they knew just what to do within minutes of getting a CT scan and seeing where the blockage was.
Honestly, living with the surgery has not been hard once I got over being sore (although, at 56, I was in pretty darn good shape before all this started in late September, so my experience may not be typical). My surgeon chose to do an "old fashioned" normal incision and not do the procedure laproscopically because he said "I was just a skinny girl anyway" and I'd have a smaller incision that way versus the multiple incisions he would do laproscopically. Tell me I'm a skinny girl and I'm putty in one's hands.
I was just exhausted for weeks after the surgery and that really surprised me - I'm generally a high energy, active person, but man, it was a chore to do anything and I walked around like a little old lady, sort of hunched over and very slow. But, your abdominal area doesn't really like to be messed with all that much and it fights back at such an intrusion and recovery does take more time than one would expect.
I'm back to daily walks at normal pace (haven't really gotten on my bike much, but that's coming soon). I've also used one of those giant balls that you sit on and gently bounce to get some exercise (the physical therapists at Baylor helped me plan out some exercises with it).
It took a pretty good while to get much appetite back and I had to eat really small meals - sometimes just a few bites and I was done, but taste (and this may be due to chemo, not the Gastro J surgery) and appetite and the ability to eat more than a few bites have all come back.
Even if the recovery were far worse, I absolutely believe I wouldn't still be here without the surgery. I was getting zero nutrition, losing weight at an alarming pace and just sick as a dog.