Reply to wendygeneral60
I just had another bag explosion, this one lasted 48 hours. If it was not for still being in the hospital with these spectacular nurses, I might find that courage we both speak of. I'm not sure I can do much more of this. Doctors are still unkind and not listening. After a year plus of being blocked, I wish I could go back to that now that the doctors had to finally give up on the "you are constipated because of "all" the opioids you take for pain." 40 whole mg's a day was their explanation for all my blockage issues. Now the pain management team is throwing the pharmacy at me and it's like shit through a goose still. Being talked to like a toddler is really pissing me off as well. I do not trust these doctors or their excuses. To put it in terms I understand, it seems they are throwing shit at a wall and seeing what sticks. So far, it's every little piece of shit sticks to me. They have ruined me financially by blaming opioids and not listening to my 40-year history with the disease. I filled out the transfer of records request along with proper HIPAA forms so the doctors at the "world-class facility" could talk to my old doctor about what was working for my care for decades, and they lied and said they called. They did not and chose not to believe me and put me in harm's way. If I'm lucky, a bag might last 48 hours. I've never made it 72. Pretty depressed, could lose my house, my career is shot, and these clowns aren't doing a damn thing even the bare minimum of listening to the patient. After the surgery and admission, I heard them giving the exact same speech I've been given about opiates. These guys have a playbook and be damned with everything else. I know several people with Crohn's and not one has the same symptoms, similar yes, the same absolutely not. I'm disgusted in pain and still not getting quality care, expensive yes, quality no. This is absolutely not what I was told was gonna happen and is, in fact, the opposite. I've now taken some of the last of my money and flown in a friend to take care of me at home again at their direction, and I have yet to go home but am spending what little money I do have flying a friend all over the country to stay at my house while I waste away at the hospital. It's crap, pun intended, and I would prefer death to this continued abuse by uncaring providers. These doctors are perfect, you don't even have to ask them, they will tell you! Maybe one last steak dinner and I'll check out, I've had enough of these butchers. Sorry to hear it's the same for you, Wendy. I know there are supportive folks here, but right now it all sounds like these doctors and their pep talks. I applaud those of you that the procedures have worked for. I just want to go home and die in peace since now they are throwing the whole pharmacy at me.