Just before I was discharged after my last hospital admission. I had spoken with the junior members of the team. I know that what they said to me had come directly from the consultant. It didn't make me feel any better. I was angry, and upset. But mos of all scared. Fear can affect a person differently. Fight, flight, or freeze. I have experience all these reactions like I am sure most people have at some stage in their life. Many things happened during the conversation that made me feel as though I had to fight. I had to fight for my rights, my quality of life, and to be heard. As so far I had not felt heard.
As the senior Registrar spoke I reacted as anyone would when you hear complete B.S. It wasn't his fault he was the messenger. During my stay a friend of mine who is medical had done some research into my condition. She did this with an open mind, and she also had witnessed the lack of care I had experienced. I offered up this information to a nurse who passed it onto the doctors etc. This information was on Pouchitis. An inflammatory process that can happen within a neobladder. As my Consultant had never mentioned this we thought it may be helpful. Also as my earlier posts mention I had been asked by the consultant to do my own research into this operation before having it done.
I thought though at the time that the Consultant may try to do their best to discredit this possible theory. I was right. Horrifyingly so.
Not only was I firstly old that no their would be nothing done to remedy my bladder. I was told in no uncertain terms that I had pouchitis. Their basis being 1. The C.T scan I had done. 2. Blood test results that showed no inflammation, and so on.
Considering I had no C.T scan done except for in the beginning, and I actually had no blood tests done over the 3 day admission I don know where they obtained their conclusive evidence from?
The only tests I had done were a ultra sound scan. To check how much urine I had in my bladder due to the retention factor. I also had a large amount of mucus, some blood and both myself and the nurses experienced difficulty extracting any urine out of the bladder. After the ultra sound, I was left for an extended period of time alone with my notes. In desperation for answers, I had a peek, I found the original C.T report after my first surgery. It stated my bowel obstruction amongs other things. The report was dated 7 days before my eventual surgery to remedy this. So I felt a bit pissed off, but I had answers.
Back to he conversation with the team. After having aquired some answers, and then hearing the reasons why I didnt have possible pouchitis, I mentioned loud and clearly that I had no such tests performed while I was a patient at that admission. I also mentioned with tears brewing that I had read my notes. That I felt lied to and how this whole thing appeared to be one big cover up. I expressed my feelings of no longer having any belief in my team. This was my life, my body, and I had rights. I had a right to honesty. It wasn't that I wanted to crucify my Consultant, it was about the continual lies, and lack of care. The fact that after every admission my reports were always wrong, major details wrong. I had become hyper vigilant not with the nurses, but with the medics. This was exhausting, and demoralising.
The Senior Registrar was pretty good at trying to handle the situation, he came up with an alternative, which I hesitantly accepted. I was really bloody scared. Coincidently A nurse came to my bed after my honest out pouring to complain about my video on You Tube. An educational video, with the basics of the operation in it. I had informed the nurses who had their pics in it. No one seemed to have an issue. Suddenly their was an issue. So I took the pics out.
As I was leaving I was handed my discharge notice. I couldn't believe it. Once again it was wrong. It even mentioned blood tests that I didn't have. W.T.F. Here I had poured my heart out, felt like I had been heard for once, and that happened AGAIN. After a nurse called the Doctor who wrote the report, I went home. Vowing never to go back. I can really see why things can go wrong. I could have complained to the various agencies who deal with medical mishaps here. But I didnt. All I wanted was an acceptable, honest level of care. Not to go to the hospital in complete fear.
After this event life went on as normal. I'm not one to stay in bed, I try to be active. I have kids so I can procrastinate. I didnt feel sorry for myself, that gets you no where. I had to live my life.
Finally I got an appointment in the mail. I had a second opinion. I looked forward to this, but yes I was scared. Would I be heard?