This was a reply to a fellow osto-mate but I felt if I posted it I might get more answers that might benefit me and give me some perspective. Has anyone or everyone else been here and it Does get better? I had a collapsed and damaged J-pouch lying on my pelvic floor. No dr or surgeon took me seriously and the yrs and yrs of my digestive dysfunction caused heavy damage to my entire system. It's been 26 yrs and I only got the help I needed 2 months ago - not quite. They had to move my surgery up because they discovered I was experiencing organ death and saw that I was a severely sick woman. My surgoen told my significant other I would have been dead in a few more weeks time if they hadn't seen my test results when they did. I keep thinking it took me a long time to get that sick so maybe there's some better equation of healing and recovery time expected i should just be keeping in mind when I get filled w despair.
I have no confidence left in the system here in the U.S. I've been re-hospitalized 2x for exhaustion and my doctor is almost a moron. I have tried many other doctors but keep coming back to her because the others are either like Nazis and not only impede my healing but my ability to heal and cause me to regress. At least my moron is a kind moron. I am truly traumatized by my experiences in the medical world. It leaves me hugely challenged to call upon their help or make any necessary trips to the E.R. or into Urgent Care.
I am not able to eat enough yet to create any real energy. Once the calories are used up I get a sensation like being kicked in the chest and need to collapse on to my bed. I am always dehyfrated and drink 1-2 bottles of Pedia-Lyte a day & still am dehydrated.
I had low blood pressure before the surgery and it was a real problem and after surgery it's dropped to 90/60 or 85/50.
I just can't seem to be able to get any traction. Does anyone have any advice for me? I am at a loss rt now and too deydrated to manufacture tears but I am filled with them. I have decided to Post this. Maybe other sto-mates may have something I can actually benefit from.
very low & feeling helpless