Debs69--I just finished reading your post. I am really sorry for your misery. I totally understand the anger and frustration of ending up with an ileostomy (and all the future ailments that go with it) when never suffering from UC, but instead as a result of medical intervention for another issue. I also ended up with a bag of sh** through medical intervention, treatment of a blood clot caused by a normally scheduled colonoscopy that we are all encouraged to have as a preventative measure. The situation went downhill so fast from there, from being given meds to which I am allergic (it was in my records) for a disease I did not have (also in my records from testing just the day before) to an improperly placed ivc filter which has damaged lymph nodes and caused permanent lymph edema in my leg, to a punctured rectal stump and split sphincter ring, precluding any resection, to putting me at risk for two different types of cancer to which I was NOT previously predisposed (rectal and lymph), to living the rest of my life looking forward to more surgery for either rectal stump removal to avoid cancer or perhaps hernias or perhaps to receive a BCIR. All it took was inaccuracy in reading records and an overzealous and interfering colorectal surgeon that I had never met stating IN MY RECORDS that he would perform an open abdominal total colectomy with end ileostomy days before we had ever even spoken!! The roller coaster of horrible events still makes me nauseous today if I allow it to. It took me awhile but I've decided to try hard to take on a new challenge in my life (yes my LIFE), even though I am one of those people who told my husband that I would never get over what had happened, I would never go through the normal stages of denial, grief and acceptance, and I would never forgive those who had done this to me. I told him I wanted to die and it should be my choice, and of course it is. I even told him that the wife he knew had already died and could not be resurrected! He told me "I want my wife back, old or new, I did not marry your body only, I married the whole of you". He is very wise and understanding and I am very lucky in that aspect. Then, I found this site and started reading. Not posting but absorbing everything I could about our LIVES, and the different trials and tribulations that we all go through. I have finally started posting, because I have decided that maybe I have something worthwhile to add.
I have created a website which is not quite up and running yet, called "thispatienthasrights" Legalities with the doctors, radiologist and the hospital involved in my care are attempting to quash it but I know through legal counsel that legally I have not overstepped any boundaries and eventually they will not have any say. They are just very powerful and are hoping I will lose interest (!!?!!) or go away. I believe that there is too often a lapse in medical data being imparted to the patient, nonfeasance at best, and this shortcoming in medical communities NEEDS to be addressed.
I have not overcome all of my fears and anxieties, as I still look at every person I come into contact with as someone who might want to hurt me. I am in no hurry to go out and about in the "real" world, although I know this will change because I have always loved to explore new places and so I am working on this shortcoming of mine. For many people anti-anxiety meds and anti-depression meds help tremendously, but I have many issues with drug allergies and I am attempting to keep a clear head and deal with things. I have undertaken writing a series of children's books, a total of 50 in the series to start, and I have completed the first 10 within the last 2 months (they are short obviously). When they are half done I will begin submitting them to publicists and hope they get picked up. I also have ideas for about a dozen or more that I am working on storyboards for. I am trying to stay positive, contributing, and interested in LIFE.
I am sorry for your depression and not being medically educated, I do not know if there is a solution for your physical issue of the inoperable hernia, but I do not believe that I would accept only a few doctors' determinations. That is part of what the website will be about. Have you spoken with a surgeon qualified in BCIR surgical procedures? Perhaps they might have a different outlook. Dr. Rehnke and his administrator Susan Kay of Palms of Pasadena Hospital in St Petersburg, Fla. are very willing and forthcoming with information, and there is a chat tonight Tuesday June 7, 2016 on the BCIR website that you could visit as a guest. Sometimes all we need is a little nudge to help us to remember that LIFE is really all there is, and we have lots to be grateful for; sunrises, sunsets, laughter, (and even sick humor), the freshness of a spring day, the warmth of summer, the crispness of fall, and even the sharp chilling cold of winter that reminds us we are ALIVE. I wish you a solution for your unhappiness, and I hope you know that everyone on this site is rooting for you. Most of all I wish you
Peace
Nancy
