Lying. Sometimes I don’t give two shits who lies because everyone does it. We are human. What I do not forgive or forget is when someone lies to you about something so serious about your health and well being.
you research your heart out when you get diagnosed, with anything, not just cancer. You have such a small window to make a decision with every minute that passes time removed from your life, or possibly being to late. People telling you “Act now” you are already weird for being so old with this disease and not a stage 3 or 4. Or that nobody knows if the cancer is past a stage 2 until they remove your colon. FAP is scary enough but I always needed to understand what was happening and make the most informed decision, even if you die before it happens.
I knew I wasn’t going to live with an ostomy bag. I even changed my paperwork and had the surgeon sign it. NO PERMANENT ILEOSTOMY ALLOWED IF BCIR CAN NOT BE MADE. I was picking dying of cancer instead. I don’t care what people say to this, this is my body, I am allowed to do what the hell I want with it. I suffered a great deal this year, trying to figure out why everyone with a continent ileostomy is doing so fucking great compared to me. I have been to the Cleveland Clinic 2 times, almost going bankrupt in the process. I have been to countless doctors in Dallas at Baylor and Medical City. I counted on every word my surgeon’s office said to me, trying to make sense of this madness. I asked my husband to kill me flat out a few time in crying fits. I have lived some very dark fucking times from a torture device that has been inside me. But it gets better over time when the body gets used to a new organ that is basically a blockage created. I read people’s blogs and message board posts saying how over the years it gets better. People who love this thing. I could not relate, not yet at least. But the times I wore a leg bag with a slipped valve I knew I had to make this work, no way am I shitting outside of my body in a bag, ever.
I booked flights to the Palms for pouch scopes that never happend. 2 times. Once my father bought me a ticket with his last Sky Miles, the second my grandmother (who has paid for most of my travels to hospitals) paid my flight. The first time, if you recall I never saw anyone and the GI took the day off the next day to go fucking golfing. I never had pain management visit me. I was told it would be maybe 2-3 days when I had to get back on a flight 4 hours away in South Florida from St Pete to go home. I had no money to rebook or change a date. I was broke, poor and sick. I had no job, no way to pay bills and beyond poverty. I was still on my surgeon’s side and what everyone told me at the palms. “You have pouchitis and possible ulcers, get scoped somewhere and send us results.” I had 2 pouch scopes and everything was stellar. People with FAP don’t even get pouchitis so even the Palms were trying to wrap their heads around this.” Oh maybe the lighting is weird on the photos and we just can’t see what is going on”. I just kept going along with this all, I mean they were trying to figure my case out, right?! WRONG!
Fast forward to the worst I have been in my life. Drove 5.5 hours to Cleveland Clinic to see one of the best GIs, Bo Shen. The man has scoped over 200 BCIRS, that alone has to tell you something. He explained to me that the extreme violent gas and movement I have is from the small bowel that is wrapped around the valve. The one main thing that makes the BCIR different than that Kpouch they preform. And here It thought this would save me from future surgery, not having a slipped valve, what the BCIR is supposed to rule out by adding this step. That one thing is making my life worse. And who has time for more surgery to reconstruct a valve? With FAP every time we get cut open we risk having desmoids form, desmoids kill, they are almost worse than cancer. One reason I went with the surgeon I picked vs. the ones in Dallas that wanted this to be a 2-3 step procedure when a continent ileostomy in general should be one. I wanted one surgery and move the fuck on with my life.
I was scoped this past friday by Bo Shen after my guts were liquifying everything I ate, gas felt like it was ripping my body apart, intubating felt like intense cramps and acid burning my tissue, organs and muscle. I was losing maybe 1 oz of blood a day. After hearing the fucking word from the Palms of Pasedena about fucking pouchitis one more god damn time. He saw me 5 hrs after my scope at my follow up and said. There is NOTHING wrong with the pouch. You never had pouchitiis and if anyone tells you you do, they are wrong. You have FAP, not Chron’s or UC, those people get pouchitis. So with that being said I shit in a cup and off it went for C.diff testing and me on my way home. Thinking I had to schedule surgery to remove this pouch, I could not live this way. On my way home around 6pm on Saturday I got an email saying ” You know what Vanessa, it is POSITIVE!” I tested positive for C. difficile. A deadly infection that has killed over 30k people a year and is an epidemic right now. But how does one get c.diff when on antibiotics? I did my research to find out the 3 antibiotics given this whole year for this fucking “pouchitis” cause C.diff.
Now here comes the shit. Something so rare with no colon I was told by her and so rare to ever get on antibiotics about 9 months ago when they were trying to figure out what was wrong with me. A girl, who had surgery when I did, and has become a friend. Has been just as sick, actually worse since she has UC. She was about to be put on Cancer meds to see it would reboot her system, her doctors saying she now had Chron’s and mis diagnosed they were just as puzzled. After her Cleveland Clinic appointment, just 4 days after me, was also diagnoed with C.diff. “STOP TAKING CIPRO ASAP” her email said. The drugs we are fed are killing us basically.
My mother after hearing this got into her political, advocate way. And called Susan Kay at the Palms. My mom speaks loud only due to being on a cell phone. My mother never yells. Far to educated and refined, with 2 masters degrees and from Chicago 😉 We are an upper class family, we debate loudly, but don’t cross us we will not tolerate your shit. She hung up on my mother the minute my mom asked her is she thought she was at fault for my well being. After my mother politely called her back and said “The call must have dropped” (knowing she hung up on her after being yelled at for asking a simple question) She yelled some more, my mother asked her to calm her voice there was no need to get heated. Susan Kay said I wanted them to change their policy and that wasn’t happening. They once tested for C.Diff but stopped since studies showed it isn’t common to get when a colon is gone. Bulllshit. Cleveland Clinic sees this all the time, they also see C.diff form in just the valve. What medical sham is this shit ? No wonder they have no medical journals. The CC doesn’t even consider the BCIR “real”. And now I know why. The Palms of Pasedena is a for profit hospital. My aunt just left the ER for something, not the point, point is on her discharge paper it said TESTED FOR C.DIFF. She had nothing wrong with her bowels, it is the hospitals responsibility to test since that is where it breeds.
I work in advertisement so I get that it goes a long way now. What I don’t get is how someone can fuck up repeatedly for the sake of other’s health and possibly kill them. ” In retrospect I should have ordered a C.diff test for Vanessa and ashamed of this hospital the 2 times she was supposed to be seen” she finally admitted. Susan Kay I doubt has any real medical experience besides being a spokeswoman for the BCIR. I now have to look into another surgery, at Cleveland Clinic to possibly get a new valve, to improve my quality of life. I will end this here. But always fight your doctors, it is your life and happiness at hand.