Soooo, whats wrong with you? they say.... For the sake of retiring from the repetitive job of a broken record Im going to get it all out here now. And as much as I love sympathy that is not what Im asking for by doing this. I have been battling with ulcerative colitis for almost 7 years. Much of that time I spent in remission clear of symptoms. Well as of the last couple years my time in remission between flares has been drastically reducing. Over the years I have been prescribed every single medicine there is to treat UC. They either didnt work at all or worked for awhile and then I developed antibodies causing inactivity and was taken off. A couple months ago the last one stopped working. I was then informed by my new wonderful Parkview DRs of a new medicine which came out in February that has a 30 or 40% successful rate called Entivia. Problem... its thousands of dollars a month and I have no insurance. Nor will I be getting any because I was denied for disability and Indiana is only offering Medicare to those approved for disability until they write a new bill for HIP. Which will take about a year, so I was told. Parkview Charities is working on getting me assistance in the meantime. But of course that takes forever and requires me to jump though all kinds of bullshit hoops. A couple months ago I decided to discontinue my pain medications because I felt they were taking a droopy toll on my mind and body. I also believe they were masking some of my UC symptoms via constipation. Making it hard for me and my Dr to know what was really going on inside me. Well that landed me in and out of the ER several times dealing with withdraws for I was on some serious shit for a year and half. It ended up taking about a month for my mind and personality to get back to normal. Now, as of a several weeks ago I started to get sick again. Started with more frequent daytime BMs. Then onto bloody BMs. Little time passed and I started to have pure blood BMs at times and waking up in the middle of the night to go as well. Most people dont know this but your colon is supposed to pretty much turn off while you sleep. Waking up in the middle of the night and needing to poop is a good sign something serious is probably happening. On Tuesday I called my Dr to let them know I was really sick again. They called me in that day. They decided I needed a jump start and admitted me into Parkview North immediately. The thought that day was that I would be put on super IV steroids and be sent home in a couple days with more steroids. This way we could buy some slightly healthy time until I can get financial assistance for the Entivia. Well that didnt go as planned. I am still passing lots of blood so they naturally want to keep me until Im closer to remission. As of yesterday I was put on an experimental treatment of 3 heavy duty antibiotics which I will take for 3 weeks... along with the steroids. The idea is to kill all the good and bad bacteria in my body so it can reset itself. I should know if this is starting to work in about a week and a half. All and all Im still really sick and I am incapable functioning properly. They hope to have me discharged Monday or Tuesday. The only problem with that is that these meds will not be in full effect by then. But it doesnt matter because I dont have insurance so they need to get me out of here as soon as possible. Oh and they have had me back on heavy opiates this whole time so Im sure I will also start to withdraw the second I get home because they said I cant have any pain meds when I leave. A little good news... Meeting with a colon rectal surgeon Monday to discuss surgical planning for the J-bag. Hopefully the medication treatments to jump start into remission work so I can buy enough time to do the surgery in September. If the jump start and/or Entivia works or doesnt work it doesnt matter because it is inevitable that I will have this surgery at some point in my life. A J-bag is a seriously hard surgery. They start by removing most of my colon and leaving me with an external colostomy bag for 6 mo or completely healed. Then they go back in and split, fold, and stitch the last few feet of my small intestine into a new colon and removing the colostomy bag. It is two surgeries and depending how I do for the second one it could become three. All together lots of time in the hospital for a total of 1 year including recovery. So Im in the hospital and I feel helpless, alone, weak, sick, tired, in pain, hopeless like its never going to end. I cant sleep. I cant really eat much. My brain isnt working properly because of the steroids. Im very anxious and angry and sad all at the same time.
Posted on: Sat, 03 Jan 2015 21:25:10 +0000
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