I'm a 21 year old female at wit's end with this disease! At the start of my sophomore year in college (2006) I started exhibiting symptoms, (i.e. blood in my stools) but due to fear convinced myself it was a hemorrhoid and went about
I spent the following summer sick--eating once a week at most, dropping quite a bit of weight, and just being all around miserable. On August 30, 2007 I had plans to go to my younger brother's football scrimmage, but had spent the night before up with the worst stomach pains I had ever had. That morning I went to the bathroom and to my surprise saw a toilet full of blood.
My first thought was cancer, since my grandmother had passed away from colon cancer, and I couldn't breathe. Once I calmed down, I called my parents and my step-mother made an appointment for me with an attending GI in her hospital. I waited two hellish weeks to see him, searching my symptoms on every internet search engine in an attempt to self-diagnose which, as I'm sure everyone knows, only makes matter worse. When I finally saw him, he scheduled a colonoscopy (YUCK) and much to my delight did not confirm my idea of cancer. Instead I had this disease, ulcerative colitis and GERD. I started on asacol, which didn't work and moved to prednisone by Oct. 2007. I HATED it, it made me crazy--totally out of my mind or out of sync with my own body--but it did the trick! I stayed on it for the next couple of months. In Dec. 2007, I experienced an intestinal blockage and spent the week before Christmas in the hospital. I left the hospital on quite a bit of pills (asacol, prednisone, lasix, bentyl, protonix, rowasa)By the second week in Jan. I was tapering prednisone and so happy about
it. Everything went well for around 2 months. One Thursday evening in March 2008 I noticed I was abnormally thirsty, I ended up drinking 2 gallons of gatorade in a few hours and still wasn't satisfied. The next day I was dead tired, I couldn't even stand for longer than 2 minutes, I also noticed that if I ate anything I was in the bathroom within minutes. I went home to my mommy and spent the weekend, progressively getting worse, but convincing everyone I just had the flu. By Tuesday morning I could barely
open my eyes or even take a breath and any movement or touch made me nearly scream in pain. I was rushed to the ER and don't remember much after that. I woke up to find out, my hemaglobin was at 4, I desperately needed a transfusion and my parents begged the doctor to not remove my colon. I spent the next two weeks on TPN because I couldn't eat and shock therapy of 600mg of prednisone, insulin, a coctail of pain meds, and the one drug I was dreading...6mp--it scared the hell out of me. I found out that I narrowly missed being in a coma from severe blood loss and was suffering hemmoragic colitis...fun fun fun. After two weeks of the hospital, I begged to go home and promised to come back at the first sign of any problems. Other than what seemed like the 30lbs I had put on in the hospital and the weekly bloodwork, I was okay. The following month I was back in the hospital for a few days with the flu. As I was tapering prednisone, my symptoms returned so the mg of my 6mp was increased and the symptoms abated. That brought with it a host of other problems. I couldn't eat, I couldn't even get out of bed because I was so sick, not to mention I was losing so much hair. In June 2008 my CBC revealed a drop in my WBC to about
3, so I had to discontinue the 6mp until it came back up which it did, but within days of continuing my WBC had dropped to 1 so I was told to stop it for good.
In July 2008, I spent a week in the hospital with pyelonephritis--complication of the impaired immune system and of course the stress brought the UC back on! I went back on the prednisone, which unfortunately did nothing except for give me a moon face and commenced on the journey to starting remicade. I went through the preliminary testing and preauthorization and started it in September 2008. In October 2008, on a Saturday night or 4:00am that morning I was blind-sided by this pain in my stomach. I was throwing up uncontrollably, couldn't even stand upright, and eventually passed out from the pain. My poor boyfriend rushed me to the ER, where I found out I was having another flare. I spent the next week in a dilaudid stupor and of course prednisone shock therapy! I didn't even leave the hospital in remission. My doctor informed me that on top of my colon being inflammed, loops of my small bowel were also inflamed. November rolls around and I'm getting my 3rd remicade infusion when I start to have vasopspams--a super rare side effect. This all leads me to the present, anticipating my fourth remicade infusion, still no remission which doesn't even seem to be in the near future, and so fed up with this disease. I'm ready to call in quits on the conservative route and get the j-pouch.
Sorry that was terrbily long-winded...