Colleen deJesus

My story begins on Friday, April 20th, 2007. About noonish I started feeling draggy, tired, and yes...other flu-like symptoms. Came home and went to bed. Spent most of the weekend in that bed, tossing and turning, sweating and shivering. Like many, it seems, I had developed a "pimple" on my left butt cheek. We all get ingrown hairs and such and I never paid it much attention. Monday morning I followed the boyfriend to a repair shop, he was putting the pick-up in for some work, then took him on to his job. Sitting all that time was an adventure. It must have put enough pressure on the "pimple" because shortly after I returned home it broke. The smell was awful but I felt so bad I just put a towel down in the bed and went back to sleep. Late afternoon my boyfriends call woke me. I struggled to shower and dress. Met him at the repair shop. While waiting in the parking lot I suddenly vomited. That was it for me, I wasn't going to ignore the situation any longer. Once home I asked him to take me to the ER. My temp at the triage station was 102.9. Thankfully they didn't keep me waiting for long. The lady Dr looked me over, took blood and set up a time for at CAT scan, but she was pretty sure I had NF. She had to explain to me what that was of course. How many survivors knew what it was before we contracted it? She said that the local hospital was just not equipped to handle my illness so they were going to transfer me to the University of Maryland's Shock Trauma unit the following day. In the mean time I was receiving IV antibiotics and plasma. I have a bum ticker and have to take blood thinners, had to get all that out of my system before any operation could be done or I would run the risk of bleeding to death. I had to keep up the plasma treatment for almost 48hrs before they sent me to the OR. The infection was certainly growing. It had gone from my left butt cheek up into my left groin area and upper thigh. It was very swollen and hot. Finally off to the OR. I remember I kept apologizing to anyone who came near me because of the awful smell coming off me, I was just so embarrassed. I cannot tell you how long my surgery was. No one was able to be there with me that day so I don't know all the details. I remember becoming conscious and being aware that there was a tube down my throat. I started flailing and heard two nurses call my name to stop. I realized my situation and relaxed, one came and told me to just sit still and she pulled the tube from my throat. Not until then did I open my eyes. I stayed there for a couple hours then up to a room in an ICU unit. When the surgeon came to see me he explained that the original wound was so close to my anus that they determined that I had needed a colostomy because any bowel movements would have threatened the integrity of the rear wound. All told, I lost a fist sized chunk of my lower left butt cheek, the left side of my groin, (ou ter "lip" or labia majora, and mons), and a softball size hunk of flesh from my upper left thigh. The scarring is dreadful. There were no skin grafts, they just pulled all the remaining skin together and stapled it shut. Frankenstein's got nothing on me now! After 10 days of excellent care I was allowed to go home. I had two large open wounds, one in back, one in front. Dean, my partner, took a leave of absence from his job and did everything for me, he's been a true saint. Cindy, my visiting nurse, showed him how to care for the wounds. I had to be packed twice a day, (and still do). One of my side scars opened up and then there were three wounds to pack. As of today, the two wounds in the front are closed and only the one in the back remains. I go to see my surgeon Aug 8th, hopefully the last wound will be closed by then and we can schedule my colostomy reversal. THEN another 6 weeks and I'll be able to go back to work...if I still have a job. After reading all the stories I know how lucky I am to be alive. I would like to thank this forum for letting me tell my story, all the doctors and nurses at University of MD. Cindy, Katie & Antknee and Ms Vicki. Most of all, I want to thank Dean, for going above and beyond in every aspect. Love you all. Update, January 17th, 2008: Home from the hospital as of yesterday afternoon. Despite hoping to have my colostomy reversal in August or September it didn't turn out that way. Seems after the type of surgery I had they prefer to let the surgical site settle at least 6 months afterward before they go back in for a colostomy reversal. Ended up being a bit longer because my surgeon ended up on medical leave herself. I had returned to work on August 14th and was getting along just fine, though I wanted that reversal more than anything. I know that life was more than possible with a colostomy bag but, it would have never been the same. Anyhow, my surgery was set for Friday, January 11, 2008. The surgery itself went just fine, it's just the 4 days afterward tethered to a bed with wires that drives me insane. I'm terribly claustrophobic and it's just so hard to lay there. Was up and walking early Saturday afternoon, then doing a couple rounds a day, just to be off that bed! No food tastes right so even today I'm not doing much eating. And I'm nowhere near as sore as I was the first time. Now I have matching 8" railroad tracks down the middle of my belly. The opening where the intestine was tacked to my skin was left open, so I'm back to packing open wounds. At least this time I can do it myself. Once I see the surgeon in two weeks I think they are kicking me back to work, at least part time. I'll be thrilled to go. I don't relish sitting around here another month. Hard for me to imagine being so grateful...but I truly am. Grateful for good family and friends. And grateful to be alive. Thank you all for listening....................be well!