Posted 6/7/2011 2:36 AM (GMT 0)
I have a billion questions going through my head but my GI's and Surgeons don't really have any answers for me that are real life. I am a 26 year old female. I was diagnosed at 10 years old and have been fighting ever since. As a pediatric patient, prednisone, 6mp, Remicade, a few PICC lines and some hospital stays kept me going between yearly flareups. Once I turned 18, it seems like everything has turned on me with the exception of prednisone. I went into anaphylactic shock after several successful Remicade treatments and have developed allergies to any medications with acetemenphen, IB Profen, Asprin, codeine and more. I have exhausted all treatments and have been told by three GIs and two colorectal surgeons that surgery is my only option left. I'm terrified because they say "all or nothing" the large intestine, colon and rectum will all be removed. I know it needs to be done but I'm 26, single and have no children. I'm scared that th surgery will keep it that way. But I sleep all day everyday just to avoid the reality of my Crohn's Disease. I know I can't live this way either.
Basically, those of you that have a bag, how hard mentally and physically was it to adjust.
Those of you that have a stoma with irrigation, is it painful for the 'flushing/enigma' that you have to perform each day?
I feel for my lifestyle, a colostomy with irrigation would be better but I haven't gotten an answer from the Drs on whether I have a choice because of how extreme the inflammation is. Please. Anything from people around my age and or situation will hopefully put my mind at ease, at least a little. I just led a very active lifestyle including skiing & wakeboarding (I bought my first boat last summer and don't want to have to give it up because of this), I have 3 horsesand ride one of them regularly and I work at a ski resort in the winter so snowboarding is a must. Being this sick prevents me from enjoying all of this most ofthe time but will a colostmy bag with or without irrigation make it impossible?