I have two fistulas that are ruining my life. It hurts tremendously to use the restroom and since one is connected to my outer labia it hurts to urinate too. Sometimes it hurts so much I shake uncontrollably for a few minutes in the bathroom. My sex life has gone to hell because of them and I keep waiting for my fiancé to throw in the towel. And the medications I’m told is the old standby for closing up fistulas is Remicade and I’m freakin allergic.
Right now I’m on 100 mg of 6MP and 20mg of Pred, this combo seems to be helping the Crohn’s- I have less D and only go one or two times a day and I have lots more energy but they are doing nothing for the fistulas. I cannot take Remicade, I tried Humira and it didn’t work. Is there hope for Cimzia? I am waiting for insurance auth so I can start it. I hate this; it feels like there is no hope once Remicade doesn’t work out.
If I only have Crohn’s in the last few cm of my rectum and no where else, wouldn’t colostomy be a cure? I know ostomies come with their own set of problems but to me, it seems preferable to the constant pain and ick that is peri-anal fistulizing Crohn’s. I know they wait till the very very last possible second for surgical options, especially for people my age but what about a top-down approach to the disease??
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: 6MP, 20mg Prednisone, Zoloft, Lialda and Imodium