I'm planning on the surgery. I've been on the Remicade (and many other meds) for two full years and I am still suffering from inflammation in the last few centimeters of my rectum. My quality of life is much better with the Remicade than without, but not what I want it to be. I feel rundown much of the time and my mornings are still very bathroomcentric. Also getting REALLY sick of my toilets being all stained from the purple of my Lialda and Canasa unless I am constantly scrubbing the bowl.
My GI says, and I concur, that with the possible side effects of the meds (and them not really knowing the long term effects of Remicade yet), since I am not getting 100% relief and healing, since my meds and the disease are at a face-off, it's time to remove the colon.
I am hoping to do this over the winter (much better to be out of commission during the part of the year I don't want to going outdoors anyway!) and am saving money like crazy to cover my expenses while I am out of work and looking for a surgeon now.
Now that I've made my decision I am anxious to get going. I don't feel that the years I tried to avoid surgery were in vane -- I really had to feel I tried everything I could and I just wasn't ready to go down that path yet. I am now. There are really no new meds in the pipeline, just different versions of the same old same old.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Oste
openia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)
16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro
Post Edited (Meesh) : 7/9/2009 5:53:15 PM (GMT-6)