At 38 I was diagnosed with Ulcerative Proctitis. As a full time working mom of one it was difficult to understand what was going on at first. Thankfully I have a very supportive husband who is now the only worker in our family as I take care of our homeschooled son and try to get my health under control.
Some more about me:
I am still running on occasion with my husband and son as we like to do local 5Ks and half marathon outings. The UC has made it difficult to practice and makes my times not so great but at least I am proud to be out and still trying. I do make sure I know where every porta potty station is.
Currently I have loose and bloody stool and occasionally its only blood that comes out. I get very crampy in my hips and sides. I have not been running a temperature but I do get tired easily.
Remicade and Then What?
I am a 39 year old female that was diagnosed in May 2012 with ulcerative proctitis. This came out of nowhere in the sense that no one in my family has every suffered from this before. While I had symptoms for several months including loose and bloody stool, I didn’t really know what was going on. I finally made the appointment with my GI who did a colonoscopy and diagnosed the UP. I was given a prescription for Canasa but due to cost never had it filled. The UP finally just went away on its own and I was in remission until February 2013 when the symptoms returned. At this time I was in full flare and in May 2013 ended up in the hospital for four days. At this time I was given a CAT scan and was told my UP had progressed to full UC – left sided.
Since that time I had been on enemas and original round of prednisone. I have just had my third round of Remicade and am hoping it will take. Between rounds 2 and 3 my flare came back after about three weeks. At the follow up appointment after my hospital stay my GI did a sigmoidoscopy and stated that my colon looked healthier and was not in flare. I stayed awake to see it and it did look a lot better than previous images I’d seen. He took some biopsies, all of which came back cancer free, but were still inflamed. At this point we opted to start Remicade.
If the Remicade doesn’t work, should I explore the possibility of surgery and if so, what exactly does all of that entail? I just feel at nearly 40 I am too young to live the rest of my life with a colostomy bag. Is it easy to care for? Live with?
Any medications that I have taken seem to only have worked for a limited time before my flares would start up again. I don’t feel to date that anything has truly worked.
written by Mrs. K. Shane Boen
submitted in the colitis venting area