Hey everyone, I'm P.J. Sheesh, I really don't know where to start but here goes. I was diagnosed with UC around 2003 during college. I struggled with getting it under control for the first 4 yrs. Many doses of Prednisone, sulfasalazine, asacol, and immuran. Things would calm down for a while, but eventually flare up. Fast forward to '06/07, I deteriorated to the point that I weighed about 135 lbs (normally 170lbs), and basically living on very limited diet. My GI suggested that I give Remecade a try. At that point I was willing to try any drug, no matter the risk. As luck would have it, the Remecade made me feel better within days of my first injection. My disease seems to be very persistent. In order to keep it at bay, I received Remecade every 6-weeks, @ 10mg/Kg. My life was normal. I ate and drank whatever I wanted, was very active...I love to wakeboard and be on the water, and worked out. In May of 2013, I started to notice some blood in my stool and immediately notified my GI. They thought it could be because of a lack of fiber in my diet. Adding more fiber made no difference and quickly I knew I was starting to flare. More phone calls to the GI, canasa, back on prednisone, cortisone enemas, nothing seemed to slow it down. By the last week of June I had lost 40lbs and was in the ER. I spent 7 days in the hospital, came home and was off work for another 6 weeks.
While I was in the hospital is was discovered that I had developed a resistance to the Remecade treatments. My GI suggested a new biologic drug called Symponi. The great part of this drug is that I could administer it myself via an auto injector. I've been on it for about 7 months. Now, I'm not saying that it hasn't helped. I have gained some weight..up to about 148 lbs. But I still have UC symptoms, mainly stomach cramps (some that bring me to my knees)and unformed stools. When I started Symponi my GI basically told me if it doesn't work, that it would probably be time to think about surgery, but in the same sentence he said that I need to give the drug a fair shot and be patient.
When my GI mentioned the possibility of surgery, he recommmeded another GI Dr. at the Cleveland Clinic. I met with him in early December where he advised me to give the Symponi "a few more months" but to give him a call if/when I new it was time for surgery.
Well, to be perfectly honest, I'm at the end of my rope. It's getting close to being a year without much improvement, and in the last couple weeks, I feel like my health has taken steps backwards. I’d rather have this surgery while I’m in better health rather than waiting until i’m in the situation I was in last summer. AND, I want my life back.
Also, I just want to mention, Pluot (Liz), I read through your entire blog. It gave me the extra push that I needed to make my decision. I have my consultation with the surgeon on Thursday. Thank You.
Original Post
