I was diagnosed in 1976 at the age of 10. I am now a 46 year old mother of two grown children and happily married (most of the time) for 25 years. I have had my uc go from proctitis to full blown ulcerative colitis and now back down to more like proctitis. Have been on many different meds, will get into that later.
Some more about me:
I grew up on a farm and started driving school bus when I was pregnant with my first child. I have been driving the bus for 23 years and haven’t killed a kid yet they can prove!! I love the kids as if they were my own, most of the time. My friends and family say that they always know they are going to have a good time when I am around as I don’t know any strangers and I love to make people smile and laugh.
Right now I am dealing with about 5 stools per day with the wonderful bloody mucus. It has been better and it has been worse.
UC and Kidney Cancer
I have a very unique situation and that is one reason I am writing my story. I hope to find someone else out there with the same situation.
I had surgery to removed my inverted appendix and resect a couple of inches of my colon 36 years ago. Then in Aug. I started having pain deep in my chest on the right side. The pain moved to more behind the shoulder blade in a few days. Called the Dr. on Monday. After we all had pretty much agreed it was my gallbladder. Saw him on Wed. and had to go back on Thursday for a sonogram to be sure. Got a call that afternoon to come back on Fri. am for a CT. By noon on Friday I was sitting in his office with him telling me I had kidney cancer. I had a radical open nephrectomy in Sept. I was stage 4 grade 3 with metastises to the adrenal gland and one node was positive. I had to be removed from the drug study and the 6mp as they lower the immune system which could allow the cancer cells to grow again. That is the problem. UC they want to lower my immune system and for kidney cancer they want to boost it. I am a catch 22. I am looking for any one else like me. My oncologist, internist or surgeon had never dealt with the two of these diseases together before. Please help me in finding some help out there. I tried the NCI but they weren’t interested and the cancer kicks me out of uc drug studies and the UC kicks me out of studies for cancer drugs. Kidney cancer does not respond to chemo or radiation so drugs are the only defense at this time.
I began with azulfadine and would use the cort foam enemas for bad flares. I then went to sulfasalazine for a number of years with a boost of prednisone for flares as well. Then I went to Asacol which did not help long. My current doctor switched me to Lialda, 6mp, and I was getting golimumab shots in a drug study. I was excited and I was in remission for several years.
written by Janene G
submitted in the colitis venting area