Yes, my entire time with UC the worst part of the disease was the last 2cms of my rectum. Once it did spread to my descending colon and I was hospitalized for 9 days of bed/bowel rest. My last flare, which lasted 2.5 years until surgery, I was prednisone dependent. On prednisone I could work and have a life but once the taper reached 5mg I would flare again. My flares consisted of vomiting, fevers, and bloody diarrhea. The illness cycle that got very wearing, I missed having a healthy active life, and I feared the consequences of long term steroid use. Once I reconciled with myself that I was prednisone dependent and had reached the end of my medical options, I consulted with a surgeon. I consulted with a top surgeon and he was the FIRST doctor who told me that if I had surgery I would be fine. My GI was opposed to it; he said my life would be worse. I suggest that if you had a top colorectal surgeon tell you that you would be worse off after surgery that you should consult with another CR surgeon. Second opinions are important. If you need a recommendation of a surgeon in your state that is highly recommended, go to www.j-pouch.org It doesn't mean you have to get a jpouch; there are lots of ostomates there as well. The important thing to remember in all of this, according to my surgeon, if your quality of life is low, it's time for surgery. No matter what you decide I think a second opinion is in order. You haven't had relief from this disease in quite a while.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free