I am 68 years old. I have a permanent ileostomy due to severe UC. I also have a daughter who suffered with UC for 12 years before having a colectomy with j-pouch.
How Colitis Surgery Saved My Life
I suffered with undiagnosed UC for eight years. I had many colonoscopies with biopsies and no diagnosis. In July of 2009 I was misdiagnosed with Crohn’s. My GI put me on Asacol, which caused a reverse reaction and I got much worse. I took 6MP, which did nothing. Took several infusions of Remicade, which helped with the first infusion and then quit working. Did a four day stint in the hospital in November due to dehydration and anemia.
By May of 2010 I was terribly sick, 20-25 diarrhea runs to the bathroom a day, severe blood loss, dehydration and severe pain. I was hospitalized May 7, 2010. Eleven days later I had my colon, rectum and anus removed and a permanent ileostomy. I did not have to make the decision to have surgery, my doctors insisted that it was NECESSARY! My surgeon told me that the inside of my colon was completely gone.
Pathology revealed that it was absolutely UC. However, it also showed that I had Kaposi’s Sarcoma, which is a cancer found in those with severely suppressed immune systems, as AIDS patients. Mine was the result of 6MP and Remicade. Because my lymph nodes were clear and the colon was removed and the cancer had not perforated the colon, I did not have to take chemo or radiation. My surgery was done just in time!
I was down to 98 lbs. after surgery.
Today I am pain free,
back up to my pre-UC weight of 123,
feel wonderful and have my life back!
My daughter has had her j-pouch for eight years and has done wonderfully. She conceived a baby after her surgery. She now has a four year old and will have another little one in May! :) Neither of us would go back to our pre-surgery life, which was NO life! Neither of us was EVER in remission.
The ileostomy required a period of experimenting with various products but now I get seven days wear between changes.
I certainly prefer being a “bag lady” than living with UC!
Colitis Medications Used:
Asacol produced worse symptoms
Prednisone worked but destroyed my bones
6MP did nothing
Remicade only worked for one infusion
written by Louise
submitted in the Colitis Venting Area