ULCERATIVE COLITIS: TOTAL PROCTOCOLECTOMY WITH ILEOANAL J-POUCH

I'm getting ready to go for my annual flexible sigmoidoscopy for follow-up and it dawned on me that I haven't written about my ulcerative colitis and ultimate surgery for a long time. Most likely that's because I don't think about it much anymore, but perhaps printing my story again will give someone else out there hope.

I started having symptoms of ulcerative colitis in my 20's. I'm 65 now. I would have bouts of cramping and diarrhea and since my grandmother had had ulcerative colitis, it was always in the back of my mind. It wasn't until I began having continual diarrhea and ultimately had bleeding that I was diagnosed with a colonoscopy. That was 20+ years ago. I went through several terribly difficult years while being treated with various medications. When the last medication, 6-mercaptopurine, caused pancreatitis my GI doctor suggested surgery. The surgeon I consulted concurred, and I was scheduled for the above procedure. I arrived for my pre-op only to be told that my surgery had to be cancelled since the surgeon had gone out on an emergency medical leave. He was the only one in Orange County Kaiser Permanente that could do the surgery at that time. It was 1996. I broke down then and there. I was at the end of the line. I had to make 20-30 bathroom trips a day and I was still trying to work the whole while. My husband then intervened and began calling Kaiser. They suggested that I go to San Diego Kaiser to a new surgeon there, Dr. Lynne Weston. We made the appointment and drove to San Diego. She'd memorized my entire medical history and when I got there she told me things I'd forgotten had happened over the years. I had the utmost in confidence in her even though she was a very new surgeon, and I agreed to have her do the surgery. She has since left Kaiser but is still in the San Diego area.

August 14, 1996, my wedding anniversary, I went in for surgery. I won't tell you it was easy. It wasn't. It was a long, painful recovery, but worth every bit of pain because I got my life back. Since then I've become healthier than ever, I work, I'm busy all the time, and we are able to travel the world again. Having surgery was the best decision I ever made. This may be TMI for some, but I still have bowel movements 6-12 times a day based on the foods I eat. Artificial sweeteners, gluten, wine, and a few other foods cause me to have to go more often. BUT I have complete control, so to me this is no big deal.

So, now I'm off to see Dr. Kathy Akashi at Kaiser in Anaheim for my sig. Once you've had the diagnosis of ulcerative colitis, your chances of developing cancer go up every year, so you must be checked often. There's still a tiny bit of colon tissue in there, and usually there are a few little inflamed areas that have to be biopsied, but so far so good.

Ulcerative Colitis Sucks Big Time

This is me. Way back when. Back when I didn't have Ulcerative Colitis and didn't think I'd ever have any illness. My first symptoms started when I was in my middle 20's, after my first son was born. The Dr. treated me with Librax for "nerves" and it went away. Off and on over the years the symptoms came back. Then in 1994, for whatever reason, UC came to stay. I tried every drug and treatment available, and after the last treatment with a chemotherapy drug gave me pancreatitis, my GI Dr. advised surgery. In 1996 I had a total procto-colectomy and J-pouch procedure done (big words, I know--even bigger surgery). My UC was CURED! Gone forever! Or...so I was told then. But now, I have a new Dr., had a thorough evaluation by flexible sigmoidoscopy, and lo and behold, the UC isn't gone after all. Oh well. I still feel relatively good and I do have my life back still. I'm able to do everything I enjoy, and I can travel. Big time important! But, arthritis has flared up along with the UC flare up and it isn't much fun. Now I'm on medications again. Hope not for long. Hope the J-Pouch holds. Hope there aren't more surprises in store. Hope is the thing with wings that perches in the soul......(Emily Dickinson)