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Thank you for the add! I live in New Jersey and have had UC for almost 18 yrs. I've been able to manage my UC with mesalamine drugs such as Lialda, Canasa, Rowasa and Asacol. I've only ever needed to be on prednisone 4 times and for less than a month each time. I went for my routine colonoscopy back in June and my GI found low grade dysplasia. He thought it could have been because I was flaring during the exam so he had me get a second opinion with Dr. Ellen Scherl at NY Presbyterian. I did a short round of prednisone to get my flare under control and then she did her own colonoscopy and also found dysplasia. She has recommended I meet with Dr. Sonoda, a colorectal surgeon also at NYP, to discuss a re-section or colectomy. I am new to all of this and since I had been able to manage my disease well since I was diagnosed I didn't think surgery would be in my near future! Needless to say, I am scared.

My question is, does low grade dysplasia always mean surgery?

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Thanks for your reply, Scott! I am totally ignorant about surgery options.  Since the dysplasia is only in my rectum, would that have to remove my whole colon? What are the different types of surgeries? I've only heard of the J-pouch but I'm not even entirely sure what that is!  Are there any good websites I could refer to to get more information?

Laurie McMahon

There are certainly surgeries that remove just the rectum or recto-sigmoid colon.  A colonic J-pouch can help with bowel function after such a procedure. The problem is that the remaining colon is at pretty high risk for developing cancer, or (if you're lucky) dysplasia. Given the message dysplasia sends, most people with UC choose a total colectomy at that point, while others (especially if they are feeling well) may delay the surgery. If you have a total colectomy your options are J-pouch, K-pouch, or end ileostomy. A J-pouch let's you use the toilet more-or-less as you always have. Frequency usually increases to about 4-6 soft stools daily, if all goes well, with little or no urgency once things have settled down. Various things can go wrong, of course, and that's mostly what you'll read about here, but satisfaction rates are high. Although mine was done it ha single surgery, two or three surgeries are more common today. A J-pouch is essentially an internal holding tank constructed from your ileum (the end of your small intestine).

An end ileostomy is simpler: the end of the small intestine drains though the abdominal wall into a plastic bag, which has to be emptied periodically. A K-pouch is an internal pouch, like a J-pouch, but it exits through the abdominal wall. It holds back the stool until a plastic tube is inserted to empty the pouch. It's a helpful option particularly when the anus or anal sphincter can't do their job.

If I were in your shoes I'd find a very experienced, well-regarded colo-rectal surgeon and get the total colectomy with a J-pouch. The colon you'd consider saving has a good chance of being doomed anyway, and the risk of developing cancer is not small.

Scott F

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