Is your doctor recommending the removal of your rectum as well? I have Ulcerative Colitis as well and I believe if you are going to have your colon removed you should be having your rectum removed as well. When you have your rectum removed you can not have a pull through procedure but need to have something like a j-pouch procedure or permanent ostomy.

There are a lot of other things to consider and talk about like type of surgery, surgeon, where to have the surgery and so on. If I were you I would have the surgery as you are eventually going to need it and I wish I'd had mine sooner than I did. I don't know anything else about your health or life. You have come to the right place to ask questions.

Please keep in mind that this is a support site and most of the people on here are having problems and most people having the surgeries don't. Plus there are people that don't have problems that come back to help those that still have problems.

Welcome Aboard!

I was in the same boat as you a few years ago. With my UC under control for 15 years, I had a routine scope done to hear that I had a small area of indefinite dysplasia. At the time, they weren't sure if it was low grade dysplasia or just inflammation. We waited and did another colonoscopy 3 months later, and then I had low grade dysplasia throughout the entire colon. At that time, I was told that it needed to come out. Like you, I wasn't sure, but decided to go through with it. By the time they removed my colon 2 months later, there was high grade dysplasia throughout. Don't wait! Dysplasia can progress quickly and you don't want it to progress to the next step. So happy to know that I don't have to worry about colon cancer for the rest of my life.

eagle99,

I had virtually the identical picture as you prior to my colectomy in 1992. 20 years of UC. My last scope in 1991 showed LGD, and inflammation throughout the entire colon. The UC was manageable for the most part at the time.

In the 9-10 months between my last scope and the colectomy in April 1992, I deteriorated badly, to the point where I was on 60 mg prednisone just before surgery. During that period of time, I waffled on the decision on whether to have surgery. By the time I made up my mind and scheduled a pre-surgical appointment, the surgeon I originally consulted with, who was then arguably the best in the USA and did the 1st K pouch surgery in the USA, told me he would not cut me until I lost 10 pounds. This took another couple of months.

In most cases, UC gets progressively worse, and this is apparently your history as well.

When my colon was finally removed in April 1992, my surgeon told me it was dissolving in his hands as it came out. It would have perforated had I not had surgery, almost without any doubt. If you should perforate, you can/will get toxic megacolon. If you do, whether you will survive it and live, or not, is a roll of the dice. And you will have no advance warning from your body if that happens - until your abdomen starts to swell and distend, and you get feverish.

The only regret I have is not having had surgery about 5 years sooner. I had the same procedure your Doctor is describing and my Doctor recommended. I will not lie to you - the surgical process and temporary ileo, and the aftermath for about 6 months, are going to be a little rough. But my life since surgery is much better, despite some issues with my pouch.

If I were you, I would be getting surgical consults right away. Talk to 2-3 surgeons and bring your scope and biopsy reports. Good luck!

I too had LGD in my colon, rectum area. Do your homework, ask lots of questions and above all get a surgeon who is really good at doing colon removal and j-pouch surgery. I was lucky that my surgeon was local and also specialized in laproscopic surgery so my scar is only about 2" long. It is a big surgery and one not to take lightly for sure. I had my surgeries last Feb & April and one year later finally feeling good. Some people do have problems but alot don't. Keep us posted on your decision.

Thanks for all of your responses.

I traveled to Cleveland Clinic for consultation with CR Surgen (Dr. Dietz). He wants to remove colon with 2-step J-pouch surgery. Also, getting second opinion on biopsies for dysplasia from CC pathologists. He also took biopsies around my lower rectum.

They are planning on open surgery. Has anyone had laparoscopic procedure from CC? I plan to find out if that is an option.

Currently waiting on results from CC pathologists and trying to decide best course of action. I have no previouse history of CRC in my family, but my parents and older brother died of different types of cancer.

In my case I'd had 2 previous abdominal surgeries so don't believe I had any other options as I already had adhesions to deal with as they were all around the same area. Another reason is they might want to get in there to get a good look to see if everything in there looks ok. I'm sorry your parents and brother all died from cancer so if it were me I might want him looking inside me why he was moving every thing around to see if all was looking right from the outside. I've heard some strange cancer places.

I'd say ask him. I'm sure I've heard his name on here and there are those that have had him as a surgeon. You might want to start a topic looking her for people that have had him do their surgeries.

Are you seeing a GI there too? Or one at home to talk to about this. I discussed alot with my Internist as she has many IBD patients and some j-pouchers.

Take care and please keep us posted.

Eagle,

I had the 2 step open surgery. It's pretty rough and you will have the temporary ileo for 3 months. I think you are doing the right things, going to CC and getting second opinions on the biopsies. You are also asking the right questions.

Just keep staying on top of things as you have been, because you are at a critical stage of the disease, one where the patient usually has to make the same decisions you are now faced with making. The cancer history in your family is concerning, but whether or not it's there things can get worse and you can be in bad shape or have cancer if you do not have surgery now. It is something of a dice roll no matter what you decide to do, but you try to make it an educated dice roll and hope for the best.

Good luck and keep us posted on what happens.

Your situations sounds VERY similar to mine. I had UC under control, officially diagnosed in 2011. My initial colonoscopy to diagnosed UC showed high grade dysplasia. After rounds of cipro and flagyl, it went to low grade, then none. I was taken off the meds and two colonoscopies later (all within the year), had high grade dysplasia again. I had my entire colon and rectum removed with J pouch creation on November 2, 2012 and had takedown exactly 6 weeks later, December 28, 2012. I returned to work full time on January 17th. I've had good luck with the surgeries and getting back to a 'normal' life, but it was a little frustruating at the beginning knowing I had to have this done for another reason besides my UC being out of control...but I've gotten over it. Things are good now.

Your situation is almost exactly like what I went through. However I was diagnosed with high grade dysplasia.

I went to the Cleveland Clinic for my first procedure. Went septic because the surgeon did not put drains in me after surgery. Keep in mind, Cleveland Clinic is a training clinic. The Dr. you think is doing the procedure just maybe facilitating it. I would never recommend the Cleveland Clinic based on my experience. I would suggest finding the best surgeon close to where you live. There are a lot of good surgeons. You have to feel comfortable with the surgeon. Just because Cleveland Clinic comes highly recommended does not mean it is right for you. The right surgeon makes all the difference. Please feel free to email me directly with any questions or specifics about my Cleveland Clinic experience.

Good luck!

My situation was similar. I've had uncontrolled UC for 11 years. My last colonoscopy in February showed extensive colitis and regions of low grade dysplasia. My doctor insisted that I meet with a surgeon.

I had the first part of the two-part surgery (ileal pouch-anal anastamosis) in May, and they actually found a small cancer in the pathology (contained, thankfully). I don't know how common this is, if at all, but had previously read some journal papers about it.

I had a laparoscopic procedure at the Mayo Clinic in Arizona. I have three 0.5" scars + the temporary ileostomy and only spent 4 days in the hospital. The ileostomy, though annoying, is not that bad. Recovery was frustrating at times, but was really not too bad compared to life with UC. It took about 4 weeks to feel more or less back to normal. Of course, I haven't had the second surgery yet.

Good luck with everything if you haven't already had the surgery. Do your homework and definitely take the time to find a surgeon that you trust.