I've had UC for 18 years. Last colonoscopy showed

I had mine due to LGD as well. funny thing is when the entire colon was biopsied after removal, there was no sign of LGD.. interesting

Love the name, Pouchomarx, lol.

Did you have the surgery in one or 2 operations. The fact that you showed no sign of LGD after is what scares me. You must feel it was for nothing now.

Here's the thing:

LGD can come and go. HGD is much more of a concern and there is no controversy about it. Total colectomy is always recommended for HGD.

But, the problem with LGD is that it is a complete roll of the dice. Nobody can tell you if cancer is definitely in your future. However, after decades of collecting data, what they have found is that your cancer risk definitely goes up once LGD is found.

What is tricky is that the dysplasia of inflammation is difficult to sort out from the dysplasia of precancer. In addition, cancer in the presence of UC tends to be flat lesions, not beginning in a polyp like other people. These flat lesions can go undetected and arise in a completely different area than prior findings of dysplasia. It is impossible to biopsy the entire colon and rectum. It is not that uncommon to find undetected cancer in a colectomy specimen that was removed for dysplasia, particularly HGD.

So, once there are findings of dysplasia, it is sort of like your "free pass." it is up to you whether you want to use that pass, or wait and see if a better offer comes later. Doctors start getting nervous once there is dysplasia, because they cannot guarantee any outcome and they start thinking in "better safe than sorry" terms.

There are a few members here who took the gamble and lost, later winding up with colon cancer, chemo, radiation, and lifelong worry.

My advice: get the pathology consult and have a colectomy if it is recommended. It is natural to be afraid of the surgery, but there are other things to be afraid of too. Hopefully, it will be all good news and just a false alarm.

Good luck!

Jan

Jan,

Thank you so much for responding. I really appreciate it. You have given me a lot of great info and a lot to think about. I know if they recommend the surgery I will probably go through with it but I keep hoping that there's a possiblity that they were wrong. I assume that after the next colonoscopy I will have a better idea of what is there and what I should do.

In addition, here are a couple of good links to sources with good information.

http://gastroenterology.jwatch...tent/full/2013/118/5

http://www.ssat.com/cgi-bin/colitis.cgi

You need to be careful which sources you read, as some discussion boards, blogs, etc. either are overly dismissive or tend to promote scare tactics. Also, avoid old studies, as trends and technology change. Only you can determine what your risk tolerance is, and your overall risk also depends on how extensive your disease is and your family history.

Jan

Mamacat80,

I had UC for 8 years until I had my colon removed in a 3 step process (3 surgeries). My only regret is I did not have this procedure sooner. I am not familiar with LGD.

There is nothing perfect and I normaly get pouchitis it seems once a year for the last 3 years or so, but it is better than living with the nightmare of UC.

Of all the people on this website, Jan is the most knowledgable one and gives exceptional advice. She is one person I would trust to give the best advice and has helped many people here.

I hope and pray you make the right decision that is best for you.

I had my colon removed after two colonoscopies showed signs of LGD. I have to agree with Jan after finding LDG it is a roll of the dice weither or not it will turn into full blown colon cancer. I feel relieved that worry is gone, however I will say it has been a very tough year. I can't sugar coat that part of it. Some people just have longer recoveries than others.
I was in remission with my UC but after getting the diagnosis of LGD I got stressed out and my uc reared it's ugly head and for 2 months before my surgery I was miserable. I still go to the bathroom alot but I don't have the horrible pains and bleeding like I had with UC. I wish you luck on your decision it is a tough one and one only you can make , but we are here for you so if you have questions or concerns this is the place to be.

mine was 2 surgeries laproscopically. I have had issues since my surgeries. Ulceritive colitis would creep up on me a few times a year but it was not horrible. My surgeries and complications took its toll on my family and I think its part of the reason I am divorced today. such is life

Thanks Rocket, but I doubt I am the most knowledgeable here. I just know where to find stuff, and being a nurse I just naturally want to stay up to date. Plus, I like to pop in frequently and blab a lot.

While I never had any positive biopsies for LGD, I had planned on having a prophylactic colectomy after 23+ years of a pancolitis diagnosis. Even though I was in remission most of the time, the cancer risk is the same, and pancolitis put me in the top tier. I had oodles of pseudopolyps, making it difficult for my GI to know what to biopsy. Pseudopolyps are not adenomas like stalked polyps, but they get in the way of really seeing the mucosa well. As I said before, you cannot biopsy the whole colon, and even biopsies every 10cm can miss a lesion that is not visible.

Once I had decided I had tempted fate long enough, I went into a refractory flare that sealed my colon's fate. Life with a j-pouch certainly is not perfect, but it is pretty damn good!

LGD is low grade dysplasia, by the way.

Jan

Since others have done a nice job with the LGD question, I'll take a stab at the one- vs. two-stage procedure. Most folks seem to get a two (sometimes three) stage procedure, often dictated by the condition of the colon at surgery. I had a single stage procedure, available since I was in reasonably good health at the time. My surgeon warned me that one-stage folks tend to spend as much total time in the hospital as two-stage folks. In my case the process included a truly miserable 10-day hospitalization, but then I could begin to get on with my life. I also had the procedure done very far from home, which seemed like a strong argument for one-stage, and my hairy belly made an ileostomy seem like it would be a special kind of unpleasantness. I would make the same choice again (to have a one-stage). Others can surely make the case for two (or more) stages.