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Old 03-25-2013, 12:50 PM   #1
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eagle999 HB User
UC w/low grade dysplasia

I've had UC for 22 years but symtoms have been under control. Last colonoscopy showed several areas with low grade dysplasia. Also had polyp in mid ascending colon with low grade dysplasia. Doctor is recommending complete removal of colon. Currently reviewing options. If anyone has any had similar problems, I would like to here about your experiences and opinions.

 
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Old 04-04-2013, 01:55 PM   #2
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Re: UC w/low grade dysplasia

Hi there. I've just found myself in the same kind of boat as you, being told that low grade dysplasia is present in some of the multiple polyps found in my colon. Two days ago I was told its too risky to try to remove the polyps so they want to remove my entire colon. I'm 43, fit and healthy and it was found by chance.
Do you - or does anyone out there have any helpful thoughts to share ?
I'm stressing out to the max and very upset by the news.

 
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Old 04-05-2013, 08:57 AM   #3
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Re: UC w/low grade dysplasia

Hello Katerina1,
I can relate to stressing out. A recommendation of a complete colon removal is hard news to hear, especially when your not having bad symtoms.

I have been doing quite a bit of research since my colonoscopy results and found that there is some controversies with optimum management of low grade dysplasia in the colon. Some doctors recommending colectomy while others recommending continued intensive surveillance.

I believe it is important to get a second gastrointestinal pathologists to look at the biopsies. I have read that is is difficult to differentiate LGD from regenerative tissue. I just had my biopsies sent to a pathologist at Cleveland Clinic to confirm the existance of LGD.

Has your doctor given you different options for surgery and talked about where you would have it done? I also went to Cleveland Clinic to talk to a colorectal surgeon about having j-pouch surgery.

You can look at this as a good thing because it sounds like you were lucky they found the LGD polyps. LGD is the earliest form of pre-cancerous cells, so finding it now is much better than later when it could be more advanced to malignancy.

Last edited by Administrator; 04-05-2013 at 09:02 AM.

 
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Old 04-05-2013, 08:48 PM   #4
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Re: UC w/low grade dysplasia

Hey there. Thanks for the quick and supportive reply. Knowing that there is someone out there who knows some of what I'm going through kind of makes it all a little easier to take. You're right - in a way I'm lucky this was found by chance but some days I feel like I just want to scream.
I had diarrhoea real bad after surgery to correct acid reflux and it was then they did the first colonoscopy and found this. That was in 2011 but its taken this long to get straight advice and honest answers. I've had a second colonoscopy a few weeks ago for a second opinion and they say my options are either six very risky colonoscopies to clear the Lgd polyps with no guarantees or a colon removal. I have no choice really other than to get the colon removed by the end of the year.
That's hard to swallow isn't it ? They talked of an internal pouch here with the second opinion doctor. The first one was all about ileostomy for life.
I'm confused and scared by it all. I'm having the surgery mikes away from home too - better care - and that makes it a lonelier road than ever.
Are there support groups out there ?
Thanks again for reading this.

 
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