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Does possible dysplasia mean I have to have surgery?

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Ulcerative Colitis
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Posted 6/4/2009 11:16 PM (GMT 0)
Recently changed GI doctor and had a colonoscopy done 3 weeks ago.  I had waited 2 years due to pregnancy.  I have had pseudopolyps since 2005 that always came back negative for dysplasia.  This doctor told me that they can't say if it's dysplasia or just uc.  So she said I would qualify for colon removal.  She said she checked with three other doctors at her office and they agreed that it would be up to me to go ahead with surgery.  She suggested I get a second opinion from UCSF.  So now I am waiting for authorization.  The alternative she said would be to continue having colonoscopies every six months.  Cutting some of the polyps would be risky. 

I worry because I have a two month old and would rather wait until she was a little older.  Next summer would be a lot better.  My question is do I need surgery right away and not risk waiting, or would it be okay to monitor with colonoscopies.  I'm in great health right now and the doctor says recovery would be a lot faster.  I'm trying not to worry, but now I can't get it out of my mind.

Posted 6/5/2009 12:09 AM (GMT 0)
The surgery is not a small one and although the outcome can be extremely rewarding, you do end up taking more trips to the bathroom after surgery. Would you opt for a j-pouch? I see a few people here who have had great results with a jpouch, I have also seen some who opted for perm ileostomy and are very happy. I think you can be happy with whatever you decide but if it were me, I would probably go for regular colonoscopies before jumping in and getting surgery. Surgery is a life long decision and does require a lot of consideration. You need to do all the research and know what you're in for before deciding it is what you want. The recovery is quite long and there seems to be a lot of learning involved. I do admit I have never seen someone who was sorry they had the surgery but it is a lot to think about. Give it some time, read, research and get checked out again, then make a decision. I would think they should be able to tell you if it is UC or dysplasia from a biopsy. Definitely get a second opinion. Dysplasia doesn't always require surgery, it is a good reason to have surgery but cells can change for reasons other than cancer. If you get the same result from a second opinion and again in 6 months, surgery may be in your best interest. Just my opinion.
Posted 6/5/2009 12:28 AM (GMT 0)
I am starting to do more research. I had never even heard of dysplasia until today and I found out I had those biopsies to check for it since 2005. My old doctor didn't seem worried about it, or at least she didn't worry me about it.
Posted 6/5/2009 4:01 PM (GMT 0)

Sickly Girl,

You mentioned that people who have the surgery usually go to the bathroom more then they did prior?  Why is that?  Is the urgecny still there? Does it last?

Posted 6/5/2009 4:04 PM (GMT 0)
I think it is just how the j-pouch works. Maybe it can't hold as much. People with a pouch usually go from 3-8x a day I believe. I hope someone who knows more can correct me if I am wrong.
Posted 6/5/2009 4:10 PM (GMT 0)
Erkhat,

You can meet a lot of folks at www.j-pouch.org who had surgery out of a diagnosis of dysplasia. They can weigh in and let you know how long they waited before having surgery and their decisions as to why.

Sue
Posted 6/5/2009 4:17 PM (GMT 0)
     Sickly girl, you are correct.  I visited a GI surgeon last year because I was in a seven month flare.  I was very sick but they still labeled my ulcerative proctitis as mild/moderate.  Hate to see what severe is.  After a ten day hospitalization, I decided to get another opinion, therefore my visit to the surgeon.  He told me that my condition didn't warrant surgery...yet.  That the surgery was a serious one requiring three parts.  Complications could arise that may be life threatening AND even after surgery the patient has up to eight bowel movements per day.
Posted 6/5/2009 5:27 PM (GMT 0)
However, 8 bowel movements a day with a jpouch is no where near what 8 bowel movements are with a colon!! Most of the times we empty our jpouch is when we urinate. How often do you urinate per day?

Sue
Posted 6/5/2009 6:18 PM (GMT 0)
The tough thing for me is that I am not feeling sick right now and don't have to go to the bathroom more often than normal. This surgery for me is for the cancer risk and not the pains of the colitis. Can't my polyps just hang around and not turn into cancer?
Posted 6/5/2009 7:16 PM (GMT 0)
If you want to assume the risk you can. I have met many people dx with dysplasia who waited only to find out later that the cancer was much more advanced. This is really a conversation best suited for an oncologist and surgeon. You have UC which puts you at a much higher risk for CC already. Just because your UC is in remission doesn't take away from the cancer. I would encourage to do more research and talk with your doctors. I would also encourage you to talk with UCers who were dx with dysplasia and get their feedback. At minimum I would schedule a consultation with a CR surgeon.

Sue
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