Does possible dysplasia mean I have to have surgery?

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erkhat
New Member


Date Joined May 2009
Total Posts : 10
   Posted 6/4/2009 5:16 PM (GMT -6)   
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.
34 year old female
diagnosed with UC in 2002
gave birth to second child in March, breastfeeding
 
Colazal 3 pills /twice a day
prenatal vitamin


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 6/4/2009 6:09 PM (GMT -6)   
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.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


erkhat
New Member


Date Joined May 2009
Total Posts : 10
   Posted 6/4/2009 6:28 PM (GMT -6)   
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.
34 year old female
diagnosed with UC in 2002
gave birth to second child in March, breastfeeding
 
Colazal 3 pills /twice a day
prenatal vitamin


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 6/5/2009 10:01 AM (GMT -6)   

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?

 


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 6/5/2009 10:04 AM (GMT -6)   
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.


Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

Post Edited (sicklygirl) : 6/5/2009 11:12:04 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2009 10:10 AM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/5/2009 10:17 AM (GMT -6)   
     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.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2009 11:27 AM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


erkhat
New Member


Date Joined May 2009
Total Posts : 10
   Posted 6/5/2009 12:18 PM (GMT -6)   
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?
34 year old female
diagnosed with UC in 2002
gave birth to second child in March, breastfeeding
 
Colazal 3 pills /twice a day
prenatal vitamin


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2009 1:16 PM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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