SECOND REQUEST FOR YOUR OPINION

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janicebuf
Regular Member


Date Joined Aug 2006
Total Posts : 67
   Posted 10/8/2008 10:02 PM (GMT -6)   
Hi All,
 
I just got back from my sigmoidoscopy and unfortunately, things looked awful...For starters, I have alot of swelling and tons of polyps in the lower colon.  Hopefully Pseudopolyps, (anyone else on this forum have them?????) but you can't possibly biopsy all of them.  Anyway, I knew it wouldn't be a great scope since I am on 30 mg of pred along with lialdi, etc.Nothing is working, the lower colon and rectum are just bears to calm down.   GI immediately said I need to go on Remicade which I don't have a problem with if it puts me in remission.  Here are my questions though;  why would I even try remicade if it doesn't get rid of the polyps?  (Dr. said those are there to stay.)  The problem to me is the polyps, and since they all can't be biopsied we would never know which one could be cancerous until it's too far along.  Has anyone ever had the laproscopic surgery and then gotten a j-pouch?  Finally, I live in upstate New York near Buffalo. I would like to get a 2nd or 3rd surgical opinion.  Does anyone know a good surgeon in this state that specifically does what I am looking for? 
 
Many thanks guys, it's nice to know you are always here:)

Diagnosed with 'Indeterminate Colitis' (I think UC for sure), April '03
Remission 6/03
Diagnosed with Psoriatic Arthritis 6/06
Currently flaring (UC)
 
 
 
MEDS: 
Lialdi x 4 daily
canasa suppositories nightly
4x4 400mg Asacol, 
40 mg prednisone ~
50 mg. 6mp
folic acid x1 day
colocort enemas nightly
 
         


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/8/2008 11:10 PM (GMT -6)   

Tough question to answer.

Its going to be up to you.  Research it and if you feel you need to do it, then do it.  IMO i like to be proactive instead of waiting for something nasty to hit.  I am considering surgery as well.  Theres only so much I am willing to put up with, and being scared that anytime i get sick(cold, flu, anything) will lead to a nasty flare/hospital scares me half to death and if i had those polyps i'd be scared as well.  Get a few opinions for sure about them and your risk of cancer.  Even if you are uncomfortable with it and its going to stress you out forever, it might be something to consider.  Its your life, and you can choose it any which way.   I am going to talk to my doctor about surgical options as well tomorrow.   Check out the ostomy section and see what they have to say. 

Hard choices to be sure.   Good luck and feel free to rant away and ask questions. 
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/9/2008 7:39 AM (GMT -6)   
Try the ostomy board here or go to j-pouch.org. Not many of us here have had surgery, and you'll get more response from there.

Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 10/9/2008 12:07 PM (GMT -6)   
If you have pseudopolyps they should subside when your inflammation comes under control. If you have many small polyps over a section of colon or throughout your colon, it doesn't necessarily mean that you will develop cancer. I know a UCer in that situation for over 20 yrs, who has raised a child & works fulltime, & is generally in remission on 5-ASA meds. You definitely need a calm, intelligent, & experienced gastro to steer you to the right treatment/surveillance-- not an alarmist who thinks that all pseudopolyps and polyps are signs of malignancy. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/9/2008 12:29 PM (GMT -6)   
I think pseudopolyps are there to stay, regardless of inflammation levels. Because they are a form of scar tissue. Where did you hear that, Old Hat, that the pseudopolyps would diminish? I myself have hundreds of 'em. Totally gross.... There are pics on the internet of healthy colons covered in pseudopolyps, which indicate severe UC at one point. Anyway, the decision is totally up to you, to how much you choose to risk- Remicade will not alter how many pseudolpolyps you may have, but it can put you into remission. If you're main worry are the polyps, then yes, you are taking a risk. My GI thinks I ought to opt for surgery for a number of reasons, one of which is the high number of pseudopolyps- no way to biospy all of them, so you're taking a chance that if you develop colon cancer it may not be found until it's too late to do anything. If you can live with that, then I'd say try the tnf blockers if your symptoms merit them. If not, then talk to a colo-rectal surgeon & get their take on it. Maybe they could give you some stats to base your decision on. For me, I've decided to take that chance. I do plan to have yearly colonoscopies, & hopefully catch any cancerous changes early on.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 10/10/2008 10:03 PM (GMT -6)   
I heard it from the gastro who diagnosed me in 1980 via c-scope, when I was in a severe flare. The pseudopolyps healed & were no longer visible thru later scopes, but 2 real polyps had to be chopped out. Pseudopolyps are granulatous tissue that can heal if the anti-inflammatory med(s) works effectively. In my case, steroid treatment did it. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

janicebuf
Regular Member


Date Joined Aug 2006
Total Posts : 67
   Posted 10/12/2008 9:05 AM (GMT -6)   
Thanks for the advice everyone.  I will say that my GI said the polyps are there to stay regardless of treatment. I have never read or heard where they go away, though that would be great if they did!!!
 
6 months ago one (of many) biopsy showed an adenamoutus (sp?) polyp which is a pre-cancerous polyp.  Of course, now we don't know which one it is since there are so many.  I am going to Cleveland Clinic for my second opinion.  First with a GI who specializes in polyps and then if need be, with a surgeon. 
Diagnosed with 'Indeterminate Colitis' (I think UC for sure), April '03
Remission 6/03
Diagnosed with Psoriatic Arthritis 6/06
Currently flaring (UC)
 
 
 
MEDS: 
Lialdi x 4 daily
canasa suppositories nightly
4x4 400mg Asacol, 
40 mg prednisone ~
50 mg. 6mp
folic acid x1 day
colocort enemas nightly
 
         


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/12/2008 10:22 AM (GMT -6)   
Wow- please keep us posted on your visit. Good luck! I'm very curious as to what the GI says about the polyps- like I said, I have hundreds. I don't know if it's a risk worth taking, honestly. Colon cancer does not run in my family, but..... very unsettling- quick, think happy thoughts! smilewinkgrin
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


janicebuf
Regular Member


Date Joined Aug 2006
Total Posts : 67
   Posted 10/12/2008 11:28 AM (GMT -6)   

Hi Eva Lou,

Hmmm, I will keep you posted for sure~Colon cancer doesn't run in my family either but as we all know the risk goes up with UC. I don't know if I could have 100's of polyps and be comfortable enough to still have my colon.  Obviously it's a personal choice.  I will let you know and report back asap.

 

Thanks for your response.

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