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calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/18/2009 4:52 PM (GMT -6)   
In addition to my other post...the doc also told me he saw some dysplasia...which are pre-cancerous cells! Should I be worried about this or is this fairly normal with this disease?

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16277
   Posted 8/18/2009 7:10 PM (GMT -6)   
I would be worried but I think abnormal cells can sometimes turn normal over time. Definitely keep on top of it and get checked regularly. It is not something to take lightly. This is my opinion of course, I don't know the facts but I would definitely go over it with my DR until I understand and maybe seek a second 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...


sirenshooter
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Date Joined Jun 2009
Total Posts : 2011
   Posted 8/18/2009 7:29 PM (GMT -6)   
Make sure you talk to the GI about it when you see him!
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 8/18/2009 11:21 PM (GMT -6)   
c-o-t-o...how did the doc see the dysplasia? Did he use a topical solution to discolour the cells?

Did he take a LOT of biopsies????

Do you have a copy of the report from the c-scope? if not....make sure you get one.

I'd be concerned about dysplasia.....you need to make sure how it was "seen", where exactly the dysplasia is, have definitive proof or be tested again.

Make a list of questions to have at the ready for your GI appt and write down the answers if they're difficult to remember.

You should also do your homework regarding colon dysplasia. I know that some can be up and down...according to some members' experiences on this forum.

You need to set up a game plan with the new doc or with the surgeon who diagnosed you initially.

What did the surgeon say about the dysplasia??

Somewhat scary situation.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/19/2009 5:07 AM (GMT -6)   
To be honest, the surgeon was not as worked up about the dysplasia as the doc I saw yesterday (who is my regular, family doctor, internal med). He said that with the dysplasia that it was not a great thing but now that we know it is there we can watch it, meaning that I'd have regular scopes.

And, let's see, he didn't mention the coloring thing quincy so I suppose no, he didn't do that...what IS that? I can tell I have alot to learn. He did do several biopsies I know b/c I was so inflammed he wanted to see what was going on. I do have the report from the c-scope from that day, with the pics and telling where the inflammation is. But the dysplasia is reported on the pathology report and no, I don't have a copy of that. But I'm thinking I'll go get one before the GI visit.

Maybe I should just get my colon taken out and be done with it! I'm quite overwhelmed right now!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 8/19/2009 9:28 AM (GMT -6)   
I can truly understand you being overwhelmed and having one's colon removed is definitely an option.
I might consider that as well, but some cancers can be removed with no problems afterward. ... that's why I was asking where it was.

I do think you need to know the exact where and what can be done and how much inflammation you have....etc.

Lots to discuss with the GI.

There is a special light or wash that can be put on some cells to indicate cancer...that's why I was wondering about the wording "he SAW dysplasia"...most times it cannot be seen unless there is something to show the changes, either through a microscope or a special contrast that will show them up.

Again..something to ask the GI.

Does colon cancer run in your family?

I hope you have a good support system with family and friends to help you through this time. I must admit I'd be initially freaked, but I'd do the homework and do lots of discussion with the doc, etc.

I'd probably be inclined to consider the surgery, however....now or later...that's the question.

Please keep posting other questions or concerns, etc.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/19/2009 3:40 PM (GMT -6)   
Ok, I got the path report from the biopsies! I do suppose he didn't actually see the dysplasia, it was found through the biopsies. Does this make sense? I'm not as well versed in the terminology as most of you. I see that there were 2 specimens with multiple pieces. The report says 'chronic active colitis, idiopathic inflammatory bowel disease, type indeterminate. Dysplasia indeterminate due to acute inflammation.' And at the very end it says 'malignancy is not present.' And this was from my scope done July 31. And from my report from the scope it says...'colitis found in the rectum, rectosigmoid junction, sigmoid and descending colon.' It doesn't say how far up into the descending colon but at the visit with the surgeon he said it was 'just past' the sigmoid. But it does not say exactly where the dysplasia is.

And yes, quincy, I have an amazing husband and supportive family. I do have 3 small kids which makes this kinda hard.

And no, no one has had colon cancer in my family. My grandfather had colitis as well as 2 of my aunts. But no cancer.

Thank you so much for your help!
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 8/20/2009 12:37 PM (GMT -6)   
c-o-t-o..you're welcome!
 
from what i get from the report, you've not been "diagnosed" with either UC or CD...yet to be determined.

I would assume the dysplasia cannot be determined because of colonic inflammation unless the inflammation is caused by the dysplasia itself from that area?  definitely a good question 

I read an article (that I have to find again) that says one should be tested again regarding the dysplasia in 1 - 6 (I think )months....I guess to see if there are any changes.

Strange it doesn't say where the dysplasia was found....but maybe in another report?

How many biopsies were taken?

Do you have a copy of the full report or just the summary?

The waiting sure is a difficult thing....it's awesome you have good support.
Yes, I could well imagine having kids and those commitments can put much stress on day-to-day functioning.

I'll look for that article.

quincy


*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 8/20/2009 12:55 PM (GMT -6)   
OK..found some stuff that might be helpful.
 
 
 
 
 
 
 
hope this helps...
q
 
 
 
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/20/2009 1:30 PM (GMT -6)   
Thanks quincy! I'm trying to read everything I can before the GI visit next week!

And I have everything that was in my chart at the surgeon's office. I looked through it myself and asked the nurse. I have 2 pages from the actual colonoscopy and one page that is the path. report. I do see that the biopsies were taken at 20cm in the colon and in the rectum. It just says multiple pieces by each one. Surgeon and internal med doc both say it's more likely to be UC b/c it's in the rectum where as CD is usually not. Plus, all the inflammation is together going up my left side, it is not patchy.

So now from what I'm reading...dysplasia indeterminate means it may or may not be there? Geez, I would just like some straight answers!

But the surgeon did tell me and I quote 'your colon is on fire' So it's really inflammed so I guess it was hard to see. But the biopsies would tell what's there, inflamed or not, right?
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/20/2009 1:51 PM (GMT -6)   
just read this on a website:

"Inflammation can cause changes in the tissue very similar to dysplasia. In these cases when the pathologist is not sure whether there is dysplasia or not, the case is called “indefinite” or “indeterminate” for dysplasia."

So basically, I was perhaps so inflammed that they don't even know that it's there? So likely I'll need another colonoscopy when I'm not so inflammed to check again?
*Amy, 32, dx with idiopathic colitis July 2009. Dysplasia found also.

Asacol 2 pills 3 times daily
Folic Acid
Probiotic Align

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