Checking If Disease Has Spread While In Remission?

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Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/10/2008 5:27 AM (GMT -7)   
I saw a GI yesterday,who wants me to have a Colonoscopy to see if my UC has spread(last dx was Procto-Sigmoiditis).I am currently in what seems to be remission,a touch of IBS,but nothing that makes me think I'm inflamed.I asked if it was still possible to check for the spread of disease while in remission,and he said there are other changes in the bowel that they look for to indicate this.

Just to satisfy my curiosity,does anyone know what those changes are?This is my first Colonoscopy in ten years and I have to say,I'm dreading it!

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/10/2008 6:38 AM (GMT -7)   
Huh. My last colonoscopy everything was reported as normal, and the diagnosis was UC, inactive. I'd ask the doctor for a more specific explanation of what they look at. That said, my GI recommends a scope every two years even when you're in remission, because it can find early pre-cancerous changes.

I'd be interested to hear how your doctor explains this, because I'm curious also.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 1/10/2008 8:39 AM (GMT -7)   
I'm also curious about how he will explain that...I am currently in remission and was wondering if the UC is spreading or "working" in there or what? I have no symptoms at all right now...Does that mean my colon looks completely normal or does it still look like a colon that has UC?
28 Yrs old
Dx UC 3/07
4 Asacol 3x/day (when I remember to take them)
5mg Prednisone
Remicade (only had three infusions)
Fish Oil supplements
Multi-vitamine
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29856
   Posted 1/10/2008 12:07 PM (GMT -7)   
mild inflammation can spread quite nicely without us having symptoms....and the symptoms for IBS could be the same.

Usually while in remission, one should be on some sort of maintenance med...

The colonscopy isn't soooo bad. You could ask for light meds to have you watching the monitor.

What clean-out are you having?

The norm for UCers with no precancer, etc is about 3 years. With any abnormal cells would be yearly. With a history of cancer, it would be yearly as well I would think.

The purge can cause some inflammation, so the doctors take that into consideration.

Do get a copy of your report when you see the doc. You should also get a copy of the report from 10 years ago.

What meds are you on at this time?

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/10/2008 12:21 PM (GMT -7)   
During remission they look for thinning of the mucosa to gauge whether the UC is "extending"-- I think that's the medical term, not "spreading". That's likely to be in the pathologist's report. Also, the gastro can remove any polyps that may have developed since your last scope. Some gastros want UC patients to have an annual c-scope starting around year 10 after diagnosis-- to watch for signs of dysplasia; others are more flexible about the interval between scopes. The bottom line with UC is that cell changes can occur in a patient's colon even while they are in remission. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/10/2008 5:47 PM (GMT -7)   
Quincy,no disrespect,but define "not sooooo bad"?I can still remember how ******g awful this feels!The resistance from the Anus and Sphincter,the way the scope "snakes" around the bowel,the indignation as a nurse asks you to calm down(I know they're only doing their job)as your pulse rises like it's liquid Viagra!Sorry to be so blunt,but to be honest,I'd rather be punched in the face,at least you see it coming!

I'd imagine the "clean-out" would be the same as before;Picolax.

As for light meds,my two previous "sedations" were completely ineffective.They wheel me back on a gurney,I get up(checked by a Nurse),get dressed,and sit back with a coffee and biscuit(hooray,after the starvation!),while watching the other patients in blissful slumber.Which of course means;I can feel every darn thing!

Current meds are 2 x 400mg Asacol,twice daily.That's my "bare minimum" maintenance regime.

Sorry if I appear to be belligerent,I know you're trying to be helpful,but a happy bunny I aint!

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/10/2008 5:52 PM (GMT -7)   
Hi Silent Lucidity. The sedations for both my c-scopes were successful, but when I had my sigmoidoscopy I had no sedation and it was miserable. I, too, would have much rather been punched in the face! So, just wanted to let you know I kind of know what you mean. Maybe if you tell the docs the previous sedations didn't work they can give you more or a different type or even general anesthesia (not sure if they'd do this for a c-scope or not)
23 years old
Diagnosed with UC March 2007; yet to go into remission
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


quincy
Elite Member


Date Joined May 2003
Total Posts : 29856
   Posted 1/10/2008 10:09 PM (GMT -7)   
not sooooooooo bad means it's stressful to a point, but the meds are pretty good. I always look forward to watching the monitor...but the last time, the doc gave me 1 ml/cc more of the versed than the colonoscopy 3 years before and I was totally ticked off because I wasn't totally with it. I'll pass on the versed next time and just take the fentanyl (if he'll do it).

I use the gallon prep...which I like as well. At least I can eat the day of the prep.

Hope it goes well for you.....I'm weird, I know...I look forward to seeing the show. I just had my 7th one in Sept...my report was awesome. The next one will be in 3 years unless something else comes up.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/11/2008 3:31 AM (GMT -7)   
Quincy,I don't think you're weird.I did watch the monitor once,and it is interesting to see what's causing all the trouble.However,I find the procedure so uncomfortable,I'd rather be knocked out for it.

Sara,I'm sorry to say they wouldn't give a general to anyone for a c-scope.They need us partially conscious in case they need you to move,at least that's what I've been told by docs in the past.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/11/2008 4:08 AM (GMT -7)   
I had a very nice 5 year remmission (no meds for most of it) in which time my UC spread from mild/moderate left sided to severe pancolitis. If you don't mind the prep I would do the colonoscopy.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Prontonix once daily for acid reflux, zofran twice daily for nausea


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/11/2008 4:14 AM (GMT -7)   
Kelly,I have every intention of doing the Colonoscopy,I'd like to know what's going on in there.I just wish there was an easier way to find out!
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