New Diagnosis?

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Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/8/2008 10:17 PM (GMT -6)   
Well I thought I had some good news 2 weeks back when I had my colonoscopy and the doctor only noticed mild inflammation.   So that eliminated the need to go onto further treatments like remicade or possibly surgery as just a month earlier i was hospitalized with a nasty flare.  I was originally diagnosed with ulcerative colitis back in 2003-4(cant remember) via a colonoscopy.  The doctor said he was just about postive it was UC. 
Anyways..
 
I got a copy of the pathology report today and I read through all the results.  The pathologist feels the pattern of inflammation is more indicative of chrons.  The active inflammation was located only in the cecum, hepatic flexure, and transverse colon with no inflammation in the descending, sigmoid, or rectum...which for me and what i know of UC is strange   That to me explains why i felt so different during this flare up versus flares in the past.   I do have a followup with the doctor next week and I guess I will go over how they could be so positive it was colitis in the past, and now the pathologist believes its chrons.  And of course if this changes anything.  I know most of the treatments are the same..and i guess I've lived with it enough years now anyway to deal with whatever 'it' is. 
 
Anyone had there diagnosis changed before?  Guess I am just a little shocked right now.
 
Vin
 
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 11/9/2008 2:25 AM (GMT -6)   

Hi Vin..do you have the report from the first c-scope?

q


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/9/2008 2:36 AM (GMT -6)   
No but I am definatly going to request it. That was back in the day when I didn't even know what colitis was!! I am quite a bit more knowledeable now. I should be able to get a copy this week.

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/9/2008 5:31 AM (GMT -6)   
Hey Vin- I have been in the same boat. They waffle on being positive it is UC even though they are fairly sure in most cases... but they waffle over some conflicting signs. I too have some patchiness in scopes, of non-inflamed areas. I insisted on a Prometheus blood test which was 95% sure it was UC, but both of my GI's are not all that impressed by this test in spite of its claimed reliability of 95% of whatever. However I am still being labeled as UC which for now gives me hope that I still have the surgery option available. heck, I guess even those with indeterminate (not sure if it's UC or CD of the colon) colitis can't be turned down the surgery option if it is completely refractory to treatment. I went on the jpouch forum and have learned that even if it turns out to be CD, it is not inevitable that it turns into CD outside the colon later- but that can happen which would, to put it mildly, be a bummer. What a freaking' ridiculous disease.


Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/9/2008 11:28 AM (GMT -6)   
Yea whatever this particular disease happens to be, its really a PITA!  In my case now, the previous colonoscopy I had showed disease from the rectum to the transverse colon in a fairly contiguous pattern(from what I remember)..  and now in this more recent colonoscopy I have disease from the transverse colon all the way to the cecum.  Nice!  So its either total pancolotis or chrons..neither diagnosis sits too well with me.   I am still hoping its UC so I can have the surgery option in the future... but I guess all bets are off now.  How frustrating for everyone who doesn't have a definitive diagnosis. 
 
I should know more about what the dr. thinks when I have my appt this week.  I forgot what day it was! 
 
Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

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