Confused, UC is inactive but rectal ulcer is causing problems but shows no UC/IBD!?!?

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/5/2009 12:09 AM (GMT -6)   
I am back if anyone remembers me. Sooo confused. I have new insurance and just had a colonoscopy with a new GI. She took many biopsies and said none of them showed any IBD! But I have had left-sided UC in the past. I still have a deep rectal ulcer which has been torturing me since 2004. The biopsies did not show any IBD even in this ulcer. So it seems to be solitary rectal ulcer syndrome from my issues passing stool?!?  I am starting to feel like I am losing my mind! I will be consulting with a recommended colo-rectal surgeon tomorrow and will post what he says. Just thought I would share my confusion with you all, I don't know who else to talk to or what to do at this point.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/5/2009 8:24 AM (GMT -6)   
Well isn't that just odd??! For your sake I hope that you DON'T have Uc and just have the one ulcer in which can be corrected by surgery. I can understand why you would be so confused!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 3/5/2009 11:09 PM (GMT -6)   
Hey, there-- of course we remember you! Did the gastro mean that your UC is in remission? Another member just mentioned recently that in remission her colon looks completely normal-- so maybe it's possible that biopsy tissue can test normal, too. Are you still on Humira? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 3/6/2009 12:08 AM (GMT -6)   
Some of us (me included) have UC that when in remission actually leave no tell tale sign like scarring or even pathology even when only on anti inflammatories...be happy this is a good thing. My GI doc said that only drugs like remmicade etc actually heal previous damage etc not anti inflammatories like asacol etc....I'm not sure about your ulcer but when I pass large hard stool it rips open my fissure and kills my internal hemmies. Now that I am in remmission my D is gone and I've become constipated and use stool softners every day; adding fiber only seemed to bulk things up even more. Maybe you should try some Colace to soften things up which may help with the rectal ulcer...

Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/6/2009 12:52 AM (GMT -6)   
Thanks! It does appear that my colon is completely clear of any signs of UC at them moment.  The report of the rectal ulcer biopsy is quite odd, it states that:
 
 "the findings in the rectum are consistent with, although not diagnostic of, chronic, severely active proctitis as a component of ulcerative colitis/proctocolitis and other causes of the ulceration should be excluded clinically." This was the only abnormal finding in the biopsy series.
 
I talked with the surgeon today and he wants to check that I don't have inner rectal prolapse causing the solitary ulcer. He is trying to decide what surgical options are practical, if there is a possibility I can get surgery for the ulcer without removing the colon. I keep baffling the doctors!  The surgeon says the ulcer is not typical of UC so it makes everything more compicated. My GI took me off Humira in February, she thinks it is not doing anything for me. Now I am on 2.4mgs Lialda and 100mgs of 6MP. I still have bleeding, rectal pain, diarrhea, constipation, mucus, tenesmus, etc.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 3/7/2009 5:03 PM (GMT -6)   
princesscolon said...
Thanks! It does appear that my colon is completely clear of any signs of UC at them moment.  The report of the rectal ulcer biopsy is quite odd, it states that:
 
 "the findings in the rectum are consistent with, although not diagnostic of, chronic, severely active proctitis as a component of ulcerative colitis/proctocolitis and other causes of the ulceration should be excluded clinically." This was the only abnormal finding in the biopsy series.
 
I talked with the surgeon today and he wants to check that I don't have inner rectal prolapse causing the solitary ulcer. He is trying to decide what surgical options are practical, if there is a possibility I can get surgery for the ulcer without removing the colon. I keep baffling the doctors!  The surgeon says the ulcer is not typical of UC so it makes everything more compicated. My GI took me off Humira in February, she thinks it is not doing anything for me. Now I am on 2.4mgs Lialda and 100mgs of 6MP. I still have bleeding, rectal pain, diarrhea, constipation, mucus, tenesmus, etc.

What did he say the ulcer is typical of?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/7/2009 6:17 PM (GMT -6)   
He says it is more like solitary rectal ulcer syndrome.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 3/8/2009 10:12 AM (GMT -6)   
You are not losing your mind! Last March I had a bad flare up. I was not able to get another scope until that July and by that time my flare up had cleared up, I was watching what i was eating and on Metamucil and had gotten loads of rest. My scope in July found NO signs of UC at all. If the same Dr hadn't done my scope she said she woulda said I didn't have UC at all. She told me to keep up whatever I was doing because it was obviously doing me a lot of good.
Jenn 27/female/married
Ulcerative PANCOLITIS diagnosed 2004
Asacol 800mgs 3times/day, Buscopan as needed
Daily Vitamin for Women and Folic Acid, Metamucil one tsp per day so far
Flare March-June 2008.. pretty much in remission again July

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