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ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 8/30/2007 6:12 AM (GMT -7)   
Does anyone know:  If a biopsy says UC can it be a mistake?  My sister thinks Rebecca had a reaction to meds and that she does not have UC.  The biospy said she does and I always thought that a biopsy is 100%.
Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/30/2007 6:45 AM (GMT -7)   
I wouldn't pay much attention to good intentioned (but misguided) relatives who try to tell you that your diagnosis is wrong or your treatment is lacking. You will get much more of this by friends and family as time goes on. A biopsy along with patient symtoms and blood work usually tell the story. Sometimes UC will be diagnosed but years later it is found to be Crohn's (or vice versa) but it's not often the case where UC is diagnosed and it is later to be found to be something benign. If your daughter's protocol is currently working I would stick with it. To make yourself feel better you can run your sister's idea by the GI for his/her input.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 8/30/2007 9:28 AM (GMT -7)   
My doctor said that both ulcerative colitis and infectious colitis present themselves in much the same way. The only way to rule out/in the latter is by finding the bacteria that has caused the reaction. Infectious colitis will present as ulcerations of the colon. I stand to be corrected on this point though my doc did say that over his career he has seen 3 patients who have diagnosis changed from UC to IC. In Ireland and the UK at least the normal practivce seems to be to assume UC since this is the most likely outcome. That says a lot about our bad bad health system which is purely symptom orientated.

Does anyone know how often UC turns out to be CD - ball-park figure.

I have a slighlty different question. Is it possible for UC to turn into CD ie suppose you are diagnosed with UC and this is the correct diagnosis. Can UC "mutate" to CD? The literature online seems to indicate no, ie if you have a 1 in 10,000 chance of getting CD than it remains 1 in 10,000 even if you have UC

Thanks
5 mg Pred (yuck!)
3200 mg Asacol + 500mg suppositories as needed
Digestive Enzymes
Probiotics + Bio Yougurt Discontinued as I may have dairy allergy
Acidophilus
Calcium
1000mg Fish Oils a day Holding off on these for a little bit!
Aloe Vera Juice
Anti Fungal Supplements
Nexium 20mg a day
No Stress and a positive attitude (mostly!)
 
 
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/30/2007 9:57 AM (GMT -7)   
UC never mutates to CD it's just that the diagnosis was wrong or that it didn't manifest itself until later.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 8/30/2007 11:01 AM (GMT -7)   
There are some Crohn's patients who only exhibit Crohn's symptoms in the large bowel. My GI said that this is why some patients are misdiagnosed with UC at first, then later diagnosed with Crohn's. I guess, typically, if a Crohn's patient starts with only large bowel issues, it will then progress to the small bowel. That is when the diagnosis is changed/corrected.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29863
   Posted 8/30/2007 11:12 AM (GMT -7)   
The physical symptoms of CD becomes more apparent eventually because it can affect the entire depth of the digestive tract wall (anywhere from mouth to anus). There are many with CD that don't have it in the small intestine. Some CDers do become affected with some other extraintestinal afflictions that are more prevalent than would be with UC.

It's one or the other....and some doctors would never admit it was a misdiagnosis.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 29863
   Posted 8/30/2007 11:13 AM (GMT -7)   
ithurtsmom...was the diagnosis UC or was it "colitis"?

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 8/30/2007 12:13 PM (GMT -7)   
Is it not the case that the more mucus your condition produces the more likely it is IBS or UC. I remember reading that CD tends not to produce mucus as it attacks a deeper layer of tissue - even in the bowel. And by a similar argument some form of pain is always present in CD whereas it is possible for UCers and IBSers to be completely pain - free (thats not to say that most UCers dont go through severe pain). This is rare for CD.
 
The original name for UC was mucus colitis.
 
 


5 mg Pred (yuck!)
3200 mg Asacol + 500mg suppositories as needed
Digestive Enzymes
Probiotics + Bio Yougurt Discontinued as I may have dairy allergy
Acidophilus
Calcium
1000mg Fish Oils a day Holding off on these for a little bit!
Aloe Vera Juice
Anti Fungal Supplements
Nexium 20mg a day
No Stress and a positive attitude (mostly!)
 
 
 
 
 

Post Edited (damo123) : 8/30/2007 1:16:30 PM (GMT-6)


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 8/30/2007 1:16 PM (GMT -7)   
I was told that it is UC, but they can not tell me 100% it's not CD until 5 years afer diagnosis because of her age. Just wondering if a biopsy is 100% accurate or if it could have been a reaction to meds.
Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29863
   Posted 8/30/2007 3:25 PM (GMT -7)   
Damo, just to clarify... mucus colitis doesn't cause inflammation. It was called "colitis"...but not meaning ulcerative colitis...and again incorrect because of the fact that mucus colitis has no inflamation. Today, it's called IBS..irritable bowel syndrome.
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 8/31/2007 4:35 AM (GMT -7)   
Joan, biopsies are fairly accurate. Of course with any medical procedure/test/etc there is always the slim chance of mistake. But I agree on the possible Cd diagnoses. So many people have had what they thought was Uc only to find out later that it was Cd instead.
 @--->--SHERRY--<---@
Left sided Uc since '92 - meds - Colazal, Canasa (when needed), 6MP (50-75mgs), Forvia, Biotin (IN REMISSION - sort of!)
Secondary Raynauds Syndrome '04  - meds - Norvasc
Fibromyalgia '06 - no meds
Severe seasonal allergies - meds - Allegra 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
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damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 8/31/2007 5:16 AM (GMT -7)   
Quincy,

You are indeed correct. I had my facts wrong on the definition of MC. I apologise.

D
5 mg Pred (yuck!)
3200 mg Asacol + 500mg suppositories as needed
Digestive Enzymes
Probiotics + Bio Yougurt Discontinued as I may have dairy allergy
Acidophilus
Calcium
1000mg Fish Oils a day Holding off on these for a little bit!
Aloe Vera Juice
Anti Fungal Supplements
Nexium 20mg a day
No Stress and a positive attitude (mostly!)
 
 
 
 
 

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