Posted in Crohn's but maybe someone here can help me out too?

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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 12:39 PM (GMT -6)   
I just received in the mail today correspondence from the new Johns Hopkins Dr. I am curious to see if anyone here has any idea of her possible thought process.
She states in her letter that she received pathology results showing cecum with active chronic colitis without displasia or granuloma. The specimen from the IC valve shows focal active crytitis without granuloma. The colonic mucosa reveals mild crypt distortion , depletion of goblet cells, acute crytitis. There is diffuse inflammatory infiltrae consisting of lymphocytes, plasma cells, macrophages, and eosinophils in the lamina propria. Again no dysplasia no granulomas.
She states she discussed this with her GI fellow and was told that the pathology is not diagnostic of CD but suggests IBD. She would want to confirm via small bowel series ( which I had done an showed nothing ) . They feel the pathology suggests IBD but not clearly CD.
My Gi Dr ( not from the Lupus center ) clearly defined I do not meet any of the criteria of UC. What would the Lupus Dr. be looking for if not IBD? When I told her I had a Dx of IBD she was not content to believe me and requested proof of biopsy. Even with that proof she seems to have a hunch of her own. I looked up Lupus in the gut and it is represented by vascular disease of which none was seen in the pathology report. What am I missing? What else can go wrong in the gut as related to Lupus? Anyone here sick of trying to be their own physician? I am clearly growing weary. I have painful urination yet again and more WBC and RBC  and proteinuria that comes and goes at will. The BUN and CBC came back normal. That would show kidney disease is there were any. I also do not have high blood pressure which is an indicator of kidney disease.

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 4/14/2008 2:53 PM (GMT -6)   
Hi Chaya,
I am not sure what all that medical jargon means, honestly. All I know is a lot of people have trouble getting the proper diagnosis at first. Have you had a Colonoscopy done? What did that show? What are your symptoms? I have pain in my bladder at times and have not figured out why yet. I know it can be frustrating, and I have felt like my own physician most of the past 12 years I have had this. Good luck.
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, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 3:14 PM (GMT -6)   
The pathology report was from a colonscopy

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 4/14/2008 4:58 PM (GMT -6)   
I assume you're diagnosed with lupus, Chaya? That makes things tough because lupus can mimic so many other things. As I'm sure you know, Crohn's, ulcerative colitis and lupus are all autoimmune diseases so that confuses things even more. I really don't know much about lupus, so can't be of much help to you.

The classic symptoms of ulcerative colitis are bleeding with or without diarrhea, increased mucous production. Many people have other symptoms such as diarrhea or constipation, varying amounts of pain, lack of energy and various extra-intestinal manifestations such as arthralgia. I don't know how that gibes with your symptoms.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.

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