Inflammatory Bowel Disease?

[mj777]

I have been to 3 Gastroenterologists with 3 different opinions based on results from a colonoscopy.

First colonoscopy - 2002
Symptoms - chronic diarhea (diarrhea) and nonformed bowels for over a year.  Rectal pain if bowel was formed.  Fatigue.
A. Rectal biopsy: Chronic inflammation
B. Transverse colon biopsy: Edema and chronic inflammation
C. Right colon biopsy: Edema and chronic inflammation
Note:  Fully diagnostic changes of inflammatory bowel disease are not encountered in the present material, but this does not exclude the possibility.
1st Doctor:  Inflammatory Bowel Disease, visual inflammation (rectum) consistent with colitis.

Sigmoidoscopy - 2003
Symtpoms - bowels still not formed
Rectum - red with hypervasularity - no biopsies taken
2nd Doctor - left sided uclerative colitis - agreed with 1st doctor just because he didn't want to negate the 1st doctor in my opinion. I got the impression that he didn't believe I really hade uclerative colitis....he told me people with ulcerative colitis have much worse symptoms than me.

Second colonoscopy - 2005
bowels very thin.  fatigue is still present.
A. Colon, transverse/right, biopsy: benign colonic mucosa with an increased inflammatory infiltrate and rare foci of activity.
B. Colon, descending/sigmoid, biopsy: same as A
C. Colon, rectum, biopsy: Same as A
Comment: These findings are nonspecific.  Although these findings may represent quiescent ulcerative colitis, the differential diagnosis also includes microscopic (lymphocytic) colitis.  
3rd Doctor: Not sure what I have.  These findings could be caused by the phosphosoda I drank to prepare for the colonoscopy.  Take fiber and cut out the caffeine.

Blood tests that are consistently abnormal for 5 years.
ANA - 320 - speckled pattern
Anticardiolipin Antibodies - abnormal in low titer
Hemoglobin, Hematocrit, RBC always abnormal but the doctor said this is "very" mild and for me not to think this is severe at all.

I am presently experiencing diarhea (diarrhea) again and rectal pain if my bowels are formed and not thin.  I have pain that feels like menstrual cramps after a bowel movement and it lasts for a couple of hours.  The pain is not severe and I have no bleeding.

Questions:
1.  Do the biopsies in the 2 colonoscopies show anything significant or could these actually be normal findings?
2.  Based on all this information, do I have something that is abnormal and significantly wrong or should I just continue to take fiber to make my bowels normal?  I will not take anything else like pentasa until I have a 100% diagnosis of IBD.

[Kevin Pho, MD]

To answer your questions:
1) Difficult to say, since you have been to several physicians who have given different opinions.  One option would be to have another pathology reading to ensure the inflammation is not consistent with inflammatory bowel disease.  Antibody testing like the anti-OmpC antibody can also be considered.

2) Can't give specific recommendations over the internet.  I would discuss the results with your personal physician, or obtain another opinion at a major academic medical center.

These questions can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[lizziecee]

I am appalled at the non conclusive diagnoses you have had. I got Crohn's way back in 1970 when there was no such test as colonoscopy - just a horrid surgical procedure, laparotomy, that opened me up from navel to vagina. I had 15 different areas of ulcers and crypt abscesses so they just sewed me up again.  I was treated with huge amounts of steroids, some 60 mg a day, which doctors will not prescribe these days because of severe side effects.Now I have severe osteoporosis of my bones. Also have breast cancer but guess that is a side issue.

Belatedly, they don't need to do this as they have colonscopy as their first line of a new method of diagnosis.  The only symptoms I had were severe diarrohea and weight loss, down to 60 lbs. Thankfully, anorexia was not known then, because this was not the cause and could have muddied the issue.


If I were you, with my past experience, I would get to a specialist medical centre of excellence and get another opinion. I was in 5 different hospitals in England before I was diagnosed with Crohn's and this took a whole year. I think medical diagnostic tests are much advanced since then, but Crohn's is still an orphan disease and difficult to detect. I am currently doing well on weekly self administered injections of cytotoxic medication, methotrexate, but still have morning episodes of severe diarrhoea - however, I am still hear to tell the tale, when my doctors some 30 yrs ago, didn't feel I would last a year as my Crohn's was right through the whole gastro-intestinal tract.

I hope you get the appropriate diagnosis and do well.
Liz.

[lizziecee]

Hi Liz here again - just re-read your post and wonder if your docs, particularly Gastro's, have done a Calprotectin test - it is new (past 2-3 yrs) but can show inflammatory bowel disease,particularly Crohn's, not sure about Ulcerative Colitis) through a stool test. I had one a month ago, waiting for results. Now on antibiotics as my gastro said I have overgrowth of bacteria in my intestines. My gastro said every test I have had (CRP, ESR, colonoscopy and calprotectin)shows I have inflammatory bowel disease. Somehow, I don't need them to tell me this - I know how it affects my life daily. I just want them to find a solution.

Take care,
Liz.

[steve333]

I hope you and everyone here consider alternative medicine as an adjunct to other means.
I always get checked out by an MD if i think something is wrong, in fact I am going for an endoscopy July 14, however I realize there is little they can do for digestive problems.
I have found the greatest benefit from probiotics. I take Culturelle right now, which can be purchased at CVS or a vitamin store.
I also take digestive enzymes, but make sure you dont have an ulcer since some can aggravate it.
Lastly, i take a multivitamin and also Fish Oils which are antiinflammatory in action and good for your heart. I also take herbs such as silymarin that enhance liver function since the liver is important in digestion also.

I hope its OK to post this info here. I suggest doing a google search on a known health problem and search for some alternative nutritional help.