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Crohn's Disease Forum » Ulcerative Colitis Forum » Ulcerative Colitis - Do I or Don't I have it?


03-06-2012, 03:12 PM   #1
Birdmom
 
Join Date: Mar 2012
Ulcerative Colitis - Do I or Don't I have it?

Hi everyone,

I'm a bit confused here and I think my Dr's are too.

First, I had an appendectomy on Nov. 25, 2011. I bring this up because my issues started 2.5 weeks after that surgery.

My first symptoms reminded me of a peptic ulcer - I had a lot of pressure/pain in my stomach, felt full all the time, could only eat small amounts of food, lot of intestional discomfort (mostly large intestine).

I haven't had any diahea or bloody stools but my bowel movements have been off - I will have several each morning and they are about the consistency of oatmeal.

Lot of pain in the appendectomy area.

I've lost about 20-25 lbs since Dec. 10.

I was referred to a GI Dr. I've had x-rays (show gas/air, constipation but no obstruction), abdominal CT Scan (normal), EGD (normal), Colonoscopy (normal), abdominal MRI (normal), Gastric Emptying Study (normal), waiting for Small Bowlel Follow through (waiting those results).

The first GI Dr saw no reason for my symptoms and said I have IBS brought on by the surgery.

My symptoms have changed a bit over the past couple of weeks - I am getting my apptite back, I can eat more normal amounts of food, I don't constantly feel as though I'm going to throw up. Things are getting closer to normal except the bowel movements - they're still off timing and consistency..I still have a lot of pain in the appendectomy area...

The other GI Dr I consulted with ordered a panel of labs from a speciality lab in CA call Promethus. It came back with a diagnosis of Ulcerative Colistis.

When I spoke with the first GI regarding this, he says there is no way I have Ulcerative Colitis - he would have seen it on the colonoscopy.

When I mentioned this to the 2nd GI, he said he's confused by that as well..

So, do I or don't I and what should I do now?

Thanks for letting me be so long winded.
03-08-2012, 11:26 AM   #2
David
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Hi Birdmom and welcome

Some of those Prometheus tests aren't the most accurate things in the world. Based upon all the other normal tests you've had, I'd agree with your GI who said you don't have UC. I'm glad you got the small bowel follow through though. Please let us know what the results of it are.
03-08-2012, 06:33 PM   #3
Birdmom
 
Join Date: Mar 2012
Hi David

Thanks for your response.

The small bowel follow through was normal..I think it took 40 minutes ...the report said it was unremarkable - everything noted was normal. I don't have the report in front of me but everything was normal and I guess the 40 minutes was also normal.

The intestinal issues are improving - my main issues now are the pain in the side - where the appendectomy was and the timing and consistency of my bowel movements. I don't have diarhea, or blood but I do have two or three movements each morning with the consistency of something like oatmeal....?????????????????????????????
11-11-2012, 06:06 PM   #4
cyborg1939
 
Join Date: Nov 2012
Location: California
Which of the Prometheus tests were abnormal?
11-11-2012, 06:11 PM   #5
Birdmom
 
Join Date: Mar 2012
Well, the report showed that I have UC...I've had two GI Drs disagree and say "no way".
11-11-2012, 06:33 PM   #6
cyborg1939
 
Join Date: Nov 2012
Location: California
Well, the report showed that I have UC...I've had two GI Drs disagree and say "no way".
OK.....we already read this...in various postings. But the question is can you give the specifics of the abnormal blood tests? p.s. you have the right to get a copy of ALL YOUR TESTS etc. ( fyi)....The devil is in the details as they say.........
11-12-2012, 05:03 AM   #7
Birdmom
 
Join Date: Mar 2012
I have the results somewhere (the test was back in March). After having three GI Drs tell me they wouldn't have even considered ordering the test and that they're not very accurate, as far as diagnosing, I just put it away. If I come across it, I'll post the specific numbers.
11-12-2012, 04:14 PM   #8
cyborg1939
 
Join Date: Nov 2012
Location: California
Thanks. Some of the results are not in numbers....some are just DETECTED or not detected ( with the normals in parentheses). I am somewhat perplexed that you say 3 ( GI docs?) doctors demeaned out of hand such blood tests. As best I know they do add to the diagnosis (es) with some power.
11-12-2012, 04:34 PM   #9
2thFairy
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Cyborg--I've heard about a 50/50 split on whether doctor's think Prometheus testing holds significance or not. I think it helps diagnosis, but is not an end all for diagnosis.
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11-12-2012, 04:40 PM   #10
cyborg1939
 
Join Date: Nov 2012
Location: California
2th Fairy----------can you elucidate what exactly is the GOLD STANDARD to clinch a dx of either UC or Crohn's? Is the biopsy histopathology clearly and always a clincher? Or if not always exactly why? any references appreciated if needed...
11-12-2012, 04:50 PM   #11
2thFairy
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Most around here say the Gold Standard is visualization, i.e., colonoscopy/endoscopy and/or biopsies. There are SOOO many components to IBD and GI doctors don't agree on what is and isn't IBD with the exception of visible ulcers, strictures, granulomas and biopsies, with further lab work to help solidify the diagnosis when these come up inconclusive. Blood testing/gene markers is getting more specific and therefore more useful, but as I understand it, Prometheus testing is still not considered reliable by all physicians.

DustyKat or Judith can surely shed some light on this. I don't have all the facts, by any means!

EDIT: I forgot to mention that PillCam, small bowel followthrough, MRI, MRE, etc. are other good visualization exams that are used for diagnosis.

Last edited by 2thFairy; 11-12-2012 at 05:26 PM.
11-12-2012, 05:12 PM   #12
Birdmom
 
Join Date: Mar 2012
I have had a EGD,Colonscopy, (nothing wrong, not even irritation seen), CT Scan, MRI, Gastric Emptying Study and Small Bowel Follow Thru, all normal.
11-12-2012, 05:28 PM   #13
2thFairy
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I sincerely hope you do not have UC, Birdmom, as it really sucks. May you find relief soon!
11-12-2012, 05:48 PM   #14
Judith
 
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Hi Birdmom, welcome to the forum.
I am sorry you are having so much trouble getting a diagnosis. I am curious what the numbers were on your Prometheus test. I agree the Prometheus blood test is not 100% accurate in diagnosing CD or UC. Some of these tests can be elevated with other conditions as well and are not only specific for CD or UC. And sometimes it can give a "diagnosis" that looks like both!

Are your regular blood tests abnormal at all (CBC, Chemistry, etc)? Do you have fevers at all? When was your last gynecological exam? Are your ovaries painful? Do you have any Gynecological problems?

Are you on antibiotics? Other medications? Have you been tested for any food (or other) allergies? Could Celiac Disease be a possibility?
11-12-2012, 05:52 PM   #15
Hobbes650
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Most around here say the Gold Standard is visualization, i.e., colonoscopy/endoscopy and/or biopsies. There are SOOO many components to IBD and GI doctors don't agree on what is and isn't IBD with the exception of visible ulcers, strictures, granulomas and biopsies, with further lab work to help solidify the diagnosis when these come up inconclusive. Blood testing/gene markers is getting more specific and therefore more useful, but as I understand it, Prometheus testing is still not considered reliable by all physicians.

DustyKat or Judith can surely shed some light on this. I don't have all the facts, by any means!

EDIT: I forgot to mention that PillCam, small bowel followthrough, MRI, MRE, etc. are other good visualization exams that are used for diagnosis.

Ditto- the best way to know is for doctors to go in and look. Based upon where the involved area is, and what it looks like your doctor can then get a much more accurate diagnosis. If you do have bloody stools, then it's actually easier to diagnose since the area that is bleeding will look different in UC versus Crohns. If not bleeding, it's a bit more tricky. BUT regardless, the proper meds can be started as well as a recovery plan.
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Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
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