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LA
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/21/2007 10:16 AM (GMT -7)   
Hello, I'm new to this forum and just have a couple questions. I'm 42, I've had daily moderate LRQ and mild to moderate LLQ pain for over 7 years, have had two lap surgeries in 2001 & 2002 to take down internal adhesions as we thought that was the source of the pain (appendix came out in 2002). Over the past three years have had occasional short flares of hand/joint pain. Have chronic low back pain all my adult life.
 
Any, in July the hand/joint pain flared with unusual intensity and hasn't stopped. At the same time the intestinal pain kicked up a few notches and I now have two more areas of pain in the upper right near the gallbladder and upper left. Since July I've been through ultrasounds, cat scans, blood tests and finally last week a colonoscopy, all negative. Blood work initially had a normal sed rate, last week's is slightly elevated at 24. GI changes over the last four months were increased bouts of alternating diarrhea/const. along with the increased pain and nausea, but no blood in the stool.
 
In consulting with the Rheumatologist he ran the Prometheus 7 test a couple weeks ago. It came back predictive for Chrohn's, with the Anti-CBir1 at 112.8 (normal range <21), IFA Perinuclear Pattern detected, and DNAse Sensitivity positive. The Rheum commented that to him this was a weak result, and if I had shown strongly positive in all areas he would have been more concerned, so we're on a wait and see and presuming it's IBS not IBD.
 
Do many docs out there put much stock in the Prometheus test? Do many of you go through ambiguous or negative test results only to come up positive later? Are there any other tests that might help get a clear picture?
 
My approach right now is to eat better, excercise more, etc. and hope to start feeling better. I remain concerned though, because I just recently tested positive for another AI disease (Hashimoto's), plus I have a sister and two nieces with Crohn's, sister with Lupus, a two other relatives with MS & UC.
 
Sorry this is so long, I look forward to hearing any feedback you might have...... Thanks!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/21/2007 11:52 AM (GMT -7)   
Hi LA, Welcome to Healing Well, I had the Prometheus test done before I started Remicade. It is
one way of diagoses for Crohn's. I had many test done. Even though my GI doctor new it was
Crohn's.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/21/2007 1:53 PM (GMT -7)   
Hi Just wanted to add my welcome to HW . Good you are not showing inflamation but I can understand your concern about your DX. Hope things work out for you .What if anything is the Dr. giving you for the pains.lol gail

LA
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/21/2007 5:16 PM (GMT -7)   
Hi, thanks for your responses. No meds as of now, the Rhuem doesn't want to jump the gun and do prednisone based on the diagnostic info at hand, because the side effects outweigh potential benefits at this point. I guess I'll just stick to Tylenol and natural methods of pain control and coping for now and hope the GI wasn't wrong. He was rather cavalier with his dx - he said (and I quote), "It's IBS. Eat more fiber." I just don't want to find out he was wrong and suddenly get sick the way my sister and nieces did - they all ended up in the hospital with sudden bleeding, my sister ended up getting a transfusion and hasn't been under control since.

Anyway, thanks for the kind words :)

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/21/2007 5:31 PM (GMT -7)   
Welcome to Healing Well, LA! I'm sorry you have had so many difficulties these last few years. Your story is not uncommon. Many of us had a long road to diagnosis. If I told you how long it took me to get a diagnosis it might frighten you so I will say that newer testing models have improved the time it takes for most to get a diagnosis. It can however take a while. The fact that you have a VERY strong family history of Crohn's and autoimmune diseases makes the likelihood that you have an inflammatory condition of the intestines more likely.

Your problems with joint pain and back pain are also seen with many that have an inflammatory bowel disease. There are also other autoimmune diseases that have joint and spine issues as a complication. I'm glad that you are seeing a rheumatologist because they are very good and deciphering autoimmune issues. Do you know if your rheumy has tested you for ankylosing spondylitis? Over at the Spondylitis Association of America site, they have a comprehensive section on the symptoms of the various spondylitis diseases. Some of these diseases also can have GI problems associated with them.

How much weight do doc's put in the Prometheus Serology 7 test? Well, it depends on the doctor and their specialty. I think you should have that Serology 7 test reviewed by a GI because they are better suited to interpret the test than a rheumy in my personal opinion. My GI is a fan of the Prometheus test and uses it alot.

The only test you haven't listed as having is the capsule endoscopy. This is a tiny camera pill you swallow and it takes thousands of photos of your small bowel. The small bowel can be the site of Crohn's and a colonoscopy cannot get into more than the end of the small bowel. That leaves about 20 feet that can't be examined. A CT scan and small bowel follow through don't always pick up Crohn's either.

I hope this helps. If I have confused you, please let me know. Again, welcome to our community.
Ides


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/21/2007 5:50 PM (GMT -7)   
about your Prometheus test. I just checked the notes that are written on the report form of the Serology 7. I strongly encourage you to get these test results to a GI because:
"~~ Anti-CBir1:Assay values above reference values were associated with small bowel, fibrostenosing and internal penetrating disease (Targan S, Gastroenterology. 2005;128: 2020).
~~ Assay values above reference values occurred more frequently in pANCA positive CD patients than in pANCA positive UC patients (Targan 2005)."
"~~ pANCA (NSNA) positivity in CD was associated with the occurrence of features generally seen with UC, including increased incidence of rectal symptoms (Vasiliauskas E, Gastroenterology. 1996;110:1810) and a lower incidence of fistulizing and fibrosing disease (Vasiliauskas E, Gut. 2000;47: 487)."

Your test results are pretty indicative of small bowel disease. You really need that checked especially because of your previous surgeries. Please let us know what yopu are going to do. Also, just a reminder, I am not a doctor; just someone that has done alot of reading and studying about this disease.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/21/2007 7:14 PM (GMT -7)   
Welcome to HealingWell LA! Sorry you need to be here, but rest assured you are in the right place!
You are just getting your first taste of the horrible world of IBD arthritis. A topic of great interest to me now, since mine is in full flare. Feet in two places each foot, knees, & something new. The first time ever, it has hit my hands along with the fingers. I can barely turn a door knob.
Also recently learned I have Osteoarthritis too. in fact, my lumbar spine is a mess.

Sincerely,
Matthew

LA
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/21/2007 10:34 PM (GMT -7)   
Wow, thanks for the additional info everybody :) You're right, I haven't had the upper endoscopy, just the colonoscopy, CT scan and ultrasound, all negative. Sounds like there are a few more things I should pursue. I'm going to have to find a new GI because the one I went to hasn't impressed me much, not very good "bedside manner". I'll have to go back through labs and see what all has been tested for and figure things out from there. Unfortunately the several docs I've seen at the clinic I've been going to are all focused on stress and sleep apnea, I can't seem to get them to pay attention to the few positive test results that have come up that indicate something is probably wrong, both with my thyroid and my innards.

Anyway thanks again for all the kinds words of advice, I'll check back when I get some more information :)

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/22/2007 7:13 AM (GMT -7)   
If that IS all they focus on, its time to find another clinic. They will waste valuable time you may not have..

Matthew

redrose
Regular Member


Date Joined Feb 2007
Total Posts : 138
   Posted 10/22/2007 8:32 AM (GMT -7)   
I had the prometheus test in December and it came back negative. In January I had a small bowel resection removing 2 feet of small bowel. So the test is not the be-all and end- all of indicators.
Redrose

Undiagnosed symptoms for many years. Dx w/ Crohn's in 12/06. Sm. Bowel resection (60cm.) 1/07
current meds: Imuran, pred., pentasa, kristalose, probiotics, omega 3, temazipam, oxycodone for continuing pain

Count your blessings - not your problems

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