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sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/5/2009 4:32 PM (GMT -7)   
Hi
I have undergone a slew of tests in the last six months: 2 colonoscopies, 2 cat scans.  Both showed my colitis worsening.  Also showed ulcerations and non-caseating granulomas and giant cells.  My doctor said I probably had crohns and put me on prednisone to put it into remission. He also did several stool tests and bloodwork.  He called today to say he's not sure I have crohns or UC and wants to do bloodwork to test for IBS.  WHAT???  I'm so confused.  Everything I read from the reports and researched points to Crohns or UC.  Could this really be IBS.  I've had severe sharp pain, cramping, Diarrhea, lots of mucous, pale stools and small amounts of blood in the stool.  None of the sulfur drugs worked or mesalamine or prednisone or enemas or antibiotics.  Diet does not seem to matter except for alcohol maybe.  Any advice would greatly be appreciated.  I'm confused....
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/5/2009 4:45 PM (GMT -7)   
I'm sorry you are going through all of this. From what I understand, IBS can not cause bleeding. But if you have any type of hemmi, that could cause bleeding... But has your doctor sent your blood work out to prometheus labs to test for the IBD marker. I'm not the expert on this, but I'm sure someone will be along who can give you more info. But, if you test positive its a really good indication that you do have an IBD. You can have both an IBD and IBS.

Just be aware that the site is not as active on the weekends. So if your post drops down, just bump it back up to catch more people's attention.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/5/2009 6:10 PM (GMT -7)   
You may have IBS as well but from what you describe you certainly have either UC or CD cuz with IBS not only is there no bleeding involved but there is also no inflammation, ulcers or polyps. You can certainly get a second opinion from another GI.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 6/5/2009 6:44 PM (GMT -7)   
They thought I had IBS at first as well....my family DR still says I probably have both. I didn't know there was a test for IBS...what is the test? Is it a bloodtest of somesort?

Good luck and I hope you feel better soon

36/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Imuran 50 mg daily,Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/5/2009 6:55 PM (GMT -7)   
Yeah, I have never heard there to be a blood test for IBS either and my daughter recently saw a GI about some tummy issues (she had a scope,CT scan, blood work which all turned out good showing no UC or CD) so has chalked her symptoms as severe IBS, but the doc said there was no blood test to confirm IBS only having scopes and other tests to rule out an IBD (CD or UC) leaving IBS as the logical ailement.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/6/2009 6:25 AM (GMT -7)   
Did any of the doctors do biopsies during your scopes? That would definetly show if you had CD or not. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/6/2009 3:26 PM (GMT -7)   
Thanks for all your replies. I did some research and found this PROMETHEUS® IBS Diagnostic is the First Blood-Based Biomarker Test for IBS on the internet. I'm guessing this is the test the dr is doing monday. but i will verify on my appt friday. I had a horrible night. Awoke with painfull D. and am now bleeding again worse than before the prednisone. I do not think this is IBS. I kinda wish it was but I'm thinking its not due to the blood. I had a horrible reaction to prednisone. It put me in a wheelchair for 2 weeks. 2 weeks completely off prednisone and I'm still having painful legs and trouble walking but its getting better. So I will not go on prednisone again. I will probably try remicade now. (thats what the dr. said) I did have biopsies. As a matter of fact when I came out of the colonoscopy the dr. said well at least you don't have crohns but when the biopsies came back he said I probably had crohns due to the granulomas. He did a slew of tests and I'm going back on Friday for all of the results. But we'll see what he says.... Also this is a second opinion. The first said I had infectious colitis and I did 7 rounds of antibiotics with no help. Everytime I called she would just prescribe another antibiotic. I couldnt take anymore antibiotics so I had to find a second opinion. I will let yall know what happens. By the way I'm a 28 yr old female. :)
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 6/6/2009 5:05 PM (GMT -7)   
I have Crohn's and IBS, and your symptoms sure do not sound like IBS to me! I hope you can get help soon. I'm sorry you are going through all of this! I was very suprised about the blood test for IBS! I thought it was all due to spasms of the bowels...interesting!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/12/2009 6:28 PM (GMT -7)   
Hi guys,
 
Just got back from my appointment and wanted to let yall know what happened.... I was finally diagnosed with Crohn's disease.  Kinda new it was coming but I'm just glad to finally have a name to the sickness and a course of treatment.  The prometheus test was actually a test to determine between crohns and UC.  He said there is no official IBS test and did not believe that is what it was.  Nurse misinterpretted the info.  I tested positive for Crohns and negative for UC.  Since I've had such a bad reaction to all the meds:  steroids, lialda, enemas, and antibiotics.  I am now going for Remicade treatment.  I'm actually looking forward to it... hoping for some kind of relief.  Hopefully the insurance company will approve! 
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/12/2009 6:30 PM (GMT -7)   
Also wanted to say thanx. This website has been a valuable resource for me both emotionally and for research.

You people are great! :)
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/12/2009 6:35 PM (GMT -7)   
Oh yeah one more thing... it was crohns colitis, small bowel was normal, inflammation is only in the large bowel... I guess I'm lucky?
Just finished prednisone taper of 40mg in 6 weeks.  We'll see if it works.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/13/2009 7:52 AM (GMT -7)   
Sorry to hear you have to join us, but am sure you are glad to finally know whats going on. Post any questions you might have, we will gladly try to answer any we can.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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