Where should I go from here?

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Regular Member

Date Joined Nov 2007
Total Posts : 147
   Posted 11/9/2008 9:57 AM (GMT -7)   
Hi Folks,
I am trying to decide if I should go for a second opinion or not.  A quick background I was dx with Celiac disease over 3 years ago.  Went on the GF diet but never quite got better.  My GI at the time was horrible and basically refused to look for anything else telling me I have IBS and hormonal issues (without doing any diagnositc workups).  So last year my health got progressively worse so I left and found a new GI.  This guy has run just about every test under the sun on me and basically he is pretty sure I have Crohn's yet there has been no biopsy that has come back positive for crohn's....just chronic inflammation.  Bloodwork keeps coming up positive for Crohn's.  So I have been on all the regular meds etcs.  I was feeling so so until he put me on prednisone which made me feel great and I only had trouble during tapers.  I finished off the prednisone in mid August.  Mid September I was a mess with bleeding, D, bad stomach pain bloating etc.  I went to my GI and he was all ready to put me on Remicade but wanted to get another look at what was going on before we progressed with that treatment.  He had me in for a colon/endo 2 days later.  He said everything actually looked fine if not great and that the bleeding was just form hemmies.  All biopsies came back normal so he deemed me in remission.  Only problem is that I keep on having issues and I feel like crap.  Mid October my "sympathetic" arthritis started acting up big time and my stomach is acting all crazy especially with really bad noises in the night and some D.  I keep feeling like there is trapped gas and when I massage my stomach it finally moves.  Fever is also back on occasion.  Is it possible that the disease activity is actually in the small intestines where they can not see it with the scopes?  I had the pillcam and small bowel series done back in March and they actually came back normal so I am not sure that is the case.  My husband wants me to see a new GI because he thinks that the review of the results is only as good as the Doc reading them.  At the end of the day I wonder if i just have bad IBS too but then I question that because I did so well on the prednisone.  So I am not sure if I keep pushing this doc or if I go to another one to see what he/she has to say.  In the grand scheme of things I don't have it nearly as bad as a lot of other folks but I do strongly feel that if they can't get a handle on this soon that I am going to keep getting worse.  Any thoughts/advice would be greatly appreciated.
Thank You

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 11/9/2008 10:16 AM (GMT -7)   
Veebo, I think it all depends on your Quality of Life. My thinking is if the pred made you feel better then it is definately something other then just IBS. I have IBS also so I have to use other criteria for having a flare other then just gut issues.

Everyones "remission" is different too, but if your QOL is not what you can deal with then you and your doctor needs to get you there. If you feel this doctor isn't working with you then get a second opinion. Have a great weekend anyway.

Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (27) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

Post Edited (Mormor Vicky) : 11/9/2008 10:28:47 AM (GMT-7)

Regular Member

Date Joined Mar 2005
Total Posts : 79
   Posted 11/9/2008 4:11 PM (GMT -7)   

I agree with Mormor Vicky

If you dont feel well then your doctor needs to find something that will help.  A GI should be be able to help you with the issues even if its not Crohn's related.

Finding a good doctor is really difficult but it may be worth trying to talk to your GI again about your pain and see if he can suggest something to help, if not then you need to find someone who will.

Good luck!

October 2003 - Dx/ed with Crohn's disease
April 2004 - 2ft of small bowel removed plus complications due to abdominal abcesses - 6 weeks in hopsital
October 2006 - perianal abcess, surgery to have drain inserted
February 2007 - abcess wont heal surgery for temporary ileostomy, started Remicade
Oct 16th, 2008 - Surgery to reverse Ileostomy - in Remission first time ever!!

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 11/9/2008 4:18 PM (GMT -7)   
I agree with your husband. Are you in or near a rather large city that might have a GI that specializes in inflammatory bowel diseases? I had every test possible and in the end my first GI put his arm across my shoulders as I left an appointment and pronounced "you are enigma." That was my last appt with him. I located a Crohn's specialist and at the end of my first appt with him walked out with a diagnosis. He only had to review all of my test results to see that I had CD. My first GI was not convinced because the biopsies did not show granulomas. Only 55% of biopsies in patients with CD show granulomas.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

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