New Doctor says i dont have crohns?????

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jdcrohns
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/2/2007 8:41 AM (GMT -7)   
Hello all,
I recently moved to a new city, and got a new GI doc. My last GI doc diagnosed me with crohns ileitis after 20 or more visits and every test in the book and i have been receiving treatment for it for over a year (pentasa, 6-mp, antibiotics, high dose steroids). After struggling for a very long time with abdominal pain, very frequent bloody stool and all the other classic symptoms (joint pain, eye swelling etc..), a combination of a prednisone cycle and long term 6-mp seemed to put me on the right track. I have been symptom free since July this year. My new GI doc wanted to check to 'see for himself' that I had crohn's, had 1 10 minute appointment with me and 1 colonoscopy during my remission time, and now has told me to stop taking all my medicine immediately because i don't have crohn's. He said to me 'you have inflammatory bowel disease in your ilium, we can see it, but its not crohn's because you dont have the genetic markers'. Whereas my last GI said 'you definitely have crohn's, just without the genetic markers, which is common'. I am very confused and not sure what to do, I have stopped my medicine and now I am terrified of relapsing. How can my new GI know so quickly? What is the difference between non-crohns IBD in your ilium and crohns ileitis? My cramping pain and joint pain are out of control, and my new GI just ignored my requests to see a joint specialist, should i try to get into a pain management program or get a pain specialist?

~JD

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/2/2007 8:59 AM (GMT -7)   
Sorry, say what????

Isn't inflammatory bowel disease in the ileum called Crohn's disease? I think you need a second opinion a new GI, and/or call your old doctor, explain what's going on, and ask him to call your new doctor.

I wouldn't stop taking your meds if they're working, but this is all just my opinion.

I've never had a genetic test to my knowlege, but have had this disease and been treated for this disease for 30+ years.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/2/2007 9:07 AM (GMT -7)   
do a search on google for "inflammation of the terminal ileum" and see what comes up........
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


jdcrohns
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/2/2007 9:18 AM (GMT -7)   
thank you Judy for making me feel like I'm not the crazy one. unfortunately I have run out of my medication, so I cant continue to take it even if I want to. I have an appointment on next Wednesday with this guy, so hopefully I can either get this sorted out, or tell him he isn't my doctor anymore.

Is it always this hard switching doctors?

~JD

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/2/2007 9:30 AM (GMT -7)   
I would call your old doctor and tell him what's happening, maybe he'll call you in an Rx while you're waiting and trying to educate the new guy.
 
While you're on the phone with your old doc, ask him if he knows anyone he can recommend where you are now. 


Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 11/2/2007 10:00 AM (GMT -7)   
Wow, you are definitely not crazy! Get another opinion and take your results from your tests with you! That's ridiculous...It's nice that a 10 min appt. can trivialize your pain and make you feel like it's all in your head. I never had a "genetic" test but there's no doubt in my doctors' minds that i have Crohn's. I wouldn't stop taking your meds before you get a second opinioin. Good luck, some docs really suck!
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop
Now on Prednisone 40mg, stopped Entocort while on pred.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/2/2007 10:33 AM (GMT -7)   
You need to get all the records from your old GI and also call him to explain what's going on and see if he can call up the new doctor himself.  That will likely clear up any confusion and if not, at least he can argue your case for you instead of you having to do it.

Co-moderator - IBS Forum


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 11/2/2007 10:33 AM (GMT -7)   
I agree, change docs, but when you call for an interview ask if they specilize in Crohns. If they don't go to the next name in the book till you find one who does. Just because they are GIs does not mean they know a thing about our DD.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/2/2007 10:40 AM (GMT -7)   
What are the "genetic markers" for Crohn's?
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.

Started The Maker's Diet in early September.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/2/2007 10:47 AM (GMT -7)   
They're probably talking about the IBD serology.  There are certain blood markers that have a high specificity for people with IBD.  That means that although not everyone who has IBD has the markers, if you do have them, it's likely you have IBD.  If that makes any sense.

Co-moderator - IBS Forum

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