Cleveland Clinic Thursday 1/31

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Regular Member

Date Joined Aug 2007
Total Posts : 350
   Posted 1/27/2008 8:11 PM (GMT -6)   
So Im finally getting to see a specialist on thursday. Im excited but at the same time nervous. I was Diagnosed in Agusut but Has surgery for a fistula in April where I had suggestive crohn's/ Anyway. I have only been on imuran. Which did not work and Humira which is obviously not working. Pred is the only thing that makes it go away and at 40mg, I have had no side effects other than acne on my arms. Im now down to 5mgs and that is basiclly doing nothing at all. Everything is back. I have not had any specific blood test done to my knowledge and Im knda lost as to where the docotor will go next. Can you guys give me some good questions to ask?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 165lbs). On HUMIRA, Prednisone


Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 1/28/2008 9:56 AM (GMT -6)   
What are your primary symptoms. You mentioned a fistula. Did the surgery fix that? If so, what are your symptoms that are coming back now as you come off steroids?

More important than the questions to ask, is sorting out your history so that you can present your GI with clear, concise and relevant information to help him develop a management plan.

Sometimes at an initial appointment, it is better to follow the physician's lead. As i'm sure you have noticed from posting on this board Crohn's is a highly individualized disease. It expresses itself differently in just about everyone and not everyone responds the same way to medications, diet, exercise etc.

So your GI may not be able to answer questions relating to you and your disease until he has a better feel for how it is affecting you. May I suggest that you take the time now to really think about your history. Write it down chronologically. Then think about your symptoms and try to find precise terms for describing what you are experiencing and when. Write that down. Write down all of the medical/surgical interventions you have had. Yes he will have your chart, but it is really helpful if you have sorted it out in your mind as well.

Finally, about questions. What are you most worried about? What is causing you the worst problem? These are the things you might want to concentrate on. In my experience, it is far better to concentrate on three or four really pressing issues rather than going in with a grocery list. You will have other opportunities to consult in the future. there are no right or wrong questions, just figure out which you most urgently require answers to.

Good luck on Thursday.

30+ years living with Crohn's.

Post Edited (belleenstein) : 1/28/2008 10:21:08 AM (GMT-7)

Regular Member

Date Joined Nov 2007
Total Posts : 165
   Posted 1/28/2008 12:14 PM (GMT -6)   
I agree with the previous post about making sure you have clear details of the past so that the GI can get an accurate account of where your disease is and what has been done thus far. As far as questions to ask, I would suggest sitting down and thinking of as many things as you can - then make a list. Take the list with you and be sure to ask everything until you are comfortable with the answers. Don't be afraid to ask anything. Good Luck!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/28/2008 2:53 PM (GMT -6)   
Hello, I am so happy for you that you are finally going to see a specialist.  The suggestions given above are really great as it is so much easier to work from you notes then try to recall when you are in the physician's office.
Big hugs and keep us posted.
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

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