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Considering a new GI doctor...

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Crohn's Disease
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Posted 6/19/2011 8:13 PM (GMT 0)
I feel like my GI doctor isn't being very useful, or at least not telling me things? I keep reading about Crohn's Disease whether it's here on the forums, or in an article or a book, and I keep reading that people with Crohn's Disease have a hard time digesting food, and the nutrients and foot ect. I have headaches every day, and a racing heart. I'm on Pentasa for my GI pain.

My doctor tells me that Crohn's Disease wouldn't cause me to get headaches every day, or have a fast heart rate or elevated blood pressure or worsening vision or anxiety and depression. Even though when I filled out my entrance form it asked if all of those were my symptoms. I still have tremors and such too. A lot of shaking. A lot of warmness, and sweating.

I have a capsule endoscopy soon with him, he has to call to schedule it this week. I also am going to see a neurologist for my headaches. I started taking Tramadol for my headaches and body aches.

I literally feel like I'm dying every day and sometimes wonder why I even bother to keep my job or continue my education because I keep thinking I'm going to die in the near future. it sounds stupid. But now it seems like my headache pain, and neck pain seems to surpass my GI pain most of the time.

I asked him if I should take vitamins but he told me they wouldn't really help me.

I feel like I should find a different GI doctor...any thoughts?

Post Edited (Adam DoubleYoo) : 6/19/2011 2:16:52 PM (GMT-6)

Posted 6/19/2011 9:48 PM (GMT 0)
hey adamdublyoo......I believe its always important to get a second opinion when dealing with or are going to go through any significant surgury or health concern.... my oringinal doctor misdiagnosed my crohns for proctitis, it soon spread to my large colon and as i wasted time the symptoms got worse. i should have been a little more wiser to get a second opinion. now im on my second doc who listens well to what i tell him and im in a much better place....some of these doctors we see are arrogant and dont listen to what we tell them about our symptoms....hope you feel better.....dont hesitate to get a second opinion...which is my opinion....
Posted 6/19/2011 10:35 PM (GMT 0)
thank you for your words! i definitely want a second opinion. i want to see what happens after my capsule endoscopy, and if he still has nothing to say, I'm finding a second opinion
Posted 6/20/2011 2:19 PM (GMT 0)
Hi Adam!  I was diagnosed in Jan. 2010 by one doc and switched doctors in February of this year because I felt like my old one wasn't providing the best care possible.  He was very dismissive when I would ask questions and express my concerns.  He diagnosed me through a colonoscopy and immediately started me on Entocort and Pentasa.  My symptoms improved a lot but I still would have occasional bouts of pain and diarrhea.  He said the occasional bouts weren't really "flares" and due to the improvement, he said I should continue on the current course of treatment indefinitely, unless things worsened.  I remember the exact words he said to me:  "Treatment and follow-up is based on your symptoms.  If you're feeling better, then we continue the way we've been going.  There's no need for follow-up testing."

I wasn't satisfied with this and somehow lucked into an appointment with one of the best Crohn's doctors out there.  The new doc was/is WONDERFUL.  He takes more than enough time with me at my appointments and won't leave the room until I feel totally comfortable with what we've talked about/decided to do.  He ordered a huge panel of blood work and a small bowel follow-through to see where I was with possible remission.  The bloodwork and small bowel series showed that although my symptoms were better, I still had active inflammation that if left to continue, could lead to permanent scarring, stricturing, fistulas, etc.  He was shocked that my former doctor was going to blindly contniue the Entocort without following up to see if I was truly in remission. 

I guess the point of all that is that if you feel you're not getting the care and attention you deserve, then, absolutely look elsewhere.  There are some really wonderful doctors out there... and some not-so-wonderful ones.  I've found in recent years that we have to take charge of our healthcare!  Best of luck to you and I hope you start feeling better.  :-)

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