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Crohn's Disease
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Posted 12/28/2007 8:13 PM (GMT 0)
I was surprised to get a call from the nurse today.

The doctor reviewd my CT SBFT and biopsy slides, and the overall picture is highly suggestive of Crohn's. 

Of course, when I showed up for the colonoscopy the doctor looked downright irritated, I don't think he expected to find anything and he probably felt like he was wasting his time. So we all live and learn...

After the colonoscopy on Friday they also drew blood for tests. I didn't know what for (Verced...) but the nurse told me today it is the Serology 7 test. So I guess if that's positive then it's official. That test will come back in the next week or two, and if it's Crohn's I'll ask for the DNA test and my husband wants to get it too, he has an aunt with severe Crohn's.

I will probably still go back to U Chicago for a second opinion, or maybe see someone in Miami, since my symptoms have been atypical.

Posted 12/29/2007 1:38 AM (GMT 0)
Well, it's one of those good news, bad news things. On the one hand, no one wants to have Crohn's. In the other hand, you've gone through an awful lot trying to get a diagnosis. At least identifying the disease gets you one step closer to finding a treatment that will keep you healthier. As a long-term inhabitant of diagnostic limbo myself, I think that knowing what you are fighting is probably preferable. Good luck with the next steps in the diagnostic/treatment process.
Posted 12/29/2007 1:55 AM (GMT 0)
keep us posted. sorry to hear the news, but it is good to have answers. when do you see the doc?
Posted 12/29/2007 3:36 AM (GMT 0)
Thank you for your replies. I don't have another appointment with the GI doc until Jan 31, but I expect that as soon as the Ser 7 test is back the nurse will call me. I also have an appointment with infectious disease on Jan 8 but I may not be keeping that one.

It's disappointing because I was getting better and I really believed the doctors when they told me my issues were all just because of the birth control pills. But I will be happy to have a real diagnosis.

Lately I've been having the discomfort on my right side, near the bottom of my ribcage, it feels like bloating or pressure. I had it when I was hospitalized in July, and on-and-off since then. Not painful, just uncomfortable. It seems to have become more prominent lately... Maybe because I'm thinking about it too much eyes I know my bowel is narrowed, and I feel like I should be doing something about it. But the doc didn't say anything and I don't know where to begin. Hopefully they will move up my appointment.

Posted 12/29/2007 4:15 AM (GMT 0)

Dear Confused in IL

I am sure you are anxious about all the testing and the illness so give yourself permission to worry a bit.  It is normal and it beats trying to hold all your feelings inside.

You will find that Crohn's takes many different pathways and each person has their own story.  There is something comforting about baring your soul to the members of CD Forum  and still being able to be anonymous.

We will help you through, so keep posting.

Gentle Hugs

Kitt

Posted 12/29/2007 9:51 AM (GMT 0)
When I first got my diagnosis of Crohns, I was so relieved that it was not cancer, that I don't think it sunk in at all how hard this disease would be. But it is so helpful to finally have a diagnosis and begin treatment to feel better. It really bugged me that my doc didn't start any medications untill all that tests were completed. It took about 6 weeks to get all my tests and I felt I suffered unnecessarily. If your Serology test doesn't come back soon, you may want to see if they want to give you any meds while waiting. Good luck, and let us know how you are.
Posted 12/29/2007 3:00 PM (GMT 0)
When I first got my diagnosis of Crohns, I was so relieved that it was not cancer

 

Oh yes, I know what you mean. My primary symptoms have been hepatomegaly and fevers/night sweats, with some abdominal pain. For a while I was very afraid I had lymphoma. But I think they would have figured that one out by now.

I have a relative who is a veterinarian, and she told me a few months ago, "I saw this cat and it made me think of you. It's liver was HUGE! None of us could feel it, we only saw it by x-ray and we were very surprised!" That is exactly my story. So I asked her what happened with the cat. "Oh, it had lymphoma. We euthanized it."  AAAAHHHHH

Posted 12/30/2007 9:50 AM (GMT 0)
Your veterinarian relative needs a little empathy training!!!! Try not to be scared. I'm not a doctor, but I think with the colonoscopy and biopsies they can rule out the cancer, so you can at least move past that. If you are still in pain and having symptoms, then Jan 31 is a long time to wait with no help. Call the office after new years and ask for an earlier appointment. Don't be afraid to be assertive, and let us know how you are.
Posted 1/1/2008 2:30 AM (GMT 0)
Good luck with everything. I'm in Illinois too and see Dr. Hanauer at the Univ of Chicago and he's awesome, as is his staff.
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