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Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 6/12/2008 12:10 PM (GMT -7)   
confused I went on the 29th and did the camera pill. Was waiting for the results and got a call, I was told that I have crohn's but its in the middle of my small intestines. But heres where my confusion comes from, I did the camera pill last year they found 4 sores, was told I had crohn's, then they changed their minds so after time and finally another colonoscopy, I was told I had crohn's, it was the bottom of the small intestines & the top of the colon. OK I got it now. After so many tests and so much s...t I have crohn's the most common type OK. So how can it move??????? I feel like I'm really going crazy now. I have to hear from my GI he's been out of town. And another thing the first time I did the pill they said it would just come out on its own so, I didn't worry but this time the doctor said I need to get a Xray to make sure its gone. I saw it so I don't need the Xray but, could that mean ther could be some sort of blockage???? The waiting to hear from doctors can drive me crazy..... sad I did the pill to see if there was a blockage and now I have to wait... I don't think doctors understand how hard it is the not knowing, and how the mind tends to wander....



Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/12/2008 12:29 PM (GMT -7)   
I think the medical system operates on an alternative universe called doctor time. I can appreciate the frustration you are feeling. You just want to know what you are dealing with. about wanting an x-ray, protocols change with time and it isn't necessarily a reflection of what they saw this time, it may just be that the standard of practice has changed because there is a risk of the camera getting stuck. Try to stay focussed on the positives. You know the camera came through, so you do not have a blockage (that doesn't necessarily mean that there isn't narrowing). The tests are enabling your docs to slowly build a picture of what's going on inside you. Remember many of these tests rely on interpretation. This is not an exact science and each test needs to be viewed in context with the others.

You have a lifetime to get to know this disease as it is going to express itself through you. You will be seeing your GI soon. Be ready with solid questions that will help you relieve some of the stress and confusion you are now feeling.
Belleenstein:

30+ years living with Crohn's.


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 6/12/2008 12:31 PM (GMT -7)   
ah, your email basically summarizes why crohn's is so hard to diagnose. It is a very elusive disease. I wouldn't say that "it moves" exactly. It effects different areas at different times. At this stage in my life, I have no small intestine involvement but problems in right and left colon and terminal ileum. A few years ago, it was my cecum and duodenum. ASK questions, be informed. Different drugs treat different area. And different foods are digested in different areas of the intestines. Definitely ask about the pill/xray. Did you use a different hospital/facility? Best of luck to you!!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/12/2008 12:38 PM (GMT -7)   
You are on Humira and still having these problems? A colonoscopy, is not the most accurate way, I have had many (lost count) and only once did he get a good picture. I never had the pill before, wish I did. I know what it is like to worry and wander. That is stressful, but you need to not think the worse, and stay calm. Stress is a bad trigger. Some doctors are quick and some are not. One thing I learn is when the summer holidays are near, I also get him to stock up, on meds. Best of luck and hope it all turns out well for you.

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 6/12/2008 12:55 PM (GMT -7)   
sence I've been on the humira the D's are so much so much so now I get C a lot. My GI and I was wondering if I could have a blockage starting thats why I did the pill. I had two colonoscopys by other doctors they saw nothing. I went to my GI and he did one and he saw the crohn's. I go to the same clinic and do the camera pill, But there are only two doctors that can read the film (pictures) and for both pills it was a differnt doctor. I don't know if that makes the different findings or what. I'm trying to keep a open mind. Its so hard to wait.



Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/12/2008 2:08 PM (GMT -7)   
Hang in there Dawn.  let us know what the results are.  We are here to help at least mentally. eyes
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