getting diagnosed

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kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 1/29/2009 8:52 PM (GMT -7)   
hey, i was just wondering if there is anyone else who has been diagnosed with crohn's disease purely based on their symptoms? does something always have to show up on the inside? i tested positive for the inflammation once, before i started medication and i have a lot of the symptoms such as weight loss, D, fatigue, mouth sores, constipation, gurgles, ribcage pain. my GI has ruled out IBS and says it can take 4 years to officially diagnose and that they cannont get to every part of your system when they do the gastroscopy and colonoscopy. i think i am in denial! he was going to put me on steroids to calm my stomach down but thinks it may have settled for a bit now. it's been playing up again and i don't want to tell him cos i dont want to be put on steroids!
 
i'm 5'0 and weigh 41kg so i need to put on some weight. i am stable at the moment but it seems whenever my stomach starts acting up it goes down. does anyone have any nutritional advice? also sometimes after eating i get a slight pain as if i am about to have D but nothing happens and the other day i had such bad constipation i almost vomited. is this all tied to crohn's? it's just so confusing!

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/30/2009 5:09 AM (GMT -7)   
I just want to say, you sound like me, storybook case.... I lost 50 lbs, frequent BMs, blood in the stool, fatigue, pain, now getting constipation at times, and now also stomach ulceration & inflammation as well. It has been a year & a half & I am still not dx'd. GI has been back & forth. I had c-scope that showed ulcers & inflammation. Then I was put on azulfidine & prednisone & the next scope was clear after being on those drugs for 4 months. I just had an EGD a few weeks ago that showed ulcers & inflammation as well. I am waiting to hear back from GI on if this is CD or not.... She is putting the dx on the Prometheus test and have not heard the results as of yet.

I hope you find the care you need. Luckily I have a great PCP who will care for me no matter what the GI says.

I wish I could give you some great words of wisdom, but I just can't. I don't really have any, I am afraid. If you have problems & you will know when something is really serious, get your butt to the doc (hopefully you have a good doc you trust....). Unfortunately this a terrible disease that is sometimes difficult to dx, from what my PCP says also. So we end up putting up with & going through a lot with this DD.

Take care.
Hugs,
Heidi
Live for today, for tomorrow you might just get hit by a semi.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 1/30/2009 5:59 AM (GMT -7)   
i took my doctor 1 year to diagnose me.

you can see everything first he could do gastroscopy and colonoscopy and then you could eat a camera pill like this one http://www.msnbc.msn.com/id/3606947/

I would never be ok with taking meds and steroids for Crohn's with out these tests ..
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 1/30/2009 9:44 AM (GMT -7)   

My first GI would not diagnose me, even though I had ulcers in my TI and inflammation in my cecum and ascending colon.  My biopsies also showed cryptitis.

When I went to my current GI for a second opinion, he thought Crohn's just based on what my colonoscopy said.  He ordered the pill cam to see if I had small bowel involvement as well.  The pill cam found inflammation throughout my entire small bowel and the I was "officially" diagnosed with Crohn's.  I had the symptoms of Crohn's about a year before my official diagnosis (Diarrhea, eye inflammation, mouth sores).

Before I was diagnosed, I believe I was in a form of denial, too.  I knew something was wrong, but I didn't want it to be Crohn's.  At the same time though, I was frustrated NOT knowing for sure what was wrong. 

I wish you the very best and hope you get answers soon.

 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/30/2009 3:34 PM (GMT -7)   
Hi It sounds like it could be tied to crohn's but you need to be open with your Dr. even if you don't want to be put on steriods. Boost or ensure are great for helping put on the weight. Constipation can be very annoying I know ,I found it as bad almost as D,when I had my blockages it was nasty and I used to wish for the D again, hmmmm, wasn't a happy camper back then. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 1/30/2009 6:15 PM (GMT -7)   
thanks so much for your responses! it's nice to know i'm not the only one who is finding it hard to get answers! =)
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