So Frustrated!!

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bmg0331
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 1/12/2010 7:35 AM (GMT -7)   

Hi all,

 

I've posted a couple of times but I haven't been formally diagnosed with anything yet.  I have the markers for Crohns.  I just had my 2nd colonoscopy in December (last one in January 2009) and it's clean except internal hemmies - AGAIN.  My GI even took biopsies this time and nothing.  I feel like I'm trying to run up a hill covered in honey!  I know I don't feel well but no one can find anything!  The next step is the pill cam which I hope to do sometime within the next month or so but it's hard not to get discouraged!  My follow up with the GI is on the 26th.  Are there any questions I should be asking?  I feel like I've been put through the ringer!  I've made a list of the symptoms I've experienced with some regularity since November 2008.  Please look it over and tell me what you think - I'm losing it:

 

Diarrhea

Constipation

Bloody stools (sometimes with mucous)

Occasional pain while defecating

Abdominal pain to include intense cramping

Body aches

Chills

Night sweats

Loud stomach noises

Fatigue

Occasional dizzy spells

Painful joints (mainly hands and knees)

Red, bumpy, weepy rash on my hands (really bad in May 2008 (lasted for months); off and on since then)

Bacterial eye infection (severe; on antibiotics for 10 days)

Not to mention I've had 2 colonoscopies, blood and stool tests, a small bowel series and an upper endoscopy done with no real results.  As I mentioned before, the blood tests showed Crohn's markers but that's basically all I have.

Any insight from the experts here would be great!

Thanks for reading!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/12/2010 7:39 AM (GMT -7)   
Well alot of folks have had a hard time getting diagnosed. One of the best tests that help them get diagnosed was the pillcam. So if that does not show Crohns, I would more than likely say you don't have Crohns. But alot of folks do have the disease in the small intestine where the cscope can't reach, so this test might be the one to get you finally diagnosed. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 1/12/2010 7:51 AM (GMT -7)   
I had normal colonoscopies up until a year ago myself. Eventually, it will show up. Did they check you for celiac disease to rule that in or out? Have you had a ct scan? My colonoscopies in previous years were negative but the ct scans showed inflammation before the scope and biopsies showed inflammation. I had very similar symptoms to yours, so hang in there. I have been on colazal for a year without much help so I have to get a sigmoid scope again on friday to see what is up. You'll find a lot of support on this forum, the folks here are helpful and know their stuff. Good luck and keep us posted about your pillcam results.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 

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