Newbie would like some opinions/advice

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bluebirdkjt
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/21/2008 5:56 PM (GMT -7)   
Hi all,
I am a children's nurse in UK and am currently being investigated for IBD after being made to go to my Dr in Oct 06 by a friend with chron's. I have frequent diarrhoea (up to 15 times a day on a bad day) accompanied by abdominal cramps. I pass both mucous and blood on occasions and now have aching hands and feel tierd for much of the time. I have so far had 2 colonoscopies, barium follow through, white cell scan and blood tests. The barium and white cell scan both showed possible inflammation in the ileum/terminal ileum but both colonoscopies came back negative so my Dr's wont make any sort of decision. I was started on asacol but have now been changed to pentasa and take maxalon for nausea, the pentasa has improved my symptoms.  Dr at clinic also wanted me to have calprotectin test but would take time to arrange, i managed to get a home version of test from children's GI specialist at work which was negative and wanted to know if anyone else has used these? does this give definate no to IBD as its a one off test? Should this test be repeated? anyone got any other ideas?
 
Thanks
bluebirdkjt   confused

LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/21/2008 7:20 PM (GMT -7)   
Hi bluebirdjt

I don't know anything about the calprotectin tests, but just wanted to let you know that you're not alone! Someone correct me if i'm wrong, but I believe a lot of us were misdiagnosed or ignored by our PCP's and GI's for many years before being diagnosed. I was told I had growing pains, anxiety, stress, not eating enough fiber, Irritable bowel, anorexia (my personal fav) and a smathering of other things before I got the correct Crohn's diagnosis. And even then, sometimes they'll only say "resembles Crohn's" in the medical records. Argh! Not that I'm saying we like being diagnosed with Crohn's, it's just nice to put a name to a monster.

Did they do biopsies with the colonoscopies? They don't make it up into your small bowel with the scopes, so you never know if you have inflammation up there. I can't say I know much about Pentasa, I haven't been assigned that drug. At least not yet! Is your "Dr" that you mention a PCP or a GI folk? If not GI, you should see one.

Also, my early symptoms of Crohn's were very similiar to yours except the diarrhea (I was originally constipated). but the abdominal cramps and the blood and mucous are the same. even the aching joints and fatigue. I hope you get some relief and answers soon.

Cheers
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/21/2008 7:57 PM (GMT -7)   
i've never heard of the test either. hopefully someone can help you. by the time i was diagnosed i was waaaay gone...so just make sure that even if u start feeling better u still get checked out
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/21/2008 8:04 PM (GMT -7)   
Hi bluebirdkjt...I'm afraid that I'm also unfamiliar w/ the test that you mentioned. I did notice, however, that the drugs you are taking (Pentasa, previously Asacol) are generally prescribed to people w/ Ulcerative Colitis vs. Crohn's. Bloody diarrhea is also more of a symptom of UC. Often, doctors have trouble differentiating between the 2 diseases, in the beginning. At the very least, I would think that your doctors would advise you to have an appendectomy (assuming that you haven't already) in order to rule out appendicitis & to allow them to view the ileum. Generally, anyone w/ Crohn's or Colitis eventually has their appendix removed to avoid misdiagnosing abdomenal pain as strictly IBD (Inflammatory Bowel Disease). Meanwhile, make sure that you're seeing a top GI (for my ileostomy, I was referred by my GI to one who has dealt w/ more advanced cases). Lastly, there are numerous tests that are used to diagnose IBD...25+ yrs. ago I had both upper & lower GI's, ultrasound, CAT-Scans, different scopes including colonoscopy, blood work & probably a few others. Today, it seems that most people are more readily diagnosed & fortunately, the doctors usually go straight to the colonoscopy & then move backward. Hopefully, you will get a definitive diagnosis within a short time; otherwise, I would seek a 2nd opinion. Good luck & keep us posted!  tongue    
Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/21/2008 9:29 PM (GMT -7)   
I hadn't heard of your test but did an internet search for calprotectin ELISA. Very interesting! I am learning so much from this board. WOW. I'm only writing what I was able to gather from reading. I'm sure your doc and you will understand/discuss more. This test is looking for fecal calprotectin plasma (made of certain proteins--I think) that is often high in those with IBD. Has something to do with neutrophil activity and immomodulating activity in the body. Has recently gained respect and popularity especially because it is non-invasive. Keep us updated--I hope you get a diagnosis soon.

Just as LavenderBlue wrote, this disease can be very evasive. I, too, remember a doc asking "if there was anything I needed to tell him" or anything I was worried about. I was misdiagnosed with anorexia, appendicitis, anxiety, etc..

Best of luck to you.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa

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