What next? Please help!

I'm in a flare right now.  I have horrible left sided stomach pain and pain in the center of my stomach, below my ribs and about 4 inches above my belly button.  According to my last colonoscopy (last September) I only have mild to moderate UC in my rectum area.

Everyday, I have violent diarrhea (at least 6-8 times), cramping, blood and mucus.  I try to watch what I eat as I am severely lactose interolent. 

Usually when I use the restroom, the stool is cardboard brown, but there is other liquid in the toilet that is bright yellow.  When I wipe, I mostly see yellow.

I know this might be a sign of bile, but I have had several recent blood tests that reveal my liver and kidneys are functioning normally.  I have also had two stomach MRI's within the last 6 months of each other, the last two weeks ago that said nothing was wrong in my abdominal region.

My current GI believes I may suffer from Crohn's, but he can't get any confirmation from the tests I have had.

I had the bloodwork done that sometimes shows you have it (Crohn's), but not only did it say I didn't have Crohn's, it also said I didn't have UC.  My doctor said that sometimes happens with a small percentage of the population.

I recently had a physical with my regular doctor.  The blood work came back showing my blood count was completely skewed.  My white blood count was high at 12.6 whereas normal is 3.8-10.8.

Though I don't understand any of these medical terms or percentages, perhaps someone will:

Lymphocytes:  14.4      Normal:  18.0-42.0

Grunulocyte:  83.3       Normal:  50.0-70.0

Hemoglobin:  15.7        Normal:  11.7-15.5

Hematocrit:  46.9         Normal:  35.0-45.0

My doctor has now recommended a repeat colonoscopy (I had two last year, the latest in September) along with an endoscopy.

He said if that doesn't reveal anything, he wants me to swallow the camera pill that takes pictues as it travels down your digestive track.

I'm not a rich woman.  Last year, alone, I had 3 MRI's (one for my stomach, one for my back, and one for my brain), two colonoscopies, and one back surgery, in addition to the countless doctor appointments.  Thank goodness I have health insurance, but currently I am spending the majority of my paycheck for medical bills.

I 'know' something is wrong with me.  But where do I go if all these tests prove negative?

 

Unfortunately, I have had these same symptoms all along, as I have had all of these tests. The colonoscopies I have had don't support this pain. 8 weeks ago, my GI put me on 40 mg of prednisone, tapering off each week by 5 mg for a total of eight weeks. The only thing this treatment did for me was give me the puffy cheeks, excess weight, an urgent need to urinate, and sweating. It did nothing for my UC symptoms. Gosh only knows what it did to the rest of my body!

Two weeks ago, I was on:

1 20 mg pill of Lexapro
1.2g of Lialda (4 pills a day)
1 Canasa suppository (at night)
Fish oil capsules
Women's multi vitamin

Unbeknownst to my doctor, I stopped taking the Lialda and Canasa two weeks ago. They're not working!!! Each day, as I bent to examine my 'poop' in the hopes it would become normal, I noticed at least three of the Lialda pills in my stool. Not only were they there, but they were completely whole, maroon miniscule shell included. Not one ounce of the medicine had been absorbed in my system.

I'm getting more and more frustrated with each negative test I hear. It's not that I am hoping for a disease I do not have, but for a diagnosis I can treat.

teachtoreach, I've never had a DR tell me I have Crohn's or UC. I have inflammatory bowel disease. None of the biopsies taken from my inflamed rectum or cecum or esophagus or stomach have been clearly Crohn's, but I have behaved for the last 8 years as if I do have Crohn's, since that is most consistent with what's going on with me.

Ultimately, the treatment for Crohn's is not different from UC. You take meds to treat the portion of your bowel that is inflamed. The trick is, if you have Crohn's, it is not easily visualized since a colonoscopy cannot go higher than the terminal ileum. If you have inflammation higher than that, it might be evident on a small bowel follow through, or an MRI, or most successfully on a pill cam. And then perhaps you can talk about meds that might actually be most effective.

My first GI only saw my ulcerative proctitis because he only used a sigmoidscope. I took Asacol and used mesalamine enemas, which helped some, but not enough. My next GI did a full scope and saw inflammation in the rectum and cecum. He upped my Asacol and kept me on the enemas, and I got better, but not a lot. Then I had a whole cascade of symptoms including joint pain all over, upper GI problems, etc. I switched to Pentasa after a trip down prednisone lane, and that was really the answer for me. Pentasa is targeted a little higher in the GI tract than Asacol - so thinking small bowel got me to a better place physically.

I hope this is helpful. There really isn't a "blood test" for Crohn's. It's a diagnosis made on the basis of biopsy results. You need to treat your illness with more than fish oil.