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Crohn's Disease Forum » Tests for IBD » IBD? IBS? Inconclusive results so far


10-09-2015, 07:46 AM   #1
CharlotteLucas
 
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Join Date: Sep 2015
IBD? IBS? Inconclusive results so far

Symptoms

IBS diagnosis since 1999, long time high fiber diet
Pain got worse about 3 years ago. Pelvic pain.
Differential diagnosis of Interstitial Cystitis based on symptoms. Did not have cystoscopy.
Hysterectomy in Dec. 2013 did not relieve pain.
IC flared after surgery. Early 2014 eliminated spicy and acidic foods, alcohol, tomatoes etc. for IC diet. Pain is worse if I cheat but still persists if I don't.
I start losing weight. Since July 2014 I have now lost 100 pounds from not wanting to eat. At first I am glad. I eat fiber to help with IBS. I start eating prunes in August 2015. By this point I am eating way way less than other people. Pain is insane.
September someone mentions Crohns and I finally go to doctor. I put it off because it is just IBS. But this is different than before.
CT scan shows fatty liver from rapid weight loss and small sliding hiatal hernia.
Endoscopy shows nothing, maybe acid reflux in lower esophagus.
Colonoscopy yesterday did not show Crohns. Some internal hemorrhoids.
Next is camera pill to look at small intestine.
Blood work normal, stool samples normal.
Pain specifics:
Every day pain, often lower right abdomen, sometimes middle low abdomen, sometimes upper left. Noisy gurgles.
Diarrhea
Constipated feeling even when empty
Evacuation is painful. Diarrhea is painful.
No blood in stool.
I have hardly any interest in food.
I now weigh 156. I could lose 10 or 15 more pounds to get to "normal" BMI, and a ways before that before I would be too thin,BUT a person does need to eat and I don't see this trend turning around.
I am eating way less than 1000 calories a day. One week averaged about 600. At the end of that week I passed something very painful and then was able to eat slightly more.

So far nurses are handing me brochures on high fiber low fat diets. I have been starting with protein since I can eat so little. Nutritionally dense foods. I was eating raw carrots but they hurt too much. Once I think carrots came through without being digested. Chewed up bits on bottom of toilet.

So could it still be Crohns just in small intestine? I don't want it to be, but I cannot go on like this, and if all they offer me is advice to eat more fiber I will go insane. I looked at a box of fiber cereal I had been eating and literally felt fear.

Also is it weird that I have only laid eyes on the doctor twice just before scopes? I want to talk with the doctor about my symptoms! Not just the nurses. So that is why I am here. Thanks all.
10-09-2015, 08:08 AM   #2
KLea
 
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Join Date: Dec 2013
Location: Chattanooga, Tennessee
What blood work have you had done? I see you said it was all "normal" but what was tested? Have you been tested for Celiac? Inflammation/the Prometheus IBD panels? I'm so sorry you are struggling!
10-09-2015, 08:25 AM   #3
CharlotteLucas
 
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I have not gotten good answers on exactly what blood and stool tests they did. I know celiac was negative and C-Diff also. But there were four bottles for both samples. I am in the U.S. so I don't know how our doctors differ from yours. So far I just have chipper nurses telling me I am fine nothing to worry about and eager to get off the phone. What exactly was tested for? "Just different kinds of bacteria." I don't know if they did calprotectin b/c I couldn't remember what it was called to ask.
10-09-2015, 08:44 AM   #4
KLea
 
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Join Date: Dec 2013
Location: Chattanooga, Tennessee
Hmmm, I think I would call the nurses again and ask for a listing of what's been tested. I don't see why they couldn't provide that to you. I was just curious about your tests because our paths sound similar. In my case, the colonoscopy showed nothing - but my blood work showed elevations and positive dna markers and I had all the classic symptoms so my GI diagnosed me as "early stage." Now, it's a more definite diagnosis since I've responded to treatments. Stay strong - if your current doctor isn't answering your questions adequately and helping you feel confident in what's being done and diagnosed, find someone else!
10-09-2015, 09:27 AM   #5
CharlotteLucas
 
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Join Date: Sep 2015
Thank you!
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