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Crohn's Disease Forum » Support Forum » Vent Away » Agravted my test keep contradicting themselves!!!>:(


07-02-2013, 04:54 PM   #1
SheilaLandtroop2013
 
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Agravted my test keep contradicting themselves!!!>:(

Ok so im in the process of being diagnosed, my GI says its a form of IBD and I fit Crohns to a T. but no test comes back positive for. and he cant give me anything to help until I have a diagnosis:/ We have done everything but a exploratory surgery. and the Colonoscopy shows nothing but deep bumps looking things. and the entire colon is thicken, everything from my esophagus to my colon is swollen. My body had created more lymph nodes and they are all enflamed, including my Thymus gland. Radiology keeps saying Pancolitis. im still in pain, have diarrhea, and nauseas. I've lost 35lbs since the end of May. no appetite either. my WB count is way down. Im just frustrated, I know something is going on, and im just not getting any answers! ugh
07-02-2013, 07:18 PM   #2
Clash
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So sorry to hear that you aren't getting anywhere with testing and obtaining a diagnosis.
So all of your blood work, except WBC came back normal? As well as, biopsies from endoscopy/colonoscopy? Have you had a fecal calprotectin stool test to test the level of inflammation in your digestive tract? Less accurate but have you had the Prometheus blood test?

I do hope you are able to get some definitive answers soon and able to receive some type of treatment to get you feeling better! Hugs!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-02-2013, 07:53 PM   #3
Ihurt
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Idont understand why your GI wont treat you. I mean if he is saying he is sure you have IBD, and especially if your colonoscopy showed thickening and inflammation, well that is definitely something. I mean I don't get why he is letting you suffer. Maybe get another doctor and opinion...










Ok so im in the process of being diagnosed, my GI says its a form of IBD and I fit Crohns to a T. but no test comes back positive for. and he cant give me anything to help until I have a diagnosis:/ We have done everything but a exploratory surgery. and the Colonoscopy shows nothing but deep bumps looking things. and the entire colon is thicken, everything from my esophagus to my colon is swollen. My body had created more lymph nodes and they are all enflamed, including my Thymus gland. Radiology keeps saying Pancolitis. im still in pain, have diarrhea, and nauseas. I've lost 35lbs since the end of May. no appetite either. my WB count is way down. Im just frustrated, I know something is going on, and im just not getting any answers! ugh
07-02-2013, 07:59 PM   #4
Clash
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Some GI's won't treat until they have exhausted the testing so they can "check the box" for CD, using the biopsies as the gold standard. If you do feel you aren't getting any further along then you could get a second opinion.

There have been occasions that someone was dx'ed with CD to only learn later they had TB of the GI tract, Yersinia, or some other infectious colitis, it shouldn't happen but it does from time to time. Most people become really concerned about the side effects of some of the CD meds, the most effective ones are really strong drugs and GIs can be apprehensive about treating with such drugs when they aren't certain of the dx. Although, with all the GI involvement it might be you need one of the stronger meds.

I sure hope you are able to get to the bottom of this soon!
07-02-2013, 08:21 PM   #5
xmdmom
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I missed the beginning of your story. Did you have endoscopies with biopsies that were consistent with Crohn's? When you said all your lymph nodes are enlarged, do you mean on CT scan (in your gi tract) or all around your body? Has anyone discussed doing a biopsy of a lymph node?
07-02-2013, 08:33 PM   #6
SheilaLandtroop2013
 
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They have done all of it. and yes they have done biopsies but they came back normal except they said I had GERD but then I got a scan and it showed no sign of GERD. and they said while they were inflamed they weren't big enough to do a biopsy. Im going to Childrens the 15th. I know something is going on, because ive had this problem forever I just never gave it any thought, until I had a flair for a month straight that ended up getting me in the hosp which started all of this.
07-03-2013, 06:00 AM   #7
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Idont understand why your GI wont treat you. I mean if he is saying he is sure you have IBD, and especially if your colonoscopy showed thickening and inflammation, well that is definitely something. I mean I don't get why he is letting you suffer. Maybe get another doctor and opinion...
They usually won't treat unless the diagnosis is certain. The medications used for IBD come with a lot of risks and side effects, and without a diagnosis they can't work out whether the potential benefits of treatment are worth the risks. And similarly with diagnosis - just because the symptoms fit, you still need some evidence from test results to make a diagnosis of Crohn's.

SheilaLandtroop2013: did your GI tell you whether the thickening and swelling of your colon is significant? Sometimes they discover abnormalities during tests, but although things are abnormal they're not actually responsible for symptoms or indicators of disease. This could be why you've had abnormal findings but your doctor can't use them to diagnose a disease.

You said you've had diarrhoea, nausea and pain. These are less critical in terms of diagnosing digestive illness than the fact that you've lost weight (as long as the weight loss is unintentional), as weight loss can indicate a more severe problem, whereas diarrhoea and pain can be harmless (though they still affect quality of life, doctors are less concerned about that). Do you know if your weight loss is from lack of appetite and eating less, or are you not absorbing calories?
Have you had any bleeding from your digestive tract?

You should be prepared for the fact that diagnosing an illness can take a long time, and a number of tests. I know you want answers but you'll only end up feeling more frustrated if your expectations are unrealistic.

Have you talked with your doctor about trying to control your symptoms in the mean time? They are very unlikely to prescribe the harsh meds used for Crohn's as I mentioned above, but there are safer treatments for diarrhoea and nausea. Loperamide can help with diarrhoea and is a very safe drug - you can buy it without a doctor's prescription. You can also ask your doctor for domperidone for nausea. It does have a number of potential side effects, but it's far safer than most Crohn's meds and my doctors were happy for me to take it before I had a diagnosis. There are also some medications you can buy without prescription for travel sickness that can help with nausea more generally. Have you tried any pain killers? Again, there are a number of options there which do not have high risks for complications.
07-04-2013, 02:26 AM   #8
SheilaLandtroop2013
 
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yeah its completely unintentional. But I rarely eat anything because im either nauseous or I have no appetite. Im just tired of dealing with this. I want to start feeling better and being able to leave my house. I feel like crap all the time. And my dr. thinks its Crohns esp. because it runs in my family too. my mom has it so does many of my uncles and cousins. and some on my dads side. I literally have every single red flag for it but nothing comes back to help us, it seems the tests are only bring more questions and confusion not answers.
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