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Feeling so tired & scared of diagnosis

Hi! :Flower:
My name is Callie and I am a 22 y/o student in Atlanta. I've only been seeing a gastroenterologist since December 2015. I was first seen then for nausea, vomiting, diarrhea, regular fever, and stomach pain. I had previously been prescribed Zofran and Phenergan for persistant nausea, beginning in October 2015. I was controlling the diarrhea at home with Imodium. I've had GERD since my early teens and have treated that sporadically with Prilosec. When I saw the gastroenterologist for the first time in December, she put me on Aciphex because my mother has Barrett's Esophagus and my reflux involves frequent regurgitation. So I began the Aciphex, which was briefly switched to Ranitidine to help preserve bone health, but that was ineffective. Went right back to Aciphex, but it has never really controlled my symptoms. Starting about two months ago in April I started having really bad post-nasal drip and it's creating a weird feeling of not being able to swallow completely and not being able to clear my throat. So that's my history with esophageal symptoms..but my reflux issues are a joke compared to the stomach pain and diarrhea that I have been having since October. I have on average 6 or 7 loose BMs per day with a scary looking amount of mucus.

When I saw the doctor in December, she suspected IBD right off the bat given my age and symptoms and went ahead and ordered a colonoscopy & upper endoscopy. She ordered some blood work as well. Blood work came back showing low ferritin, low RDW, low iron saturation, low-normal B12, vitamin D deficiency. Everything else came back normal. Doc prescribed 2 months of Drisdol and 3 months of SlowFe Iron supplement. Had the colonoscopy with biopsies January 7th. Results were "non-specific inflammation" and no Celiacs disease. She said we would reassess after finishing the Drisdol and iron supplements. I finished them and went back for retesting last month and I was still anemic and my vitamin D only rose from 14 to 19 ng/ml - still deficient. I didn't miss a single dose of either supplement. I also had a CT Enterography in January with contrast which showed evidence of inflammation and "minimal thickening of the small bowel wall- jejunal loops" but on the report it said that it could possibly be just physiological. I'm sorry if any of this info is a little general- my doctor is supposedly a genius but she has absolutely no bedside manner and a horrible office staff, so getting a clear interpretation of my lab and imaging results has been almost impossible.

So when I went to see her two weeks ago after my blood work came back, she told me to do another round of Drisdol and SlowFe. She ordered the Prometheus IBD test, stool test, and amylase/lipase. They have the results of my Prometheus test but all her assistant told me was that it was "negative", and she didn't know enough to tell me anything else. The amylase and lipase were normal, so no pancreatic issues I'm guessing. The stool test showed an abnormal fecal calprotectin value of 145. The fat absorption results were normal. I saw these values on my patient portal. The doctor's assistant called me today and said that my stool test showed that I have "inflammation in my small bowel" and that the doctor had ordered a capsule endoscopy and also called me in a prescription for Uceris. She just told me she would call me once my insurance cleared the PillCam to set up the appointment for that. I'm assuming I'll be doing that sometime this week. FYI I don't know of anyone in my family ever having had Crohns. I tried cutting out dairy and similar basic diet changes but nothing has changed my symptoms.

If anyone has any advice they can give me as far as their own experiences with the diagnostic process, or how to get a better understanding, I would really appreciate it. The doc told me I'm going to have to have IV iron infusions if we can't get the anemia under control by July, and she just gave me the Uceris and her lack of communication has me worried that she'll just start treating me for IBD without ever giving me a diagnosis. I tired of being confused and sick :(

Thank you in advance!
Callie
 
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Maybe you need a second opinion or ask this doctor to give you an answer to the diagnosis. Mine just came out and told me.
 
Location
San Diego
Hmm...based on prescribing Uceris, your doctor might be suspecting either UC or colonic CD. Uceris is the formulation of budesonide that is designed for release via pH in the large bowel. Which in turn does not align with the diagnosis of small bowel inflammation, so I'm a little puzzled.

Entocort is the budesonide formulation for small bowel release, especially in the terminal ileum. And it sounds like your disease is primarily located even farther north than that.

Your results and treatments do not quite add up to a clear answer, IMO. So I suggest you basically sit tight and wait for the capsule camera results. Perhaps those images will provide clear evidence needed to lead the doc to more certain diagnosis and path forward.
 

Lady Organic

Moderator
Staff member
Hi callie.
Is your dr prescribing uceris a gastroenterologist or a GP? You need to be fallowed by a Gastroenterologist, like the doctor who performed your colonoscopy. Wishing you well.
 
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