Hi all & thank you to anyone and everyone who takes the time to read this, and especially to those who may answer.
I am a 25 year old female and since the summer of 2016 I have been very sick. My very first symptom, which progressed into adulthood, began when I was in late elementary school. I developed what I originally believed to be “canker sores,” but I will discuss this symptom further later here. My initial symptoms, which started suddenly & eventually progressed, were initially explainable by a diagnosis of GERD. I was placed on 20mg of Omeprazole in September of that year. By the time I reached my follow up with my GI doctor in February of 2017, I was experiencing my first episodes of chronic diarrhea (sometimes with blood), weight loss, overwhelming fatigue, abdominal pain, especially on the right side, difficulties with eating, and recurrent mouth ulcers. My first GI doctor (whom I am no longer under the care of) did an upper endoscopy in March of 2017, and came up empty on a diagnosis other than gastritis. Biopsies were negative for Celiac Disease. Between March & May when I had my first colonoscopy, I was treated for chronic diarrhea with a battery of drugs inclusive of: Questran drink powder, & Creon, both of which failed to adequately solve my issues. My colonoscopy in May of 2017 was also inconclusive outside of internal and external hemorrhoids and with negative biopsies for Microscopic Colitis. Treatment for chronic diarrhea was tried with a significantly reduced dosage of an antidepressant, which only made me fall asleep. I was diagnosed by this doctor with IBS-D. At this time, my mouth ulcers were considered of unknown origin. My GI doctor could not figure out what they are from.
I respectfully stepped away from his care & visited a plethora of doctors in regards to my progressive oral ulcers, including, ENT, Allergy/Immunology, Dentistry, Primary Care, and Infectious Disease. I do not have Herpes, a viral infection, food allergies (outside of gluten, which I was already aware of & take great care to eat gluten free), HIV, etc.
In October of 2017, I had my first genetic panel testing performed and it was confirmed I have two mutations on the NOD2 gene. In November I visited a Rheumatologist who did a separate panel, which confirmed I have a mutation of HLA B-27. I was diagnosed with Ankylosing Spondylitis. At this time, I was also diagnosed with an iron deficiency anemia of unknown origin.
In February of this year I began seeing a new GI doctor, whom I greatly respect. He repeated several tests I have already had performed and ruled out that I do not have any autoimmune disease of the lupus type, meaning, my inflammatory markers were not raised in my blood. Just yesterday, I had a repeat upper endoscopy & colonoscopy. I was told everything looked “normal,” but I had several biopsies taken. Although this doctor raised my dosage of Omeprazole from 20mg to 40mg, it is still failing to work. I am suffering I am so tired.
My belief has always been & still aligns with Crohn’s Disease. My mouth ulcers can not be explained by any other disease, and they have become pervasively worse. Since April, I have constantly had at least one ulcer in my mouth, as by the time one is going away, a new one appears. Due to this, I really struggle to eat & my abdominal pain makes it an even greater feat. Please, can someone tell me that Crohn’s can be not present on a colonoscopy sometimes? I fought to have a PillCam performed last year by my previous GI, but it came back clear, too.
My immediate issues are as listed: recurrent, horrific oral ulcers, chronic diarrhea, chronic abdominal pain & distention/fullness, constant fatigue, joint pain, heart palpitations, weight loss, anemia, inability to “wait” to use the bathroom, complications with eating.
Someone please lend a piece of advice, if you could.
Thanks again.