Hi, I'm new here...
I'm 24, new here, but not new to this.
I've been dealing with this since I was about 16 when my gall bladder started to kind of go awry. I had it taken out and that's when the pain started.
I feel like I'm dying from the inside out.
When the pain starts, it is a burning, sharp, I just ate glass, crippling, throw me to the ground, pain. It starts in my lower right part of my stomach, just under my belly button, and then seizes my entire stomach and radiates through my entire body.
I've had constant nausea, unintended weight loss, chronic fatigue, nocturnal BMs, small bouts of fecal incontinence, blood in my stools, blood in my vomit, constant abdominal pain, mucous in my stool, black stools, pain triggered by certain foods, feeling like I haven't fully relieved myself when using the bathroom, pain from not eating enough or too much, bloating.
My joints are often very very sore, but never swollen.
I've come down with pneumonia, bronchitis, upper respiratory infections, sinus infections, (oral)strep B, and oral thrush since December.
I have had a UA done which came back positive for white blood cells, but no Uti.
I have had 2 upper endoscopies, one colonoscopy, and three capsule endoscopies.
My first endoscopy and colonoscopy were done together in January 2017, and came back clear, aside from some mucous in my stomach.
On March 3rd, 2017, I had my 1st capsule endoscopy done, and the report showed "erythematous villi in the proximal jejunum. Visible vessel with petechia in midjejunum. Possible submucosal bulge in proximal ileum."
I was informed that this is inflammation, ulceration, and a possible abscess or tumor, but they weren't sure.
It took 7.5 hours for this capsule to evacuate my body.
Then somehow, when I asked them to go back over these images, no one seemed to know how to locate these files except the black and white images that are "too dark to see anything."
I was immediately sent back for blood work, where a lot of things have come back low end of normal, although from the looks of it my numbers are slowly heading in a negative direction and my WBC is consistently staying in the 9-12 range.
I was sent for a CTE which came back normal.
I was then sent for a patency test to ensure I could completely pass a capsule. The first patency pill got hung up in my bowel loops. And did not ever leave my system until it started to dissolve 30hrs after swallowing it.
They did a second, and that one passed after the 30 hour mark.
I was then sent for a second capsule study, which, after four and a half hours, had still not left my stomach and they had lost visualization after having a meal. This came back, obviously inconclusive.
It took 42 hours for this capsule to evacuate my body.
Two weeks later, on June 6th, I was sent back for a 3rd capsule study to be placed by EGD.
During my endoscopy, they discovered a 1-2cm Hiatal Hernia, mucous, bleeding and "mildly diffuse" ulceration was found in the "gastric body" and "gastric antrum". I was told this was just "gastritis" and the hernia was likely from all the vomiting I have been experiencing, but they hadn't caught any of this on the capsule study two weeks prior and they could not give me a valid reason why.
They placed the capsule in the the beginning portion of the small bowel, and then removed the EGD tube.
This capsule study came back "clear".
It took 49 hours for the capsule to evacuate my body.
Im now being brushed aside and told it's likely all just IBS and I have no idea what I'm supposed to do, and they're telling me that they have no more tests to run.
I've been dealing with this for seven, almost eight years, if I don't get to give up, then no one else should? How much longer do I have to beg to be heard?
Is this "JUST IBS?"
Is it really possible for all of these things to just manifest out of nowhere and then suddenly disappear?
I really need help.
