Hi everyone, ive been in the hospital over 10 times, with 5 actual admissions, since June 2012. in June, i was admitted to hospital A for 8 days. I had horrible abdominal pain on the right side, it felt like it was in the lower quadrant. they found mesenteric adenitis (swollen lymph nodes) in my abdomen on a CT scan and believed I may have passed a kidney stone. They did an EGD and found some small ulcers, but that was it. They didnt think the stomach infection should cause the type of pain I was having. So they discharged me with the mesenteric lymphadenitis as primary dx.
At this time, I weighed 140 lbs.
I had a few more flare ups of severe pain, I would go to ERs and they said blood work and everything looked fine. I always have a low RED blood cell count and hemoglobin hematocrit. but they said its not low enough for a transfusion. this has remained this way throughout the months.
They would say I had flus, or kidney stones, and send me home.
In November, I had a severe flare up and went to another ER and they decided I had pelvic inflammatory disease. I began throwing up my food from the nausea. So they swabbed my cervix, tried to tell me I MOST LIKELY had chlamydia or gonnorrhea (despite my lack of recent sex and always using condoms). I believed them. they gave me antibiotics and sent me home.
So a few days later, the pain increased. I was hospitalized at Hospital B for 4 days for "PID" (i told them I was just diagnosed with it, so they didnt do additional workup). at this time, I developed new, upper right quadrant pain right below my ribs. it felt like it was inside my ribs. I began throwing up anytime I ate. I began running a low grade fever constantly (99s usually). they did an ultrasound of liver/gallbladder and it was normal.
RBCs and H/H still low. white blood cells remained normal.
I was discharged, still in pain, blood pressure 77/54. they wanted me out.
Thats when it went downhill. I was constantly throwing up, sick. Now, December. By this time, I weighed 110 lbs. Id already lost 30 lbs since June. In December, i went to Hospital C and they did a new test, a HIDA scan. they found biliary dyskinesia and said my gallbladder wasnt functioning well and it needed to come out. So they took it out, and i was in extreme pain. I spent 3 more days in the hospital for the extreme pain and then was sent home. I tried making it at home, but it was increasingly difficult. I began having the sharp jabs in my upper right quadrant, on top of my constant aching pain, I went back to hospital C and they saw nothing wrong in my labwork or scans (CT with contrast) so they sent me home. I saw my surgeon the next morning and he re-admitted me to Hospital C. They refused to repeat any of the tests from that ER night, and put gave me pain medicine that wasnt working. they let me cry for hours in excruciating pain. They were even trying to decrease it after that. A pain doctor tried nerve blocks twice, on the left and right. I had a barium swallow test and another EGD. they found Barrett's Esophagus (with low grade dysplasia) (new since June), severe inflammation, reflux. but my ulcers healed. My stools had become clay colored. I began sweating, soaking the sheets at night. I also began severely itching. They tried switching me from IV dilaudid to dilaudid pills. 4mg would barely touch my pain. They were also trying GI medicines- levcin, carafate, protonix. They decided to put an intrathecal/epidural in me with morphine. The pain was better controlled. They switched the medicine to dilaudid, thinking that my itching was from morphine.
I continued itching and sweating. They told me that when I transferred to their main campus, Hospital D, i would get better testing. I felt sure that they would find whats wrong.
After I transferred, they immediately turned off my intrathecal pump. They thought it was crazy that I had it. They put me on a PCA pump for dilaudid, a small dose. I required multiple "clinician doses" where the nurse bumps it up a few times. Then, the next morning, a nurse practitioner took out my intrathecal line and they stopped my PCA. they gave me a prescription for dilaudid pills, told me 80% of abdominal pain doesnt get diagnosed, and sent me home with a prescription for a taper dose 4mg dilaudid.
The pain is HORRIBLE. ive tried moving around, but it barely helps. they said I have fluid in the space where my gallbladder used to be. but it shouldnt cause me this pain. My family wants me to get off my meds, but they are the only thing helping me at all. I cant taper. I saw my regular doc today and he gave me a GI cocktail. 3 doses already, it doesnt work. I wondered if I have a lymphoma or castlemans disease, because Ive lost 35 lbs now, i still have nausea and pain. please help
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