Hello everyone, this is my first post and I don’t really know what I expect, but I hope to learn from each of you. I was hospitalized in June 2008 for what I initially thought was food poisioning (vomiting, stabbing stomach pains), but when the vomiting would not stop after about 12 hours and the pain became unbearable I was taken to the ER. By the time I arrived at the ER I couldn’t even sign my name or sit in a chair. The pain was unbearable; the ER doctors sent me for an immediate CT (thinking it was my appendix… it wasn’t). I then went through a series of other tests including two additional CT with dye (one in my veins and one ingested). The second round of scans showed what appeared to be two blockages in my small colon, and I had a paralytic ileus. I was admitted to the hospital and had an NG tube inserted, which didn’t stop the violent vomiting. At this point, I was vomiting orange stuff (stomach juices I suppose). The pain and nausea meds were not helping. Finally, I was given morphine, which knocked me out for about three hours.
After waking, I had finally stopped vomiting and the pain was subsiding; new scans showed the obstructions to be lessening or reducing in size. The doctor decided that he was going to stop the suction from the NG tube and if I got sick again, he recommended exploratory surgery, (I was not going for that); if I didn’t get sick he would start me on a light liquid diet.
Long story short, I didn’t get sick again, had a small bowel movement and left AMA after they wanted to proceed with the surgery.
I went to my family doctor who performed a test to check for my probability of having Crohn’s (I can’t remember the name of the test), but the results indicated that I had an 82% probability of having Crohn’s. I was then referred to a GI Specialist who insisted that I undergo a colonoscopy, which I didn’t understand because the problem was not in my large colon. The colonoscopy did not show any signs of Crohn’s; however, she diagnosed me with the disease based on the blood test results. She put me on a high dose of Nexium and said if I had any other issues the next step would be the camera pill.
Fast forward to two months ago… I have had no appetite since the initial incident, I often have to force myself to eat, and when I do it hurts. So I go back to my family doctor who test me for several things from problems with my pancreas to HIV. All tests came back okay with the exception of the HIV antibody test – indeterminate. I was told there could be many reasons for this and I was scheduled for a retest in six weeks… next test indeterminate! I was then referred to an Infectious Disease Specialist to have my RNA and viral load check to make a diagnosis. He seemed to believe that an autoimmune disease was causing the erratic blood test results. I’m still waiting to hear the results from the RNA sequencing.
Now, I am being referred to another GI Specialist to swallow the camera pill. I am so tired of doctors, tests, needles, and feeling so bad. I have lost about 60lbs since the first incident without trying, and I cannot gain weight. I am finding it harder and harder to cope with the pain, fatigue, and general stress.
Sorry for the long post, but this is the first forum I’ve found in which I feel comfortable. Have any of you had a similar experience? Any suggestions about how to cope, gain energy, or feel just a little better (physically and emotionally)?
Thanks,
Jason
After waking, I had finally stopped vomiting and the pain was subsiding; new scans showed the obstructions to be lessening or reducing in size. The doctor decided that he was going to stop the suction from the NG tube and if I got sick again, he recommended exploratory surgery, (I was not going for that); if I didn’t get sick he would start me on a light liquid diet.
Long story short, I didn’t get sick again, had a small bowel movement and left AMA after they wanted to proceed with the surgery.
I went to my family doctor who performed a test to check for my probability of having Crohn’s (I can’t remember the name of the test), but the results indicated that I had an 82% probability of having Crohn’s. I was then referred to a GI Specialist who insisted that I undergo a colonoscopy, which I didn’t understand because the problem was not in my large colon. The colonoscopy did not show any signs of Crohn’s; however, she diagnosed me with the disease based on the blood test results. She put me on a high dose of Nexium and said if I had any other issues the next step would be the camera pill.
Fast forward to two months ago… I have had no appetite since the initial incident, I often have to force myself to eat, and when I do it hurts. So I go back to my family doctor who test me for several things from problems with my pancreas to HIV. All tests came back okay with the exception of the HIV antibody test – indeterminate. I was told there could be many reasons for this and I was scheduled for a retest in six weeks… next test indeterminate! I was then referred to an Infectious Disease Specialist to have my RNA and viral load check to make a diagnosis. He seemed to believe that an autoimmune disease was causing the erratic blood test results. I’m still waiting to hear the results from the RNA sequencing.
Now, I am being referred to another GI Specialist to swallow the camera pill. I am so tired of doctors, tests, needles, and feeling so bad. I have lost about 60lbs since the first incident without trying, and I cannot gain weight. I am finding it harder and harder to cope with the pain, fatigue, and general stress.
Sorry for the long post, but this is the first forum I’ve found in which I feel comfortable. Have any of you had a similar experience? Any suggestions about how to cope, gain energy, or feel just a little better (physically and emotionally)?
Thanks,
Jason
