Hi everyone. I wanted to share my story and hopefully get some advice. My Crohn's journey has been rather atypical. Until recently, I never had the usual symptoms, or so I thought. I developed a blood clot (DVT) in my leg and several PE's in my lungs about a year and a half ago. I was on coumadin for a few months and I did have rectal bleeding which was most likely from a hemorrhoid or an anal fissure I had recently developed. My internist suggested I have a colonoscopy after I was off the blood thinners just to be sure. The GI doc said everything looked okay but he saw some inflammation in my TI and took biopsies. I got a call from his nurse a few weeks later saying my biopsies came back as possible early or mild Crohn's and that my doc wanted me to have a blood test (prometheus). I didn't really understand Crohn's and because my life was crazy at the time and I wasn't experiencing any symptoms, I never had the blood test or followed up with the doctor.
Fast forward to my annual physical exam this fall. I mentioned the GI results to my doctor and she said I should follow up, that it might be nothing, but she didn't seem too concerned. I had blood work done there and she found that I was anemic and severely iron deficient. She started me on iron supplements. When I went back for a follow up in February, I asked her to test my B12 and D levels since I had been eating a Vegan diet for about 6 months and I just wanted to be on the safe side. She was shocked to find my Vit D levels undetectably low but my B12 was fine. She suggested I might have an absorption issue and sent me back to the GI, and I finally went. He did an upper endocopy (which showed gastritis and esophogitis), a prometheus test, and a capsule endoscopy. I got a call from a nurse that in addition to my positive biopsy last spring, I had a positive prometheus test and that my Doctor wants to see me 4/8/13 to discuss where to go from here. I still haven't heard the results of my pillcam but will know more in April.
This has all been shocking for me because I have never had the typical symptoms but in retrospect, I believe the blood clots and anal fissure I had were related to the Crohn's and I also had an abscess on my buttocks about five years ago and had to see a colorectal surgeon to take care of that. I have had what feels like a stitch in my lower right abdomen for awhile but never knew what to make of it. Sorry for rambling but it is still a little shocking and a little overwhelming. I have no idea what to expect when I see the doctor. Will I definitely need to be on medication? Any ideas as to what I might be taking? I already eat a pretty good diet and take probiotics which I believe had kept some of the symptoms at bay. Is there anything else I should be doing? Any questions I should be asking the doctor?
Thank you all for reading and for creating such a supportive, informative community. I was such a relief to find this board.
Amy
Fast forward to my annual physical exam this fall. I mentioned the GI results to my doctor and she said I should follow up, that it might be nothing, but she didn't seem too concerned. I had blood work done there and she found that I was anemic and severely iron deficient. She started me on iron supplements. When I went back for a follow up in February, I asked her to test my B12 and D levels since I had been eating a Vegan diet for about 6 months and I just wanted to be on the safe side. She was shocked to find my Vit D levels undetectably low but my B12 was fine. She suggested I might have an absorption issue and sent me back to the GI, and I finally went. He did an upper endocopy (which showed gastritis and esophogitis), a prometheus test, and a capsule endoscopy. I got a call from a nurse that in addition to my positive biopsy last spring, I had a positive prometheus test and that my Doctor wants to see me 4/8/13 to discuss where to go from here. I still haven't heard the results of my pillcam but will know more in April.
This has all been shocking for me because I have never had the typical symptoms but in retrospect, I believe the blood clots and anal fissure I had were related to the Crohn's and I also had an abscess on my buttocks about five years ago and had to see a colorectal surgeon to take care of that. I have had what feels like a stitch in my lower right abdomen for awhile but never knew what to make of it. Sorry for rambling but it is still a little shocking and a little overwhelming. I have no idea what to expect when I see the doctor. Will I definitely need to be on medication? Any ideas as to what I might be taking? I already eat a pretty good diet and take probiotics which I believe had kept some of the symptoms at bay. Is there anything else I should be doing? Any questions I should be asking the doctor?
Thank you all for reading and for creating such a supportive, informative community. I was such a relief to find this board.
Amy
